Beruflich Dokumente
Kultur Dokumente
Section 1 Section 5
Foreword and Introduction 2 Project outcomes 98
5.1 Outcomes for Black and minority
Section 2 ethnic individuals 98
Executive Summary 8 5.2 Outcomes for Black and minority ethnic
community organisations 101
Section 3
5.3 Outcomes for Black and minority ethnic
Background, method and sample 14
communities: results from a survey of
3.1 Delivering race equality in mental health care:
community development workers 106
background and context 14
3.2 The ISCRI Community Engagement Model 16 Section 6
3.3 The NIMHE Community Engagement Project 19 Recommendations from community organisations 116
3.4 Methods used to compile this report 28
References 126
3.5 Sample characteristics 29
Appendices 129
Section 4
1. Participating community organisations in each
Key themes and findings 33
strategic health authority area 129
4.1 Fear of mental health services 33
2. Extract from the information pack sent to
4.2 Effective therapies and interventions 37
community organisations 131
4.3 Culturally appropriate treatment
3. Criteria for shortlisting community
and interventions 46
organisations’ applications 133
4.3.1 Language 48
4. Contact details of the community organisations
4.3.2 Faith and religion 56 that participated in this project 134
4.3.3 Food 60 5. Questionnaire for community development
4.3.4 Gender 61 workers 144
4.3.5 Ethnicity of mental health service staff 70 6. Key of commentaries 147
4.3.6 Racism in mental health services 74
4.4 The journey towards recovery 78
4.5 Service user and carer satisfaction with
mental health services 79
4.6 A more active role for Black and minority
ethnic communities and service users 88
4.7 Older people 91
4.8 The Count me in census 94
section 1
Foreword
Professor Lord Patel of Bradford OBE To deliver this, leadership from the top was required.
The NIMHE Community Engagement Programme provided
Head of International School for Communities, such leadership and it is important to recognise that and
Rights and Inclusion to celebrate what it achieved. This report highlights how
far we have come in a relatively short time. But as we
It is a real and very personal pleasure for me to welcome this read it we can see that there is still a long road to travel –
report, documenting the process, findings and outcomes from despite the undoubted merits of the DRE programme,
the National Institute for Mental Health England (NIMHE) there is still a lot more to do and one of the main areas is in
Community Engagement Project, commissioned and community engagement.
conducted as part of the wider Delivering Race Equality
[DRE] in Mental Health Care Programme. The accumulated So this report represents an opportunity for us to take stock,
findings of the studies make it crystal clear that services will to reflect and learn from its lessons as we continue the journey
not change without the active involvement of communities. to reach the new horizons ahead. And, finally, to pay tribute to
the efforts and achievements of those, both within communities
As part of all the work that I have undertaken over the course and within mental health services, who made possible the
of my career, the real value and importance of communities, exciting and innovative work it describes.
including service users and carers from across the full range of
communities, has been paramount. I know firsthand just how
big a difference they can make and how essential it is that we
work fully with local communities and the voluntary sector in
partnership with real and effective engagement.
Reading this report took me back to the early days when Professor Lord Patel of Bradford OBE
colleagues and I were first devising the DRE strategy and January 2010
implementation programme, with its three ‘building blocks’
of: better quality information, more intelligently used;
appropriate, sensitive and responsive services; and increased
community engagement.
section 1
Introduction
Melba Wilson The report locates this work in the context of current mental
National Director, DRE health policy, practice and service provision, and includes
National Programme Lead, Mental Health Equalities, commentaries from a number of mental health experts.
National Mental Health Development Unit (NMHDU) The report’s authors – Jane Fountain and Joanna Hicks – have
The community engagement strand of the DRE action plan is done an excellent job in capturing what is, in effect, a hugely
a significant aspect of the work of DRE. As one of the three rich discourse which characterises the wide variation of how
building blocks of the action plan and programme which communities of diversity and communities of interest engage
developed to implement it, the work on community engagement with and are engaged by services.
is a good barometer to gauge – at a grassroots level – the extent
It contains a number of key messages relevant to the DRE
to which people from Black and minority ethnic (BME)
characteristics. These highlight ways of working to help
communities feel engaged; feel that their views are taken on
ensure less fear of services, access to a balanced range of
board by commissioners and providers of services; and feel
therapies; development of more culturally appropriate
that there is real improvement in how they access and
treatments and interventions, delivered by a workforce and
experience mental health services.
organisation capable of delivering appropriate and responsive
The impetus and rationale for the community engagement services; more self reports of recovery amongst Black and
strand is clear in the DRE action plan. It identified that: minority ethnic service users; information about what is
“Any initiative aimed at improving the healthcare experience needed to help ensure increased satisfaction with services; and
of Black and minority ethnic groups must recognize the leading information about how Black and minority ethnic communities
role that Black and minority ethnic communities themselves can have a more active role in training professionals.
can play. All communities have a role in preventing mental
The community engagement projects were intended to run
health problems and providing an environment where people
over a period of two years, as set out in the DRE action plan.
who have become ill can recover and prosper”.
The report documents the phased approach of the work,
The DRE action plan also stated that: “Black and minority including a pilot programme which began in 2005.
ethnic communities often have to go further, filling the gaps
Jane Fountain and Joanna Hicks describe the very useful
between their needs and NHS mental health service provision”,
model developed by the International School for
[and that] “though sometimes under-resourced and poorly
Communities, Rights and Inclusion (ISCRI), based at the
integrated into the wider mental health economy, the Black
University of Central Lancashire. This set the framework
and minority ethnic independent sector has continued to
whereby participating community groups received
develop innovative services, and has higher patient satisfaction
coordinated facilitation, support, resourcing and training to
ratings than statutory services”.
undertake the work. This was key in helping to establish
The idea of supporting a proactive community engagement and maintain clarity about the task at hand – namely to help
segment was to acknowledge this reality, and to further support ensure that the learning, knowledge and resilience represented
learning across both sectors by integrating the experience, within communities could be effectively channelled to
values, approaches and knowledge of the non-statutory sector influence service delivery.
into the whole system, in order to promote development inside
In commissioning this report on the work of the projects,
and outside the mental health system.
the DRE programme was concerned to ensure that as well
The DRE action plan included provision for investing in a as documenting the work of the projects, it was equally
national scheme of approximately 80 community engagement important to ensure clear learning for the longer term.
projects run by non-statutory organisations across England. This was approached in terms of impact and sustainability
This was as part of a concentrated effort to build capacity in at three levels:
the non-statutory sector, develop partnerships and to offer new
• Personal/individual
and innovative services that meet needs.
• Community
This report presents an analysis of the quantitative and • Strategic and commissioning.
qualitative data from 79 studies which resulted from the
work of the 75 participating community organisations.
It provides a comprehensive overview of the issues that were
explored by the studies in relation to Black and minority ethnic
populations and mental wellbeing, mental health problems,
mental health services and the vision of service characteristics
for 2010 set out in DRE. The report also documents some of
the project’s outcomes for individuals, communities and
mental health service development.
Marcel Vige reflects that the “real dilemma for DRE has
been the need to negotiate the divergent beliefs, views, even
political priorities about the nature of its subject matter”.
“Where does the catchall phrase BME begin and end?”, he
asks. Is ethnic disparity an aberration arising from inadequacies
within mental health or an inevitable function of wider
differentials? And to what extent can the ideal of cultural
competency in therapeutic approaches be achieved, whilst
adhering to clinical versions of ‘normality’, and the perceived
need for threat management?
She concludes:
“I am very hopeful that, in time, working in collaboration will
result in equality of access, equality of experience and equality
of outcomes for the BME communities we serve”.
Melba Wilson
January 2010
Note on the terms used in this report International School for Communities,
Black and minority ethnic Rights and Inclusion (ISCRI) University
The authors are very conscious that various terms are used to of Central Lancashire
refer to the many diverse communities in the UK. We have
www.uclan.ac.uk/iscri/index.php
used ‘Black and minority ethnic communities/populations’.
Led by Professor Lord Patel of Bradford OBE, the International
This reflects that our concern is not only with those for
School for Communities, Rights and Inclusion (ISCRI) was
whom ‘Black’ is a political term, denoting those who identify
established in August 2008 by the merger of six existing
around a basis of skin colour distinction or who may face
academic units – the Centre for Ethnicity and Health, the
discrimination because of this or their culture: ‘Black and
Institute for Philosophy, Diversity and Mental Health, the
minority ethnic’ also acknowledges the diversity that exists
Centre for Professional Ethics, the Psychosocial Research
within these communities, and includes a wider range of
Unit, the Centre for Volunteering and Community Action, and
those who may not consider their identity to be ‘Black’, but
Islamic Studies. The International Centre for Sign Languages
who nevertheless constitute a distinct ethnic group, such as
and Deaf Studies (iSLanDS) joined the school in August 2009.
White Irish people.
The work of the school is divided between two interdisciplinary
Mental health problems Centres: the Centre for Psychosocial Research and Wellbeing
Most of the community organisations’ studies referred to in and the Centre for Social Policy and Community Engagement.
this report asked the study participants about their mental The school also supports three Institutes: the Inclusion
health. However, they enquired in a variety of ways: some Institute, which was established as part of the school to
collected data on diagnosed severe mental health conditions continue and develop the work of the now defunct National
such as schizophrenia and psychosis; some simply asked if Social Inclusion Programme; the Institute for Global Youth
study participants were mental health service users; some Leadership and Community Action; and the iSLanDS Institute.
asked for self-diagnoses of, for instance, depression or anxiety;
while others asked participants if they had any difficulties
maintaining their emotional or mental wellbeing. This report
uses the term ‘mental health problems’ as shorthand to cover National Mental Health Development Unit
all of these, unless presenting data on study participants with (NMHDU)
specific mental health illnesses.
The National Mental Health Development Unit (NMHDU),
Mental health services launched in April 2009 (and incorporating a number of former
Although this report contains data on specific mental health NIMHE programmes), provides national support for
services, where the term ‘mental health services’ is used, implementing mental health policy. The NMHDU advises on
it encompasses one or more of the whole range of treatment, national and international best practice to improve mental
care and support services. These include those provided by health and mental health services. It is funded by both the
psychiatrists, psychologists, psychotherapists, GPs, hospitals, Department of Health (DH) and the NHS.
counsellors, community psychiatric nurses, mental health
social workers, complementary and ‘alternative’ therapists, NMHDU’s work is developed through co-production with the
occupational therapists, mental health social workers, key DH and the ten Strategic Health Authorities (SHAs) and
workers, (peer) support groups, befrienders and other support strategic partnerships with other groups such as the NHS
workers, day centres (statutory and voluntary), and services Confederation, the Association fo Directors of Adult Social
for carers of those with mental health problems. Similarly, the Services and the major mental health third sector organisations.
report describes users of these services as ‘mental health
Further information about the work of the NMHDU is
service users’ unless presenting data on users of a specific
availabile on www.nmhdu.org.uk
service, such as inpatients and those receiving counselling.
Community members
The term ‘community members’ is used to describe those who
have not been identified by the study reports as mental health
service users, ex-users or carers of someone with a mental
health problem.
This report documents the process, the findings and the – more Black and minority ethnic service users reaching
outcomes from the National Institute for Mental Health self-reported states of recovery;
in England (NIMHE) Community Engagement Project.
– a more balanced range of effective therapies, such as peer
This project was commissioned by NIMHE (now absorbed
support services and psychotherapeutic and counselling
into the National Mental Health Development Unit/NMHDU)
treatments, as well as pharmacological interventions that
from the University of Central Lancashire (UCLan) and was
are culturally appropriate and effective;
conducted across England between 2005 and 2008.
–
a more active role for Black and minority ethnic
Report Overview communities and Black and minority ethnic service
users in the training of professionals, in the development
• T
he project allowed 547 community researchers,
of mental health policy, and in the planning and
75 community organisations, 935 Black and minority
provision of services; and
ethnic current or ex-mental service users, 344 carers
and 4,472 other community members to contribute –
a workforce and organisation capable of delivering
to the development of mental health policy and to the appropriate and responsive mental health services to
planning and provision of services. Black and minority ethnic communities.
• This report presents an analysis of the quantitative and The six remaining DRE service characteristics essentially
qualitative data from 79 studies conducted by the describe actions by mental health service providers, and it
community organisations participating in the project was not expected that the community organisations would
(section 3.3). It provides a comprehensive overview of address them in any depth.
the issues that were explored by the studies in relation to
Black and minority ethnic populations and mental COMMUNITY ENGAGEMENT (section 3.2)
wellbeing, mental health problems, mental health services • One of the three building blocks of the DRE programme
and the vision of service characteristics for 2010 set out in for change from 2005-2010 was a programme of
DRE. The report also documents some of the project’s community engagement with Black and minority ethnic
outcomes for individuals, communities and mental health populations, to ensure that they had genuine opportunities
service development. In order that the findings could be to influence mental health policy and provision, and to
located in the context of current mental health policy, promote mental health and recovery.
practice and service provision, commentaries were also
• One of the methods of fulfilling the community engagement
elicited from mental health experts.
agenda was to use the community engagement approach
CONTEXT (section 3.1) devised by UCLan. This includes training and supporting
Black and minority ethnic community organisations to
• The context in which the NIMHE Community Engagement
conduct research among their own communities and
Project was conceived, commissioned and conducted was
supporting them to connect with local services by setting
Delivering race equality [DRE] in mental health care[1] and
up steering groups. In this project, steering groups
the Community Engagement Model[2] devised by the
typically comprised local mental health service planners,
Centre for Ethnicity and Health (now the International
commissioners and providers. The regional race equality
School for Communities, Rights and Inclusion) at UCLan.
leads (RELs), appointed by the Department of Health to
• The focus of the community organisations’ studies was play a key role in moving forward the DRE action plan,
on one or more of the twelve interrelated DRE service were also active in supporting the project.
characteristics. This report presents data on six of these
• A total of 547 community researchers were recruited by
characteristics:
the community organisations to collect data for the project.
– less fear of mental health services among Black and Of these, 48 (9%) were previous or current mental health
minority ethnic communities and service users; service users and nine were carers of service users.
– increased satisfaction with services;
[1] Department of Health (2005a) Delivering race equality in mental health care: an action plan for reform inside and outside services and the
Government’s response to the independent inquiry into the death of David Bennett. London, Department of Health
[2] Fountain, J. Patel, K. Buffin, J. (2007) Community engagement: The Centre for Ethnicity and Health model. in Domenig, D. Fountain, J.
Schatz, E. Bröring, G. (eds.) Overcoming barriers: migration, marginalisation and access to health and social services. Amsterdam, Foundation
Regenboog AMOC, pp. 50-63
THE SAMPLE (section 3.5) Although talking therapies were most often reported to
• The community researchers collected data from a sample be the most effective accompaniment to, or substitution for,
of 6,018 study participants, comprising 5,751 Black and treatment with medication, this was not consistently reported
minority ethnic community members – including 935 across the different ethnic groups. Some Black Africans, other
current or ex-mental service users and 344 carers – and 267 asylum seekers and refugees, and Irish people (including
mental health service providers. Travellers), did not see any value in talking about their
situation and feelings. A minority of the study participants
• The ethnicities of the sample were reported as: with mental health problems, across all the ethnic groups,
– 40% Asian or Asian British; reported the effectiveness of complementary therapies.
– 24% Black or Black British; The majority of the study reports – across ethnicity, age
and gender – clearly showed that mental health service users
– 17% White or Other White (such as Romany Gypsies, thought that social interaction and taking part in activities
Irish Travellers, Irish people and Ashkenazi Jews); maximised the effectiveness of their prescribed treatment.
– 7% Chinese; Services from voluntary and community organisations were
particularly valued for the provision of opportunities for
– 4% Mixed (mainly White and Black African or White socialising, befriending and participation in activities such as
and Black Caribbean); and outings, lunch clubs, exercise and discussion groups.
– 8% Other (including Cypriot, Iranian, Kurdish, Turkish,
Vietnamese and Yemeni). Culturally appropriate treatment and interventions
(section 4.3)
Almost half (46%) of the community member sample described A culturally competent service operates effectively in different
their religion as Muslim, and 29% as Christian. cultural contexts so that the needs of all members of their
target population can be met by equitable access, experience,
FINDINGS (section 4) and outcome. The accumulated data across the study reports
Fear of mental health services (section 4.1) point to a strong need for greatly increased cultural competence
Fears of mental health services differed according to the level by mental health services.
of the study participants’ experiences of mental health Study participants raised a number of practical issues in terms
problems and treatments: of services’ cultural competence: language, faith and religion,
– Those with little or no experience of mental illness food, gender, the ethnicity of staff and racism. It is not intended
reported that their biggest fear of seeking help was not to suggest that these categories comprise the entire range of
what might happen to them in mental health services, the elements that define cultural competence, nor that they
but rather the stigma, shame and the social repercussions exist in isolation from each other or from the issues raised
(such as the negative effect on marriage prospects). elsewhere in the report.
– The biggest fear of those who had direct experience of – Language (section 4.3.1)
services, particularly as inpatients, was re-engaging Community member study participants reported fluency in
with these services. They were particularly afraid of a total of 131 languages and dialects. Some of the study
being over-medicated, that services would breach participants – especially elderly people – could neither
confidentiality, and of developing further symptoms and read nor write in any of the language(s) they spoke.
illnesses after contact with other service users. The inability to speak English was reported to be a major
factor in the social exclusion of some Black and minority
Effective therapies and interventions (section 4.2) ethnic people, and that this adversely affects their mental
Study participants and the community organisations strongly
health. This was particularly (but by no means exclusively)
criticised the unbalanced approach to treatment, with its over-
reported among some Black Africans and older generations
reliance on medication, which had unwanted side-effects.
of Chinese and South Asian people.
The majority of the mental health service users who had
been treated only with medication thought that other and/ Language was identified as one of the major barriers
or additional therapies would have made their treatment (or, in some reports, as the major barrier) to mental
more effective. However, it was reported that a choice health service access by a large proportion of service
and combination of therapies were not routinely offered to users, carers, community members and service providers.
service users. Communication difficulties throughout the journey through
mental health services were identified, including at the
start, when a person tries to explain their symptoms. These
difficulties were perceived to lead to incorrect diagnoses
and to inappropriate and unsuccessful treatment.
A lack of professional interpreters was reported, and many Many of the study participants identified mixed gender
study participants had little confidence in those they had services as a barrier to mental health service access,
been allocated, mainly because the interpreter did not have especially (but not exclusively) facing women, particularly
any knowledge of mental health issues and/or did not Muslims and Orthodox Jews. These participants therefore
understand the patient’s culture. When an interpreter was wanted gender-specific mental health services, and some
not available, patients who could not communicate in wanted these to be provided in female-only or male-only
English could not use a service on their own and relied on spaces.
family, friends and contacts in the community (such as
Overall, the study participants wanted to be treated by a
those from community organisations and places of worship)
mental health professional of the same gender as
to interpret.
themselves, or to have a choice. However, the proportion
– Faith and religion (section 4.3.2) of participants wanting this varied across the studies and
Dissonance between western psychiatric models of mental between ethnic groups and genders, although there are
ill health and religious beliefs was reported, especially by indications that this was more of an issue for females
Muslims, Orthodox Jews and Christians. Statutory services than for males.
were criticised for not taking faith and religious beliefs
– Ethnicity of mental health service staff (section 4.3.5)
sufficiently into account when diagnosing and treating
The major expressed need identified by this project was
patients: consequently, religious practices can be
for mental health services and staff that are empathetic
misinterpreted as dysfunctional behaviour and service
and sensitive to cultural and religious needs. Many of the
users may be unable to follow their religious practices.
participants, regardless of ethnicity, gender and age,
There is a lack of awareness among statutory service stressed that cultural competence could be achieved if
providers about patients’ faith and religious needs, and mental health service staff were the same ethnicity as their
some studies, particularly those among Muslim and patients. However, some did not agree, because they
Orthodox Jewish communities, highlighted the thought practitioners from their ethnic group may breach
fundamental, interwoven aspects of religion on daily life confidentiality, may judge them negatively, and may view
that they felt service providers needed to understand more mental health problems and patients only from a western
fully. Two-way partnerships were suggested to address perspective. Others thought that the ethnicity of staff and
this, in which faith-based organisations and mental health patients was irrelevant, as long as the service provider
services both learn more of the other’s perspective. was ‘professional’.
– Racism in mental health services (section 4.3.6) A more active role for Black and minority ethnic
Racial abuse from other members of the public was an communities and service users (section 4.6)
underlying theme across the studies. It was reported by all The commissioning and completion of the NIMHE Community
ethnic groups (including the White groups, such as Irish Engagement Project was itself a contribution to the DRE
people, Irish Travellers and migrant workers from Eastern service characteristic for 2010, ‘a more active role for Black
Europe), but particularly by Muslims and asylum seekers. and minority ethnic communities and Black and minority
Many study participants discussed the negative effect of ethnic service users in the training of professionals, in the
such racial abuse on their mental wellbeing. development of mental health policy, and in the planning and
Where study participants reported mental health services’ provision of services’. The project resulted in 79 reports on
failure to address their language, faith and religious, dietary issues surrounding mental health and mental health services
and gender requirements, by no means all used the terms among a variety of Black and minority ethnic populations,
‘racism’ or ‘discrimination’ to describe this. Nevertheless, with a total sample of 935 current or ex-mental service users,
some were in no doubt that mental health services’ lack 344 carers and 4,472 other community members.
of cultural competence amounted to institutional racism, Older people (section 4.7)
especially Muslims, asylum seekers and refugees, and, Older Black and minority ethnic people are specifically
particularly, Black African and Black Caribbeans. mentioned in DRE as needing improved mental health
The journey towards recovery (section 4.4) services. Fifteen of the 79 studies dealt solely with this issue
Factors that facilitate recovery were identified as support from and older people were included in the samples of other studies.
family and friends, ‘keeping busy’, a positive attitude, faith The results appear throughout this report and this section
and religion, and medication. There was a strong correlation sets them in the context of previous research and current
between the reported barriers to recovery and lack of policy. It shows that older Black and minority ethnic people
the facilitating factors: the lack of support from family and are especially vulnerable to exclusion, marginalisation and
friends, the stigma of mental illness, a return to an unchanged inequality in mental health promotion and mental health
environment after treatment, a poor experience of treatment, service access. The recommendations from the community
and disbelief that recovery is possible. organisations on this issue are in keeping with recommendations
from a range of central guidance, but unlike the central
Service user and carer satisfaction with mental guidance, provide practical details of specific ways in which
health services (section 4.5) the barriers to service access facing older people can
The issues in relation to satisfaction with mental health be reduced.
services cannot be seen in isolation from other sections
The Count me in census (section 4.8)
reporting the findings from the project. These provide clear
The annual Count me in census of all psychiatric inpatients
evidence that levels of satisfaction with mental health
in England and Wales began in 2005 as part of one of the
services, as well as being highly individual and subjective,
building blocks of the programme of change laid out in DRE.
are inextricably linked to service users’ fears of mental health
Although the census results refer only to inpatients, many
services; perceptions of the effectiveness of the treatment
study participants and community organisations were aware
received; experiences and perceptions of services’ cultural
of the overrepresentation of the Black African, Black
competence; and their opinions about whether or not treatment
Caribbean, Black British, Mixed White and Black African,
resulted in recovery.
and Mixed White and Black Caribbean ethnic groups. The data
It is not possible to draw overall conclusions on levels of from the censuses support the findings from the study
satisfaction with services across the whole project, nor within reports surrounding Black and minority ethnic people’s fears
and between different ethnic groups. The range of participating of mental health services and dissatisfaction with them.
community organisations, the focus of their studies and their
target samples were extremely diverse and each community
organisation devised their own data collection methods,
which ranged from statistical scales to measure satisfaction
to individual case studies. It is therefore unsurprising
that, overall, study participants reported a broad range of
experiences and subsequent levels of satisfaction with mental
health services. There were many accounts and statistical
data to show that these services had made a positive impact
and, equally, some powerful stories of problematic experiences.
The project’s outcomes for community organisations – Fifty-seven CDWs said they had experienced obstacles
The 75 community organisations that participated in the in trying to achieve improvements for Black and
project also recorded positive outcomes from the project for minority ethnic people in terms of mental health service
the organisation. At the end of their involvement in the project: provision. They particularly reported the lack of support
from healthcare professionals and of financial resources.
– The community organisations had been supported by a
total of around 400 steering group members that
included local mental health service planners,
commissioner and providers. This engagement ensured
that the studies were compatible with local priorities
and strategies, provided a mechanism for implementing
the recommendations, and maximised the likelihood
that the community organisations’ work will be
sustained in the long term.
– The community organisations’ profiles were raised
among local and regional mental health services and
among the local Black and minority ethnic populations.
–
Links and partnerships between community
organisations and primary care trusts (PCTs) were
strengthened.
–
There was an increase in community organisations’
knowledge of, and engagement with local Black and
minority ethnic populations.
– There was an increased awareness of mental health and
mental health services among local Black and minority
ethnic populations.
– Funding was obtained by some community organisations
to conduct further work related to the mental health
service needs of Black and minority ethnic populations.
–
The majority of the studies recommended vastly
increased Black and minority ethnic community
members’ and service users’ involvement in the
planning, commissioning and delivery of mental health
services, to their own and others’ benefit. The studies
argued that the result would reduce these communities’
fear of mental health services; provide them with a
more balanced range of culturally appropriate, effective
therapies; increase mental health services’ cultural
competence; increase the proportion of Black and
minority ethnic service users reaching self-reported
states of recovery; and increase their satisfaction with
services.
– It is clear from the data gathered from all the ethnic
groups that participated in the project that all the mental
health service needs (including demolition of the
barriers to service access) are interrelated.
–
In addition, the study reports show the importance
of work at local level towards the DRE vision of
service characteristics. This, for example, would address
the heterogeneity of, for example, ‘the South Asian
communities’, within which there are differences
between genders, generations (especially between those
who were born in and outside the UK), faiths and
religions, and languages and dialects, as well as between
those of Bangladeshi, Indian, Pakistani and Sri Lankan
heritage. ‘What works’ for any one of these – or indeed
for any other Black and minority ethnic population –
may be inappropriate for another.
The National Institute for Mental Health in England (NIMHE) Specifically, DRE was designed to deliver on three key aims
Community Engagement Project was commissioned by by 2010: equality of access, equality of experience and equality
NIMHE. Seventy-five community organisations participated of outcomes.
in the project, which was conducted in three phases between
DRE showed the need for an effective framework that
2005 and 2008. The project was managed and supported by
could deliver better and more culturally appropriate, clinically
the Centre for Ethnicity and Health (now part of ISCRI) at
effective and recovery-orientated care for members of Black
UCLan on behalf of NIMHE (then part of the Care Services
and minority ethnic communities. DRE demonstrated how the
Improvement Partnership and since absorbed into the successor
different initiatives would produce the improvements required.
organisation, the NMHDU).
Many different organisations needed to be involved in
This section describes the context in which the NIMHE delivering the programme, reflecting the complex nature of
Community Engagement Project was devised, commissioned mental health service development.
and conducted: Delivering race equality in mental health care
(Department of Health 2005a) and the ISCRI Community
3.1.1 The five-year vision
The five-year vision for DRE (pp.4-5) was that by 2010,
Engagement Model (Fountain, Patel and Buffin 2007). Details
mental health services should be characterised by:
are provided of process of recruitment, training and of the
studies conducted by the 75 community organisations. – less fear of mental health services among Black and
minority ethnic communities and service users;
The methods used to compile this report are then summarised,
followed by a description of the characteristics of the – increased satisfaction with services;
sample of 5,751 community members and 267 mental health – a reduction in the rate of admission of people from
service providers. Black and minority ethnic communities to psychiatric
inpatient units;
3.1 Delivering race equality in mental – a reduction in the disproportionate rates of compulsory
detention of Black and minority ethnic service users in
health care: background and context inpatient units;
Delivering race equality [DRE] in mental health care
– fewer violent incidents that are secondary to inadequate
(Department of Health 2005a) was a five year action plan
treatment of mental illness;
for achieving equality and tackling discrimination in mental
health services in England. It also outlined the Government – a reduction in the use of seclusion in Black and minority
response to the recommendations made by the inquiry into the ethnic groups;
death of David Bennett in terms of all Black and minority –
the prevention of deaths in mental health services
ethnic people. This section provides a summary of the DRE’s following physical intervention;
vision of service characteristics, building blocks and action
plan. – more Black and minority ethnic service users reaching
self-reported states of recovery;
While part of the impetus for developing the plan was
connected to the disproportionate number of Black African – a reduction in the ethnic disparities found in prison
and Black Caribbean men who are detained under the Mental populations;
Health Act 1983 and inpatients in psychiatric hospitals (see – a more balanced range of effective therapies, such as peer
section 4.8), the scope of the DRE goes well beyond a focus on support services and psychotherapeutic and counselling
any specific ethnic groups. Like the definition of ‘BME’ in the treatments, as well as pharmacological interventions that
‘Note on the terms used in this report’ section, it very are culturally appropriate and effective;
deliberately casts a wide net to encompass all ethnic groups in
England, including migrants from Central and Eastern –
a more active role for Black and minority ethnic
European countries, Irish people and Irish Travellers. communities and Black and minority ethnic service
users in the training of professionals, in the development
The DRE stresses that (p.14): of mental health policy, and in the planning and
– Equality in mental health services is not a new provision of services; and
requirement. Many of the actions described in DRE
have their roots in existing legislation, guidance or –
a workforce and organisation capable of delivering
initiatives. Many are to be taken at national level, by the appropriate and responsive mental health services to
Government or other bodies. DRE pulls them all Black and minority ethnic communities.
together, sets them in a mental health context, and adds
the key, focused activity that is now needed to ensure
rapid progress.
3.1.2 Building blocks • Working with the Home Office and the police to improve
local liaison and with the National Patient Safety Agency
DRE’s programme of change was founded on three building (NPSA) to reform the process of independent inquiries and
blocks (p.3): issue guidance on creating safer environments on acute
more appropriate and responsive services – achieved
– psychiatric wards.
through action to develop organisations and the workforce,
• New focused implementation sites (FISs) where strategic
to improve clinical services and to improve services for
health authorities (SHAs) and organisations work together
specific groups, such as older people, children and
at local level, to drive change in mental health services
adolescents, and asylum seekers and refugees;
for Black and minority ethnic people and to develop best
community engagement – delivered through healthier
– practice.
communities and by action to engage communities in
planning services, supported by 500 new CDWs; and 3.1.4 Focused implementation sites
Seventeen FISs across the country pioneered best practice in
better information – from improved monitoring of
– eliminating discrimination in mental health care. These sites
ethnicity, better dissemination of information and good helped identify and spread best practice by developing the
practice, and improved knowledge about effective evidence base and facilitating the roll-out of the DRE action
services. This will include a new regular census of mental plan. It was intended that FISs could demonstrate from the
health patients. outset that change can be achieved. Although implementation
of the plan should have begun across the NHS in 2005, FISs
3.1.3 Steps in delivering race equality
acted as ‘hothouses of reform’. The aim was to demonstrate
The DRE action plan had the potential to improve the care
the Government’s seriousness about following through the
for any group affected by disparity in health and healthcare.
commitments made in DRE and to provide a valuable source
The main elements included:
of best practice and support for the rest of the NHS. The 17
• Primary care trusts (PCTs) providing more responsive sites were:
services based on the needs of the local population, helped • Bedfordshire & Hertfordshire
by local demographic data.
• Birmingham & the Black Country
• NHS trusts assessed by the Healthcare Commission
• County Durham & Tees Valley
(now the Care Quality Commission) on their performance
in challenging discrimination and providing equality • Dorset & Somerset
of access.
• Greater Manchester
• A new commitment to reduce the disproportionate rates of • Hampshire & Isle of Wight
compulsory detention of Black and minority ethnic mental
health patients and to prevent deaths in mental health • Leicestershire, Northamptonshire & Rutland
services following physical intervention. • Northumberland, Tyne & Wear
• Creating a workforce that has the knowledge and skills to • North Central London
deliver equitable care to Black and minority ethnic • North East London
populations, with support from the Royal College of
Psychiatrists and better race equality training. • North West London
• An important role for the non-statutory sector, supported • South East London
by a £2 million national community engagement scheme to • South West Peninsula
help PCTs identify Black and minority ethnic voluntary
• South Yorkshire
and community organisations that can advise them, and, in
some cases act as partners in delivering services. It was • Surrey & Sussex
intended that PCTs would be supported by 500 new CDWs.
• Trent
• NHS Direct to provide a national interpretation and • West Yorkshire.
translation service and PCTs to provide directories of NHS
and social care services targeted at Black and minority
ethnic people.
In particular, FISs sought to: The NIMHE Community Engagement Project used a model of
community engagement originally developed by the Centre
• Demonstrate that a whole system, collaborative approach,
for Ethnicity and Health at UCLan to achieve these aims. This
that draws on and adapts approaches used successfully in
model is described in the following section.
other areas of health care, improves mental health services
for Black and minority ethnic people.
3.2 The ISCRI Community
• Provide leadership and raise the profile of the Black and Engagement Model
minority ethnic programme. (Fountain, Patel and Buffin 2007)
• Develop strategic partnerships between key organisations
This section briefly describes the community engagement
to lever investment and build capacity.
model used for this project and developed during the Centre
• Build capacity and intelligence to facilitate further change. for Ethnicity and Health’s Community Engagement
• Directly and quickly improve mental health services for Programme at the University of Central Lancashire (the
Black and minority ethnic populations. Centre for Ethnicity and Health is now part of the ISCRI).
Figure 1
Task Support
The task that the community is to be engaged in must be time- The support element of the ISCRI Community Engagement
limited and manageable, and most Community Engagement Model consists of training, project support workers, funding,
Programme projects to date have involved communities in and a steering group. Support is a crucial element in capacity-
undertaking a needs assessment on an issue that is significant building a group of people to conduct a piece of research,
both to them and to local services. However, it must be stressed produce a report, and to ensure that the recommendations for
that although a research report from a community organisation service development are taken seriously. It should be
is a significant outcome of a community engagement project, emphasised that the majority of community organisations and
of equal importance is the process of building the skills community researchers who have participated in the
and capacities of the community organisations, community Community Engagement Programme have had little or no
members, and local service planners, commissioners and prior experience of either conducting research, the issue
providers involved. This is done by: they will be researching, nor the local service provision to
address it.
– raising the awareness of community members of the
issue in question and of the local services available; –
When a community organisation is recruited to a
– raising the awareness of service planners, commissioners community engagement project, they are assisted by the
and providers of the community and their service needs; facilitator to identify and recruit an individual from their
community to act as a lead researcher/co-ordinator, and
– where it exists, reducing the community’s stigma, fear, others to conduct the research. Training is provided for
and denial of the issue (such as drug use and mental these community members to give them a basic
health problems); knowledge of research methods and the area they will
–
building the capacity of individuals and community be researching, including relevant national and local
organisations to enhance their ability to articulate policies. Typical training programmes comprise five
identified needs to service planners, commissioners, days on research methods and two days on the area of
and providers, thereby ensuring local ownership and research. They take place in accredited workshops,
clear plans to implement the research findings; giving participants the opportunity to complete an
assignment to gain a nationally recognised university
– enhancing the local workforce and planning agenda to certificate.
ensure delivery and growth in the workforce, including
the development of mentoring, accredited training, – As discussed by Fountain, Khurana and Underwood
volunteer networks and employment; (2004), implementation of the ISCRI Community
Engagement Model involves project support workers,
– increasing the trust of the community in local service
who are required to offer a significant level of support
planners, commissioners, and providers and vice versa;
to the communities but stopping well short of doing
and
the work that the communities are learning to do
– involving local service planners, commissioners, and themselves. Most support workers employed on the
providers in the process. This enables the development Community Engagement Programme are graduates,
of services that are sensitive to, and meet, identified with previous experience in conducting research and of
needs, and sustains engagement with the community, working with Black and minority ethnic communities.
the partnerships that have been established during the The majority are members of these communities
project, and the work that has been identified by themselves. The project support workers visit ‘their’
the research. projects for at least half a day once a fortnight and are in
telephone and/or email contact the rest of the time. They
have a number of key responsibilities, including helping
community organisations to develop their methods of
investigation; advising on budgetary management;
making and maintaining links with local key stakeholders
to ensure that projects are linked into local relevant
service plans and agencies; providing academic advice
to those enrolling on the university certificate courses;
monitoring projects on an on-going basis; and assisting
community organisations to disseminate and promote
the project’s final report. In national projects, support
workers are managed and supervised by regional senior
support workers, who oversee and advise on the
region’s projects.
In several cases, partnerships between community Where current mental health service users and/or providers
organisations were formed especially for this project and local were included in a study’s sample, ethical approval was also
branches of national organisations also conducted studies. In obtained from the local NHS research ethics committee.
some instances, close alliances were formed with CDWs and
in a few cases, CDWs played a lead role in managing the The community organisations participating in each phase are
community engagement team and/or gathering data for the listed below, along with the titles of their study reports,
study. Ethical approval was granted for all the studies from the revealing the wide range of ethnic populations (section 3.5)
Centre for Ethnicity and Health’s ethics committee. and issues that the studies focused upon.
Phase 1 (2005-2006)
Aston Christian Centre, Birmingham The needs of African Caribbean people between the ages of 18-65 that
live in the Aston and surrounding areas of Birmingham with regard to
their mental health and talking therapy
Bedfordshire African Community Centre The mental health needs of African refugees, asylum seekers and
(BAAC), Luton new migrants
Big Life Services, Liverpool Why Black and Muslim women in Liverpool do not access mental health
services and also to find out what services are available and how
accessible information was to obtain
BME Housing Consortium/RAMA Asian men’s mental health
(Asian men’s support group), Wolverhampton
Dignity Mental Health Service, Luton The role faith communities can play in the mental health service needs
of the African Caribbean community in Luton
Health, Advocacy and Resource Project The mental health needs of refugees and asylum seekers in Manchester
(HARP), Manchester
Karma Nirvana, Derby The mental health and wellbeing needs of South Asian women re-
settling in Derby following domestic violence
Lewisham Day Centre for Refugees and The mental health needs of refugees and asylum seekers in the London
Asylum Seekers Borough of Lewisham
Northampton Irish Support Group A report on the first generation Irish community in Northampton, and
their experiences of mental health and mental health services
Rethink Sahayak Services, London Understanding the effects of domestic violence for South Asian women
Sharing Voices (Bradford) Self-defined mental health needs of the Muslim community
Phase 2 (2006-2007)
African Caribbean Community Initiative The mental health service needs of African and Caribbean women
(ACCI)/Nyela, Wolverhampton
Bangladesh Welfare Association/Culture The mental health needs of the Bangladeshi community in Portsmouth
Works, Portsmouth
Barnsley Black and Ethnic Minority Initiative Whether existing mental health services in Barnsley are appropriate
(BBEMI) and responsive to the needs of refugees and asylum seekers and
migrant workers
Bedford African & Caribbean Forum The after-care services in Mid and North Bedfordshire for male/female
users with mental health service issues aged between 18-35 from the
African/Caribbean community
Binoh of Manchester Mental health service needs amongst the Orthodox Jewish community
in Greater Manchester
Blackburn with Darwen Community Links Exploring the needs, views and experiences of South Asian mental
health carers in Blackburn with Darwen
Bolton Association and Network of Issues and barriers faced by the Black and minority ethnic communities
Drop Ins (BAND) in accessing mental health services and their experiences once they
access mental health services in Bolton
Brunswick Community Development Project Access to mental health services and treatment for the Arabic
(BCDP), Brighton and Hove speaking communities in Brighton and Hove and whether they
are culturally appropriate
Chinese Mental Health Association (CMHA), The exploration of mental health needs and experiences of the Chinese
London community in Barnet
Derby Millennium Network (DMN) The experiences of 18+ Black and South Asian service users and carers
in the Derby city area
Dorset Mind Knowledge and perceptions of the use of compulsory powers in mental
health among Black and minority ethnic communities in Bournemouth,
Poole and East Dorset
Hikmat BME Elders Centre, Exeter ‘Like suffer in a dark fridge’: the mental health experiences and
outcomes of Black and minority ethnic elders and their carers in
and around Exeter
Irish Welfare and Information Centre, The mental health needs of older Irish adults in Birmingham
Birmingham
Mind in Tower Hamlets (MITH) The experiences that adult mental health service users and survivors
from African and Caribbean, Bengali and Somali communities have had
of using mental health services in Tower Hamlets or other boroughs
Partners of Prisoners (POPS) and Families The mental health needs of young Black and minority ethnic men
Support Group, Manchester based in HMP/YOI Hindley
Penwith Community Development Trust, Barriers to accessing mental health services within the Black and
Cornwall minority ethnic community in Cornwall
The Qalb Mental Health Centre, London The mental health service needs of South Asian communities in the
London Borough of Waltham Forest
Rethink Birmingham The mental health views, concerns and needs of the Pakistani
community in Small Heath, Birmingham
RUN-UP (Redbridge User Network User The experience of people from Black, Asian and minority ethnic groups
Pressure Group) in adult acute mental health settings in Redbridge
Sahara Spotlight Group, Sahara Women’s Mental health service needs of Asian women
Group, Middlesbrough
Saheli Asian Women’s Project, Manchester The mental health needs of South Asian women who are survivors of
domestic violence
Smethwick Bangladeshi Youth Forum, Sandwell Bangladeshi mental health needs analysis research
Birmingham
Social Action for Health and Mellow, London The impact assessment of the Mental Health Guide Programme:
a mental health community development project within Hackney’s
African and Caribbean communities
Somerset Racial Equality Council Researching Black and minority ethnic views on mental health provision
in Somerset: light at the end of the tunnel?
Talking Matters Wellbeing Centre, London Emotional experiences and attitudes of Orthodox Jews in Stamford Hill:
a needs assessment of mental health services in the Ultra Orthodox
Jewish community in North London
UK Coalition of People Living with HIV and The mental health needs of Black African people living with HIV
AIDS (UKC), London
Wai Yin Chinese Women Society, Manchester The needs of Chinese older people with dementia and their carers
The Wiltshire Trust, Southampton Investigating the extent and impact of isolation and loneliness amongst
ex-service users and carers
YWCA Doncaster Women’s Centre The mental health needs of Black and minority ethnic communities
in Doncaster
Phase 3 (2007-2008)
African Caribbean Citizens Forum, Leicester How best to encourage African Caribbean men to make use of mental
health services prior to crisis
Age Concern, Herefordshire and The level of interaction between Black and minority ethnic individuals
Worcestershire aged 50 and over and service providers in relation to mental health
wellbeing in Worcestershire
Amana Educational Trust and Transparency The mental health needs of Somali 11 to 18 year olds in Bristol
Research Partners, Bristol
Asylum Link Merseyside (ALM), Merseyside Inequalities and cultural needs in mental health service provision for
Chinese Community Development Association Black and minority ethnic communities in Liverpool
(MCCDA) and Irish Community Care
Merseyside (ICCM)
AWAAZ – Asian Mental Health Research Unit, Access to mental health secondary care services for South Asians
Nottingham in Nottinghamshire
Barnsley Black and Ethnic Minority Initiative Whether mental health services are appropriate and responsive to
(BBEMI) the needs of the Gypsy and Traveller communities of South Yorkshire
Black Country Holistic Approach, Walsall The mental health needs of Black and minority ethnic young people
BME Mental Health Community Development Black and minority ethnic elders within the Pakistani, Bangladeshi,
Team, Oldham Primary Care Trust Indian, Polish and Ukrainian communities looking at their experiences
and perceptions of mental health issues in Oldham
Bolton Association and Network of Drop Ins Barriers affecting those aged 50+ from the South Asian community
(BAND) when accessing mental health services and whether socio-economic
factors impact on their mental health
Centre for African Families Positive Health The mental health needs of African heritage people affected by
(CAFPH), Luton HIV/AIDS in Bedfordshire
Chinese Mental Health Association (CMHA), Investigating the barriers and difficulties faced by older Chinese people
London in Tower Hamlets and Hackney in coping with mental health issues
Chinese National Healthy Living Centre, The mental health service needs of Chinese elders in Westminster,
London Kensington and Chelsea, and Brent
Derbyshire Gypsy Liaison Group (DGLG), ‘I know when it’s raining’: the emotional health and well-being needs
East Midlands Region of Romany Gypsies and Irish Travellers
Derman for the Well-being of the Turkish and Voice of men: mental health needs assessment of Turkish/Kurdish and
Kurdish Communities, London Cypriot/Turkish men in Hackney
Devon and Cornwall Refugee Support 2 studies:
Council (DCRSC) and Plymouth Teaching The experiences of asylum seeking and refugee women, children
Primary Care Trust and young people living in Plymouth
‘A normal reaction to an abnormal situation’: the mental health
of lone male refugees and of those seeking asylum in Plymouth
Éirim Mná, Midland Heart/Focus Futures, The mental health needs of Irish women in Birmingham
Birmingham
Faith Community Project (FACOP), The effective use of faith in alleviating mental health problems
Middlesbrough amongst asylum seekers and refugees in the Tees Valley
The Forest Bus Mobile Project, Hampshire Mental health, equality and wellbeing of Gypsies and Travellers
in Hampshire
Future Health and Social Care Association, The needs of Black minority ethnic carers who care for those with
Birmingham dementia, in the Ladywood area of Birmingham
Guideposts Trust and Watford Asian Asian women from Indian, Pakistani, Sri Lankan and Bangladeshi
Community Care communities in Watford and their understanding about mental
wellbeing: their views about the accessibility and appropriateness of
local mental health services
Healing Waters, Croydon The after-care mental health services in Croydon for African,
African-Caribbean and Black British male mental health service
users aged between 18-45 years
Phase 3 (2007-2008)
Hopscotch Asian Women’s Centre (HAWC), The mental health needs of young people from a Bangladeshi
London background from the London Borough of Camden
Khidmat Centres, Bradford The mental health needs of older people from South Asian
communities in Bradford
Maytree Nursery and Infant School parent Power to parents: work by a local school to enable South Asian parents
support staff, Southampton to foster their children’s mental wellbeing
Mind in Harrow Gujarati-speaking Asian elders’ experiences/views and attitudes of
mental health and mental health services in Harrow
My Time New Communities Team, Birmingham Mental health needs of asylum seeker and refugee men and women
community in Small Heath, Birmingham
Nguzo Saba, Preston Exploring the mental health needs and access to mental health support
services for young males aged 14 to 25 years from African, Caribbean,
South Asian and mixed heritage backgrounds within Preston
North Hampshire Caribbean and African Mental health, equality and wellbeing of Caribbean and African black
Network men in Hampshire
Northamptonshire Somali Community Jaah Wareer (Trauma)? I live with this: post-traumatic stress in the Somali
Association (NSCA) community in Northampton and their experiences of health services
Portsmouth Race Equality Network The mental health needs of people aged 50 and over in the Chinese,
Organisation (PRENO) Vietnamese and Sikh communities in Portsmouth and the views of
service providers regarding Black and minority ethnic service users
Rethink West Dorset Services Mental health needs of Eastern Europeans and preparedness of services
to meet this need
Rotherham Yemeni Community Association Exploring the mental health needs of the Yemeni community
Shifa, Woking Why people over the age of 50 from Pakistani, Bengali, Indian,
Nepalese and Chinese communities who are living in the North and
West Surrey areas do not access mental health services provided by
the NHS Trust in North West Surrey and part of North East Hampshire
Southside and Fanon, London Male African and African Caribbean perspectives on ‘recovery’
SubCo Trust, London Asian elders’ and carers’ access to mental health services
Tees Valley Voices for Justice, Middlesbrough The mental health needs and experiences of African men living in the
Tees Valley
Turkish Women’s Support Group, London The mental health needs of Turkish speaking children/young persons
Youth Voice, Leicester Substance misuse and mental health services: an exploration of the
experiences and attitudes of young people from Black and minority
ethnic communities
3.3.3 The themes of the community of seclusion in Black and minority ethnic groups; the
organisations’ studies prevention of deaths in mental health services following
Applications were invited from community organisations to physical intervention; and a reduction in the ethnic disparities
conduct a piece of research addressing one or more of the 12 found in prison populations.
service characteristics set out in the DRE vision (section 3.1.1)
by actively engaging members of Black and minority ethnic 3.3.4 Recruitment of community organisations
communities (including mental health service users) in the to the project
process, both as researchers and study participants. To attract applications, details of the project were sent to
all the community organisations on the Centre for Ethnicity
In order that as wide a range as possible of Black and minority and Health’s (CEH) extensive database; advertised on the
ethnic communities were represented in the project, NIMHE website and in the CEH Community Engagement
applications for the third phase (2007-2008) were particularly Newsletter; and distributed directly to community organisations
sought for studies dealing with older people, children, Irish via regional race equality leads (RELs – see section 3.1.5) and
communities, Eastern European communities and men. the CEH community engagement team staff. In addition, some
During this phase, RELs and UCLan’s community engagement RELs held seminars and/or meetings to assist community
support workers particularly encouraged applications focused organisations who wanted to prepare a proposal.
on these DRE priority areas. Within these parameters, and
with guidance from RELs and UCLan, community The information pack sent to applicants included a summary
organisations were invited to choose which of the DRE service of DRE and the ISCRI Community Engagement Model,
characteristics to focus upon. Their choices meant that this along with an application form and details of how each section
report is able to present data on five of the characteristics: should be completed. The pack also contained further details
about the project and the tasks community organisations would
– Less fear of mental health services among Black and be expected to conduct (see appendix 2).
minority ethnic communities and service users;
The application packs provided details of a contact at the
– A more balanced range of effective therapies, such as
CEH who could be approached to provide further information
peer support services and psychotherapeutic and
if required. Those who wanted assistance to complete the
counselling treatments, as well as pharmacological
application form were given the contact details of a CEH
interventions that are culturally appropriate and
community engagement support worker. Applicants were also
effective;
strongly encouraged to contact their local REL to discuss the
–
A workforce and organisation capable of delivering focus of their proposal and for assistance with the application.
appropriate and responsive mental health services to
Black and minority ethnic communities; 3.3.5 Shortlisting
Over the three phases of the project, applications were
– More Black and minority ethnic service users reaching received from a total of 198 community organisations. These
self-reported states of recovery; and were scored by regional race equality leads and FIS managers,
– Increased satisfaction with services. with input from the CEH community engagement team, and
shortlists compiled. The CEH community engagement lead
The characteristic, ‘a more active role for Black and minority and the Director of DRE examined these shortlists to ensure
ethnic communities and Black and minority ethnic service that they covered all the target FISs and a range of issues they
users in the training of professionals, in the development of wished to investigate. The criteria used for the shortlisting
mental health policy, and in the planning and provision of process are reproduced in appendix 3.
services’, is also addressed in this report, as follow-up work on
the project’s outcomes was conducted by the authors. During the shortlisting process, preference was given to those
The remaining six DRE service characteristics are not organisations operating within the boundaries of the FISs.
covered in this report, because there are very few – or no – data
in the community organisations’ study reports concerning
them. This is unsurprising, as they are characteristics
essentially describing actions by mental health service
providers: a reduction in the rate of admission of people from
Black and minority ethnic communities to psychiatric inpatient
units; a reduction in the disproportionate rates of compulsory
detention of Black and minority ethnic service users in
inpatient units; fewer violent incidents that re secondary to
inadequate treatment of mental illness; a reduction in the use
3.3.6 Interviews and final selection The community organisations were also supported by a
Ninety-nine applications were shortlisted and the applicants community engagement support worker from UCLan, as
were invited for an interview with representatives of described in section 3.2.1.
UCLan and the relevant area’s race equality and focused
implementation site leads. Interviews lasted for approximately The community researchers from the community organisations
45 minutes. participating in this project attended the training workshops
that were a mandatory element of this project. These were
The interview panel asked the applicants for more details of provided by UCLan at several locations across England. The
their proposal, especially surrounding the proposed study’s: training included basic information on aspects of mental
health, mental health services and local and national mental
– relevance to DRE;
health policies, and on relevant data collection and analysis
– research focus; methods.
– process of engagement with Black and minority ethnic As well as providing community researchers with the relevant
mental service users, carers and/or community members; skills to undertake their task, the workshops offered the
–
recruitment of the community researchers and their opportunity to form local networks and contacts. The first four
attendance at the training sessions; workshops were delivered to several community organisations
in an area, during which participants worked together, sharing
– budget; and ideas and information. They met again later during their
– anticipated outcomes for individuals and the community projects to undertake the final three workshops and share their
organisation and the likelihood of sustainability. experiences.
A variety of research methods were used to collect data from The social inclusion agenda
community members, with many studies using more than David Morris, Director of Inclusion Institute, ISCRI, UCLan
one method: The principles which DRE (Department of Health, 2005a)
were to advance are closely related to those of social inclusion.
–
77 studies used face-to-face interviews, usually
If DRE was to deliver on equality of access, experience and
conducted with two researchers in attendance, one
outcome, inclusion outcomes require action also to reduce the
asking the questions and the other recording the answers;
impediments to access and the negative personal experience to
– five studies used self-completion questionnaires; which this so often gives rise. In describing the progress and
process towards delivering race equality, this report speaks to
– 32 studies conducted focus groups;
the agenda for social inclusion and to the actions undertaken
– seven studies included case studies; over the same period to achieve policy goals which have
always been complementary. Moreover, in describing the
– nine community organisations organised specific events
ways in which the imperatives of DRE have been addressed
or seminars to collect data;
at community level, this report describes the ways in which,
– one study recorded information using a video diary; as part of that process, the imperative of social inclusion has
and also been addressed.
– two studies included clinical evaluation tools in their As ‘equality in mental health services is not a new requirement’
studies (with advice from a qualified professional on the (DRE, p.14), so the necessity of social participation as a vital
steering group). One used the PHQ9 screening tool for dimension in mental health is also historically rooted and
assessment of depression and the other used Clinical well-rehearsed in models for individual support and recovery.
Outcomes in Routine Evaluation (CORE). The articulation of social participation in a policy on inclusion
A variety of research instruments were also used to collect data is, however, a more recent occurrence, having been the subject
from service providers and again, some studies used more of the Social Exclusion Unit’s report of 2004, Mental Health
than one research method: and Social Exclusion (ODPM, 2004). This report, based on
evidence – much of it the experiential evidence of service
–
ten studies asked respondents to complete self- users, gathered over the preceding 12 months – described the
completion questionnaires; exclusion associated with mental health as being multi-faceted
–
six studies interviewed respondents using a semi- and cyclical: ‘Mental health problems can lead to a vicious
structured questionnaire; and cycle of social exclusion, including unemployment, debt,
homelessness and worsening health’ (p.20) and it set a course
– four studies conducted focus groups and/or discussion for addressing these complex and often inter-related problems
groups. that the then Minister with responsibility for Mental Health
In addition, the community organisations asked their samples Services described as a ‘moral imperative’ (Winterton, 2004).
for core demographic information (the results of which appear Mental Health and Social Exclusion sets a course for the
in section 3.5), using questions devised by the CEH’s pursuit of this imperative in the form of 27 sets of actions on
community engagement team. employment, education and, as defined by the many life
domains in which it is realised (or, as frequently, denied),
The community organisations’ final reports also included community participation.
details of the services provided by their organisation and
an overview of their local target population(s). Some also The task of creating the conditions in which these actions
conducted literature reviews on the issue they were could be implemented fell to the National Social Inclusion
researching, several of which were extremely comprehensive. Programme (NSIP). The programme approached this as an
enterprise in which a range of inter-connected activity at
national, regional and local level was to be stimulated through
the active involvement of many and diverse agencies,
connecting as partners, affiliates and wider stakeholders.
Such an approach, in which close attention is paid to both need (and the report is to be commended in revealing,
vertical and horizontal integration, is likely to be the hallmark through personal and community accounts, the specificity of
of any cross-cutting policy programme in a complex service this need in ways that are elsewhere often limited by
environment and this report evidences the case in relation generalisation). Moreover, the community engagement
to DRE: approach is fundamental to addressing the still unmet
challenge of stigma and fear between and within specific
Many different organisations will need to be involved in communities and in this, this report again aligns with the
delivering the programme, reflecting the complex nature of agenda for inclusion. Communities are important sites for the
mental health service development. (DRE, p.40) social links, activity and various forms of social network by
which people’s views and behaviours can change positively
However, this breadth of participation creates its own
and confidence and trust (which the report identifies as being
complexity; diverse action at many levels with multiple
a frequently cited issue for respondents) secured.
stakeholders requires a clear vision and methodology for
securing change through optimal engagement and coherent Service systems need to incorporate into their skills base
organisation. Without this organisation, it is unlikely that the ability to recognise, promote and play their part in
outcomes will be sufficiently well embedded to endure. This co-producing networks as settings within which fear can
report on a community engagement project details the way in be collectively ameliorated, new forms of reciprocity developed
which this condition was met through the application of and discrimination addressed. Beyond its core aim, this report
UCLan’s established community engagement approach. It contributes to our thinking and vision on the role
describes in detail the importance of the method to advancing of community engagement ‘in the round’, whether in relation to
by 2010, the key characteristics of mental health servicesthat the inclusion of Black and minority ethnic communities or
are effectively meeting the needs of people from the very many communities of service users more widely. A DRE aim is to
Black and minority ethnic communities identified within it. ensure ‘greater community participation in, and ownership of,
mental health services’ (DRE, p.60), but allowing local
Many of these characteristics are those of inclusion more
populations by this means to ‘influence the way services are
generally. More service users reaching self-reported states of
planned and delivered’ (p.61) needs to go hand-in-hand with the
recovery; more involvement of service users in the training of
mobilisation of those communities and the social networks within
professionals and in the planning and provision of services;
them as the means of generating new forms of mutuality and
a workforce and organisation capable of delivering appropriate
understanding. While services are increasingly well equipped to
and responsive mental health services to communities – these
promote inclusion at the individual level, their positive potential
are all facets of effective inclusion-oriented services for all
as partners in supporting inclusion as participation will be realised
communities. The reported experience of service users that the
by the extent to which they situate their role within an
major impediment to their own inclusion was the low
understanding of cultural competence as comprising organisational
expectation by mental health professionals of what they might
and individual aspects, which are interdependent (see the
themselves achieve (NSIP, http://www.socialinclusion.org.
commentary by Bashford at the end of section 4.3).
uk/cross_cutting/index.php?subid=19) both resonates with
the impression of ‘years of mistrust’ reported by one of the Policy on inclusion derived initially from Standard One of
studies participating in the project reported here (section 4.1.1) the National Service Framework [NSF] for Mental Health
and signals the fundamental importance to an ‘appropriate’ published in 1999 (Department of Health, 1999). In New
service of a responsive and capable workforce effectively led Horizons, the policy for the post-NSF future, we see a
with service users. A workforce with the knowledge and skills central focus on community mental health and wellbeing
to deliver equitable care is a pre-condition of a workforce (http://www.dh.gov.uk/en/Healthcare/Mentalhealth/
with the ability to form the external community partnerships NewHorizons/index.htm). As attention turns to this ‘up-
necessary to enabling people to participate in the many stream’ public mental health lens, it will be important to retain
communities of which they are members. NSIP defined these and act on the findings of this report. Inequality of access to
capabilities as part of a broader definition of required skills in service or mainstream opportunity based on specific forms of
Capabilities for Inclusive Practice (Department of Health, discrimination, oppression and restriction remains a social
2007). In highlighting the skills identified by community justice issue. It will need to continue to be specifically tackled
organisations as necessary to delivering race equality, this as community wellbeing is promoted. This report speaks to
report also makes a significant and complementary contribution the measures that will need to be taken and they are not short
to the broader inclusion agenda. term. While moving attention upstream, we will need also to
continue the process of service transformation, working with
The application and, in the process, the development of
excluded and marginalised communities, often, in the current
the community engagement method that resulted in this report,
environment, the ‘downstream’ victims of a discrimination
is critical, for its significance both in identifying and connecting
which must be addressed. This report reflects richly the
with communities in ways that would be otherwise impossible
learning required and provides to this task the clear direction
and in generating new forms of accountability in meeting
of its many community participants.
• The authors of this report systematically scrutinised each • Follow-up work on outcomes was conducted among five
study report to identify data relating to each of the individuals who had worked as community researchers on
service characteristics. A chart for each of the issues raised the project. They provided accounts of their personal
concerning each characteristic was devised in order to experiences and of ‘what happened next’. In addition,
compile an accurate overview of the findings. Direct representatives of three community organisations were
quotations from study participants and study reports were asked to describe their organisation’s experiences since the
selected for illustrative purposes. completion of their studies, including progress on the
uptake of their recommendations
• This process was repeated many times. This meant that the
authors of this report became very familiar with the content • To locate the findings from this project in the context of
of the 79 study reports and were therefore able to review current mental health policy and practice, service provision
and validate each others’ selection of data and analysis. and other research, commentaries were elicited from
mental health experts at ISCRI and elsewhere. They were
• Data analysis was a complex and time-consuming asked to write a commentary on any aspect of the project
process because: and/or the findings according to their specific expertise
and experience. Ten commentaries were received and they
–
A variety of research methods were used by the
are listed in appendix 6.
community organisations (section 3.3.8) and data on
a specific issue were presented both qualitatively and
quantitatively. In addition, the total sample comprised
a wide variety of different ethnicities and age groups
(section 3.5). Their involvement with mental health
services was also very varied: some had none, others
had contact with services because they were caring for
someone with a mental health problem, while others had
used services for many years.
3.5 Sample characteristics 3.5.3 Mental health service users and carers
• One-sixth (935) of the community members reported that
The community organisations asked their samples for core they were current or ex-mental health service users. There
demographic information, using questions devised by the was, however, a wide variation in the type of service used,
Centre for Ethnicity and Health’s community engagement team. ranging from consultations with GPs for anxiety-related
conditions to long-term engagement with acute care services.
3.5.1 Sample size
The total sample size was 6,018, comprising 5,751 community • 344 (6%) described themselves as carers for a person with
members and 267 mental health service providers. a mental health condition.
• Not all the community members were asked if they
5%
were service users or carers, so it is likely that the
Community statistics above understate the actual proportion of these
members in the sample.
Mental health
service providers
935
Current or ex-mental
health service users
344 Carers
including:
over 65: 317 (6%)
over 75: 117 (2%)
over 80: 38 (1%)
Totals 5,358 100
Chinese (342/7%)
Mixed (196/4%)
The majority of this category was White and Black African
or White and Black Caribbean.
Other (391/8%)
This group included those who gave their ethnicity as
Cypriot, Iranian, Kurdish, Turkish, Turkish Cypriot,
Vietnamese and Yemeni.
other countries. They were living in the UK with, for example, Tgtina Thai Timini
a work permit, student visa, or exceptional leave to remain. Tigringo/Tigrinya Tshaba Turkish
Twi (Ghanian) Ukrainian Urdu
Vietnamese Wei Tao Welsh
Woloff Yiddish Yoruba
Zagawara Zulu
The study participants were asked which languages they spoke 3.5.11 Service provider sample
or wrote fluently and English was most commonly cited. Seventeen community organisations included a total of
However, some studies noted that degrees of fluency in 267 mental health service providers and other mental health
English varied widely and that in some cases, study participants professionals in their studies. Some study reports simply
may have claimed to have greater proficiency than they categorised service providers according to whether they
actually had. were statutory or voluntary service providers, others listed
them according to the type of organisation they worked
Differences between spoken and written levels of English for, and some listed full job titles.
were reported. For example, in a study of mainly South Asian
participants, 97% said they could speak English fluently, Representatives of voluntary organisations with mental health
but only two-thirds of these had comparable ability in provision were included in the samples of all 17 studies
written English. and statutory, primary and secondary mental health service
providers were included in the samples of 16. Specific job
Overall, the community members reported less proficiency titles were given for some of these study participants:
in writing their first language than speaking it. This was
compounded by some languages and dialects, such as Pahari, – GPs participated in 9 studies;
being mainly in oral form, with a limited written version. – psychiatrists (5 studies);
3.5.9 Faith and religion – approved social workers (3);
5,156 (90%) of the 5,751 community members reported their
– clinical psychologists (3);
faith or religion, most commonly Muslim (46%), followed by
Christian (29%). Far smaller proportions reported that they – counsellors (2);
were Hindu (5%), Sikh (5%), Buddhist (3%) and Jewish (2%).
– nurses/community psychiatric nurses (CPNs) (2);
6% reported that they had no faith or religion. The remaining
4% included those who said their faith or religion was Ancestor – psychologists (2);
Worship, Jainism and Rastafarian. – befrienders (1);
29% None
Other
3.5.10 Sexuality
Community members were asked to state their sexuality.
There was a high level of non-response to this question,
with nearly a third of the sample refusing to answer it. Of those
who did, the vast majority stated they were heterosexual.
Only three women reported that they were lesbians and
twelve men that they were gay. Ten people reported that
they were bisexual.
This section collates the findings from the 79 study reports repercussions of these (such as the negative effect on marriage
according to the DRE service characteristic(s) they addressed. prospects). It was stressed that this fear would prevent them
Data are presented on: seeking help. However, for those who had direct experience
of services, particularly as inpatients, stigma had become
• Fear of mental health services (section 4.1).
part of their landscape. Their previous experiences meant that
• Effective therapies and interventions (section 4.2). many feared re-engaging with services.
• Culturally appropriate treatment and interventions, It should be stressed that not all participants who were asked
categorised according to the issues raised by study expressed a fear of mental health services. There is some
participants in terms of mental health services’ cultural (in) evidence that fear may not be a major issue for many Arabic-
competence (section 4.3): speaking, Kurdish, Turkish and Yemeni study participants,
– language (section 4.3.1); for instance, particularly males. Nevertheless, fear as a barrier
to service access facing members of Black and minority ethnic
– faith and religion (section 4.3.2); communities was a recurring theme in the majority of the
– food (section 4.3.3); study reports, with a significant number – including service
providers – reporting this.
– gender (section 4.3.4);
–
the ethnicity of mental health service staff (section A fear of mental health services – whether based on experience
4.3.5); and or perception – was rarely reported in isolation. Multiple fears,
with complex connections to other issues were the norm.
– racism in mental health services (section 4.3.6). These were strongly related to experiences and perceptions
• The journey towards recovery (section 4.4). of services’ cultural competence, especially in relation to
language, faith and religion (as discussed in detail in sections
• Service user and carer satisfaction with mental health 4.3.1 and 4.3.2). As one study participant put it, ‘I can’t speak
services (section 4.5). English so if I needed to stay in hospital, what would the food
• A more active role for Black and minority ethnic be like, I wouldn’t be able to speak to the nurses – I would be
communities and service users (section 4.6). very scared’.
The project’s results on older people are then set in the context 4.1.1 Mental health service users’ fears
of previous research and current policy (section 4.7), and of re-engagement
finally, relevant data from the Count me in census are presented The issue most often raised by mental health service users on
and discussed (section 4.8). the subject of fear was their reluctance to re-engage with
services. They were particularly afraid that services would
breach confidentiality; of developing further symptoms and
4.1 Fear of mental health services illnesses after contact with other service users; and of being
Delivering race equality [DRE] in mental health care over-medicated.
(Department of Health 2005a) included the intention that by Seven study reports recorded powerful accounts of traumatic
2010 there would be ‘less fear of mental health services among experiences with mental health services, in which fears of
BME communities and service users’ (p.4). Many of the study being readmitted to hospital and the associated loss of control
reports from the community engagement project reported here and enforced treatment were a strong theme. The frustration
included a statement that their work would contribute to this and feelings of powerlessness can be summed up as follows:
aim and some studies specifically explored issues of fear with
their samples. Reducing these fears and thereby improving – No matter what I did the community nurse wouldn’t
access to mental health services was stressed as a priority by listen. Am telling the social worker that I feels much
many studies. better and I don’t need depot [antipsychotic medication,
administered by injection], they can give me tablets or
DRE does not specify what aspects of mental health services even some time on the ward so they can watch me and
members of Black and minority ethnic communities fear. This see how I am... I get mad, mad now and tell the two of
section provides more information, by summarising the key dem that am not taking the injection, they call police
issues that the study participants raised on this theme. and hold me down.
It is clear from the study reports that fears differed according – I take pills that make my mouth water, and pills that stop
to the level of participants’ experiences of mental health my mouth watering make my neck stiff [and] the ones
problems and treatments. Community members with little or that make me feel out of everything, like my mind is
no experience of mental illness reported that their biggest fear slow….sometimes I just want to sleep and eat and talk,
was not what may happen to them in mental health services if but when I go for help I get injected and told I can’t
they sought help there, but rather the stigma, shame and the leave, so I don’t go.
• Several studies reported that service users with a history The underlying fear of what may happen when information
of severe mental illness and inpatient treatment with is shared with other mental health professionals was not
medication experienced difficulties in accessing other made explicit by the study reports, but they indicated a concern
treatment options, such as talking therapies. This led to that information-sharing may lead to detention under the
their fear of re-engaging with any mental health service Mental Health Act 1983 and/or medication against service
owing to concerns that medication or hospitalisation were users’ wishes.
the only options on offer:
Developing further symptoms and illness
– Sometimes you phone the [mental health] teams and A few studies reported that some service users feared that
you just want to talk, and they admit you into hospital! being among others with more severe mental illnesses (in an
• In a study of 40 men with mental health problems, a few inpatient facility, for instance) would negatively impact on
reported that they had stopped accessing primary health their own mental health:
services owing to a fear of what might happen – especially –
People there may be worse than me and make me worse.
being sectioned under the Mental Health Act 1983 – if they Previously I was in [hospital] and I started to copy the
divulged all their mental health issues and problems to others there and become like them.
GPs and other primary care staff.
Over-medication
• A study of 42 women, mostly Black African and Black Some service users commented on what they saw as services’
Caribbean, the majority of whom had been inpatients, tendency to over-medicate. For example:
reported that a quarter feared being mistreated and that
this would prevent them from re-engaging with services. • A study of 61 Black African, Black British and Black
Examples of their previous experiences included being Caribbean service users and carers reported that
given the incorrect medication and the subsequent erosion one-third described their experience of mental health
of trust in mental health services, and insufficient aftercare services as ‘frightening’. The fear of the use of medication
following a hospital stay. as the first response to mental distress was
a consistent theme throughout this study’s report.
• Several studies focused on Irish and Irish Traveller A few of the participants said they were reluctant to engage
communities. Fears of re-engagement based on previous with services when they felt themselves ‘going off’ because
experience of mental health services were also noted they did not want to be ‘injected’.
among these samples.
A service user from another study commented:
Confidentiality
The fear that their confidentiality would not be respected was –
Man they said I was mad, mad till I was dangerous…
a common theme among mental health service users. One what I say is I not mad, I sad and pissed off. I don’t
study highlighted this issue with reference to the difficulties have the energy to do anybody anything… but I was
they encountered in finding participants to take part in their classed schizophrenic and injected all over the place.
project. Service users were reported to be suspicious of the
The study reports included a few comments by service users
work, and it was considered by the community researchers
on the fear of people with mental illnesses that they sense
that the fear reflected ‘years of mistrust’ built up while using
among staff, and that this leads them to administer high doses
mental health services.
of medication.
A fear of lack of confidentiality was particularly apparent
when study participants discussed talking therapies. While 4.1.2 Community members’ fears of mental
these therapies were often highlighted as being a positive health services
way forward with which service users would like to engage, Many studies explored perceptions of mental health and
fears were expressed that the session would not be kept mental health services with community members who had
confidential, but shared with other mental health service staff: little or limited knowledge of either, but were reporting their
personal and cultural perspectives. Their fears were especially
–
I feel happy with counselling but I don’t feel totally safe concentrated on shame and stigma, but they also feared
with whom I am talking to, because my experience with not being understood because of their language, culture and
the services is that things come back to bite you. faith or religion; the Mental Health Act’s statutory powers;
–
I would rather talk to my cat than talk to a counsellor: racism; the lack of confidentiality; and the negative effect on
it’s about trust, at least my cat isn’t going to talk. their employment prospects of being labelled ‘mentally ill’.
Shame and stigma Particular concern was expressed around mental health
The fear of shame and stigma of having a mental health problems impacting on Orthodox Jewish marriage
problem was a recurrent theme in the majority of reports, arrangements (shidduchim) and family reputation:
regardless of the ethnicity of the study participants.
–
If you go to a professional from the community… here is
For example:
a fear, it might stop you from going to an Orthodox
• One study of over 160 people, from varied ethnic Jewish counsellor... There is a sense of isolation… you
backgrounds, found that a large majority would be are scared that the Orthodox Jewish counsellor will sit
prevented from accessing mental health services owing in judgement of you. The default mode is judgement!...
to stigma. [the counsellor will] figure out which sect or family you
are from… that is why people opt to have no help.
• A study of 80 women, most of whom were Muslim, found
that they were reluctant to use mental health services owing • A study exploring the mental health care needs of elderly
to stigma, coupled with a reluctance to relive painful Chinese people reported a taboo on sharing negative
past experiences. emotions and the fear of being ‘looked down on’:
• The main fear of three-quarters of a sample of 50 South –
It’s a disgrace to tell others about your negative
Asian service users and carers was that others would emotions or problems in your family and [the Chinese
discover that there was mental illness in their family. communities] fear to be look down by others.
• In a study of over 150 Pakistanis, just over half reported
• A study of young male prisoners from a variety of
that their community is ‘afraid of mental health problems’.
ethnic backgrounds found similar concerns of stigma in
The vast majority would feel ashamed of any mental illness
the prison population:
and would want to keep it secret. Half the sample thought
that the reluctance of the Pakistani community to approach –
I don’t want people thinking I’m off my head if I went to
services resulted from this fear (although language was a mental health service.
perceived to be the greatest barrier to service access, as
discussed in section 4.3.1). • Studies featuring Black Africans reported that ‘African
families fear the stigma of the “mental health” label’ and
• Half of a sample of 100 South Asian women, including that ‘It is un-African to seek help for stress’.
service users, felt there was ‘shame and dishonour’ in
asking for help with a mental health problem. • The reluctance to acknowledge and seek help for a mental
health problem because of the shame and stigma led some
• Concerns about the negative impact of mental health reports to express concern that mental health service
problems in the family on marriage prospects were providers may not recognise that some Black and minority
particularly reported from the studies on the South ethnic patients are vulnerable to suicide. These reports
Asian communities. Samples of elderly Chinese people, pointed out the relatively high rates of suicide among
Orthodox Jews and of Turkish, Turkish Cypriot and young South Asian women and among young males from
Turkish Kurdish people also discussed this issue and how the Black Caribbean, Black African, Kurdish and
the stigma of mental illness was a barrier to help-seeking Turkish populations. In addition, a study of asylum seekers
because it affected the marriage prospects of members of and refugees of a variety of ethnicities reported that suicide
both females and males in the family: was ‘mentioned frequently by respondents’.
–
People will not talk about mental [ill] health as it
Language and interpreters
will affect the marriage prospects of members of the Issues surrounding language, interpreters and translators is
immediate family. discussed in detail in section 4.3.1. Fears of not being
–
Everything is hidden under the carpet. It is about family correctly understood because of poor English language skills
shame and honour. If it’s a girl, she will not be able to were voiced in all the reports where study participants’ first
get married, if it’s a boy then what about his future? language was not English, but was particularly reported from
studies of elderly people. For example:
• Two reports on Jewish people highlighted the issue of
stigma and the ramifications for family and community: – One of the studies of Chinese communities reported
that the biggest fear in terms of accessing services was
– People are not scared of the disorder as much as they language (with stigma, feeling ‘faceless’ and a lack of
are afraid of the social reaction. trust of western medicine and health professionals
reported as lesser concerns).
Many study reports noted that when interpreters were used in Furthermore, it was felt that a lack of understanding, and even
mental health settings, there was fear that the translation might a clash, with Jewish outlook/law (haskafa/halacha) could be
not be accurate and would lead to misdiagnosis. In addition, problematic in terms of diagnosis and treatment. For example,
the fear that the interpreter might not maintain confidentiality one respondent noted the importance of hand washing as a
was voiced in some reports. halacha and the potential for elements of this to be
misinterpreted as obsessive compulsive disorder (OCD) by
Cultural, faith and religious misunderstanding those who do not understand the detailed prescriptions of
Mental health services’ cultural competence – including issues halacha. These fears were reported to lead to a resistance
surrounding faith and religion – is discussed in detail in by Jewish people to engage with services.
section 4.3. Muslim, Bangladeshi and Jewish study
participants particularly feared that cultural, faith and religious Statutory powers
misunderstanding might result in incorrect diagnoses and One study explored fear of the statutory powers of the
that services would be overly reliant on western medicine’s Mental Health Act 1983 as a barrier to Black and minority
diagnosis and treatment modes. For example: ethnic people accessing services, heightened by a lack of
knowledge of the powers of the Act. There were different
–
Treatment must be made within the parameters of fears according to study participants’ ethnicity: the Arabic-
our [Jewish] religion, otherwise the clash within the speaking and Portuguese samples feared never being
patient’s mind between his [sic] culture and his released from hospital; Chinese people feared being treated
treatment would exacerbate the problem, not help it. with unnecessary force; and Polish respondents were most
concerned about medication, particularly being given
Several reports highlighted the conflict between mental health
unnecessary or incorrectly prescribed medication.
services and their sample’s belief in ‘black magic’ and jadu
(or jadoo) and possession by jinn. For example: Another study, of 234 asylum seekers and refugees of a
variety of ethnicities, reported that:
–
Mainstream services offer services that cater mainly
for white people, therefore understanding particular –
Respondents expressed genuine fear and anxiety about
problems of Asian [belief in] jinn possession/nazar approaching people in mental health services for fear
(evil eye) etc will not be understood by doctors, of being sectioned.
psychiatrists and counsellors.
Racism
Several studies among Muslim communities documented the Overall, the study participants were more likely to report
reported reactions to Muslims by others because of violent fear about services’ lack of cultural competence than of
extremism (particularly the so-called ‘post-9/11 syndrome’ overt racism. However, the exception was among studies with
and the associated negative image surrounding Islam). Links young people, where negative stereotypes and perceptions of
were made in some studies between this and a diagnosis of mental health service staff were held by some:
mental illness:
–
Racist people work there [mental health services] and
–
I personally feel we’re categorised as mentally ill… will try and drug you up.
when you get a little bit passionate about what you
Further discussion of perceived and experienced racism in
believe in you’re seen as getting a bit crazy… like they
mental health services can be found in section 4.3.6.
see you as you’ve lost the plot.
Confidentiality
– To be constantly portrayed in the media the way we
Among those who were not mental health service users,
are… I do think as soon as you walk into a mental
fear about a lack of confidentiality was a particular issue for
health service then you are dealing with this, because
asylum seekers, who thought that accessing these services
that’s how you are seen.
would adversely affect their asylum applications. For example,
The tension between religious beliefs and psychiatric practice a study of 100 asylum seekers and refugees found that more
was a recurrent theme in two studies of Orthodox and Ultra than half feared that information shared with mental health
Orthodox Jewish communities. One of the reports noted that services would not be kept confidential.
the Jewish Torah states that it is a sin to be unhappy and that
A study of 141 Gypsies and Irish Travellers also reported fear
this may make it difficult for people from these communities
of lack of services’ confidentiality among the participants.
to acknowledge mental health problems:
–
Questions arise for the individual as well as the family,
as the obligation of any Jew cannot be upheld leading to
the question ‘what is my role in this shameful illness and
what shall I do about my not feeling happy?’
– A study of Gypsies and Irish Travellers reported that • Six Black Caribbeans and two Black Africans recounted
an underlying cause of mental health problems among their experiences of mental health services in one of the
them was that they had to live in ‘bricks and mortar’. studies, showing that, as the report summed up:
The study detailed several instances where the only
–
The focus was on medication to calm the individual
effective treatment was moving back into a trailer:
and control the signs and symptoms of their illness.
– We moved into bricks and mortar. After a short time Pressure on bed-spaces meant that the least ill were
being on our own away from friends and family, discharged ‘patched up’, without the underlying cause
which we were not used to, I found myself in a of their distress being resolved.
distressed state. I went to the local doctors who gave
• A study among 50 South Asian service users, carers and 30
me prescribed drugs for my nerves [but] I did not
mental health professionals concluded that medication was
settle in the 9 years that we were there... I had two
used because it was the cheapest and easiest treatment option:
nervous breakdowns so we decided we would buy a
trailer... I am very happy to be back in my trailer with –
There was a view that prescribing drugs seems less
my own kind. costly compared to longer term intervention ‘particularly
when you are not sure what to do anyway’, said one
– Several studies of asylum seekers provided horrific of the professionals.
accounts of the reasons some of their study participants
had left their home countries. In addition, they reported • Some of the participants in a study that included community
that the UK asylum-seeking process was causing them members from a variety of ethnic groups concurred:
severe distress (see section 4.3.4, for example). These –
I think it’s easier for them [for service providers to
asylum seekers reported that these experiences had prescribe medication only]. Because obviously it’s more
adversely affected their mental health. Because of these expensive to offer counselling and stuff... and to give
and their fear that their applications for asylum would people medication without offering any of the services
be rejected and they would be forced to return to their to go with it, I think it’s diabolical.
home country, many of them believed the effectiveness
of any treatment to be limited. The effectiveness of medication
Across the 79 studies, regardless of ethnicity, a majority of
4.2.1 Self-reported effectiveness of medication the mental health service users who had been prescribed
The study participants’ perceptions and experiences of medication reported that it was effective (although, as
medication to treat a mental health problem was a recurring discussed shortly, many experienced unwanted side-effects):
theme throughout the 79 reports. This issue is also discussed
in section 4.1.1 in terms of mental health service users’ fears – The tablets given relieve my tension and calm me down,
of being over-medicated; in section 4.4.2, which reports that I can sleep well now.
only a quarter of a sample of 22 service users thought that – I feel better when I take my medicine. I am very sad
medication was a factor that facilitated their recovery; and in when I don’t take my medicine.
section 4.5.2, which reports that the issue of what medication
is prescribed, and under what circumstances, greatly influences – When I don’t take it my mental health is unstable and
levels of satisfaction with mental health services. This section I feel ill. When I take it I get better.
presents an overview of perceptions and experiences of the – Minimises voices, reduces paranoia and makes me feel
effectiveness and cultural appropriateness of treatment with calmer.
medication. This issue was raised in around half of the
study reports. – Felt I was blind without the medication, now I can
suddenly see the person I am and everything makes
The ‘easy option’? sense, I feel back to normal.
Several studies summed up their findings by asserting that
– When you take depot injections you have less chance of
treatment with medication alone was the ‘easy option’ for
a relapse.
mental health services and strongly criticised what one study
called a ‘one size fits all approach to treatment’. As one study – I feel better, no more headaches, anger is controlled
participant put it, ‘I have been on anti-depressants for 11 years. more.
My treatment is all about swallowing pills’. For example: – The medication helped calm me down and give my
feelings a boost.
– It [medication] improved my mental state. I was able to
express my feelings and understand why I felt so anxious
and worried.
• A small minority of those who had been prescribed – [It] was very peculiar, because I would go down the
medication reported that it was ineffective or that it made street... and I would have this medication inside of me
their mental health problem worse. This group included and things would not appear normal any longer, they
those who had been taking it for many years: were always affected, and so it was all slightly surreal,
and I was being told this would be pretty much the
– Medication helps for short periods of time. Sometimes
accepted way of life... that I would be drugged up and
makes you more depressed in my opinion... gets to a
would keep walking around like this and slightly
period where the body does not take it anymore.
drooling and stiffness in joints... that is the cure, that is
– I think having injections is tortuous. I have been having how someone in their 20s or 40s or 60s is expected to
injections for 20 years and I still have to have them – be for the rest of their life.
it means that the medication is not effective.
• The following conclusion by one of the study reports was
• A few of the Black African, Black Caribbean or Black echoed by several others:
British study participants who had been sectioned under
– For some people, medication had been beneficial and
the Mental Health Act 1983 and reported that they
there were some improvements. However, because of
had been ‘forced’ to take medication also reported its
the suppressive nature of some medication, the natural
ineffectiveness. They believed that ‘they just use the
personality of individuals was affected and their true
medication to control us’.
identity tainted.
Side-effects of medication
Regardless of whether or not they thought their prescribed 4.2.2 Choice and combination of treatments
medication had been effective, the majority of the study Regardless of whether or not they thought that their medication
participants who had been using it reported unwanted to have been effective, the majority of the mental health service
side-effects. users who had been treated only with medication reported
that other and/or additional therapies would have made
• For some, the effectiveness of the medication outweighed their treatment more effective. However, it was clear that a
the side-effects. For example, one study included 53 mental choice and combination of therapies were not routinely offered
health service users from a variety of ethnic backgrounds to service users, as one study, of Black African, Black
who were taking medication at the time they were Caribbean, and Mixed White and Black African or
interviewed. Just over half were satisfied with it, despite Caribbean male service users, summed up:
almost two-thirds of them saying they experienced –
Despite the mounting evidence that an integrated
‘negative’ side-effects. approach is imperative, the medicalised outlook seems
• However, for other mental health service users, across the to retain its dominance... there should be a much better
reports and from many different ethnic groups, the physical choice provided to service users by offering more
and, especially, the mental side-effects of their medication complementary therapies and leisure activities.
outweighed the benefits: • Examples of the lack of combination and choice of
– My ankles were swollen and my arms, it even affected treatment include:
my vision and I became overweight. – A study of 50 South Asians with current or previous
– I am not sure if I tried to kill myself because of me, mental health problems reported that:
or because of the medication. – A whopping 69% of the targeted population was not
–
Mood off, feel lazy, unmotivated, not interested in offered any choice in their treatment plan.
anything, skin rash. – A study that included 37 male South Asian mental
– It makes me feel in a good vibe and helps me feel normal, health service users reported that 25 (68%) of them
but I feel paranoid when the effects wear off. had not been offered any alternatives to medication.
–
It makes me think clearer but it also feels like... – Of a sample of six Black African asylum seekers and
everything is happening in slow motion. refugees who had accessed mental health services, only
– I call them cobweb tablets, it feels like you have cobwebs one had been offered a choice of treatment (included
all over your face when you take them. counselling and relaxation techniques).
• Across the studies and the different ethnic groups, there Self-reported effectiveness of talking therapies
were countless comments from participants who wanted There were far more positive than negative comments from
a choice and combination of treatment, of which the mental health service users, regardless of ethnicity, gender
following are only a very small example: and age, about the effectiveness of talking therapies (in both
community and clinical contexts). For example:
–
Psychiatrists should listen to patients more and get
them into therapy, not just give them tablets. – [The counsellor] is really helping me to reach my goals.
I have received a lot of help... it really helped my mental
– They just want to prescribe you meds, that’s always
wellbeing.
the issue, I just don’t go now, I found different
coping mechanisms now... I knew I needed to speak to – You need talking therapies, counselling, to get to the
somebody [counsellor]. bottom of the problem, to find out about the cause of
your problem and then to try to treat through talking.
– The medicines gave me a lot of side effects, but it did
help me to relax. I would have liked to see a counsellor – It [counselling] allowed me to discuss my problems
for longer as that was helping me. openly and confidently, also allowing me to realise I
was not alone in feeling how I did.
–
She [doctor] gave me tablets, but they didn’t help
much – they just give you tablets for any problem, – I had counselling offered by my GP. It is really good.
no alternative care. I was in denial about my illness and it made me see
things in a more positive way.
– [Treatment should be] other ways than just giving out
tablets – we need long term help. • As discussed in section 4.5.9, the effectiveness of talking
therapies was reported to be greatly dependent on the
• Several studies reported that many of their samples of
therapist’s cultural competence, especially whether or not
mental health service users – particularly those who
they and the patient could communicate in the same
were older – were not content to accept medication only.
language and the therapist understood the patient’s
For example, a study among Polish, South Asian and
culture. One of the study reports put it as follows:
Ukrainian people aged 60 reported that they wanted
‘different varieties of therapies such as counselling, yoga, –
[There can be a] ‘clash of culture’ between mental
acupuncture, stress management, meditation’: health professionals and service users, which inhibited
an ‘opening up’ by the service users. Although the
–
Although many of our sample group participants are importance of talking was emphasised [by study
not formally educated, they are well-informed of the participants], it was said that not everyone wants to talk
potential harm and side effects of certain drugs, either to a counsellor where the ‘clash of culture’ may emerge.
through family members or friends. In the past couple of
years more and more people have become exposed to • Many study participants qualified their enthusiasm for
the benefits of alternative and complementary therapies. talking therapies by stressing that cultural competence
Therefore, participants are willing to try out new ways was key:
of healing.
–
All I want and need is to talk to a therapist that shares
However, the report added, ‘the findings highlight that in my culture so that I can unload. It is easier to talk to
general mainstream services are lacking a holistic approach’. someone who knows and understands the culture. It is
so stressful trying to explain the social and cultural
4.2.3 Talking therapies taboos to people from a different culture.
Talking therapies are defined by the NHS as counselling,
cognitive behaviour therapy (CBT), and psychoanalytic • Nevertheless, talking therapies were commonly cited as
or psychodynamic psychotherapy. These therapies (for an effective alternative or addition to treatment with
individuals and groups) are provided by psychologists, medication only. For example:
psychiatrists, counsellors and psychotherapists, and in some –
We would rather talk about stuff than just be prescribed
cases by social workers, community psychiatric nurses a pill... I don’t really want the pills, I just want to talk
and nurses. Some voluntary organisations also provide about how I feel and just want to be understood.
low cost or free counselling services (http://www.dh.gov.uk/
en/Publicationsandstatistics/Publications/Publications – GP can only treat you with medication but you cannot
PolicyAndGuidance/DH_4008162). Although the overall share easily every problems or talk to them about the
impression from the study reports is that many mental health past which is disturbing me.
service users were unaware of the differences between the – I was crying out for counselling, but my GP did not
different talking therapies, the majority nevertheless thought suggest it.
that their treatment with medication would be more effective
if it included ‘someone to talk to’.
– No one had time to listen to my problems at the hospital... • A study among Black African, Black British and Black
There was one really nice nurse who did listen but she Caribbean mental health service users reported a distrust
was generally too tied up with hectic ward life to have of services’ confidentiality (see section 4.1.1) as a reason
time to listen. for the reluctance to accept treatment with talking therapies:
4.2.4 Complementary and ‘alternative’ therapies • Two studies of elderly Chinese people reported that some
Twenty of the 79 study reports discussed complementary or of their participants thought Chinese herbal remedies,
so-called ‘alternative’ therapies. Ten of these were reports on homeopathic remedies and acupuncture were effective
studies of older adults, the majority from the South Asian and treatments for mental health problems or for maintaining
Chinese communities. mental wellbeing. These studies also reported that:
Black African, Black British and Black Caribbean • As discussed in section 4.5.10, a study of asylum seekers
study participants and refugees included a clinical comparison of the
The issue of complementary therapies was discussed briefly effectiveness of counselling and gardening therapy
by Black African, Black British and Black Caribbean among twelve men (from a variety of countries) who
mental health service users in five studies. These study were experiencing symptoms of Post-traumatic Stress
participants wanted an increased use of these, particularly as Disorder (PTSD). The gardening therapy was found to
alternatives to the medications they were currently using. be the most effective, and the men found talking therapy
more distressing than helpful:
Although few were specific about the types of complementary
therapies they had received and their effectiveness, music and – The CORE [Clinical Outcomes in Routine Evaluation]
art therapies, herbal remedies and swimming and relaxation assessment also revealed that the gardening therapy
therapy attracted positive comments. In addition, a study of had a direct better therapeutic effect than the
Somali service users noted the reliance on ‘traditional talking therapy.
healing’: • As the report summarised, gardening allowed them to
concentrate on doing something rather than reflecting on
– Traditional healing has been practiced in Somalia since
their experiences. Comments from the men include:
time immemorial. It is still today the only medical care
accessible to the vast majority living in rural areas. – This is important as I sometimes do not want to speak
Even in the cities, traditional healing practices have and working in a garden helped me move away from
a prominent role. Trained medical physicians may be my thought.
consulted only if the traditional medical practitioner
– The garden has changed my life. I feel like someone,
fails in his/her performance.
a human being. I feel listened to and understood. People
Other ethnic groups here are very kind.
Several studies among ethnic groups other than those noted • The study report concluded that the comparison provided
above reported on the use of, and preference for complementary evidence that traumatised asylum seekers may need
therapies among their samples, demonstrating a belief in services that are not in a ‘western orientated format’,
their effectiveness: including in cases where English language skills are poor:
A minority of a sample of 19 older Vietnamese
– –
It may be more appropriate to use non-talking
mental health service users thought that other therapeutic approaches as a first step engagement.
Vietnamese people in their age group would use Different approaches may include art, drama, music,
various complementary therapies, especially massage sport and other forms of occupational therapy... arts
and mediation, to treat their mental health problems. and crafts, drama therapy, gardening, sports, pottery
– Two mental health service users in a study of Irish and any other physical activity. An aim should be to
people had accessed art therapy and both found it to address the wider framework of mental health issues
be effective. by reducing isolation and giving people a purpose
through these activities/reduce their levels of anxiety
– A study that comprised 85 older Bangladeshi, Chinese, by engaging in purposive learning social activities.
Nepalese, Indian and Pakistani people with mental
health problems reported that 92% said that if offered, 4.2.5 Social interaction and participation in activities
they would take up complementary therapies such As discussed in section 4.4.2, a sample of 22 Black African
as homeopathy, meditation, acupuncture, massage, and Black Caribbean mental health service users thought that
Traditional Chinese medicine, tai chi and yoga, being engaged in meaningful activity, ‘keeping busy’ and
especially instead of, or in addition to their prescribed doing ‘normal’ things were key factors in their recovery from
medication. mental illness. This echoed many study reports that summed
– 12% of a sample of 65 Black African, Black Caribbean up participants’ perceptions of what would be effective in
and Bangladeshi mental health service users used treating their mental health problems:
complementary therapies. In the same study, a focus group –
The respondents are looking for ‘one that works’,
of five Black Caribbean male service users wanted their a service/resource that captures a whole range of
treatment to include massage and acupuncture. needs. Respondents described this as ‘something that
helps us reintegrate back into society’, ‘peaceful’,
‘feel accepted’, ‘feel loved’, ‘stronger voice’, ‘social
activities’, ‘discussions about anything’, ‘befriending to
reduce isolation’, and to ‘feel part of the community’.
The overall message from the study reports is that these needs – When a sample of South Asians aged 50 and over were
should not be viewed separately from medication and talking asked what they liked about attending community centres,
therapies in terms of improving mental health. As a study of drop-ins and day centres, the following comments were
asylum seekers and refugees pointed out, recounting their typical:
trauma via talking therapies was a treatment option, ‘but not a
– I like to talk to other people and knowing that other
necessity, as gaining the simple functioning tools to survive
people have the same problem as me.
through one’s distress/depression/anxiety were more essential’.
– Performing yoga, making new friends and going out.
The majority of the reports – across ethnicity, age and gender
– clearly showed that social interaction and taking part in – A study of 68 elderly Chinese people reported that:
activities was thought by mental health service users to
–
Findings indicated that the elderly luncheon club
maximise the effectiveness of their prescribed treatment: the
had certainly enriched the life of the Chinese elderly.
majority of service users and also non-service users who
They often expressed they were happy that they could
reported that they had mental health problems said that some
socialise with others or play mah-jong with their friends
of their symptoms had been alleviated in this way. In addition,
when they came to the luncheon club.
ex-service users and those who had never had contact with
mental health services stressed the effectiveness of formal and • The value of social interaction and activities as treatment
informal socialising and participation in other activities as a for mental health problems is underlined by the many
means to maintain their mental wellbeing. The benefits were requests for them from the study participants when they
reported to accrue whether or not the social interaction or were asked what they wanted from mental health services.
activity was described as a ‘mental health support service’ or For example:
a ‘peer support group’ provided by a mental health service,
or were the result of self-help initiatives. –
As discussed in section 4.3.4, men’s groups were
requested by Black Caribbean, Bangladeshi, Somali
Perceived effectiveness of social interaction and South Asian mental health service users. A sample
and participation in activities of Bangladeshi men requested this after taking part in
The study reports were replete with participants’ accounts a focus group:
of how social interaction and participation in activities had – They found the approach of the focus group wonderful
been beneficial to their mental health. The following is only in that they were listened to. They said it was the first
a small selection of their experiences: time they had such a good experience where they
– [Mental health service] users and carers were most were respected and given dignity... They said it made
resourceful in utilising a wide variety of means to them realise that they could help and support each
support themselves with their mental health and in other.
their caring role. Some of these were self-generated – There are no places to go, don’t want to go to mental
and some were part of formal service delivery. Social health places. Want to go to social clubs where there
activities were valued, both in the home and outside, are lots of activities and things to do. Things to look
as well as outings and longer trips... Others kept forward to where there are people of all ages and
physically and mentally active with exercises, classes backgrounds. (South Asian)
and hobbies, TV and the internet. (Report on a study
of elderly South Asians) – For me, it would be more social settings such as
drop-ins, groups, so that it’s a way in to services
– Since I have been coming into [community organisation] without being called a service as such, so it’s based
my mental health has improved a lot. I am glad that they on a social activity with the added thing of building
have been there to support me even when I lived out relationships, trust, self-esteem. (Irish)
of the area. I have improved a lot since seeing other
African Caribbean people like myself. Staff are a good A study among Black African, Black British and
–
help if I need anyone to talk to. Black Caribbean mental health service users
reported that:
– As discussed in section 4.3.4, the positive benefits of
women’s groups was particularly reported by South – Several spoke about the lack of practical help to
Asian women with mental health problems. develop an active, fulfilling life on their return to
the community... There is a need for constrictive
‘meaningful’ activity for most people... There was a
feeling that life/survival skills were important and
that doing something practical/participative or group
activities, would create variety.
4.3 Culturally appropriate treatment • A plea for cultural competence in mental health services
was a very common request from study participants
and interventions and from the community organisations (as evidenced
A culturally competent service operates effectively in different by the recommendations in section 6), although many
cultural contexts so that the needs of all members of their did not define ‘cultural competence’ or concentrated on
target population can be met by equitable access, experience, only a few issues, such as language, religion or gender.
and outcome. The DRE vision of service characteristics for One of the studies pointed out the limitations of their
2010 addressed this by calling for treatment and interventions piecemeal approach:
that are ‘culturally appropriate’ and ‘a workforce an
– [When designing the research instrument] we seemed
organisation capable of delivering appropriate and responsive
to have defined culture in institutionalised criteria –
mental health services to Black and minority ethnic
language, diet and religion/spirituality. On reflection
communities’.
at the end of the project, there were other categories
The data from the study reports presented in this section and which were relevant and would have provided a
the subsequent recommendations from the 79 study reports more detailed insight into culture and mental health
(section 6) add up to a strong need for greatly increased cultural services. e.g. music, hair care, personal care,
competence by mental health services. superstitions, traditions, family/social relations etc.
This section is structured according to the practical issues Several study reports reflected on the meaning of cultural
raised by study participants in terms of mental health services’ competence in more depth. For example:
cultural competence (or, more usually, the lack of it, although – Service users and service providers have differential
some examples of good practice were reported): language, understanding of the scope of cultural needs. For
faith and religion, food, gender, the ethnicity of mental health example, the service users consider personal care, food
service staff and racism in mental health services. It is not provision, spirituality, or configuration of social
intended to suggest that these categories comprise the entire relations as part of their culture. On the contrary,
range of the elements defining cultural competence, nor that the service providers merely include language and diet
they exist in isolation from each other or from the issues raised in their interpretation of cultural need.
in other sections of this report.
–
Cultural competency in mental health services
The data in this section, gathered from all the ethnic groups provision is much more profound than tokenistic
that participated in the project, illustrate the complexities of gestures of providing prayer corners or meeting
achieving the DRE visions of the service characteristics dietary requirements i.e. provision of halal [permissible
‘treatment and interventions that are culturally appropriate’ according to Islamic law] food etc. Deep-rooted
and ‘a workforce and organisation capable of delivering centuries of old cultural and religious values –
appropriate and responsive mental health services to BME belief systems, should be considered at diagnosis and
communities’. The critical responses to the DRE framework treatment stages.
(Department of Health 2005a, pp.76-77) include:
– De-contextualisation of people from their experiences,
– Cultural competence or capability was a sophisticated culture, notions of their self, religion and spirituality
process that really needed radical reform in training, leads to inequalities in mental health services.
in continuing professional development, and in the way
organisations undertook their roles. It was not a toolkit, • As the data in sections 4.3.1 to 4.3.4 reveal, it cannot be
a quick fix, or an accredited training course that only over-emphasised that this project’s study participants
practitioners or only white people needed. wanted their language, faith and religion and their dietary
and gender requirements to be understood by mental
Several of the study reports also recognised this. As one health service staff during their diagnosis, treatment and
of them put it: aftercare: as several reports put it, ‘feeling they matter’,
‘feeling they are respected’, and feeling that that mental
– There are no short cuts and all health professionals
health service staff ‘had made an effort to find about their
must be prepared to take more time to understand,
culture’. Some service users appeared to be resigned to
empathise and work competently with Black and
the current situation, however:
minority ethnic communities.
– Some stated that the current levels of support they were
This issue is elaborated in the commentary by Jonathan receiving was the most they could expect and hope for
Bashford at the end of section 4.3. given the language and cultural barriers, and the lack
of awareness and understanding of Asian mental health
issues on the part of the families, the wider Asian
community and mental health services.
• The samples of several studies included service providers • Some of the project’s participants recognised that it is
who worked in areas with relatively low numbers of difficult for service providers to understand all aspects of
Black and minority ethnic populations, or where these their culture. For example:
populations were new in the area (asylum seekers or
– It was a generally held view [by study participants] that
migrant workers, for example). They therefore had little
with regard to the values and beliefs system of Asian
(or no) experience of working with these client groups. In
communities, professionals can hardly scratch the
a sample of 26 service providers in a rural town in the far
surface – it is difficult to reach the deep rooted value
south of England, for example, five thought that nothing
systems and their experiences. The Asian communities...
needed to considered when engaging with the local Black
realise even if these values and beliefs are cause for
and minority ethnic communities:
concern, these are not up for questioning.
– All referrals are treated the same – no group is given
– The research finds that while it is perhaps quite easy for
preferential treatment.
the current providers to make an effort to meet African
– We already treat everyone as an individual and tailor and Caribbean dietary needs, it would be more difficult
their care to their needs. for the current service to meet more complex needs.
The study report commented: Comments from study participants on this issue included:
–
Service providers should improve their knowledge – We understand that we are living in the UK, but just like
about the local population. Service providers should we follow their rules and regulations for things, they
not assume that if they have no Black and minority need to try to understand that we cannot change our
ethnic clients then there is no need to reflect Black and culture and tradition because this is what we have been
minority ethnic individuals’ needs. taught/brought up with.
However, it should not be assumed that cities with large – The psyche has not changed, it has been transplanted
and established Black and minority ethnic populations into a foreign place.
have ‘got it right’. A study that took place in a city in the
• One of the reports discussed the limitations of current
East Midlands with a higher proportion of Pakistani,
training in cultural competence or diversity:
Chinese and Black Caribbean people than England as a
whole reported that: – NHS staff may feel the amount of essential knowledge
about BME groups and individuals is overwhelming –
–
[The city’s mental health services] have a limited
and it probably is... often the information requested and
understanding of cultural needs and they, many
conveyed [during training] was religious and general
participants said, emphasise merely language and
cultural practices; often about ‘dos and don’ts’ with
disregard dietary, religious, emotional and medical
certain ethnic groups/cultures/nationalities.
needs of the service users of Black and minority ethnic
communities. Many of the study reports recommended that cultural
competence could be achieved by the involvement of Black
Consequently, as one study participant put it:
and minority ethnic community members and community
– Every time I go to the doctor I am asked if I need an organisations in cultural competence training for mental health
interpreter, even though my first language is English. service staff. That said, many were not specific about the
To me this shows that language is the only cultural nature and content of the training that they could provide.
need the services are concerned about.
4.3.1 Culturally appropriate treatment and • As shown in section 3.5, this project identified 131
interventions: language languages and dialects in which the sample of community
This section details the issues raised by the studies concerning members reported fluency. In some studies, few of the
language: the effect of the language barrier on mental health participants’ first language was English and in others,
and on diagnosis and treatment, literacy, cultural and medical although participants could communicate in English, they
terminology, interpreting and translating services, and preferred to do so in their first language. For example, a
learning English. study of 167 people (mainly women) from a variety of
Black and minority ethnic populations reported a total of
• The mental health service workers that service users and 22 first languages among the sample. Two translators were
their carers and families may communicate with include attached to this study and the questionnaire was translated
receptionists, GPs, interpreters, counsellors, nurses, social from English into six other languages. In such instances,
workers, community psychiatric nurses, care workers, the value of the ISCRI approach to community engagement
psychiatrists, psychologists and psychotherapists. They (section 3.2) is clear: community researchers who can
may also need to read items such as information about their speak the relevant language(s) are recruited from the
illness and treatment, letters of appointment, instructions communities being studied.
on taking medication and its side-effects, and care plans.
• There is some evidence from the study reports that
• The action plan in ‘Delivering race equality in mental satisfaction with mental health services was greater
health care’ (Department of Health 2005a, pp.38-75) among those who could communicate effectively in
includes that all mental health services (clinical, support, English, those whose service providers spoke the same
information and advocacy services) must be linguistically language, or those who were satisfied with their interpreters.
appropriate because access to services and patients’ role in However, the problems experienced by those whose first
their recovery ‘can be restricted by language difficulties’ language was not English were discussed in some detail
(p.65). Language-specific measures in the action plan by 60 (76%) of the 79 study reports. The remaining 19
include: studies’ samples consisted of members of ethnic populations
– strategies such as joint commissioning to ensure adequate whose first language was English and they were not asked
investment in linguistically appropriate independent questions on this issue (their samples comprised Black
advocacy services; Africans, Black Caribbeans, Gypsies, Romany Gypsies,
Irish people, Irish Travellers, Mixed White and Black
–
patient Advice and Liaison Services (PALS) to be Caribbeans, Orthodox Jews, and White British people).
equipped to deal with different languages; Nevertheless, many of these studies – and others that
– provision of information in different languages; included members of these populations – commented on
poor literacy among their samples and their lack of
– fulfilment of the NHS Plan commitment to provide understanding of the jargon and terminology used to
a national interpretation and translation service, so describe mental health problems and treatment.
that all NHS organisations can access a telephone-based
interpretation service, British Sign Language interpreters • Language was identified as one of the major barriers (or, in
and a service for the translation of written material such some reports, as the major barrier) to mental health service
as documents, leaflets and websites; access by a large proportion of service users, carers,
community members and service providers. The need for
– dissemination by NIMHE of good practice examples on
information and interaction in a language they could
the use of languages other than English; and
understand was very commonly expressed:
– patients’ language to be recorded by services along with
– We need somebody to translate and interpret so that we
other demographic data.
can understand them and they can understand us.
– General public think you’re not clever enough – you are • The effect of the language barrier on the mental health of a
measured by your English. sample of Kurdish, Turkish and Turkish Cypriot people
was summed up by two study participants as follows:
– It is to lose face [in the Chinese communities] if you
cannot communicate with the English. – The biggest problem we experience is the fact that we
can’t speak English… you receive a letter but you cannot
Almost one-third of the 79 studies reported that the inability understand it. When you are unable to solve simple
to speak English was a major factor in the social exclusion problems, you feel depressed.
of a large proportion of their samples and that this adversely
affected their mental health. – With the language I am very depressed that I can’t help
my children with their homework, I can’t dial a number
to talk to a friend or make an appointment if I needed. I
wish to be a confident mother and woman, I want to go
shopping and catch a bus that I know where it is going.
Problems relating to the cultural and medical terminology Given the results reported in this section, it is unsurprising that
surrounding mental health and mental health services became a commonly expressed need, regardless of ethnicity and age,
apparent when the community organisations translated their was for information about mental health and mental health
questionnaires into the languages of the target samples. Many services – whether in English or another language – to be
studies (particularly those concerned with the South Asian jargon-free and simply worded.
communities, especially elderly people) reported how the
community researchers had discussions to ensure that ‘certain It should be noted here that several studies, particularly those
concepts and phrases were applicable when translated and not among Black Africans and Black Caribbeans, commented
“lost in translation”’ in order that they obtained meaningful on the misunderstanding of the term ‘mental health’. As one
responses. They reported that this was more time-consuming study summed up:
and difficult than they had envisaged because, for example: – One of the main findings from this study was the
– In the South Asian communities there are no terminology significant amount of people who misunderstood the
for schizophrenia, bipolar, anorexia nervosa and manic terms ‘mental health’ and ‘mental illness’ (32% from the
depression etc. faith group, 32% from general public and 100% of focus
group)... People thought the terms ‘mental health’ and
There is no direct translation of ‘mental health’ in
– ‘mental illness’ meant the same thing and said they
Punjabi nor Urdu. referred to people who were not in their right mind... We
For some English words relating to mental health,
– found the term ‘mental health’ was often being used as
there is no equivalent in Somali, and the community a short way of saying mental health problems.
researchers ‘had to develop a new and particular
Interpreting and translating services
terminology’.
(Note: an interpreter translates orally or by signing and a
– Many [Muslim] participants felt comfortable in using translator interprets written text).
alternative terminology which they found helped
describe their experiences and expressed their emotions. Issues surrounding interpreting and translating as factors
Islamic terminology was used to describe alternative affecting access to metal health services and the treatment
forms of healing and support. experience were discussed in some detail by the 60 study
reports that included aspects of language in their
–
[We translated the questionnaire] from English to investigations. Translation and interpretation were seen as
Arabic… we also had to translate from Arabic to Arabic core issues that service providers must address because, as
due to the Arabic language containing several dialects, one study report stressed:
intonation and difference in meaning.
–
[Current] interpreting services did not seem to be
The community organisations’ work on translating solving the language difficulty in using primary and
questionnaires and clarifying terminology was clearly mental health services. This unmet need has led to
worthwhile. It not only meant that those who did not speak frustration, stress, disappointment and a feeling of
English or whose English vocabulary was only basic were being treated unfairly.
included in study, but also that study participants were able
to understand exactly what they were being asked and, as one Although a small minority of study participants were satisfied
study reported: with the interpreting and translating services they had received,
the study reports reveal significant unmet needs, regardless of
–
In many instances, the quality of the responses ethnicity, among those (especially elderly people) whose first
significantly improved whenever terms from the language is not English. The evidence includes the following:
appropriate community language were used to explain
and clarify key concepts. – One study included 76 Kurdish, Turkish and Turkish
Cypriot men who had used mental health services
A majority of the study reports made the point that, even if themselves or who had relatives or friends who had.
they spoke and read English, their samples found the medical The study reported that, ‘They all complained about the
terminology used by health service staff made it difficult to lack of opportunity to find a mental health worker or
understand descriptions of mental health problems (including psychologist who can speak their language and pointed
their own), services and treatment. This was the case even for out the difficulties of talking via interpreters’.
those who reported that they were fluent in English:
– A study of 42 elderly people of a variety of ethnicities
– Jargon – you just don’t understand them [doctors]. And reported that of the 32 who needed an interpreter to
I speak the same language. talk to their GP, 26 (especially women) had not been
offered one.
– To explain what’s wrong with you, even in your own,
first language is very difficult, so for others who struggle – 70% of a sample of 33 elderly Chinese people said they
with English, that must be really hard. needed an interpreter at health services and a further 9%
said they sometimes did.
DRE Community Engagement Study Key themes and findings 51
section 4
Key themes and findings
Lack of confidence in professional interpreters However, it was stressed by several reports that some languages
Many study participants had little confidence in the professional include different dialects and it should not be assumed that
interpreters they had been allocated. The main reasons given everyone who reports their language as Arabic, for instance,
were because the interpreter did not have any knowledge of can understand each other:
mental health issues and/or did not understand the patient’s
–
I went with a client to the mental health department and
culture. Many service users believed that their words were
the doctor was an Iraqi male. I went with her to support
therefore being incorrectly interpreted. There was a very
her as she said she wouldn’t go without me. He called
commonly expressed need for interpreters to be ‘qualified’ and
her in and refused to let me in and said that he can
‘trained’ in mental health issues and to be familiar with the
speak Arabic and there was no need for me to go in with
culture of those for whom they were interpreting.
her. When she came out he said that she was perfectly
Insufficient time allocated for consultations fine and there was nothing wrong with her, but it was so
using interpreters obvious that she needed help. When I asked her what
Several studies reported that the time allowed for consultations happened she said ‘I didn’t understand anything he said
where interpreters were used was too short: and because he was a male I was too shy to say anything
so I just kept nodding’. She never wanted to go to any
– I was not finished but my GP and my interpreter were mental health worker again and the problem here is
finished with me. I was still sitting down, they were already that he was a male and although he spoke Arabic he had
standing up. I mean, they don’t give you enough time. a different dialect. If the mental health services are
going to employ a worker to deal with the Yemeni
An interpreter interviewed for one of the studies agreed that
community then it should be a Yemeni worker from
time could be an issue:
within our community, as we would have the same
– I translate literally because it is very important that every accent and dialect.
word they say has meaning to my client and if I summarise
it’s because I have next appointment – that’s what happens Use of family and friends to interpret and translate
in the interpreting business – they have another Many mental health service users revealed their reliance on
appointment so they cut it short so they can get to another family members, friends and contacts in the community (such
appointment. But that is not what we are there for. We are as those from community organisations and places of worship)
there to help say their words to professionals so that to interpret during visits to a service. The reasons for this were
professionals will understand them. reported as the services’ inability to provide an interpreter and,
in some cases, because families were trusted more than a
Another interpreter reported that, because of time, service professional interpreter. There is some evidence from the study
users who needed an interpreter were not asked as many reports that women are more likely than men to take someone
questions during consultations as those who spoke the same with them to interpret at a consultation.
language as the consultant.
In most cases, the family member who interpreted and
Language of mental health service staff translated for the service user was from a younger generation,
A very commonly expressed need was for mental health because they had been born or brought up in the UK and so
service staff who speak the same language as their patients, had learned English. However, using younger members of the
so that interpreters are not needed: family to interpret and translate was not without problems.
– We want a service where the workers understand our They are not trained in interpreting and translating, nor in
language and not have an interpreter. We want to be issues surrounding mental health problems and treatment:
able to explain our own problems. – My son accompany me to hospital, I was told by my son
– I see her [counsellor] about once or twice a month... that a scan will cure my illness immediately... But it’s
She can speak Chinese and she can understand me one when I went to the hospital [for the scan] that I realised
hundred percent without any language barrier. If it is an my son had got the wrong message.
English speaker, the communication will still be limited
even if there is an interpreter.
– [I want] somebody to speak Polish language because
my mental health needs to be understood and I need to
explain what I feel.
– If there was a counselling service available in this area
in my language, I would be happy to attend.
A study among the Kurdish, Turkish and Turkish Cypriot Revealing mental health issues to a family member was also
communities stressed that young people taking on the discussed by a study among South Asian women who had
responsibility for interpreting and translating, including experienced domestic violence. For example, one of these
accompanying relatives to appointments, means they play a women reported that the man who was abusing her acted as
more active role in family decisions and activities. This, the her interpreter when she went to her GP to discuss her
study reported, along with the younger generations being mental health problems:
better educated than their parents, ‘undermines the patriarchal
–
The bad thing was that my English was not good,
hierarchy of the traditional family structure’. Another study
but they never arranged an interpreter for me. So every
among these communities reported that some young people
time my husband came and translated for me. I could
resent this responsibility:
not say much.
– I am fed up with all these adult responsibilities. Fill in
this form, translate this… I want to be with my friends. Despite these problems, however, a study of people from
Yemen reported that participants wanted the younger
In addition, a study of South Asians pointed out that the first generations to interpret and translate for older members. A
language of the younger generations may be English and it study of the Chinese communities agreed that the younger
should not be assumed they are capable of interpreting and generations should help the older by interpreting and
translating for the older generations: translating: its study participants wanted young Chinese
people to retain the Chinese language and culture and work
–
More often than not, their knowledge of the Asian
in the health services so that they could help the older
community languages is poor. To assume that they
members of their communities who used these services.
will be able to effectively communicate with an elder
speaking a pure regional dialect of Punjabi, Mirpuri or Interpreting and translating services for service
Hindko is to ask too much. users’ families
A few study reports discussed the difficulties service users
The use of family members as interpreters was reported to lead
who spoke English had in explaining their mental health
to service providers ignoring the patient during consultations.
problems to family members who did not speak English.
Some service users felt angry or insecure about this and that
These difficulties included the family not understanding how
their opinions and views were not important:
they could support the service user and could have been
– They kept asking my family and doing what they said, alleviated, study participants thought, by an interpreter:
not what I needed. There was no-one to talk to me in
– If someone could have explained mental health to my
Punjabi. They just gave me tablets and injections, didn’t
family in their own language the first time I was ill,
talk to me.
they could have been more supportive to me.
–
Because you don’t know the language you don’t
understand what they say, you feel they are talking Learning English
about you… they don’t even look at you, but you feel Many of the study participants (whatever their ethnicity) who
that way. could not communicate in English regretted this, reporting that
learning English would help them with social and cultural
– I didn’t understand what was happening to me and no integration and enable them to access mental health services
one took the time to explain to me in my own language. more easily:
A few reports noted that family members may have a ‘conflict –
I feel lost about how to access any NHS services,
of interest’ when acting as interpreters, and ‘with their personal because I don’t speak or write English, so I feel afraid
knowledge of the individual, may omit or alter some of if I need help – where will I go?
the content of what the service user is saying “in their
– If I learned the English language, I suppose it wouldn’t be
best interest”’.
so difficult when it came to communicating with services.
A service user may not want to divulge mental health problems
A few study participants also wanted to learn English so
to an interpreter who is a stranger, but they may also be reticent
that they could help others in their communities to have better
about doing so to a member of their family:
access, experience and outcome of mental health services:
– Our general perception is that most Asian elderly people
– We will help each other. I will go to the adult education
would prefer and trust their own family member to
centre and learn proper English to help my community.
translate for them, although it is uncertain whether they
would share all their issues with them.
The English language capabilities of the sample, regardless of • Reliance on family members to translate and interpret
the length of time they had been in the UK, covered a wide Several studies noted that some participants’ children
range, from fluency to those who could not communicate at all or other family members could communicate well in
in English. The latter group comprised some elderly people English and acted as translators or interpreters for those
from a variety of ethnic groups who had come to the UK as who could not. Therefore, there was little incentive to learn
adults, those newly arrived and some Chinese people of all English, even for those who had been living in the UK
ages. Those immigrants who spoke English in their home for many years.
country, or who had learned it before coming to the UK,
obviously found it easier to communicate once they arrived. • No previous knowledge of English
Nevertheless, some still experienced problems. As one of the One study report noted that immigrants from countries
study reports noted, quoting a participant from Eastern Europe: where English is not used at all (to communicate with
tourists, for example) found it harder to learn than those
Even for those who already speak good English, there is a who had some experience of the language.
‘settling in’ period whilst becoming accustomed to local
accents and everyday ‘non-textbook’ English... ‘I thought I • Lack of education
could speak English, I thought I had the basics cos… I was Some study participants, especially older people and those
studying for a few years, but coming to London, it was just from rural areas, had had little or no formal education in
the people were talking fast and slightly different from my their country of origin, and therefore found it hard to learn
teacher so… I was really fed up because people couldn’t a new language:
understand me because I was talking with an accent,
– It is very difficult for me to learn anything easily because
I couldn’t understand their accent, so it was very, very
I wasn’t educated in my country.
frustrating for me for a few months’.
• Time/long working hours
The studies variously reported the following barriers facing
A study of 44 older adults from the Chinese communities
those who wanted to learn or improve their English in order to
reported that they had limited opportunities to attend
address their social exclusion and better communicate with
English classes because they worked long hours.
mental health service providers:
• Lack of availability of English classes • Mental health problems
A comment in one report on the lack of English classes Two studies reported that mental health problems affected
was echoed by several others: the ability to learn:
–
The fact that many interviewees could speak a variety – I am severely depressed and lack concentration. I tried
of languages, some up to 7, indicates that it is not an for years to learn English but I just can’t. I attend ESOL
inability to learn a new language that is holding people [English for Speakers of Other Languages] classes
back, but rather a lack of encouragement and availability every day but I don’t seem to be making any progress.
of English language education. In addition, a study of 50 people (most from the South
Another study reported local cutbacks in English language Asian communities) caring for people with dementia
classes and a third noted that the cost of these prohibited reported that those with dementia forget their English
some from enrolling. language skills:
– First generation elders who have learned English as
• Lack of knowledge of English classes
an additional language will revert to their first language
Several studies reported that ‘Many [study participants]
as their dementia progresses.
did not know that English classes were available for
them locally’. The community organisations’ recommendations to
increase mental health services’ cultural competence in
• Age
terms of language can be found in section 6.3.1.
Several studies noted that older people found it harder
than younger people to learn English.
4.3.2 Culturally appropriate treatment and • In a study of 84 South Asians aged 50 and over (of whom
interventions: faith and religion 84% were Muslim), the importance of religion as an
As shown in section 3.5.9, 5,156 study participants reported interwoven element with all other aspects of life was noted,
their faith or religion. The majority were either Muslim (46%) and the following comment resonates with other studies
or Christian (29%). Smaller proportions reported that they working with Muslims, regardless of age and ethnicity:
were Hindu (5%), Sikh (5%), Buddhist (3%) and Jewish (2%), –
Faith continues to play an important part in the daily
while 6% reported that they had no faith nor religion. The life of the older people from the Asian communities.
remaining 4% included those who said their faith or religion For most, faith is their way of life. It provides the
was Ancestor Worship, Jainism and Rastafarian. framework for interpreting, understanding and
Some aspect of faith or religion arose in almost all of the managing their situations and predicaments in time of
studies. In some, there were explorations of the role of faith in need... older people wanted help [from mental health
emotional wellbeing and recovery from mental health services] that sat along their religious beliefs as this
problems, and some included ‘religion’ in lists of options was something they could understand and work with.
people may turn to when experiencing mental distress. The • The studies from Muslim communities that compared the
focus of this section is the data from the 36 studies that, in issue of mental health perspectives of Islam and western
varying depth, explored the spiritual needs of mental health models in any depth tended to focus on the dissonance of
service users and their experiences of using services. understanding between western psychiatry and jadu (or
This section comprises an examination of western models of jadoo) or ‘black magic’ and possession by jinn, described
mental illness against religious perspectives, with details of by one report as follows:
the experiences of Muslims, Orthodox Jews, Christians and –
Muslims believe that jinn are real beings. The jinn are
Romany Gypsies; statutory and voluntary services’ awareness said to be creatures with free will, made of smokeless
of needs relating to faith and religion; issues around the fire by God, much in the same way humans were made
difficulties of conforming to religious practice while accessing of clay. In the Qur’an, the jinn are frequently mentioned
services, such as regular prayer times and the effects of and Sura 72 of the Qur’an named Al-Jinn is entirely
medication; and the call for joined-up working between mental about them… the jinn have communities much like
health services and faith-based organisations in moving human societies, they eat, marry, die etc. They are
forward to create more culturally competent services. invisible to humans, but they can see humans… Jinn are
beings much like humans, possessing the ability to be
Several studies explored the perceived dissonance between good and bad… Evil beings from among the jinn are
western psychiatric models of mental ill health and religious roughly equivalent to the demons of Christian lore. In
perspectives, especially those among the Muslim, Orthodox mythology, jinn have the ability to possess human
Jewish and Christian religions. beings, both in the sense that they persuade humans to
Muslim perspective perform actions, and like the Christian perception of
A study of 87 Muslims (mainly Pakistani) noted the key issue demonic possession.
of the difference in approaches to mental health of Islam and In terms of mental illness, another study, among Somali
western psychiatry: Muslims, added:
– In Islam and in Islamic societies, processes have been –
Traditional concepts hold that ‘jinn’ mainly cause
developed to enable individuals to recover from mental mental diseases. These may cause the affected person to
distress and also a different conceptual framework for see images or to hear voices that are not perceived by
defining/diagnosing mental illness, but do not others… Normally a disease is accepted by the
necessarily match that of mainstream society/ individual and the family as the will of God (Allah). This
psychology. Central and core to this process is that is very helpful as a way of coping with the illness’s pain
the person needs to maintain a sense of direction and and distress with dignity and without having to recourse
anchoring and retain observance of prayer, fast and to desperate action.
Dhikr [Remembrance of Allah].
• One service user’s experience on being admitted to in-
patient psychiatric care illustrates clearly an issue raised
by others in terms of the contradiction between western
medical diagnosis and spiritual beliefs:
– I can remember when I was admitted I told them that I
felt possessed… there’s a whole chapter on this in the
Quran… but nothing I said made a difference… I was
sectioned and remained there for 6 months.
Two studies of Bangladeshi Muslims reported that ‘Black What was in fact a perfectly logical act within the man’s
magic has played a major part in some of the service users’ religious beliefs was, due to ignorance, completely
lives in relation to their mental health problems’ but that, misunderstood by the panel resulting in an incorrect perception
as one study participant put it: of his behaviour and thereby a miscarriage of justice by the
relevant professionals.
– Doctors don’t believe in Jinn and Jadu – they think it’s
[mental illness] a scientific issue. he same study reported how behaviour around preparation
T
for religious festivals could be seen as inappropriate
• The lack of a joined-up approach between faith and mental
when taken out of context and without knowledge of the
health services was considered to bring additional distress
religious requirements:
to those experiencing mental health problems, as summed
up in the following, from a report exploring the experiences – Sometimes the degree of normal needs to be understood
of Pakistani Muslims: within social context eg if a mother is upset/angry
because after Pesach cleaning (Passover preparation)
– What has been amply demonstrated through participants
for 3 hours, and a child then brings a biscuit upstairs.
involved in the research has been that they want to
A non-culturally aware care provider may consider this
see the development of services that take into account
excessive, however someone with cultural awareness
their faith and spirituality as central components to
will realise the seriousness of this.
promoting mental health and wellbeing. Simply
dismissing people’s faith traditions as being invalid can The consequence of these misunderstandings was a reported
cause further distress. distrust of non-Jewish mental health professionals:
Orthodox Jewish perspective – Most of the community are unlikely to trust non-Jewish
Experiences of perceived misdiagnosis because of religious or secular Jewish practitioners. The community requires
beliefs were also noted in studies conducted among Orthodox its own providers.
Jews. One of these studies recounted the following, which
illustrates well how religious beliefs can be misinterpreted as Christian perspective
dysfunctional behaviour: While none of the studies specifically explored the Christian
perspectives on mental health in any depth, concerns were
–
[The project’s research] uncovered the case of an raised about the lack of consideration of spiritual experience
Orthodox Jewish man in London who, in the middle of and religion in diagnosis, treatment and aftercare.
a Mental Health Assessment, began to constantly stare
out of the window at the sky outside. He seemed • In some of the studies, particularly among Black African
increasingly distracted and finally walked up to the and Black Caribbean inpatients, a small proportion of
window where, completely oblivious to the Panel participants with diagnoses of psychosis strongly refuted
Members in the room, he apparently began to talk to the that they were mentally ill, reporting what could be seen as
wall. The Panel Members were naturally extremely spiritual experiences:
concerned about his highly dysfunctional behaviour –
I heard angels directing my path and saw images of
and, apprehensive at the possible psychiatric reasons Armageddon. All the colours rose up to meet my foot fall
for this, unanimously recommended that the man be and I walked in the light for a time.
detailed for hospital treatment under the Mental Health
Act 1983 (commonly known as ‘being sectioned’). – I heard everything before I was told, I knew what was
going to happen and could predict the future.
It later transpired that this was a severe professional
misjudgement caused by an ignorance of the man’s – I didn’t want to eat or mingle, I just want to be with
religious needs and requirements. What had happened my God.
was that during the interview, which occurred during a
short winter’s afternoon, the man had noticed it was
getting progressively darker and reaching the final time
for him to conduct the afternoon (‘mincha’) service that
Orthodox Jews are required to pray daily. Getting
increasingly concerned that he might forgo the final
time for prayer the man then decided to pray there ‘on
the spot’. What he lacked, however, was the knowledge
and social skills to properly explain his actions to the
panel (it may well be argued that this was a symptom
of his mental health problems).
• A study of Black Africans and Black Caribbeans that • There was a marked difference in reports of faith and
included six inpatients with serious mental health diagnoses religious competence from the study participants accessing
concluded that: services provided by voluntary and community
organisations, where faith and religion were reported
–
It is clear that service users’ spiritual needs and
to be given a higher priority and understood to be an
Christian beliefs, in particular, are largely not taken
important aspect of life for members of some Black and
into consideration by the current service providers…
minority ethnic communities. As discussed in sections
but these needs appear to be a very important issue with
4.2.5 and 4.5.14, for instance, these services were greatly
black service users.
appreciated for the contributions they made to emotional
However, the extent to service users express their spiritual wellbeing and helping mental health service users with
needs to service providers was also raised by this study. As conditions such as depression. For example:
one service user commented: A study among 45 young male service users from a variety
–
There are many professionals who do not believe in of ethnicities included an exploration of services’
spiritual needs, so I do not talk about it because they understanding of religious needs. A range of questions
would not understand. were asked of service users and their carers, and although
response rates were low, the following findings were
Romany perspective reported, mostly from the South Asian study participants:
One study discussed the Romany faith, Muller Mush, and its
– seven felt there was a ‘poor understanding of religious
potential negative effect on mental health:
needs in services’;
– The belief in the Muller Mush is very strong especially
– three felt there was a poor understanding of religious
within the generation who lost their traditional stopping
festivals and their implications; and
places in the early sixties and were cleared off the
common grounds... This generation found themselves – two felt there was religious prejudice in services.
forced into bricks and mortar accommodation and
stress took its toll and the natural belief that bricks and • Two studies conducted among Black African, Pakistani
mortar housing may have a ghost in it that has not been and other South Asian Muslims stressed that service
put to rest. It can be a belief that for some manifests providers should not make assumptions regarding a
itself very strongly, and the situation can be amended by person’s religion based on their skin colour or name:
laying ghosts to rest or families understanding the – Not everyone who classes themselves as a Muslim is
knowledge of where they are living, and who was in the actually a practising Muslim. This information would
house before. Or the family just have to move. The belief prove important if setting up services, as assumptions
can be very real to the person involved. It can manifest cannot always be made regarding a person’s
into a psychosis that the medical profession may not requirements based on their religion – eg not all
fully understand, so it’s not talked about. It is linked to Muslims require halal food.
the belief that personal belongings of the deceased
person are burnt, including the caravan. Otherwise the – In order to respond to individual religious requirements
spirit lingers in the world. whilst accessing services, it is important that workers
know not to make generalisations but inquire of each
When asked how the mental health service can be improved to person what their needs are in terms of religion.
better meet the needs of Romany Gypsies and Irish
Travellers, services’ gaps of awareness and knowledge about • Five studies included the views of service providers
their culture was summed up by the following from one study regarding cultural competence in respect of faith and
participant: religion. They all reported that there was room for
improvement in service providers’ level of awareness and
– Inform workers of our culture so that they understand
knowledge, but that the numbers who had received training
our beliefs and ways, country men [non-Gypsies and
on this issue were low. However, among the service
Travellers] don’t understand about our ways.
providers who commented on this issue, there were clear
Service providers’ awareness of faith expressions of a wish to meet faith and religious needs, as
and religious needs summed up by the comments below:
The vast majority of the 36 studies that covered this issue – Everyone has spiritual needs even if they do not identify
reported that there was a lack of awareness among statutory themselves with any particular faith group.
mental health service providers regarding faith and religious
needs. One study bluntly summed up: – Inpatients may find respite and comfort in the
practice of religious traditions or in activities with a
–
Doctors and consultants did not consider the spiritual spiritual content.
and cultural needs of service users within patient care.
• One study among Black Africans and Black Caribbeans Lack of opportunity for service users to follow
included a survey of 40 mental health service providers. religious practices
Of these, 93% thought that religious and cultural training Some study reports voiced concerns over service users’ ability
would be beneficial for ward staff, although only a quarter to conform to religious practice owing to the effects of
(10) of the service providers reported that they had received medication and/or the day and time that services were offered.
cultural competency training. Of these, only three said For example:
religion had been included in this training, and just one
offered a comment on this, saying that it was used ‘all the • A study of Muslims from a variety of ethnicities
time in being sensitive to religious issues and needs’ highlighted the issue of medication and the effect of
hospital routines on religious practice:
• A study among Orthodox Jews included a survey of eight
– No-one told if the drugs were halal and we didn’t know.
service providers. Results showed that the majority did not
No-one said that I would fall asleep and sometimes I
think they were culturally competent when dealing with
miss my prayer.
members of this community:
– I was not allowed to pray night prayer. Lights go out at
– When asked if they thought the service they provide is
9pm, and prayer time was 10pm. There was no prayer
culturally sensitive to the Orthodox Jewish community,
facility or prayer mat.
25% considered that it was and 62% that it ‘partially’ was.
– When asked how much they knew about the Orthodox • Concerns were also raised by the Jewish study participants
Jewish community, 50% of service providers said they regarding the difficulties service users face on the Sabbath.
knew ‘a little’ and 25% that they knew ‘a lot’. Known in Hebrew as Shabbat, this is a holy day for rest,
reflection and prayer, with restrictions around other
– Half of the service providers said they tried to take activities. Keeping Shabbat can therefore be difficult for
into consideration Sabbath and high holy days in those in psychiatric inpatient units and attending outpatient
arranging appointments. services.
• A study of 74 South Asian and Chinese service users and • As discussed in detail in section 4.3.4 in relation to the
carers aged 50 and over asked 25 service providers whether need for gender-specific services and staff, Jewish and
all staff in their organisation were trained in religious Muslim women were particularly concerned about
awareness. Just under half replied in the affirmative. personal modesty and, as part of their religious observance,
aimed for limited contact with men, other than their
• Faith healing and spiritual healing as spiritual practices to
husbands and close relatives. They therefore considered
promote wellbeing and recovery from mental health
male staff, including nurses in hospitals, to be highly
problems were briefly discussed in a minority of studies,
inappropriate.
particularly those focusing on Muslims and Christians. An
awareness of the importance of faith healing in some study • A Seventh-day Adventist, who was a carer, also reported
participants’ lives was thought by these studies to be a that religious practices were compromised by mental
necessary element of mental health services’ cultural health services:
competence in terms of faith and religion. For example,
a study among Somali Muslims, which reported that jinn – We would always say to him [service provider], if you
are believed to be the main cause of mental illness added: organise any activities don’t do it on a Friday because
that is our holy day… but he would still take him out [to
– As for care, medical attention is not always the first to activities]… so we have to compromise our faith in
be sought… Individuals are treated with Quranic some way.
readings, administration of herbs, fumigations etc. In
some cases the ‘devil’ is driven out by exorcism… also • The issue of mental health services’ cultural competence
non religious rites are practiced to drive spirits out by surrounding food is discussed in section 4.3.3, but also
means of dances, songs, perfumes. noted here because there are specific religious connotations
regarding the therapeutic benefits of particular foods in the
Muslim faith, as one of the studies reported:
– There are many instances of the Prophet Muhammed
(SAW) recommending certain foods for their therapeutic
qualities eg honey, olives, figs, dates, ginger etc. Thus
food is central to Muslim spirituality.
Positive experiences of faith and religious competence 4.3.3 Culturally appropriate treatment and
While this section has revealed many complaints that mental interventions: food
health services did not understand faith, religious and spiritual The majority of the study reports included the provision
needs, and do not do enough to take these needs into account, of culturally appropriate food in a list of recommendations
a few positive experiences were reported: aimed at increasing services’ cultural competence. Thirteen
• In a study of 50 South Asian service users and carers, reports discussed this issue in more detail. Overall, the
more than half said that they did feel services were study participants made several links between food and
culturally/religiously sensitive, and one commented mental health:
positively on the understanding regarding religious dress. • A minority thought that the symptoms or diagnoses
• A study of Black African and Black Caribbean inpatients of mental illnesses included a loss of appetite and a lack
recommended dissemination of an example of good of interest in cooking. Some had experienced these
practice it had observed (see http://www.homerton.nhs. problems, including a few who had been diagnosed with an
uk/patient-information/your-stay-in-hospital/spiritual- eating disorder.
and-religious-care/), citing it as:
• Comments from the carers of those with mental health
–
An example of how faith can be fully incorporated in a problems showed that one of their major duties was the
person’s mental health care. They [hospital] have a provision of food (including shopping) for those who
chaplaincy team which covers a diverse range of faith, could not or would not cook for themselves.
a Sanctuary and Shabbat room for quiet prayer and
thought and regular religious services. • Several studies made the point that the lack of culturally
appropriate food added to the stress of those who were
Joined-up working between mental health services mentally ill and in hospital, isolated from their families,
and faith-based organisations friends and usual activities, including their usual diet.
Many studies stressed the importance of a joined-up approach
to moving forward in a positive way to unite religious • The studies involving current and ex-asylum seekers
perspectives with western models of mental health. Several discussed how issues surrounding food contributed to
studies suggested that there is much benefit in genuine two- their feelings of alienation in England. For example, a few
way partnerships, whereby faith-based organisations and asylum seekers from Somalia and Yemen had been
mental health services both learn more of the other’s subsistence farmers and they reported how much they
perspective. For example: missed growing their own food. Others reported that
the new culture they encountered included unfamiliar
• A study of 70 Black African and Caribbean men food, different eating habits and the lack of availability of
concluded: halal food. One of those who had been given vouchers
–
The research highlights the need for more joint work to buy food while waiting for a decision on their
between different agencies, particularly colleges and immigration status commented that they could only be
higher education providers that deliver counselling exchanged in one supermarket only, ‘and I can’t buy halal
courses. They should ensure that the courses delivered meat in [supermarket]’.
are culturally applicable, racially sound with elements
of religion, gender and history. Dissatisfaction with the lack of provision of culturally
appropriate food by statutory mental health services was not
• A participant in a study among participants from a variety related to ethnicity: members of all the ethnic groups
of ethnicities agreed: represented in this project expressed their discontent.
–
I think where service users are spiritual, it helps them
understand their problems and how they see the world.
You can’t ignore people’s spiritual needs, having a
dialogue on how mental health works with spirituality.
We need to build bridges and find solutions.
Gender-specific factors negatively affecting the mental The study report also showed that depressed and anxious
wellbeing of females mothers are ‘poorly placed to nurture the mental wellbeing of
This section discusses the factors that were identified by their children’.
the studies as affecting the mental wellbeing of some Black
and minority ethnic females: isolation, women’s role in the • A study among Black African and Kurdish women
family, the stigma of mental illness and of ‘not coping’ with reported that women with children aged five and under
their family responsibilities, powerlessness, violence, and the were more isolated than those with older children, and that
asylum-seeking process. Kurdish women experienced ‘particularly acute levels
of isolation and self-ascribed “depression” even in the
Isolation context of family life’.
The isolation of some Black and minority ethnic females was
commonly thought to have a negative effect on their mental • A study that included seven Somali women who had
wellbeing. This was reported from a variety of ethnic groups, been diagnosed with a mental illness showed that they
but especially South Asians (mainly Bangladeshis and had become housebound because of the illness. They
Pakistanis) and by Muslims. The isolation of females was reported that this isolation had compounded their mental
reported to be due to the inability to communicate effectively health problems.
in English, a strict family’s restrictions on their movements Women’s role in the family
outside the home, and especially in the case of asylum seekers, Many study participants (females and males), from a wide
poverty. Examples include: variety of ethnic groups, thought that women’s expected role
• Three studies among the Bangladeshi community reported in the family could negatively affect their mental wellbeing
that their study participants thought that girls and young and hinder the recovery of those unable to fulfil this role
women became isolated because they had ‘too many because of mental health problems. To illustrate:
restrictions’ imposed upon them by their families. • Many of the sample in a study among Pakistanis concurred
• A study among the Pakistani community reported that with one participant’s statement that:
those women who had come to England for an arranged – In marriage, girls have to make the marriage work even
marriage were isolated and prone to depression because if their partner makes life hell. Men are not blamed and
they lacked their familiar support networks. Participants usually women suffer – they [the Pakistani community]
in another study among this community thought that some stigmatise her and her family.
women feared to go out of their home because of racism
(especially since the attacks in the USA on 11 September • Another study among Pakistani women who attended a
2001) and drug dealing in their area, and that the consequent parenting course emphasised that they were expected to
isolation posed a threat to their mental wellbeing. do as their mothers-in-law dictated:
• A study that included 33 Yemeni women also reported that – If you attend a course, the mother-in-law wants to attend
their fear of crime and racial harassment meant that they also, to check what she is doing, where she is going,
were isolated and excluded from day-to-day community who she is going to meet, and wants to know what she
life, leading to them feeling depressed and withdrawn. will learn.
– Mothers-in-law fear that women may learn the rules
• Five case studies were included in a study among 37 South and regulations of England – in other words, their
Asian women (mainly Pakistani). They starkly showed rights... Mothers-in-law want to be in control of their
that the restrictions on women’s ‘personal freedoms’ meant daughter-in-laws’ lives.
that their mental wellbeing ‘is not only neglected but
actively threatened by socio-cultural circumstances’: – Girls from abroad are treated like slaves. This is a
common concern...Women from the Asian subcontinent
–
The family tells them that there is no need to go out. are suffering.
They accompany them wherever they go, to keep an eye
on the daughter-in-law, so that all she does is the • A study of 50 South Asian mental health service users and
housework, with no freedom for anything else. carers reported that most believed, as one of them put it:
– Whenever there is a breakdown of relationship between
a woman and a man, it is always the women who are
troubled [more] by the problems than men.
• A study among Orthodox Jews highlighted the importance • A study among the Orthodox Jewish community detailed
of gender roles in their culture, which demands that women how women who could not cope with their family
be a ‘super balebuste’ (super housewife). This, along with responsibilities were stigmatised, causing them to deny
the pressure of ‘Simcha’ (the command to be happy), having difficult children or mental health or marital
was reported to have a negative effect on women’s problems.
mental wellbeing.
• A study of 31 Irish women was inspired by the following:
• Data collected from Turkish, Turkish Cypriot and
– There was a general consensus amongst community
Turkish Kurdish men led the study report to comment:
groups and players that a large number of Irish women
– Women (ie mothers, wives, sisters) play an important are in need of mental health support. Irish women also
role in caring and managing their male relatives’ continually disregard community and statutory services
mental health problems. However, their carer role was for a variety of reasons that relate to their culture and
not recognised within mainstream service provision, ethnicity. The most overwhelming agreement before the
leading to deterioration of mental health of carer. research took place was that Irish women do not like to
talk about their problems and will go through great
• A study of Irish women showed how: lengths to hide any problems they have.
– Traditionally the role of the Irish woman is very much
The study showed that this premise was correct: the women
focussed around the family, it’s their motivation and
reported that the Irish culture stigmatises a woman having
they are very much seen as the nurturer.
problems with her partner and/or children. Thirty of the 31
Consequently, when Irish women feel they have failed in reported that they had a mental health problem, but only 17
this role, there is a negative effect on their mental had accessed any form of help for this:
wellbeing. In addition, if an Irish woman has a mental – They [Irish women] put other people’s feelings first and
illness and cannot fulfil her role of nurturer, her recovery is they don’t prioritise their own... they feel ashamed of
negatively affected. admitting that they don’t feel good and they see it as
a personal failure.
• Yemeni women reported that their mental wellbeing was
affected by the pressure of their caring role: – It’s a shame thing – that’s the way we were brought
up – you stand on your own two feet, don’t ask anyone
–
They don’t realise that women are the ones that get
for help.
worried easily as they have kids, a husband, a house
and themselves to care for and worry about. It’s a lot of As the study report summed up, the consequence was that
responsibility but the men always depend on women and the women were uncomfortable about discussing their
expect them to be healthy. mental health problems with anyone, including GPs, and
about admitting that they needed support:
• A study among 107 female and male Somalis reported that
many of the women had been separated from their partners – Both they themselves and many of their female friends
(including by death and imprisonment) during the civil war were very good at keeping up the pretence of coping
in Somalia. These women came to the UK to seek asylum well and being OK.
and were therefore heading single parent families, which
was reported as an uncommon phenomenon in Somalia. Powerlessness
The women in this study reported being stressed by this The negative effect of females’ relative powerlessness on their
situation, and by having to raise their children alone and in mental wellbeing was discussed mainly by South Asian study
an unfamiliar culture. participants. For example:
The stigma of mental illness and of ‘not coping’ with • A study of older South Asians reported that:
family responsibilities –
Mainly in our community, women suffer from their
Several study reports discussed how the stigma surrounding husbands, in-laws and financial problems due to
women who were ‘not coping’ with their prescribed role in dependence on husbands. These things can be the
the family negatively affected their mental wellbeing and start of mental health issues.
exacerbated existing mental health problems. This stigma
hindered their access to mental health services. To illustrate:
• Another study of older South Asians reported that • Forced marriage was the second most commonly given for
participants thought that females were more likely to have leaving the family home (after domestic violence) by 30
mental health problems after marriage, ‘with the demands South Asian women (1 Bangladeshi, 10 Indians and 19
and expectations placed on them’ by their husbands and Pakistanis) whose mental wellbeing had been affected by
in-laws. Several had experienced ill treatment and the experience. All these women, who had been resettled
interference from their mother-in-law and that this had after leaving home because of domestic violence, reported
contributed to their mental health problems. They felt that that their mental wellbeing had been affected by the shame,
living together in large extended families in England dishonour and stigma of leaving their family homes.
exacerbated the problem, as there was pressure from many Resettlement had impacted on their mental health because
family members to conform, but no support. As the study of loneliness, isolation, worry about being found by the
report noted: partner who had abused them and the practical aspects of
living independently from their families and previous
– ‘The joint family placing restrictions on the new wife
support networks:
about what to wear, going out etc leads to depression’.
This was said by an older woman who had been – I didn’t know how to be independent. Didn’t know how
restricted in the prime of her life and now felt bitter to pay bills or even catch a bus.
about what she was not able to do when young.
– I didn’t want to go out, thought people would find out
• Three studies among Bangladeshis stressed that the what had happened to me – it was shameful.
Bangladeshi culture is patriarchal and ‘the man deals with
• A study among 60 South Asian women (over half of whom
everything’. Therefore:
gave their ethnicity as Punjabi) reported that over half had
– Women in our community are more susceptible to mental personally experienced domestic violence, and 85% of the
illness... They need confidence and control. study’s sample agreed that there was a link between
domestic violence and mental health problems. However,
• A study of Orthodox Jews also concluded that the patriarchal shame, dishonour and stigma had prevented most of those
culture was detrimental to women’s mental health: who had experienced domestic violence from seeking help,
–
There have been some heart-rending accounts and as ‘it is a woman’s duty to accept everything in a marriage
uncomfortable truths coming to the surface during this and to believe that things will get better as life moves on’.
exercise, that perhaps women suffer more [mental As the report summed up:
health problems] than men do (it is a patriarchal – Most of the victims of this abuse have been brought up
society). There is a crying need for establishing women’s with traditional old-fashioned values. Therefore they
services, groups, training and information without them feel that they have to put up with this abuse and should
having to be secretive, ashamed, fearful or stigmatised. not complain or seek outside help.
• Several studies stressed that those women whose • Another study on domestic violence, also among South
movements are restricted by their families find it difficult Asian women (a total of 80, of whom 56 were Pakistani
to visit a GP and that even if they do, find it even more and 11 were Indian), reported that mental health problems
difficult to attend any service to which they are referred. were a ‘direct consequence’ of the domestic violence
experienced by the women and the fear of 33 of them that
Violence
it would recur. For example:
The negative effect of violence on women’s mental wellbeing
was most often discussed by South Asian study participants in –
My husband used to beat me up all the time, my in-laws
terms of forced marriages and domestic violence by a partner. always abused me. They treated me like a slave. I had
Five studies presented data on these issues. no permission to go anywhere. I was also not allowed to
attend phone calls. I suffered all this for two years –
• A study among 100 South Asian females reported that every single day. Before this violence, I was full of life,
90% of them thought that forced marriage (or the fear of it) confident...I lost my confidence, I was scared, mentally
led to mental health problems among women. distressed. I always had a headache... I could not do
• Some of the participants in a study of young Bangladeshis anything properly. I was always crying and began to
also believed that forced marriages led to mental health consider myself useless.
problems.
• The study above also reported other factors affecting these • Several studies among South Asians, including mental
female asylum seekers’ mental health. They had to visit a health service users, also pointed out that men were
police station to ‘check in’ and this ‘made them feel like expected to take responsibility for being the main
criminals’, and were unable to work until a positive breadwinner in the family. The study participants reported
decision had been made on their asylum application. that if men became unemployed, they became depressed
Consequently, the study report stressed: and anxious and existing mental health problems worsened:
–
Participants, including existing [mental health] service –
I go out and I don’t want my wife to see me and I am
users, were united in their desire to contribute and weak, I feel shame. (Pakistani male)
participate in public life and felt being denied such – A focus group of Bangladeshi men reported that they
opportunities negatively affected their mental health. ‘felt distressed about not being able to work and about
financial difficulties’.
• Participants in a study among 60 male asylum seekers
(two-thirds of whom were Black African) believed,
however, that because women had childcare responsibilities,
they were less inclined than men to be affected by the
trauma of migration and asylum seeking.
• The findings from a study of 61 Black African, Black • A study that included 37 South Asian male mental health
British and Black Caribbean males showed how service users reported that it was culturally expected that
unemployment meant that their ‘concept of “maleness” they would be cared for by their families when they became
was challenged’. elderly. However, most of these men were not elderly: less
than a quarter of them were aged over 49. They were
• A study that included migrant workers from many distressed that they were now dependent on the families
different countries stressed that, although they were that they used to head.
employed, their qualifications were not recognised in
England and so they worked in jobs that ‘demeaned their • Males comprised around half the participants in a study
status and sense of self-worth’. among 107 Somali people, including mental health service
users. These men reported how, in Somalia, they had been
The traditional male role the breadwinners and leaders of their families, but that they
As discussed above, some Black and minority ethnic males’ had lost these roles in England because they were
traditional role within their culture were challenged by unemployed. This loss of status led to stress and a loss of
unemployment. Several studies identified other aspects of self-esteem, and they felt powerless.
this role that affected men’s mental wellbeing:
Isolation
• A study among Orthodox Jews highlighted the importance Several studies discussed how isolation negatively affected
of gender roles in that culture. Orthodox Jewish men are men’s mental wellbeing. For example:
expected to be a ‘Talmid Chacham’ (scholar) and this,
along with the pressure of ‘Simcha’ (the command to be • A study among older Irish men who had drug and/or
happy), was reported to have a negative effect on their alcohol problems and/or mental health problems, some of
mental wellbeing. whom lived in hostels, reported that they were isolated
from their families in Ireland and lacked a social life.
• A study among 100 Turkish Cypriot and Turkish As one of them reported:
Kurdish men reported that the older men who were not
born in England continued with their traditional way of life –
I get out, walk around, see people and keep myself
in England. This includes their strong patriarchal role in busy. If I didn’t, I’d be like the other guys in the hostel
the family and social activities such as visiting Turkish who just sit and get more depressed.
coffee houses and community centres, watching Turkish
• The sample of a study of 132 asylum seekers comprised
television, and supporting Turkish football teams. They
32 females and 100 males. 76% of the males did not have
expect their wives and children to adopt these traditions
any family in England, whereas 67% of the females did.
and ‘this means security and meaning to their lives’.
Consequently, more males than females lacked family
However, the study reported that men’s mental wellbeing
support and this affected their mental wellbeing. As one of
had been affected by the erosion of this tradition:
the men said:
–
Many participants passionately talked about their
–
I am not feeling well... I am alone in this country, nobody
problems with their wives and children which they
help me... I am helpless and fed up completely.
think has weakened their traditional patriarchal role
as breadwinner and sole guardian of their family.
Reluctance to express emotions • A study of 100 Turkish Cypriot and Turkish Kurdish
In total, almost two-thirds of this project’s total sample was men revealed that these men are willing to talk about their
female. This partly reflected each study’s target sample, but, mental health problems to some people, but not others.
according to several study reports, it may also have been Seventy per cent said they were able to share their emotions
because women were more willing to talk about mental health and feelings, but further questioning revealed that they
problems (their own and others’) than men. For example: were willing to discuss them only with friends and partners,
rather than professionals. This was confirmed by service
• A study of 84 South Asian females and males aged 50-88, providers, who said that these men presented mental health
some with mental health problems, included 60 men. problems to them as physical problems such as headache,
The study found that men were less willing than women backache and fatigue. The study report concluded that
to answer some questions about their mental health: the men’s culture dictated that ‘men don’t cry’ and that
– Consistently, women were more willing to acknowledge they therefore denied their mental health problems to
their problem(s) and prepared to talk about their health professionals.
conditions. It is apparent from the responses that women
• That said, several studies that conducted interviews with
had a wider vocabulary with which to articulate their
males or held male-only focus groups reported the positive
feelings. The reasons for this are that in traditional
feedback they received from the participants who were
South Asian communities, men are encouraged to see
mental health service users. These men had enjoyed
themselves as the providers and protectors of their
the experience and found it therapeutic, as it had given
families. They are not encouraged to discuss their
them the opportunity to talk to other men in a similar
family business in public. They therefore feel a need to
situation. For example:
project themselves as calm and strong, not showing any
signs of weakness, either physically or in their character. – The report of a study among 40 South Asian men, 37 of
As a result they are reticent to acknowledge personal or whom were mental health service users, had no problems
emotional difficulties. in getting the men to talk to the community researchers:
• A study of 132 female and male asylum seekers from –
Many found the process of completing the
a variety of ethnic groups also reported that men did not questionnaire, talking about their experiences and
want to show weakness by talking about their mental health writing their personal stories very therapeutic and an
problems. While the female study participants coped with opportunity to re-examine their current circumstances
negative emotions by increasing their socialising and with a view to making positive changes.
talking to counsellors, some of the males’ solution was to
use drugs and alcohol. The study argued that this meant – One study included separate focus groups for male
that men were more likely to be admitted to hospital with Bangladeshi, Black Caribbean and Somali mental
mental health problem or to be sectioned under the Mental health service users. The study reported that all these
Health Act 1983. ethnic groups recommended having a venue where
they could meet with other men, so that they could
• A study among 60 male asylum seekers (two-thirds of share similar issues and experiences and support
whom were Black African) reported that the men’s each other.
wellbeing was affected by their reluctance to talk openly
about their feelings concerning the often traumatic
circumstances that led to them leaving their home
countries. Those men who were alone in England were
particularly affected, as they did not have emotional
support from their wives and families.
Gender-specific services • Several study reports pointed out that mental health
Many of the study participants identified mixed gender services services need to offer childcare to encourage mothers of
as a barrier to mental health service access, especially, but not young children to attend, ‘because mothers can’t come out
exclusively, facing women. These participants therefore of the house without their child, so we miss the services’
wanted gender-specific mental health services, and some and ‘it would be hard for us to drag them [children] with
wanted these to be provided in female-only or male-only us’. For example:
spaces. It was argued that by providing these, services would A study among Orthodox Jews reported that
–
demonstrate their cultural competence. participants wanted crèches to be provided at mental
• Some of the studies that addressed the issue of female-only health services, as many Orthodox Jewish women
services did so in terms of religious laws. Muslim and have large families.
Orthodox Jewish study participants stressed that these – The sample of a study of Pakistani women agreed
laws mean that separate services are needed for females that crèches were needed.
and males. For example:
– 47 of 70 study participants from a range of ethnicities
– For women, being left alone with men can aggravate saw the lack of provision for childcare as a barrier
[mental] distress further because keeping their personal to mental health service access by mothers of
space private and away from men is an essential aspect small children.
of their devotional life.
– A study among Yemeni people reported that some of
– At public functions a ‘mechitza’ (partition) separates their participants thought that home visits by mental
the genders and it is considered immodest to address health professionals should be provided for women
a member of the opposite gender (except for family) with small children.
by their first name.
• The studies that reported the need for male-only services
• Women’s groups were suggested by the participants in included a wide variety of ethnicities. Two of these studies
several studies, mainly those among South Asians, also reported that some South Asian males in their samples
including elderly people. Many of their comments on believed such services were non-existent, while there
the value of women’s groups show that without them, were plenty for South Asian women:
some South Asian women with mental health problems
would be housebound and isolated. For example: –
They forget about Asian men – Asian women get
everything.
–
Makes me feel happy, gives me a chance to go out
and meet other women. –
[Asian men] are not recognised as an individual group
such as Asian women are. For example [a local mental
– I feel good meeting with other Asian women with mental health resource centre] has an Asian women’s worker.
health problems. This is the only group I access and Asian men are not catered for.
leave the house for.
• A variety of male-only services for those with mental
– Met other women who are like me, can talk and discuss health problems were suggested by the study participants
my illness with them in my language. Makes me feel including:
good that I am not the only one out there with these
kind of problems. – Supported housing for South Asian men with mental
health illnesses.
– I used to talk to the other ladies in the group which
helped and I felt better. – Mental health services specifically for Irish men,
because ‘A lot of Irish men get no help’.
• Some of the female study participants, across a range of
ethnicities, felt that there were no mental health services Services (including information) aimed at Black
–
meeting the needs of their ethnic group. For example: Caribbean males.
4.3.5 Culturally appropriate treatment and Additional evidence appears throughout this report, where
interventions: ethnicity of mental health service staff there are data showing that voluntary and community
Sixty-seven of the 79 study reports presented data on the organisations were especially valued for providing services
ethnicity of mental health service staff. Discussions on study (including mental health support services) in religiously and
participants’ perceptions and experiences surrounding this culturally supportive environments. The major reason for
issue clearly showed that they did not see it in isolation this was reported to be because they were staffed by people
from the other elements of cultural competence discussed who were the same ethnicity and spoke the same language(s)
throughout section 4.3 (language, faith and religion, food, as those who visited them. The following comment is typical
gender and racism). of many, across all the ethnic groups that participated in
the project:
This section examines the arguments presented for and against
matching the ethnicity of staff and patients, and also data –
They [community organisation that provides mental
that show that some study participants were indifferent or health support services] have Asian staff, understand
undecided. Participants’ suggestions for addressing this are mental health and our culture. I don’t have to explain
then summarised. my cultural background, I feel comfortable and welcome
and they provide a safe environment.
Arguments for matching the ethnicity of staff
The following data are only a small selection of the data
and patients in support of matching the ethnicity of staff and clients:
Throughout this report, the data from the studies have shown
that the major expressed need was for mental health services • Black African, Black Caribbean and Black British
and staff that are empathetic and sensitive to cultural and study participants. The following comments were
religious needs. Many of the participants, regardless of typically made by the study participants from these
ethnicity, gender and age, stressed that this could be achieved ethnic groups:
if staff were the same ethnicity as their patients, although – Black counsellor would understand where I’m coming
there were some who did not agree, as discussed shortly. from. They would have an understanding about
Matching the ethnicity of staff and patients was especially oppression and racism. They would know what it’s like
demanded by service users, but also was seen as essential being black and having problems. (Black Caribbean)
by other study participants.
– People on the frontline are not Africans, we need more
To support the argument for matching the ethnicity of staff and African workers in mental health. Somebody who can
patients, several study reports pointed out how the use of understand the culture and background is needed.
community researchers as the same ethnic group as their target
samples had encouraged study participants to ‘open up’. As a – [To treat me] they should find another black person that
Black Caribbean participant said, when discussing his need understands a black person [to treat me], that’s the only
for Black Caribbean mental health service staff: way, you know, because I can relate better to them than
I can relate to a white man. (Black Caribbean)
– I mean, I am talking to you [community researcher]
now... I feel like I am able to say what I need to say to – To avoid innocent Africans being sectioned according
you... if I slip into the vernacular, it’s not a problem... to the Mental Health Act, which can be due to
I am just able to relate to you because you are another misunderstandings, African doctors should be part of
black person, you are Caribbean like myself... any panel that sections Africans since they better
so therefore that makes conversing with you so much understand their culture.
easier – being able to tell you what I need to tell you A study of Black Caribbean male ex-service users
so much easier. reported that:
–
Emanating from the findings is the need for more visible
black staff in the delivery of services as this, in black
men’s perception, allows them to be more open in their
discussions and less alienated.
• Chinese study participants. Relevant comments from • Turkish Cypriot, Kurdish and Turkish study
studies among Chinese people included: participants. A study of 100 men from these communities
reported that:
– It would be so helpful if we could have more Chinese
doctors and health professionals. –
Historically, we have always had to depend on
external agencies for interpreting services but these
– A doctor from my ethnic background can understand
were, invariably, unsatisfactory. We need to proactively
me deeper and more.
recruit Turkish/Kurdish professionals in different
One Chinese study participant qualified this by adding: [mental health service] disciplines.
–
I mean real Chinese – you know, sometimes you bump • Y
emini study participants. A study among 77 Yemini
into a Chinese doctor or a nurse, you thought you’re people reported a preference for Yemini mental health
being lucky to have found someone who speaks your practitioners:
language, but surprisingly he or she doesn’t speak
–
Employ Yeminis in Mental Health Services – we tend to
Chinese at all.
stick to old traditions, we need someone who tends to
• Jewish study participants. A study of 64 Orthodox Jews understand our culture and religion.
reported that their results showed: – Any Yemini who suffers from mental health problem
–
A distrust of non-Jewish professionals e.g. doctors, will feel free to talk about it to someone who comes
psychiatrists and nurses, who were seen to be from the same cultural and ethnic background.
unsympathetic or ignorant of the community’s cultural
and religious needs. Comments such as ‘most non- Arguments against matching the ethnicity of
Jewish practitioners have no understanding of our staff and patients
community and can therefore make serious errors of All the studies that reported on the ethnicity of mental health
judgement’ were commonly made. service staff presented comments in favour of matching
the ethnicity of staff with their patients. However, some –
• South Asian study participants. The following comments especially those among Black Caribbeans, Jews and South
from South Asians were typical: Asians – also found some resistance to this, because of fears
–
[White] staff do not understand my culture issues. I was that confidentiality would be breached and that their mental
stereotyped, assumptions were made. health problems would be seen and treated only from a western
perspective. For example:
–
An Asian support worker would have been more
appropriate as I would not need to explain my issues • A study that discussed talking therapies with a focus group
as I was already distraught. of Black Caribbeans reported that some of their
participants did not want a Black Caribbean counsellor
– When advice is given to someone that is Asian, the because they feared that confidentiality would be breached:
person giving the advice needs to be Asian, only then
will the advice be useful. One size does not fit all feet - –
If they’re black, they may know your family and friends
more Asian workers are required. and tell them your business and it’s supposed to be
confidential and private.
– They don’t understand Asian men. Asian culture is too
complicated for them. • One study among Jewish people reported that some of
their sample would be worried about confidentiality if they
– Have Asian workers so that I don’t feel scared and feel
were treated by Jewish mental health practitioners and that
like an alien.
they preferred culturally competent non-Jewish staff. In
In one study, 62% of 132 Bangladeshis said they another study, among Orthodox Jews, as discussed in
thought more Black and minority ethnic staff would section 4.1.2, some participants agreed, and also thought
improve services, especially trained professionals from the that Jewish staff may ‘judge’ them negatively:
Bangladeshi community. –
Positive point of non-Jewish counsellor is that you
might not be judged and things will not go back to
the community.
• A study that included South Asian service users and carers Indifference
reported some dissatisfaction with South Asian doctors Some studies reported that some of their participants were
and counsellors: indifferent about whether staff and patients should be of the
–
Some participants noticed that the cultural affinity same ethnicity. They were more concerned about the
between them and their doctor was a problem. Some practitioners’ skills. For example:
participants observed Asian doctors made assumptions • When asked if they would prefer to talk to a GP ‘from your
and generalisations about them... and often disregarded own ethnic background’ if they had mental health problem,
their personal views and opinions. only a minority (14%) of a sample of 100 Black Caribbean,
Comments from the South Asian study participants in other Arabic-speaking, Chinese, Polish and Portuguese people
studies confirmed this finding and included: said they would, although 48% said they did not have
a preference regarding the ethnicity of their GP. As two of
– Assumptions were made because I am Asian I would them explained:
behave in a certain way and I was not listened to by
doctors who seemed to talk to my husband more than –
My ethnic background is not important. I’ll go to
listen to me, especially Asian doctors. somebody who is a good professional.
– In my experience Asian doctors seemed to ignore their – As long as doctor can provide me with a service and
own ‘Asianess’ and be more adamant and not listen to confidentiality it doesn’t matter... what his background
Asian patients. They should have been of more help is... a doctor is a doctor.
to me – I expected they would be but I was listened to • Some of the participants in several other studies, among a
only by white doctors. variety of ethnicities, agreed:
–
This counsellor was an Asian bloke and he said – The hospital, with the staff, usually treat as a patient...
something like ‘us people, we all go through things like whatever the background or religion of the patient,
this’... made you feel like you should just go away and is always the same to the doctor.
deal with things. I remember feeling after that remark,
if it had been a white person I would’ve got more help. – It doesn’t matter which religion or background, they
I don’t feel I’m going to get the same sort of support [staff] are coming from as long as that person helps
with an Asian person. him [patient] understand that he is ill.
– Ethnicity isn’t important – it’s the amount of knowledge
That South Asian mental health professionals might break
they have and how much support they are going to
confidentiality was also an issue for a few study participants
provide... that is most important.
(although no incidence of this occurring was reported).
Study participants’ suggestions for resolution • Two study reports, one among Black African, Black
The study participants’ suggestions to resolve the issues British and Black Caribbean service users and carers,
surrounding the ethnicity of mental health service staff that and another among South Asians acknowledged pointed
are discussed above were, unsurprisingly, that there should out that currently, matching the ethnicity of staff and
be more Black and minority ethnic people delivering mental patient is difficult:
health services (including information services) and training – Like all people, Black people are anxious that their
staff in cultural competence. It should be reiterated here that, loved ones will be well cared for by trained and
when discussing this, study participants’ emphasis, whatever supervised carers who will respect their family values
their ethnicity, was on increasing these services’ cultural and and preferences. White carers can almost always be
religious competence, that staff should be ‘kind’ and that the offered an ethnically matched placement. But a shortage
service environment should make users feel ‘comfortable’ and of black carers and sitters means this is not the case
‘confident’. It should also be noted that those who argued or black people. This can be off-putting for those who
against matching the ethnicity of staff and patients, or were want to feel their language, culture and religion will
indifferent or indecisive, nevertheless expressed concern about be respected.
services’ lack of cultural competence.
– The lack of cultural awareness on the part of non-Asian
• Despite the call for more Black and minority ethnic mental workers is a cause of concern as it will not always be
health service staff, it was recognised that having Black possible to place mental health service users with
and minority ethnic staff does not ensure that a service is workers who come from the same cultural background.
culturally competent. As one Black Caribbean study Cultural competence training for all workers needs
participant summed up, ‘If you’re Black, you don’t to be given priority.
necessarily come from where all Black people come from’.
Other comments on this issue included: • Participants’ most common suggestion to address the
issues surrounding the ethnicity of staff was for proactive
–
Class differences or the need to survive in a white recruitment and support to increase the numbers of their
dominated profession may make them [Black Caribbean ethnic group among mental health service staff.
staff] feel and behave differently.
– Sometimes Asian doctors don’t have cultural awareness. Reflecting the need for kindness and understanding,
They may have had a more mainstream [UK] upbringing many also stressed that Black and minority ethnic social
– they may not have cultural knowledge. workers, outreach workers, counsellors, aftercare
workers, befrienders and carer support workers were
– Any staff trained in Eurocentric traditions, including particularly needed.
Asians, African Caribbeans or any other BME origin,
would not necessarily have the skills or the knowledge Other common suggestions were that Black and minority
for ‘transcultural orientated’ mental health work, unless ethnic people and community organisations played a role
they are retrained. in designing and/or delivering cultural competence training
for staff, and provided information to members of their
Therefore, as a study participant summed up: communities about mental health and mental health
– Getting more black people is not the solution if they services, in order to address the stigma of mental illness
continue to run the white systems with white norms and and encourage help-seeking.
white mind set. The community organisations’ recommendations to
increase mental health services’ cultural competence in
terms of the ethnicity of their staff can be found in section
6.3.5.
• Of the different ethnics groups that participated in this – If you are Black they treat you differently to white [in]
project, Black Africans and Black Caribbeans were patients. If you want to talk about things that are
particularly likely to discuss racism in mental health worrying you they will say I will come back and talk to
services. As shown in section 4.8, the annual Count me in you about it but they never do, I observe that they don’t
censuses of all psychiatric inpatients in England and Wales do that when a white patient wants to talk.
show that males and all the Black and mixed White and
Black ethnic groups are overrepresented among inpatients • A smaller proportion of South Asian study participants
and those sectioned under the Mental Health Act. Service than Black Africans and Black Caribbeans thought that
providers who participated in several of the studies were racism explained their negative experiences of mental
aware of this and expressed concern about the reasons for health services, despite reporting that their cultural needs
it, with some attributing it to services’ lack of cultural were unmet. One study thought that this was because South
competence, although they did not label this as racism. Asians were ‘too embarrassed’ to report and complain to
However, the 2008 report of a study among 22 Black the community researchers about racism. For example:
African and Black Caribbean men, all of whom had
Of 29 South Asians who had accessed mental health
extensive experience of mental health services, believed services:
racism had a big role to play in the explanation for
the overrepresentation: – Only 2 [male] respondents said they had experienced
discrimination when accessing services and both of
–
Many respondents clearly feel that not only are they these instances were with their GP.
battling against the stigma and discrimination
associated with mental illness, but [also that] the A study that included 40 South Asian men with mental
reasons for being labelled as such were down to the health problems, 38 of whom were Indian and 37 of whom
racism and ignorance of mental health professionals who were mental health service users. Of the service users,
about African and African Caribbean culture. This 22 did not think that they were treated differently by these
negative portrayal of Black men by the media and services because they were South Asian. Of the 10 who
the fear derived from perceptions about dangerousness did, however, most cited racial discrimination:
and violence weighs heavily on the minds of all parties. – I think White people get everything – best food, seen [by
This viewpoint was echoed by other Black African and mental health service staff] longer and treated better.
Black Caribbean men across the studies. For example: –
They discriminate – treat differently on account of
–
Actually, I would be very worried about going to get skin colour.
help with hearing voices. Because of chances of being A study of 50 South Asian mental health service users and
locked up and being stereotyped as a black man are as carers concluded that:
high as you get. And actually I think I wouldn’t tell
anyone and keep it to myself, I wouldn’t trust anyone. –
Notwithstanding the efforts of many public sector
institutions who have given serious consideration to
– As a Black person with a mental health problem, you’re addressing racial discrimination, sadly the historical
just walking into a field of stereotypes. It’s about being failure of welfare services generally to address the
big, Black and dangerous. It’s the known one – it’s the needs of BME communities still lingers on.
phrase that people use.
– They are very quick to section black people compared • A minority of participants in other studies, across ethnicities
to white people. and including White minority ethnic groups, reported that
they were not (or did not expect to be) treated fairly by
– When they hear about black people with mental health mental health services because of their ethnicity or cultural
[problems], all they believe is that we are going to kill background.
somebody with a gun or knife. Then they say ‘there’s
another black person with mental health, let’s lock him All the community organisations’ recommendations
up’. All they do is write us off because we have mental in section 6 address aspects of racism in mental
health and we’re black. health services.
– The NHS has got worse. They take advantage of people,
especially black people, always drugging you up and
putting us in hospital for a very long time.
Commentaries How different might I have felt if, instead of being a white man
walking in to a community centre belonging to a Black and
In this section, Jez Buffin and Dr Jonathan Bashford, ISCRI’s minority ethnic community as an honoured guest, I had been a
Associate Heads, present their commentaries on cultural Black man walking in to a mental health service as a person in
competence. Jez Buffin, who was the lead on the NIMHE need. A mental health service where my reliance on an
Community Engagement Project discussed in this report, interpreter really did matter; a mental health service where I
shares his personal experiences of the project. Jonathan could not understand what was being said to me and could not
Bashford presents a valuable framework for cultural be sure that what I was saying was fully understood by the
competence, showing how the competence of individuals and person who was asking me the questions; a mental health
organisations are interdependent. service where many of the words that they used could not be
interpreted for me because I do not have a similar word in my
Community engagement: a very personal journey
own language. A mental health service where I am the only
Jez Buffin, Associate Head of School, ISCRI, UCLan
Black person; where I might be treated unfairly, either by staff
Lead on ISCRI Community Engagement Programme
or by other service users, because of the colour of my skin;
For me, this report represents the culmination of nearly 10 a service where, if I don’t like the food, I will simply have
years of work. Although this particular community engagement to endure it.
project took place over the period 2005-08, my involvement
with community engagement began much earlier when I began The term cultural competence is one that gets bandied about
to work with the University of Central Lancashire in 2000. frequently. It is a nice safe term that we can all sign up to. We
can all agree that services should be culturally competent. But
During this period I have been privileged to have been allowed do any of us really know what we mean by the term? How
to peer through so many different windows in to the lives of so many of us use the term as smoke screen to hide behind to
many different people. indicate the fact that we want to do the right thing while
keeping hidden the fact that we don’t actually know what the
I have visited many of the groups who have taken part in this
right thing is?
and other community engagement projects. I have always been
welcomed and always treated with respect. Despite this, I The 79 study reports that have been summarised in order to
have, on many occasions, found myself way beyond my make up this report are not an easy read. Some of them are
comfort zone. Should I extend a hand to this particular woman hard to read because of the subjects that they deal with. Others
who is presented before me, or will she find offence? How do are hard to read because the authors are grappling with a
I eat this strange food that has been prepared for me by way of language that is not their own. And for many of the people who
hospitality without a knife and fork? How can I be sure that the took part in this programme, this is the first time that they have
person who is interpreting for me is actually translating the ever attempted anything like this. Despite the difficulties, the
words of the person that I am speaking to correctly? What are reports have been worth struggling with because they offer an
those two people at the back of the room who are talking in alternative and authentic voice – that of the ‘hard to reach’ and
another language saying? Are they talking about me? How seldom heard. Concepts such as fear and cultural competence
strange it feels to be the only white person as I walk in to this are unpicked. What is more, the voices of so many different
community centre: everyone is looking at me. communities are juxtaposed in such a way that the subtleties
and nuances of different communities can often be seen and
And yet at no point did I ever have anything to fear. As the
understood. But this begs an important question: whose voices
manager of a national project visiting a community centre I
do we listen to? Whose knowledge and experience do we
was always given the red carpet treatment. I was always treated
value? This goes right to the heart of the community
like a VIP.
engagement programme whose raison d’être is to capacity
I never feared that I might be racially abused or beaten up. build and empower communities to have a greater say in the
services that are designed and delivered on their behalf.
If my words were not translated 100% accurately, it would not Listening to communities is not easy however. It requires time,
really matter. My conversation was not a matter of life or death patience, understanding and a willingness to set aside
or of liberty or freedom. And anyway, the centres that I visited pre-defined ideas about what is important and how
always had lots of people who could speak my language so I information should be presented.
could communicate with someone.
Set aside your judgements and persevere.
If I did not like the food, I enjoyed looking on the hospitality
as a new experience and an opportunity to try something
new. I would not have to eat the same meal again tomorrow.
It was exciting.
4.4 The journey towards recovery • A study of 50 Black Caribbean and Mixed Black
Caribbean and White young people, including a
One of the DRE service characteristics for 2010 was ‘more minority of service users, also emphasised the need for
BME service users reaching self-reported rates of recovery’. family support to aid recovery. When asked what was
This section details the issues raised by the studies concerning most influential in helping people with mental health
recovery: how it is defined and factors facilitating and problems to get better, family support was the most
hindering recovery. These issues were explored, in varying common response.
degrees, by eight studies.
• In a study that explored the needs of Bangladeshi young
As reiterated throughout this report, this section cannot be people, the importance of support from family and friends
considered in isolation from those sections on the project’s was again highlighted:
findings in relation to other DRE service characteristics. For
example, mental health service users who consider that they – The boys and girls saw recovery as heavily dependent
have recovered from a mental illness are highly likely to be on the support and acceptance of others.
more satisfied with services (section 4.5) and to have rated the
‘Keeping busy’
treatment they received as effective (section 4.2).
The participants in a study of 22 Black African and Black
Caribbean men thought that being engaged in meaningful
4.4.1 Defining recovery activity and ‘keeping busy’ were key factors in their recovery:
A study of 22 Black African and Black Caribbean men, all
of whom had extensive experience of mental health services, –
The most important steps to take to recover? Doing
defined recovery as ‘being able to move forward, have a things, keeping busy with things that I enjoy to do.
positive outlook on the future and live independently’.
However, the study report commented that there is some Almost half the sample highlighted that sport and exercise
ambiguity about the term ‘recovery’ in relation to mental were valuable for maintaining their physical health and that
health, noting that there are different perspectives between good physical health aided recovery from a mental illness.
what service providers and service users may term recovery, In addition, as the study report summed up, employment
and further differences among services users in apparently or training were also important:
similar circumstances. The report also outlined some of the –
The idea of being ‘normal’ by having a job or attaining
recovery models and concepts and concludes that: further qualifications to enter the world of work was
– Recovery can be a relative concept and not a universally seen as a stabilising force for many service users.
agreed term. Positive attitude
For example, when 50 South Asian service users and carers One of the studies that discussed recovery concluded that a
were asked ‘How can you can tell if someone has recovered positive sense of self and self-esteem facilitated recovery.
from their mental illness?’, almost two-thirds could not say. – As important as support from others is support from
Those who did attempt an answer focused on physical signs within and being able to help oneself.
and behaviour:
For example, one study participant stressed the importance of
– Look normal, go about daily life and handle family balancing their mental health condition with other aspects
affairs. of their life:
– Talking normal, from face they look changed. – Let it be a part of what happens and a part of my life
rather than my whole life.
4.4.2 Factors facilitating recovery
Factors that facilitate recovery were explored by several Faith and religion
studies and were identified as support from family and Some of the study participants who discussed recovery
friends; ‘keeping busy’; a positive attitude; faith and religion; considered faith or religion to have had a very positive impact
and medication. on their pathway to recovery (see section 4.3.2 for a detailed
exploration of the studies’ findings on faith and religion).
Support from family and friends
Several studies reported support from family and friends to Medication
be a crucial element of recovery from a mental illness. Approximately one quarter of the participants in a study of 22
For example: Black African and Black Caribbean men reported that
medication had helped to decrease the negative symptoms of
• Over a third of respondents in a study of 22 Black African their mental health conditions, and thus viewed it as a
and Black Caribbean men thought that support from their facilitating factor in recovery. That said, others in the same
family and friends is the most important factor for recovery. study and in others saw medication as unhelpful, as discussed
in detail in sections 4.2.1 and 4.5.2.
As detailed in section 3.5, 935 mental health service users and • However, where a GP had prescribed medication only,
344 carers were involved in this project. Fifty-four of the 79 there were many reports of dissatisfaction. For example,
study reports discussed various aspects of their satisfaction a study of 80 South Asian women reported:
with services, although only a minority were explicitly asked
– My doctor’s behaviour was not good… only medicine is
how satisfied they were.
not enough for treatment.
It is not possible to draw overall conclusions on levels of – I used to cry all the time. I was prescribed sleeping
satisfaction across the whole project, nor within and between tablets [by a GP]. After that I felt as if my brain was
different ethnic groups. The range of participating community sleeping all the time. I was not really satisfied because I
organisations, the focus of their studies and their target samples did not feel that the medicine was working. I was still
were extremely diverse (section 3.3.1). Further, each community worried and depressed… I was always stressed.
organisation devised their own data collection methods, which
ranged from statistical scales to measure satisfaction to individual • A study of 100 people focussing on issues relating to
case studies (section 3.3.8). It is therefore unsurprising that, Kurdish, Turkish and Turkish Kurdish young people
overall, study participants reported a broad range of experiences also reported varying levels of satisfaction with GPs.
and subsequent levels of satisfaction with mental health services. Some were highly satisfied:
There were many accounts and statistical data to show that these
–
My GP is very understanding and supportive of me. He
services had made a positive impact and, equally, some powerful
goes out of his way to help me overcome my mental
stories of problematic experiences. To illustrate:
health problems. He keeps referring me everywhere,
– A study of 55 Black Caribbeans aged 55 and over hoping that I would benefit.
found that three-quarters had experienced mental health
problems, and that almost all had sought some kind of Others were highly dissatisfied:
help for these, including from GPs, counsellors and/or –
I couldn’t sleep and I was feeling tearful all the time.
other mental health specialists. Of these, two-thirds I went to see my GP, but I don’t think he took me
reported that they were satisfied with the help they got. seriously. He told me to talk to friends, keep myself busy
An interviewee from a study that included Black
– and I should be alright. I went home but within less than
African and Black Caribbean ex-inpatients reported 6 months I had a breakdown and had to go into hospital.
that ‘Nurses and doctors are too busy to talk to me. • Many of the asylum seekers were dissatisfied with their
I wanted to share my feelings with them but I could not. GP and there were instances where this had led to
I felt so lonely. I could have talked to other patients, but disengagement with mental health services. The problems
I didn’t think that was right. I sometimes thought they were partly due to lack of clarity among staff in GP
[staff] were avoiding me because I was big and black or surgeries about the rights of asylum seekers to treatment,
are they really busy?’ but also to GPs’ lack of sensitivity regarding their situation.
The following, from a study of 60 asylum seeking men in
4.5.1 GPs Plymouth, describes one such incident:
A visit to the GP was the route into mental health services for
many of the service users who participated in this project. – My GP gave me a diagnosis of ‘Asylum Seeker’ on a
Some had used only the primary care services provided sick certificate. Being an asylum seeker is not an illness.
by GPs, while others had been referred by their GP to I felt very depressed and angry.
secondary care services.
• Some studies – particularly (but not exclusively) those
• Between and among the studies, levels of satisfaction with involving Irish people (including Travellers), especially
GPs varied greatly. Greater satisfaction was reported where those who were also dependent on alcohol – reported
a GP had referred the patient to secondary care services: dissatisfaction with GPs’ perceived reluctance to refer
some patients to secondary mental health services.
– My doctor referred me to a counsellor. He suggested A typical comment was:
that I could leave home [because this female study
participant was experiencing domestic violence] and –
My doctor only talks to me about my alcohol problem,
also gave me addresses of services I could contact. My he never wants to deal with the depression.
GP has been very attentive, caring and supportive.
As one study report on Irish people summed up:
– I was very ill with depression. I did not want to talk to
– Some responses suggested doctors and GPs were not
anyone. I saw my doctor [GP] about it. She was very
referring them [study participants] to see psychiatrists
good, very understanding. She referred me to see a
because of alcohol dependency. Respondents felt that
psychiatrist and counsellor… the psychiatrist was very
from their experience that GPs did not acknowledge
good, very helpful… I was satisfied from the decision
their signs of depression or milder forms of mental
because it helped me to get better.
health problems.
A study of older Irish men included interviews with GPs and • Some of the study reports focusing on asylum seekers
gained their perspective on this issue. One GP acknowledged and refugees also reported dissatisfaction with medication
the complex needs of this group of patients and the difficulty as a standalone treatment. These reports provide poignant
in making a diagnosis of mental illness: illustrations of the trauma leading to migration and
the stress and anxiety experienced by those waiting for a
– The Irish patients that I see suffer from depression,
decision on their immigration status. These reports
arthritis and heart disease. They suffer from an array of
emphasised that as long as the challenging circumstances
problems causing serious distress... it is sometimes very
of asylum seekers remain unchanged, medication is an
difficult to work out if there is an underlying mental
unsatisfactory response. As two of the study participants
health problem which caused the patient to turn to
commented:
alcohol. There is definitely a link however.
–
The GP just gives me prescriptions that do not help –
4.5.2 Medication they only make me sleep and feel nervous. You become
Medication was also very commonly referred to when addicted to it and you can’t take care of yourself or
services users discussed their satisfaction with their treatment. your child. I stopped taking the medication or going to
As discussed in section 4.1.1, some service users’ fear of my GP... I just say I’m fine, even though I am not. I can’t
mental health services centred around what they saw as keep taking the pills, they will destroy my life.
services’ tendency to over-medicate, and section 4.2.1 – I had a health check for my little son and the health
presents data on services’ over-reliance on medication to visitor asked me some questions about myself, then I
treat those with mental health problems. It was clear from the couldn’t help it, I started crying, crying... I was referred
study reports that the issue of what medication is prescribed, to the mental health people. Were they helpful? I don’t
and under what circumstances, greatly influenced levels of think so because your fears are still there. And they gave
satisfaction with mental health services. me medication – tablets. I always felt drowsy, sleepy,
• 65 service users from a variety of ethnic backgrounds, and I couldn’t look after my sons. I didn’t know what
were asked about their level of satisfaction with their was going on around me, I couldn’t cope, I couldn’t
medication. Equal proportions expressed satisfaction and cook or pick up my son from school. The medication
dissatisfaction, although almost two-thirds said their made things worse. I wanted help with my circumstances.
medications had negative side-effects.
4.5.3 Services’ religious sensitivity
• Those who were compelled to take medication while under Several study reports on the Orthodox Jewish and South
compulsory detention in hospital under the Mental Health Asian communities focussed on levels of satisfaction with
Act 1983 expressed extremely high levels of dissatisfaction mental health services in terms of services’ sensitivity to their
with their medication. faith or religion (see section 4.3.2 for a detailed discussion of
this issue). For example:
• Several study reports pointed out that, as one of them put it,
‘the use of medication as the first response to distress is a I n a study of 50 South Asian service users and carers, 39 had
consistent theme’, negatively affecting patients’ satisfaction accessed services at their GPs and almost two-thirds of them
with this aspect of their treatment. felt their GP services were culturally and religiously sensitive.
However, other studies, especially among Muslim samples,
• What were seen as the dehumanising and energy-sapping found much higher levels of dissatisfaction with services
effects of medication were reported in two studies of Black because of their perceived religious insensitivity. As one study
African, Black British and Black Caribbean service users: report put it:
–
They lied to me, said insulin would make me feel – T
he Muslim community is not satisfied with the service
more relaxed. Convinced me to take the drug/poison, provision and there is a need for improvement in
and then injected it into my bum... After this, I could understanding Islam and Muslims in general.
not function.
Studies among Orthodox Jewish communities also reported
• In a study of 55 Black Caribbeans aged 55 and over, some dissatisfaction with primary care services because of their lack
were dissatisfied with their treatment because it involved of understanding of religious practices. It was thought that this
only the use of medication. They expressed a need for could lead to a misdiagnosis:
human interaction and the chance to talk:
–
The example of the Holyday of Passover could be
–
How can a pill help you deal with things? Does it misconstrued to the outside world as an OCD
talk to you and does it ask how you’re feeling, does it [Obsessive Compulsive Disorder], with its ‘washing
befriend you? the entire apartment’ [a requirement for Passover].
4.5.8 Inpatient services • 24 Black African, Black British and Black Caribbean
Satisfaction with hospital inpatient services varied among secondary care service users and carers were asked
those who had experienced these, although overall the ‘How would you describe your experience of mental
majority were dissatisfied. As a study report on South Asian health services?’. Most were dissatisfied, with almost
service users and carers put it: half replying ‘poor’ or ‘very poor’ and only 8% said
‘good’. Over half felt their hospital admission could
–
The personal experiences of South Asian mental health
have been prevented.
service users within the mental health institutions
varied. Those who could speak English language and • Some studies, however, reported greater satisfaction with
were provided halal food, prayer corner and were inpatient services. For example:
allowed to wear scarf [hijab] were generally satisfied
with the so-called cultural competency of the service. – 32 Black African, Black British and Black Caribbean
women who had been inpatients were asked to rate the
• Many of the study participants who were (or had been) level of care they had received in hospital. Almost two-
in hospital because of mental illness had been placed thirds reported that it was fair, good or very good.
there under a compulsory detention order under the
Mental Health Act 1983. The majority of these were Black • Studies of Irish men and of Black African and Black
African, Black British or Black Caribbean. In these Caribbean men also recorded some satisfaction with
circumstances, their level of satisfaction was low. In inpatient services:
addition, a choice of treatments was not always offered to –
The best support I’ve received was the psychiatric care.
those detained under the act: these service users reported Things got worse before they got better and it took me
a high level of dissatisfaction about their lack of control a while to get the help I needed. I didn’t want help at
over this situation. first, I didn’t think there was anything wrong with me…
in the end I got remanded, put under Section 37. I feel
• A study of 15 South Asian, Black African and Black better today, I’ve got things going on and my life is
Caribbean service users and carers, and another of moving forward.
older Chinese people, reported dissatisfaction with
their samples’ inpatient experience. For example: – They were very good, they were very helpful. When I
was ‘down’ and when I wasn’t happy, they lifted my
–
The nurses would come in and ‘huy huy huy’, pointing confidence and motivation.
this way and that – they didn’t treat the patients like
human beings
4.5.9 Talking therapies
–
My experience of mental health services has been A wide variety of satisfaction rates with talking therapies was
poor. Firstly I was assaulted – they call it restraint – reported by the studies. As discussed in detail in section 4.3,
whilst in hospital, and then I was abandoned after satisfaction was strongly related to whether or not the relevant
leaving hospital. professional was perceived as being able to understand the
patient’s culture and, particularly, whether or not patient and
– No-one spoke to me or helped me work through my
professional could communicate in the same language (many
problems in hospital – I was left to wander around,
examples of this are provided in section 4.3.1). The perceived
being offered drugs by other patients, staff did not
effectiveness of talking therapies is discussed in section 4.2.3.
seem interested in me. The whole experience was very
isolating and scary and I would avoid ever going to For example, a study of more than 30 South Asian women
hospital again. who had experienced domestic violence reported a lack of
satisfaction with counselling because of cultural differences
Feelings of isolation in a hospital setting was a recurrent
between them and the counsellor:
theme among the studies that included these inpatients’
experiences: –
I had a white middle class female counsellor. I could not
relate to her. She did her best but she was not culturally
– There was no-one there for me to talk to, no-one to
aware of my issues.
relate to.
– I don’t talk with [staff or other patients]. I talk very This finding contrasts with positive reports from a study that
little. There are no other Chinese patients here… I just highlighted the satisfaction reported by Bangladeshi women
want to leave hospital. This is an environment for who had undertaken counselling with a Bangladeshi counsellor.
English people. The women were also extremely disappointed that the service
was ending because of lack of funding.
• In a study of 40 South Asian males, most of whom had 4.5.10 Complementary and ‘alternative’ therapies
been diagnosed with a mental illness, psychotherapy/ Overall, although only a minority of study participants had
counselling was rated highest from a list of 24 services received complementary or alternative therapies, they were
capable of increasing their satisfaction with mental satisfied with them and preferred them to medication and
health services. talking therapies (as discussed in section 4.2.4). Evidence of
this satisfaction includes:
• Some study participants expressed satisfaction with talking
therapies as a welcome alternative to medication. The • A study of mainly older male Irish mental health service
following comment, from a study of mainly older male users, who highlighted the positive effects of art therapy:
Irish service users, was typical of that study’s participants:
–
I go to art therapy and that really helps me, it brings
–
I didn’t want tablets, I just wanted therapy [counselling]. everything out of you and helps you get better.
I’ve got it now and it’s really helped.
• A study of 80 South Asian women who had received
• However, other Irish and Irish Traveller study participants complementary therapies, including massage and
expressed dissatisfaction with talking therapies: acupuncture. These therapies were much appreciated.
–
The GP referred me to a psychiatrist. I only went a For example:
couple of times… We sat in a circle. There were loads of –
The antidepressant tablets were not working, so I tried
men there [the participant is a woman]. The psychiatrist several things – acupuncture, herbalist, massage. I did
went around the people. I did not want to discuss my feel some improvement after using them.
issues in front of people. I did not expect a group.
As the study report summed up:
– Trying to make me talk and I did not want to. I would not
rush to go see a counsellor or talk to anyone. –
Several women reported using complementary therapies
to improve their mental wellbeing… these services were
• Many other study participants were similarly dissatisfied particularly sought by women who did not wish to use
with talking therapies. In particular, a study of Black medication for their mental health issues.
Africans who had AIDS or were HIV positive, and some
of the studies of asylum seekers and refugees found the • A study in which some service users had received
concept of counselling, with a focus on past issues, recreational treatments:
unhelpful. As one of the study reports put it, these study –
The swimming and relaxation therapy worked magic.
participants thought that:
• A study that compared levels of satisfaction with
–
The Western psychological process of digging into past
counselling and gardening therapy among a sample of
personal experiences was unnecessary and tortuous.
asylum seeker and refugee men who were experiencing
For example, the following comments are typical of those symptoms of Post-traumatic Stress Disorder (PTSD). All
participating in a study of 132 asylum seeker and refugee the men preferred the gardening therapy. Their preference
men who were showing symptoms of Post-traumatic Stress was backed up by a clinical assessment using Clinical
Disorder (PTSD) because of the experiences that had led to Outcome in Routine Evaluation (CORE), showing that the
them leaving their home countries: men had found talking therapy to be more distressing than
helpful. They were, however, extremely positive about
–
I was always tearful when I was asked my story. I liked gardening therapy:
the counsellor but did not want to talk to him. I want to
actively forget. –
I just had to dig and be with the soil and just share about
the garden with others, not my past.
– I was scared (during counselling) as I wanted to know
what this guy is asking me questions for. – In garden, I was myself and I felt whole, a new being,
just me and my hands.
One study report explained the reason for such attitudes
to counselling:
–
[Information on mental health services should include]
a clear definition of counselling as this service is not
popular in Africa. For people to understand the need
of counselling, they first need to understand what
counselling means.
4.5.11 Aftercare services • A study of 50 young people, mainly Black Caribbean and
Study participants expressed dissatisfaction with the shortage Mixed Black Caribbean and White asked participants
of aftercare services and the lack of information about them. whether they thought mental health services met the care
A recurrent theme in several study reports was: and support needs of young people when they are
discharged from hospital. The majority felt these needs
–
I was not given any information when I left [hospital]…
were unmet and some had personal experience of this:
I didn’t have a clue where I should turn to, not a clue
where I was supposed to go or who I was supposed to go – They don’t care once you leave.
to and talk to if I became ill again. – I’m just a number to them. They helped me a lot when I
Examples of dissatisfaction with aftercare services include: was there [hospital], but I need more help now, just
somewhere to talk about my issues.
• A study of Black African, Black British and Black
Caribbean people, which recorded much dissatisfaction – They don’t really care once you have left. I have only
with aftercare services among 24 service users and carers: been visited twice since I left [hospital] a year ago.
–
I was kicked out of the system and I had to fend for It was stressed by several study reports that the lack of aftercare
myself – I had nowhere to go, nowhere to live – no services could result in the so-called ‘revolving door’ pattern:
care co-ordinator or CPN [community psychiatric service users are discharged from psychiatric units with no
nurse]… I was literally taken in [to hospital], drugged aftercare services to address the problems in their day-to-day
up, kicked out… I never had support from day [aftercare] lives that may have contributed to their poor mental health
services. (such as financial and accommodation problems), with the
result that they become mentally unwell again and are re-
–
The ward forgot to inform him of appointments on
admitted to hospital.
discharge. He lives independently… was given six boxes
of tablets on discharge, and no-one ensured that he can There was more satisfaction with aftercare services when
understand how to medicate safely. voluntary sector services were involved in the provision. For
– There needs to be a care co-ordinator in place before example, in a study of 42 Black African, Black British and
you get out, because in the time between getting out and Black Caribbean women, a large majority of whom had been
getting a care co-ordinator, that’s when many people get in hospital with a mental illness, two-thirds said they were
lost in the system… they come out and they vanish satisfied with aftercare services and highlighted the contribution
because of their state of mind – and no-one ever chases made by voluntary sector services to this satisfaction (as
you up. discussed further in section 4.5.4).
However, the same study also recorded more positive 4.5.12 Care plans
experiences, including the following from a service user The Care Programme Approach (CPA) is the process that mental
diagnosed with a serious mental health condition: health service providers use to co-ordinate the care for people
–
The people I see do actually help me… I used to be the who have mental health problems. CPA was introduced by the
kind of person who bottled up my problems, I didn’t Government in 1991, and updated in 1999 (http://cpaa.org.uk/
speak about it at all, but since I started attending thecareprogrammeapproach). It has four main elements:
[aftercare sessions] with my co-ordinator and nurses, I • Assessment
explain to them any problems I might have and they do Systematic arrangements for assessing the health and
actually help. social needs of people accepted by the specialist mental
• A study exploring the experience of 50 South Asian health services;
service users and carers asked service users if they were • A Care Plan
satisfied with the services provided after discharge. Half of The formation of a care plan which addresses the identified
them said they were. health and social care needs;
• A Key Worker
The appointment of a Key Worker (now Care Co–ordinator)
to keep in close touch with the patient and monitor
care; and
• Regular Review
Regular review, and if need be, agreed changes to the
care plan.
The CPA operates as two levels – standard and enhanced. Similarly, a study of Orthodox Jewish service users
These are described on http://www.lifewithvoices.co.uk/ found that:
care_in_the_community as follows:
– Many participants reported that... they did not have a
Standard CPA care plan. This included severe cases such as
The standard CPA is for people who require the support schizophrenia and clinical depression.
of only one agency. People on standard level will pose no
• Even where care plans were in place, the way in which
danger to themselves or to others and will not be at high risk
they worked in practice was not routinely reported to be
if they lose contact with services. The input of the full
satisfactory. A study of 61 Black African, Black British
multidisciplinary community mental health team will not
and Black Caribbean mental health service users and
be required – service users on standard CPA will generally
carers, for instance, reported their dissatisfaction because
require the support of only one or two members of the team.
they were not meaningfully involved in planning their
An example of standard CPA might be someone who has been own care:
assessed as needing a fortnightly visit by a community mental – Many complained that whilst they may be invited into
health nurse (CMHN) plus an appointment with the psychiatrist the planning processes, nothing of what they said would
at the outpatient clinic every three months. The CMHN will be be taken into account.
the care co-ordinator; the care plan will be the fortnightly
visit, the outpatient appointment and any treatment (such as • However a small minority of the study reports recorded
medication or counselling). a more positive experience of care planning, such as a
study of 42 Black African, Black British and Black
Enhanced CPA Caribbean women, most of whom had been in hospital
The enhanced CPA will be for people with complex mental with a mental illness. Two-thirds said they had been
health needs who need the input of both health and social consulted on their care plans.
services. People on enhanced CPA generally need a range of
community care services and community mental health care 4.5.13 Day centres
services. This group of people may include those who have Mental health day centres typically provide a daily programme
more than one clinical condition and also those who are hard of support, adult education classes, one-to-one support,
to link with services and/or with whom it is difficult to maintain groups and activities for people dealing with mental health
contact. Some people on enhanced CPA are thought to pose a issues (although it should be noted that some of the studies
risk if they lost contact with services. Generally speaking, that included older people did not distinguish between day
enhanced CPA tends to apply to people with the more centres for those with mental health services and those for
severe mental health problems such as schizophrenia or older people).
manic depression.
• Satisfaction with day centres was discussed by only a
• Levels of satisfaction with care planning were not small minority of the studies, most often those focusing on
consistent across the study reports, but overall, a majority older South Asians and Irish people, who reported some
reported a lack of satisfaction -– and indeed, a lack of positive experiences of accessing day centres and
care plans. For example: satisfaction with being ‘looked after’:
Few of the service users in a study of 108 asylum seekers, –
It’s good that they have day centres because when
refugees, Chinese and Irish people knew what a care you attend the staff can notice the warning signs and
plan was, and the study report concludes: changing patterns.
–
As mental health services purport to base their care • A study among older South Asians and their carers also
around effective care coordination and care planning, reported some satisfaction with day centres:
it seems very odd that people who have accessed
services would not know what a care plan is… It is –
Ten participants attended day centre 1-2 days a week…
recognised that not everyone who feels unwell and most said that they found it helpful, but were disappointed
goes to the doctors will have a care plan. However, of that no Asian food was provided, although they did
those who accessed psychiatrists, counselling or enjoy the activities and having company of others.
psychologists, none had an understanding of what a
care plan was, nor did they have one.
• A report on a study of 152 Pakistani people concluded that 4.5.15 Services for carers
more day centres were needed, equipped with culturally Although two study reports specifically targeted carers, many
competent staff and activities. The study reported problems others included carers in their research focus and samples:
with existing day centres for people with mental health overall, a total of 344 carers participated in this project. Some
problems being culturally inappropriate and too public: data on their level of satisfaction with the support available
– Day centre is situated on the main road and people to them were gathered and overall overwhelmingly revealed
feel they will be seen if they go there. Mainstream dissatisfaction.
[day centres] offer services that cater mainly for white • A large majority of 43 Black African, Black British and
people, therefore understanding particular problems of Black Caribbean carers reported, as one female carer put it:
Asians i.e. jinn possession/nazar (evil eye) etc will not
be understood. –
There is a long way to go before the system is acceptable
to African Caribbean people. No-one takes us seriously,
• A study of 40 South Asian males reported that their and we are the ones that know our men best – we live
sample rated highly ‘Asian-specific drop-in day centres’ with them and we know what triggers them.
from a list of services that would increase users’ satisfaction
with mental health services. • When some of the carers were asked about their satisfaction
with GPs, the issue of not being listened to was reiterated,
4.5.14 Mental health services provided by the particularly by those caring for a dementia sufferer:
voluntary sector and community organisations – GP was not interested and did not have a caring attitude
In considering the mental health services offered by local when discussing the matter.
voluntary and community organisations, and the subsequent
– I was told by my mom’s GP that my mom was getting
levels of satisfaction with them, it is important to bear in mind
old and that’s why she was losing her memory. He
the diverse range of such agencies involved in this project.
was unsympathetic and prescribed my mom with
Fourteen of the studies were conducted by specialist mental
sleeping drugs.
health agencies, including local branches of national
organisations such as Mind and Rethink: mental health issues • Establishing and building positive working relationships
are central to these organisations’ work. Other studies were between service providers and carers was often reported to
conducted by community organisations with a wider remit and be problematic. Frustrations were particularly expressed
many offered just a few services that support mental health. regarding the communication between hospitals and service
users’ families. For example:
Voluntary agencies and community organisations providing
mental health services tended to score highly in satisfaction –
Sometimes when family members are in hospital or
ratings. However, data on the mental health services they offer get sectioned the staff don’t tell you when they have
were not as plentiful as data on primary and secondary services. them – not even a phone call – or tell us when they
Further, the range of mental health services they offered was change their medication.
generally restricted to talking therapies (although, as discussed
in section 4.2.5, the support and activities offered by voluntary • Several studies reported the difficulties carers had in
agencies and community organisations was seen by those accessing support. As one study report concluded:
attending as invaluable for maintaining their mental wellbeing). –
Many carers did not know that help was available to
For example: support them and thought they wouldn’t be entitled to it.
• When asked about quality of support received from For example, participants from two studies stressed that:
voluntary agencies, three-quarters of a sample of 50 South
Asian service users reported a good or excellent service. –
I had no help or information in the first year. I didn’t
No-one reported that the service was poor. have a social worker or know that people could help me.
– Help does come, but by the time it does come, there is
• Satisfaction with the type of support offered by community
much damage done here.
organisations is well-illustrated in a study focusing on
Kurdish, Turkish and Turkish Kurdish young people: • Obstacles facing carers in accessing help included what
– My 17 year-old daughter became very depressed when was seen as excessive paperwork. For example, a study of
her older brother died of a car accident… things got so Black Africans and Black Caribbeans reported that:
bad that I approach the local community centre for help –
Carers were aware of or would like to access certain
who provided us the support we needed in seeking help. services, but once they come across certain obstacles i.e. too
They told us everything would be confidential and that it much paperwork, or the time it takes to access certain funds
could happen to anyone. Since then my whole attitude or services, they saw it as ‘too much bother’ and would
towards mental health has changed. rather struggle on with the caring role [without help].
• A study of 20 Bangladeshi users and carers reported that 4.6 A more active role for Black and minority
the carers did not feel supported:
ethnic communities and service users
–
The carers stressed that they were not offered any help
As discussed in sections 3.1.2 and 3.1.6, the NIMHE Community
despite having to cope with the young person with
Engagement Project was designed as the action around one of
mental health problems. They felt they were neglected
the three building blocks of the DRE programme for change:
by the services.
a programme of community engagement with Black and
• I50 older South Asians and their carers pointed to the minority ethnic populations, to ensure that they have genuine
confusion and conflicting advice they encountered: opportunities to influence mental health policy and provision,
and to promote mental health and recovery.
–
It took almost 2 years to find out what is useful in
the caring role. There are too many organisations to This project allowed 547 community researchers, 75
approach and conflicting advice given. community organisations, 935 Black and minority ethnic
current or ex-mental service users, 344 carers and 4,472
• Carers’ assessments are used by social services departments other community members to contribute to the development
to decide what help to provide. The purpose of the of mental health policy and to the planning and provision
assessment is for carers to discuss with social services of services. The project has therefore contributed to the DRE
what help they need with caring, including support to characteristic of ‘a more active role for BME communities and
maintain the carer’s own health and balance of their BME service users in the training of professionals, in the
commitments. development of mental health policy, and in the planning
The issue of carers’ assessments was highlighted in one and provision of services’. Section 5 gives more details of
report on dementia. Half of the 78 carers in the study had this achievement in terms of the outcomes for individuals,
been assessed, and of those, two-thirds said they were community organisations and communities, from a variety
dissatisfied or very dissatisfied with the outcome: of perspectives.
–
It was a paper exercise, as my social worker did not Two commentaries are included in this section. The first is on
know what to do with the carer’s assessment after she mental health service user involvement in research, which
had completed it. begins by praising the community organisations that employed
a total of 48 current and ex-service users as community
– Once my needs were identified, my care co-ordinator researchers for this project. The second commentary describes
was struggling to find something that was suitable, an approach that has demonstrated the contribution service
because the resources were not there. users can make to the DRE vision of service characteristics.
This section has revealed the complexities of the factors The community organisations’ recommendations for a
resulting in satisfaction and dissatisfaction with mental more active role for members of Black and minority ethnic
health services and how these are related to issues communities and Black and minority ethnic service users
discussed throughout this report. Indeed, all the in the development of mental health policy, planning and
community organisations’ recommendations in section 6 provision of services are detailed in section 6.6.
would, if implemented, increase satisfaction with services.
The difficulty is sustaining such initiatives. It does concern me who did not speak English were less intelligent than those who
that the enthusiasm of being involved and trained as a user did (ibid, 2003).
researcher may not be sustained after the projects are finished.
This is because it is still not routine to employ service users Conclusions
as researchers and means that expectations may have been UFM provides a productive route for accessing users’
raised which will not be fulfilled. I hope this is not the case but experiences of mental health services and also has the potential
it would be good to know how these talents will be used in to make a significant contribution to the DRE aims. Through
the future. actively involving service users from excluded groups UFM
allows members of Black and minority ethnic communities to
User-Focused Monitoring identify what they consider to be their mental health needs. It
Robert Little, Research Fellow, ISCRI, UCLan is a powerful tool for facilitating the development of more
User-Focused Monitoring (UFM) was developed by the effective and responsive services, for ensuring greater
Sainsbury Centre for Mental Health under the direction of Dr community participation and ownership of mental health
Diana Rose. Following pilot work carried out in London this services, promoting understanding of non-statutory services
approach has been used in many different mental health sites. and may ultimately lead to Black and minority ethnic groups
The approach has demonstrated that those with severe and being more directly involved in the process of commissioning.
enduring mental health issues are able to make informed
judgements about the service they receive; are capable of
recognising good practice; and are able to make suggestions
about where care and services can be improved (Rose, 2001).
of cases of dementia between 7,270 and 10,786 and of depression communicate their concerns to the GP.
between 33,559 and 52,980 among Black and minority ethnic
older people from all groups combined (Shah, 2008). The 79 studies described in the current report highlight these
concerns about communication elegantly. Moreover, one study
Access to care of elderly Chinese people highlighted language as one of the
The pathway to reach secondary care Old Age Psychiatry main barriers to accessing services. Furthermore, studies of
Services (OAPSs) encompasses several sequential stages: the elderly people highlighted the lack of availability of interpreters
first appearance of an illness in the community; consultation in consultations with GPs and at hospital appointments. Some
with the GP; identification and management of the illness by the studies also reported concern about the lack of knowledge of
GP; referral to secondary care; and identification and mental health issues amongst interpreters as another barrier.
management of the illness in secondary care (Goldberg & This is very important as the clinician and the patient cannot be
Huxley, 1991). Elders and their families from several different sure if the interpreter has accurately translated information in
Black and minority ethnic groups, including those from the both directions. Some studies also reported concerns about
African Caribbean, Asian, Chinese and Vietnamese groups, are using family members as interpreters and this has also been
well aware of services provided by GPs (Bhalia & Blakemore, suggested before. The concern here is that family members are
1981; Barker, 1984; McCallum, 1990). They also have high not professional interpreters, are likely to lack training in mental
general practice consultation rate (Donaldson, 1986; Balarajan health, are emotionally involved, and may not wish to or be able
et al., 1989; Gillam et al., 1989; Lindesay et al., 1997b; to translate sensitive information. Concern was expressed about
Livingston et al., 2002). For example, 70% of Gujarati elders in translated information given to individuals who may not be able
Leicester had consulted their GP in the preceding month to read their first language and suggestion of other mediums of
(Lindesay et al., 1997b). However, the prevalence of Black and communication like DVDs were made.Other factors related to
minority ethnic elders in contact with OAPSs is generally low patients and family members that may contribute to barriers to
(Blakemore & Boneham, 1994; Rait & Burns, 1997; Lindesay accessing services include: the belief that nothing can be done;
et al., 1997b; Shah & Dighe-Deo. 1998; Jagger, 1998). lack of awareness of available services (Bhalia & Blakemore,
1981; Age Concern/Help the Aged Housing Trust, 1984; Barker,
Possible reasons for the discrepancy between high general 1984; McCallum, 1990; Lindesay et al., 1997b); lack of
practice consultation rates and low prevalence in OAPSs, awareness of access procedures for available services (Lindesay
despite the community prevalence of mental illness being et al., 1997b); belief that available services are inadequate,
similar or higher among Black and minority ethnic elders than inaccessible and culturally insensitive (Hopkins & Bahl, 1993;
in the indigenous group, include the influence of factors related Lindesay et al., 1997b; Lawrence et al., 2006); previous poor
to patients and their families, general practice and secondary experience of services (Lindesay et al., 1997b; Bowes &
care (Shah et al., 2005b). The current report, compiled from a Wilkinson, 2003); and fear of stigma attached to mental illness
series of studies of Black and minority ethnic individuals (Barker, 1984; Manthorpe & Hettiarachy, 1993; Marwaha &
(service users, carers and others), is timely in the context of Livingston, 2002; Livingston et al., 2002). The series of studies
rising number of elderly people from Black and minority ethnic described in this report clearly highlights concerns over cultural
groups and their poor representation in secondary care services. sensitivity (e.g. food, language and communication issues),
Moreover, the characteristics of the age structure in the different faith and stigma at different levels, which contribute to barriers
study samples closely resembles the elderly age structure from in accessing services.
the 2001 population census for Black and minority ethnic groups
(Shah, 2007). The current series of studies has been able to substantiate some of
the previously reported concerns from studies of individual Black
The context for the findings of the NIMHE Community and minority ethnic groups for individual disorders, by studying a
Engagement Project large and diverse range of Black and minority ethnic groups.
Older people from Black and minority ethnic groups with
potential mental illness may be unfamiliar with symptoms of Policy context
mental illness (Adamson, 2001; Marwaha & Livingston, 2002; Over the last decade, the mental health of Black and minority
Bowes & Wilkinson, 2003; Purandare et al., 2007), as ethnic groups has become a national priority in the United
traditionally, few Black and minority ethnic elders reached old Kingdom. This has resulted in the publication of a number of
age (Manthorpe & Hettiarachy, 1993; Rait & Burns, 1997). detailed governmental reports, guidelines and policies. These
Consequently they may not recognize symptoms of mental can broadly be divided into publications relating to Black and
illness and dismiss them as a function of old age (Shah et al., minority ethnic mental health in general and those relating to
2005b). These reasons may be further enhanced if the patient is elderly mental health with specific mention of Black and
unable to communicate symptoms of mental illness to family minority ethnic groups. The most influential documents have
members and the GP either due to lack of appropriate vocabulary been published directly by the Department of Health or related
or fluency in English (George & Young, 1991; Shah, 1992, public bodies including the National Institute for Mental Health
1997a,b, 1999; Thornton et al., 2009; Thomas et al., 2009); also, in England (NIMHE), National Institute for Health and Clinical
for the same reasons, family members may not be able to Excellence (NICE), the Healthcare Commission and the Care
Services Improvement Partnership (CSIP). The National Service discrimination in mental health services in England (Department
Framework (NSF) for Mental Health (Department of Health, of Health, 2005a). It recommends three building blocks: more
1999), primarily covering working age adults (16-65 years), appropriate and responsive services – specifically mentioning
was one of the first governmental policy documents to the improvement of clinical services for groups including older
acknowledge ethnic inequalities in mental health service people, asylum seekers and children; community engagement –
provision. The NSF for Older People (Department of Health, aiming to engage communities in planning services; better
2001) set standards for the health and social care of older people. information – improved monitoring of ethnicity, better
This document recognised that “older people from Black and dissemination of information and good practice and a new
minority ethnic communities need accessible and appropriate regular census of mental health patients. The document
mental health services”, assessments may be “culturally acknowledged that older people from Black and minority ethnic
biased”, assumptions are sometimes made about the willingness communities face the double jeopardy of old age and ethnic
of families to act as primary carers for their older relatives, and minority status, that they can be marginalised in society and
information about services may not be readily available in an have specific needs. Potential difficulties around communication
accessible form and tends to rely on translated leaflets and and particularly written language were highlighted, as was the
posters. This document emphasised that mental health services need for services to provide adequate interpretation facilities.
should “take account of the social and cultural factors affecting
recovery and support”, but made few specific suggestions as to One of the key principles of care outlined in the National
how cultural awareness might be improved amongst mental Institute for Clinical Excellence’s (NICE) clinical guidance on
health and social care professionals. dementia related to diversity (sex, ethnicity, age or religion),
with a strong emphasis on ‘person centered care’ (NICE, 2006).
Forget Me Not, the Audit Commission’s analysis of mental Although there was no mention of specific Black and minority
health services for older people in England and Wales ethnic groups, this guidance advocated that the needs and
(Audit Commission, 2000, 2002), challenged the commonly preferences of dementia-sufferers relating to diversity must be
held erroneous assumption that Black and minority ethnic identified and, where possible, accommodated. There was also
families “look after their own” and have less need for services. recognition of language as a possible barrier to care, with
It recognised that services “may be insensitive to cultural norms recommendations that interpreters are readily available and that
and may threaten carer’s wellbeing if they do not reinforce the written information is provided in the preferred language and/or
carer’s role in an appropriate manner”. Despite the extensive an accessible format. The National Institute for Clinical
recommendations in this report, there was little addressing these Excellence’s technical appraisal on drugs in the category
issues other than suggesting that information for users and carers cholinesterase inhibitors used in the treatment of dementia
is distributed “in languages and formats that can be understood (NICE, 2007) was found to be unlawful because it breached the
easily by local people”. Race Relations (Amendment) Act 2000. It discriminated against
people from different ethnic backgrounds, particularly those
Everybody’s Business (Department of Health, 2005b), a service who first language was not English, because it relied heavily on
development guide, aimed to build on the service models an asessment tool developed in English.
outlined in the NSF for Older People. Although this guide
highlighted the needs of a number of special groups, including The recently published National Dementia Strategy for England
those with early-onset dementia, learning disabilities and older also recognises the importance of ethnicity, culture in religion in
prisoners, there was no specific reference to Black and minority the systematic development of services for dementia
ethnic elders other than mentioning that religious and cultural (Department of Health, 2009).
needs should be taken into account when providing services.
There is clear recognition in these policy documents that Black
The Inside Outside report (National Institute of Mental Health and minority ethnic elders face particular challenges and are
England, 2003) recognised the ethnic mental health inequalities especially vulnerable to exclusion, marginalisation and
both inside and outside of services and that they had not been inequality in mental health promotion and mental health service
adequately addressed by existing mental health initiatives such access. The studies in the NIMHE Community Engagement
as the NSF for Mental Health and the NSF for Older People. Project make a range of recommendations to reduce barriers to
This report outlined key components to eliminate mental health accessing services. Almost all the recommendations are in
inequalities: ensuring accountability and ownership in relation keeping with recommendations from a range of central guidance.
to Black and minority ethnic communities; developing a Moreover, unlike all the central guidance, these recommendations
culturally capable service; setting national standards to improve clearly provide practical details of specific ways in which the
access, care experience and outcome; and enhancing the cultural barriers can be reduced. Service providers, service commissioners
relevance of research and development. and policy makers need give serious consideration to these
detailed practical suggestions to reduce barriers to accessing
Delivering Race Equality in Mental Health Care is a five-year services.
action plan for achieving racial equality and tackling
4.8 The census • Longest median length of stay was among Black
Caribbean, Mixed White and Black Caribbean, South
As shown in section 3.1.2, one of the three building blocks Asian, and Chinese groups.
of the programme of change laid out in Delivering race
equality in mental health care (Department of Health 2005a) • Inpatients from Black Caribbean, Mixed White and Black
was better information, including a yearly census of the Caribbean, and Other Black groups were overrepresented
ethnicity of mental health service inpatients. in medium and high secure units.
Since 2005, there have been five annual Count me in • Rates of detained inpatients with capacity to consent to, but
census surveys of all psychiatric inpatients in England refusing, treatment were the highest in Black Caribbean,
and Wales. These censuses have collected data on a variety Black African, Mixed White and Black Caribbean, Other
of parameters and the findings of the first four are available White, and Other Mixed groups.
at http://www.cqc.org.uk/guidanceforprofessionals/
healthcare/allhealthcarestaff/countmeincensus.cfm. • Rates of referral for admission from GPs were lower in
the Black Caribbean, Mixed White and Black Caribbean,
It is important to note that the censuses refer only to inpatients, and Pakistani groups.
and that these were a minority of the 935 mental health service
users who participated in this project. Nevertheless, many • Rates of referral for admission from community mental
study participants and community organisations were aware of health teams were lower in Black Caribbean, Mixed
the overrepresentation of some ethnic groups as inpatients, and White and Black Caribbean, Other White, and Black
the data from the censuses support the findings from the study African groups.
reports, particularly regarding Black and minority ethnic • Rates of referral for admission from social services were
people’s fears of mental health services (section 4.1) and lower in the Other White group and higher in the Mixed
dissatisfaction with them (section 4.5). White and Black Caribbean group.
The 2008 census reported that: • 6% of inpatients reported that English was not their first
• There was an increase in the proportion of psychiatric language. This was most prevalent in Bangladeshi,
inpatients from Black and minority ethnic groups, from Chinese, Other, and Pakistani groups. 2% of inpatients said
20% in 2005 to 25%. they needed an interpreter and 78% of these were from
Black and minority ethnic groups. Just under 1% reported
• Admission rates were increased in the Black Caribbean, using non-verbal interpreters. These proportions are similar
Black African, Other Black, Mixed White and Black in all Count me in censuses.
Caribbean, and Mixed White and Black African groups.
This pattern is similar in all the Count me in censuses. • A wide range of religions were represented among inpatients
from all ethnic groups. The proportion of inpatients who did
• Admissions rates increased for all the Black and Black not have a religion were highest among the mixed group,
British ethnic groups, except the Other Black group and lowest among the South Asian groups.
between 2005 and 2008. The same was observed for
the Other White group. Regarding the Care Programme Approach (CPA) discussed in
section 4.5.12, the Count me in censuses report that:
• Rates of detention under the Mental Health Act 1983
were higher in the Black Caribbean, Black African, Other • The proportion of inpatients under Enhanced CPA has
Black, and Mixed White and Black Caribbean groups. The progressively increased from 2005 to 2008.
pattern is similar in all the Count me in censuses. • In 2008, the rate of inpatients under Enhanced CPA was
• Detention rates were also higher in the Other White and higher in the Black Caribbean group. There were no other
Pakistani groups. ethnic differences.
• Seclusion rates were higher in the Black Caribbean, Black • In 2008, the rates of detained inpatients thought to lack the
African and Other Black groups and this was a consistent capacity to consent to the admission were the highest in
pattern in all the Count me in censuses. Black Caribbean, Black African, and Other Black groups.
25000
18936 17643 16126 15137 In considering DRE, a race-based intervention, we have to
20000
consider this rapidly changing Black and minority ethnic
15000 population. The analysis of Count Me In to date has depended
on the 2001 Census data and, latterly, the 2005 mid-year
10000
population estimates from the Office of National Statistics.
12732 12263 12924 13660
5000 However, these do not capture the rapid changes since 2005
during the course of DRE.
0
cMi 2005 cMi 2006 cMi 2007 cMi 2008
Y
Year (of count Me in census))
Count Me In and DRE are not alone in facing these challenges. Graph 2: The Number of Patients Secluded at Least Once
In the context of World Class Commissioning, many healthcare in Previous 3 Months (or current hospital stay, if shorter)
organisations are developing a “rapid response” way of knowing
their local populations and few, if any, are perfect. However, it is 10
clear that estimates of resident populations, from the registrations
8
in maintained schools, GP registrations and National Insurance
number of patients
applications for example, are showing a number of very recent, 6
very rapid population changes. Any consideration of DRE will
need to include an understanding of these changes. 4
Seclusion is defined in the Mental Health Act’s Code of Practice as: CMI 2005 CMI 2006 CMI 2007 CMI 2008
in three years and for the Black African group in 2005 and caribbean
2008. Of interest here, is the change for the Other White group, count Me in year
which includes the majority of people from the EU migrations
discussed above. 2005 2006 2007 2008
http://www.cqc.org.uk/publications.cfm?widCall1=custom
DocManager.search_do_2&tcl_id=2&top_parent=4513&
tax_child=4759&tax_grand_child=4858&search_string=
Accessed 24 August 2009.
http://www.palgrave-journals.com/pt/journal/v135/n1/
index.html Accessed 24 August 2009.
This section details the outcomes of the NIMHE Community 5.1.1 The community researchers’ qualifications
Engagement Project for Black and minority ethnic individuals Each community researcher was assigned a personal tutor
and community organisations. Profiles of individuals and (usually their community organisation’s support worker from
community organisations are presented as illustrations of UCLan) who met with them individually up to three times
these outcomes. during the project to identify their aims and aspirations,
explore the level of qualification (if any) they wanted to
In order to provide a picture of the outcomes of the NIMHE pursue and discuss their progress.
Community Engagement Project for Black and minority ethnic
communities, a survey of 140 community development workers Of the 547 community researchers, 321 (59%) enrolled on the
was undertaken and the results are reported in this section. training workshops that were a mandatory element of this
project and were provided by UCLan. The training included
basic information on aspects of mental health, mental health
services and local and national mental health policies, and on
5.1 Outcomes for Black and minority relevant data collection and analysis methods.
ethnic individuals
After attending at least six of the seven workshops, the
At the final meeting between each UCLan support worker community researchers either gained a University Certificate
and community organisation, an exit form was completed. It of Achievement or could go on to enrol for one of two
included items to capture information about outcomes and other university certificates that required them to submit
experiences for the individuals who had been working on assignments. By the end of the project:
the NIMHE Community Engagement Project as community
researchers. The main outcomes reported related to: – 123 had been awarded a University Certificate of
Achievement;
– enhanced communication skills;
– 143 had been awarded a University Certificate in
– knowledge of mental health conditions and policies; Community Research and Mental Health; and
– the academic learning experience; – 55 had been awarded a University Certificate in
– gaining knowledge of community research, questionnaire Community Research.
design, conducting fieldwork, interviewing and listening
skills, data analysis and report writing;
– learning about mental health service user perspectives;
– project management skills;
– administrative skills;
– budget management;
– organising community meetings and launches;
–
shadowing members of the steering group to learn
about their work as, for example, mental health service
commissioners and providers;
– building confidence;
– networking and meeting people outside usual circles;
– progression to jobs in mental health work with Black and
minority ethnic people, (including at least 20 who were
employed as community development workers); and
– qualifications from UCLan (see section 5.1.1) and
plans to undertake further study, including degrees in
psychology and social work.
Before being invited to join in the NIMHE community I am currently working as a Mental Health Community
engagement project with Mind in Harrow, researching the Development Worker in Dorset, focussing on Black and
experiences and needs of Gujarati-speaking elders, I knew Minority Ethnic and hard to reach issues.
very little about mental health. I did, however, know a lot
about learning disabilities as I have been a carer for many My experience of work with mental health began with
years and have run an agency to support children with the NIMHE community engagement project in 2007. At that
learning disabilities, and their carers. I found during the time I was Chair of the Portuguese Association in Somerset
community engagement project that there are many and I was also working with the Somerset Race Equality
similarities in the way that mental health conditions and Council (SREC). When SREC was invited to become one of
learning disabilities are viewed within the community. For the participating projects, I joined the team as a community
example, the stigma that is experienced within the family, researcher.
plus the tendency to become isolated.
The project offered me the chance to learn about mental health,
and to take that knowledge and begin to discuss mental health
During the project I learned a great deal about mental health
in the community, and this was an important first step in
and gained insight into the issues facing older people in
breaking down barriers and tackling stigma around mental
our community. At the end of the project I presented the
health in the community. My experience had been that any
findings to many local agencies, including the PCT Local
mental health issues were kept hidden in the Portuguese
Implementation Team (LIT). And now, nine months after the
community, and this project brought the subject to the surface
project has finished, we are still working to monitor take up
for the first time. During the project we came across people
of the recommendations and improve services for Gujarati
who were not accessing primary care at all, usually due to
speakers in Harrow. The Mind in Harrow website now has a
language barriers and a lack of knowledge about how the
special Gujarati section on its website and we received funding
system works and also a lack of confidence.
from the PCT to fund a community development worker who
spends half of her time specifically addressing Gujarati Being involved in the community engagement project
language issues. taught me how to go through a process of identifying needs
via research and interacting with the community in a
For me, being involved in the community engagement project
structured way.
has opened up new opportunities in mental health, and I am
glad I had the opportunity to get involved in it. I am now In my role in Dorset I have a particular focus on criminal
working with Mind in Harrow as a Carer Support Worker, justice and issues affecting older adults. I am able to use the
for people of all ages. Every week I am working with service knowledge and experience gained during the community
users and their carers and am finding the work very satisfying engagement project as a useful background in exploring and
and rewarding. tackling mental health situations, and in encouraging services
to understand the complexities of mental health issues facing
Black and minority ethnic offenders and assure that the
services are prepared and have structure to support the
resettling and engagement of offenders back to the community
after being released from the criminal justice system.
Lorna Markland leaflets and let people in the community know that there is a
CDW, Bedfordshire and Luton range of pathways they can access to get help. For example,
Mental Health and Social Care I worked with one previous service user who had not had a
Partnership NHS Trust positive experience of accessing services through his GP.
Even though he needed help, he was reluctant to go back to his
GP. I worked with him and his family to access the help he
needed via a different route. Our CDW team also created a
directory of local services.
I am currently employed as a Community Development
One of the recommendations made in our community
Worker for Luton & Bedfordshire helping to deliver race
engagement report was that more links and partnerships
equality in mental health care.
should be made between organisations and the community.
My journey into mental health work began when I joined Since taking up my post I have worked on partnership
the NIMHE community engagement programme. I was lead projects with various organisations such as Nyabingi service
researcher with my church’s Mental Health project – Dignity user charity, Mind, the mental health organisation, and
in Luton. Dignity conducted one of the initial pilot projects Impact Service User Involvement group.
on mental health needs in 2005/6.
I have been involved in a whole range of initiatives in
I had been very active within the voluntary sector for a my CDW role. At the moment I am working on improving
number of years, whilst raising my family. I worked tirelessly cultural competence training within the Trust, and assessing
to address inequalities experienced by my community. My what people really need from cultural competence training to
youngest child was nearing school age and I was ready to bring about positive change for service users. I also hold a
return to paid employment. key position within the Trust’s Black and minority ethnic Staff
Network. Playing a useful role in tackling inequalities,
Getting involved with this research helped me make the transition especially around ethnicity, is exactly what I want to be doing.
back to work with ease! The whole process served as a stepping I love my job and am pleased that I have found a way to
stone which built my confidence and personal capacity. I learned combine my passion with developing a career in this way. I
new skills and gained a greater insight into Black and minority am at present looking for a relevant university course to assist
ethnic Mental Health. The accredited training raised my with my progression to the next level.
understanding of the Mental Health system and gave me not only
the university qualification but also the ability to articulate Black
and minority ethnic issues in a new way. 5.2 Outcomes for Black and minority
I was delighted to find that my community/social justice ethnic community organisations
work was a perfect fit within this race equality in mental health As detailed in section 5.1, the community organisations
care agenda – the issues being tackled were exactly the same. completed exit forms at the end of the project. Although
A job in this field would allow me to get paid for what I had these did not specifically ask about the project’s outcomes for
been doing for free! communities, some relevant information was given, illustrating
the value of the projects in achieving the DRE service
Being a member of the Focused Implementation Site (FIS)
characteristic ‘a more active role for BME communities and
Board – our research project’s steering committee – put me in
BME service users in the training of professionals, in the
the right place at the right time to help shape culturally
development of mental health policy, and in the planning and
sensitive projects as well as embed recommendations from our
provision of services’. To illustrate:
report. Having become engrossed in the work so far, I felt the
CDW role would naturally progress the work started, so – Taking part in this project has increased our awareness of
decided to apply for a position. I was successfully recruited the needs of people from BME backgrounds and our
to post in December 2007. Once in post, our CDW team engagement with them... we have now increased our BME
began to take forward projects initiated in the FIS. involvement – we have recently completed another project
and increased the number of Black and minority ethnic
The research has given me a very good understanding of the people working with us as part of our volunteering network
issues and the improvements people wanted to see. As soon as from 35 to 57. (Penwith Community Development Trust,
I took up post I could start to implement some of the changes Cornwall)
that had been identified. I could be a bridge between the
communities and the world of mental health services. One of – Very positive experience… for us as an organisation –
the first things I wanted to change was to demystify the mental we have gained a lot from it – we have gained recognition
health services among the community. Not enough was known and spread awareness of what we do to minority ethnic
in the community about services on offer, so I worked with groups… it is something we can build on. (Dorset Mind)
staff in my Mental Health Trust to develop the website, create
Other outcomes included that community organisations had: 5.2.1 Profiles of community organisations
The report authors asked three of the participating
• Made links with regional networks, especially Black and community organisations to describe their experiences since
minority ethnic and local DRE networks. the completion of their studies and on the uptake of their
• Gained funding for further projects related to mental health recommendations. They reported ongoing progress and
work. For example: partnership work with statutory organisations. Their accounts
are followed by a commentary by a race equality lead
– The Bolton Association and Network of Drop Ins (REL), which further discusses the benefits of the project
(BAND) received £30,000 from the local authority to for community organisations.
support Black and minority ethnic carer groups;
– Hikmat (Exeter) was granted £4,000 to set up a Black Derbyshire Gypsy Liaison Group (DGLG)
and minority ethnic counselling service; and by Siobhan Spencer, DGLG Co-ordinator
In 2007, Derbyshire Gypsy Liaison Group began working
–
Mind in Harrow received £100,000 to work with on their community engagement study. The group provides
mental health promotion and the Black and minority assistance and information to the Gypsy community in and
ethnic community following a proposal made based on around Derbyshire, and works with a local, regional and
the findings of its study for this project. national focus.
• Presented their studies’ findings at DRE Local Implementation The focus of our community engagement study was an
Team (LIT) meetings. exploration of the emotional and wellbeing needs of Romany
• Strengthened their links with primary care trusts. Gypsies and Irish Travellers. A team of five joined together
to work on the study, including two CDWs (working as a
• Made connections with key people in mental health job share).
services.
A total of 150 interviews were conducted for the study – 50
• Made connections between secular and religious Irish Travellers and 100 Romany Gypsies.
organisations.
Since completion of the study in 2008, progress has been
• Progressed on the implementation of their studies’ made. As well as individual capacity building that has had
recommendations. For example, with local GPs, YWCA a positive impact on individual community researchers and
Doncaster Women’s Centre had explored the issues of the community, additional work has been commissioned by
female-only service provision and the availability at all West Midlands CSIP (Care Services Improvement Partnership)
times of female interpreters. specifically exploring emotional wellbeing and mental health
needs of older people, culminating in a report entitled Shoon
• Received continued financial support for projects on the te o Puri Folki (Listen to the Elders).
basis of their studies. For example, in Manchester, the
Asian Women’s Project gained funding for the continuation Progress in implementing the recommendations that came
of a Women’s refuge after presenting their findings to local from the community engagement study is as follows:
mental health service providers.
Improved access to primary health care
Members of several of the community organisations that took It was found in the study that the lack of access to primary
part in this project also featured in a short film titled ‘Minority health care for people from Gypsy and Traveller communities
matters’ made by Barnie Choudhury. The film, which reiterates represented a significant hurdle in accessing appropriate
many of the issues raised in this report, includes case studies mental health care. Through outreach work and improved
of the lives of mental health service users from various Black inter-agency working, there have been improvements, even
and minority ethnic populations and their experiences of though there is still work to be done in improving
services. It is available on DVD (contact iscrioffice@uclan. communication and appropriate responses. One example is
ac.uk to obtain a copy). a woman who appeared to be suffering from severe mental
health problems, but was undiagnosed, and was evicted from
a council-run site despite a complex set of circumstances.
The woman has since received a mental health diagnosis
and treatment.
DGLG work is split between accommodation and health Our recommendations included developing a community
promotion. We have observed that a secure home base resource for BME people, an advocacy support service,
is paramount to good mental health care. Overall, I have improving monitoring and accountability of mental health
observed a gradual improvement on accommodation issues, services, plus developing innovative cultural mental health
as amendments to the Housing Act 2004 have assisted in awareness training.
bringing more security to Travellers, since there are fewer
evictions. I feel that improvements are ‘beginning to bite’. Since completion of the study, progress has been made towards
However, there is still quite a lot of work to do, as issues realising these recommendations. Healing Waters are now
cannot be addressed until members from the community are working in partnership with two other local organisations to
within the health care system. Many support groups still have host and support the team of four CDWs in the locality, and
to assist community members through the care system to make the community engagement study is useful as a reference tool
sure that they are not lost, as they may have no NHS number. in continuing to work towards improving access to services.
Continuity of records and information – The PCT has taken the findings and recommendations of the
patient held record cards study on board and work is continuing, particularly regarding
A further issue hampering access to mental health care is the implementing advocacy services and a drop-in resource.
lack of information available at GP surgeries for individuals Some change is now taking place in improvement and access
who have moved frequently from place to place. DGLG had to services, but the positive change is slow in manifesting a
been exploring patient-held record cards, but there were real difference. More work still needs to be done by service
concerns around confidentiality of information and a swipe providers in prioritising service users’ views and experiences.
card system is currently being investigated. This would allow
Travellers to hold their own information in a protected format.
Rethink, Birmingham
Information for the Traveller communities, Aap ki Awaaz Project
including in non-written formats
DGLG have provided information on mental health care
and emergency mental health care services to the communities
via two leaflets as part of the project on older people referred
to above. Also, it was recommended in our community
engagement study that information on mental health care be
provided in formats other than written. DGLG are working
with a Leeds-based organisation to provide a DVD package
of information.
5.3 Outcomes for Black and minority management support; and of the power and authority of
needed for CDWs to act effectively as change agents.
ethnic communities: results from a survey
of community development workers • Just over half of respondents had taken up their posts in
2008 or 2009 and thus were unlikely to have been involved
As well as the NIMHE Community Engagement Project, the
in the NIMHE Community Engagement Project, which
appointment of 500 community development workers (CDWs)
ran from 2005-2008. However, some of these were
was one of the DRE’s provisions to engage communities in
involved in working with the community organisations
planning services (sections 3.1.2, 3.1.3 and 3.1.6). The final
that participated in the project to implement their
part of this section reports on a survey conducted by the
studies’ recommendations and were able to contribute their
authors of this report in order to present CDWs’ views of the
experiences to this survey.
outcomes of this project and its effect within the communities
it targeted.
5.3.1 Rationale
At the time of writing, between one and three years have One of the building blocks of DRE was for 500 CDWs to
elapsed since the completion of the individual community be appointed (section 3.1.2). Of course, not all of these were
organisations’ studies. In order to provide a fuller picture of in post at the time the community engagement projects
the outcomes of the NIMHE Community Engagement Project were being conducted. Indeed, one of the expectations of
and its outcomes for Black and minority ethnic communities in the NIMHE Community Engagement Project was that a
the intervening years, this section explores CDWs’ experiences. proportion of the community researchers would develop
their careers as CDWs following their involvement in the
• A request (and a reminder) to complete an online survey project (six of the respondents in this survey reported that
was sent to the 419 CDWs on the National Mental Health they had come to their CDW post via this route).
Development Unit (NMHDU) database in July 2009. 140
responses were received – a response rate of 33%. This survey was therefore undertaken to ascertain CDWs’
level of involvement in the NIMHE Community Engagement
• Almost half (63) of the respondents were aware that the Project and to give an indication of progress observed since
community engagement project with UCLan had taken completion of the community organisations’ projects.
place (13 were unsure) and 42 of them said they had been
involved in working with the project in some capacity. The 5.3.2 Methods
64 CDWs who reported no awareness of the studies were The survey was conducted using the online survey tool,
screened out of the survey at this stage. SurveyMonkey. Questions were deliberately designed to be
simple and straightforward to answer. Most were closed
• Of 72 CDWs, 40% (29) had observed improvements in
questions with a list of pre-set options, although there were
mental health services for Black and minority ethnic
opportunities for respondents to add further detail (the
communities that had occurred as a result of the NIMHE
questionnaire is provided in appendix 5).
Community Engagement Project, 21% (15) were unsure
if improvements were connected to the project, and 39% A request to complete the survey was emailed to respondents
(28) said they had not observed any improvements in late July 2009, with a closing date of 25 August 2009.
connected to the project. A reminder was sent two weeks before the deadline.
• Key improvements included improved awareness and The survey was given ethical approval by the ISCRI ethics
understanding, improved community contacts and committee at UCLan.
community engagement, better services and information,
improved communication and contact with commissioners. 5.3.3 Results
The survey was emailed to the 419 CDWs on the database held
• A range of issues were felt to be relevant in bringing about by the NMHDU and 140 (33%) responses were received.
improvements via the project. The most frequently cited
were highlighting Black and minority ethnic communities’ Year of taking up CDW post
mental health service needs and raising the profile of Just over half of respondents had taken up their posts in
mental health in the communities. 2008-2009, meaning that they may not have been in post until
after the NIMHE Community Engagement Project had ended.
• 57 CDWs said they had experienced obstacles in trying to
achieve improvements, especially lack of financial resources
and lack of support from healthcare professionals. Some
responses were particularly noteworthy for the detailed
and passionate accounts of other obstacles, particularly a
perceived lack of clear strategic direction; of senior
N=120 (no response from 20 CDWs) N=28 (no response from 3 CDWs)
In which year did you take up your CDW post, working on the Which FIS site do you work in?
Delivering Race Equality in Mental Health Care agenda?
25% (7)
2005 5% (6)
25%
14.3% (4)
14.3% (4)
2006 13.3% (16)
20%
2007 27.5% (33)
2008 39.2% (47) 15%
7.1%(2)
7.1%(2)
7.1%(2)
7.1%(2)
7.1%(2)
2009 15% (18)
3.6% (1)
3.6% (1)
3.6% (1)
10%
0%
Leicestershire, northamptonshire
& Rutland
east Birmigham & the Black country
northumberland, tyne & Wear
Hampshire & isle of wight
south east London
south Yorkshire
surrey & sussex
trent
county Durham & tees Valley
Greater Manchester
other
Strategic Health Authority (SHA) Region
There was a spread of completion rates from across the
regions, with the most responses coming from the Midlands
and the North West.
20.7% (25)
25%
20%
9.9% (12)
9.1%(11)
15%
7.4% (9)
7.4% (9)
6.6% (8)
3.3% (4)
as follows:
• 40% (N=17) had played a major role in delivering a
community organisation’s project.
• 14% (N=6) had worked as a community researcher on
a project.
• 12% (N=5) had played a minor role in delivering a project.
• 10% (N=4) reported that had been a steering group member.
DRE focused implementation sites (FISs)
• 23% (N=10) said they played an ‘other’ role, comprising:
28% (31) CDWs worked within a FIS, 72% (80) did not support during data collection and/or launch of project,
and 29 did not answer the question. including feedback and analysis of data (5);
Of the 31 working in a FIS, 28 responded to the question lead researcher – co-ordinating and managing the work of
asking them which site they worked in, as shown in the the community researchers (2);
chart below.
support worker with UCLan (2); and
The proportion of the sample responding to the questions • Increased awareness and understanding was the
reported in the following sections varies. This is because improvement most often cited. While it was not always
those CDWs who were unaware of the NIMHE Community clear from the responses exactly whose increased awareness
Engagement Project (because they did not work in a was being referred to (for example, community members’,
FIS or had not been involved in their local community service users’ or commissioners’), there was a sense that it
organisations’ projects) were less likely to be in a position stretched in several directions: greater awareness of mental
to respond in detail to questions about improvements health and what it means within the community at large;
related to the project. However, some of the CDWs who greater awareness of services; and increased understanding
had taken up their posts in or after summer 2008 (when by service providers of the communities they serve.
the project ended) were involved in working with the
community organisations that participated in the project • M
ore community contacts / engagement / access to
to implement their studies’ recommendations and were dialogue and connection with key communities. There
able to contribute their experiences to this survey. was a wide range of responses within this theme. Some
were very general, such as ‘more community contacts’.
Awareness of improvements Others were very specific: for example, one respondent
Seventy-two CDWs answered this question. Of these, just from the North West noted that commissioners are working
over 60% reported that they had observed improvements, with communities to implement specific recommendations
although half of these said they felt the improvements were from the project.
not necessarily connected with the community engagement • Better services and information were also frequently
project. reported. These again included the general and the specific.
N=72 Examples of improved services included older Black
African and Black Caribbean people being offered chair
Are you aware of improvements in mental health services for yoga to improve both their physical and mental health,
Black and minority ethnic communities that have occured as and that a Black and minority ethnic counselling service
a result of any of the DRE/UCLan Mental Health Community had been established.
Engagement projects?
• The establishment of the CDW roles to work with
50% communities.
40.3% (29) 38.9% (28) • Better relationships and communications with and
40%
between service users, PCTs and commissioners, plus
reports of greater commitment of service providers to
30% meet the needs of Black and minority ethnic communities.
20.8% (15)
• Less fear of mental health services and reduced stigma
20%
of mental health issues and a climate of greater openness
on matters of mental health and wellbeing.
10%
• I ncreased confidence in services among those communities
0% that took part in the project.
How the NIMHE Community Engagement Project helped to When asked what these obstacles were, 53 respondents offered
bring about improvements their views. Lack of financial resource was the most common
answer from the list offered (65%), but was closely followed
35 CDWs answered the question on how the NIMHE by other issues taking priority (59%) and lack of support from
Community Engagement Project helped to bring about healthcare professionals (51%).
improvements. As shown in the chart below, the two
improvements considered by the vast majority of respondents N=53
to have resulted from the project were that it highlighted
What are the obstacles, from your point of view?
community needs and raised the profile of mental health
issues in the communities. 80%
64.2%
N=35 70% (34) 58.5%
(31) 54.7% 88.6%
60% (27)
How did the DRE Mental Health/UCLan Community Engagement (31)
Project help to bring about these improvements? 50% 37.7% 35.8%
40% (20) (19)
100% 88.6% 85.7% 30%
(31) (30) 20%
80% 65.7% 68.6%
(24) 10%
57.1% (23)
60% (20) 0%
37.1% Lack of financial resources
40% (13)
Other issues taking priority
20% 8.6%
(3)
Lack of support from healthcare professionals
0%
Lack of management from senior management
Highlighted community needs
• Lack of strategic direction – Several respondents We recruited two CDWs from the communities who undertook the
commented on concerns regarding strategic direction, and research and many others have gone on to CDW roles elsewhere
one CDW summed up the problem as a ‘strategic fog – a or other health related roles.
surfeit of strategies (Mental Health, Community Cohesion
etc.) without clear operational structures or commitments I hear they have been quite successful in some areas, hence they
leads to a major implementation deficit’. could be taken as examples of good practice.
• Lack of power of those passionate about the issues to Overall there are good initiatives because they involve community
really effect change. members that reinforce capacity building and engaging
community easily.
• Lack of referral pathways that reflect cultural competence.
These projects has set the way for first class services for BME
• R
esistance of services to community development communities and this needs to be established and maintained
approaches. This was summed up by one respondent as nationally and reported for visibility of service.
‘allowing too much emphasis on CDWs as the method by
which services will be transformed – when in fact NHS Even though I have not observed any direct improvement, the
systems are peculiarly resistant to community development community engagement project reports did give me inspiration
approaches – successful change within the NHS requires and tools for working towards improving mental health services
a different model to be used’. for BME communities in my particular area. I shared the reports
at our BME Mental Health Forum and findings did inform those
• Lack of measurable outcomes at the outset for DRE managers with little or no knowledge of mental health needs in
(now evidenced by the DRE Dashboard – http://www. BME communities. However, it is too soon to observe any tangible
mentalhealthequalities.org.uk/our-work/delivering- improvements.
race-equality/dashboard/). One CDW commented that
the delay in the development of the DRE Dashboard had UCLan need to continue to be involved with the projects after
‘allow[ed] recalcitrant Trust types to bemoan the lack of research is completed in order to support the conversations with
measurable outcomes measures – thus allowing the agenda commissioners and help the community groups and/or CDW
to be sidelined in favour of things that could be measured’. teams through the implementation stages. UCLan would also do
well to ensure that engagement with senior management in the
• T
ime-limited DRE agenda. There was concern at the short- NHS organisations is a priority. BME organisations have tended
term nature of the DRE and the limitations this places on the to be left to struggle on their own, usually with minimum success,
scope for improvement, expressed by one CDW as to engage senior managers in the local context.
‘abandoning DRE to its fate – there should have been DRE2,
allowing for another 5 years building on the slow won They were too academic – they needed to be more practice based.
change. We’re now fighting for Race and Ethnicity to be seen Too intellectualised, “Ivory tower” attitude of UCLan, felt like an
as important amongst the other single equality strands’. exercise rather than a “real” reflection of experiences.
• Legal complexities and disputed statistics at national The structure of the different stages of the UCLan research was
and local levels. not very clear until towards the end.
Additional comments While it was a brilliant idea, there was not commitment on NHS
Respondents were invited to add any comments that had not been to take community engagement forward. Another tick box exercise.
addressed in the questionnaire. There were 26 responses and these
were so varied that an analysis of key themes is not possible. The community engagement project was very useful, but need to
push forward.
Comments are listed below and are quoted verbatim. Some points,
however, reiterated those made elsewhere in this survey report, or I think the benefits from the engagements and the contributions
discussed matters beyond the parameters of the survey, and are from participants need more than just words in a report.
therefore not reproduced. Some CDWs reported positive If people only see short term moves and do not experience an
experiences of the NIMHE Community Engagement Project, increase in sustainable respectful relationships, this agenda will
while others suggested areas for improvement. have failed to leave a lasting improvement on an arrogant
Eurocentric approach to Wellbeing. Realistically this approach
I have seen copies of the Community Engagement Projects. They has to counter unwitting and hidden racism within the fabric of
are very detailed and I always refer to them when I need to engage service delivery across all uninformed departments and their staff
with Community groups. within government both national and local.
The projects were very worthwhile. They helped CDWs to
look directly at community concerns and pick up on the main
issues, however CDWs have been limited financially in trying to
meet the needs identified.
Given the potential for DRE to be caught between the Values-Based Practice
differential interpretations of its various stakeholders, (Woodbridge and Fulford, 2005)
fundamentally its successes and failures are a function of Values are at the heart of the project:
prioritisation and leadership at ministerial level. Leadership
was certainly present following years of campaigning about “The current situation is unacceptable and unsustainable since
the inadequacies of mental health services, brought to a head it contradicts the basic value of equity that is the cornerstone of
by the death of David (Rocky) Bennett, all of which led to the the NHS. It is no good us pretending to have these values and
creation of DRE. Though unfortunate that such leadership fell failing to recognise them, we need to change to live up to them”.
short in maintaining the consistency and integrity throughout (John Reid, Secretary of State for Health, 2003 p.4).
its implementation, DRE has laid down a foundation both in
The process of Values-Based Practice (VBP) is an ideal means
terms of community-based engagement projects and increased
to support the aim of the community development workers to
capacity of local service developers and providers, to make
capture and disseminate best practice in relation to DRE.
provision culturally competent. The task going forward will be
to incorporate such approaches into strategies such as New VBP facilitates:
Horizons[1], World Class Commissioning[2], professional
training and development, indeed all initiatives and strategies – the inclusion of diverse perspectives
that have a bearing on Black and minority ethnic mental – all those involved having a voice and being heard
wellbeing. DRE was the first step. The question now is ‘where
to from here?’ – building relationships based on the development of trust
and understanding
New Horizons – Towards a shared vision for mental health
[1]
First Key: Active Participation of the Service Second Key: A Multidisciplinary Approach
User and Carer • A multidisciplinary approach is as important in assessment
• It is well recognized that service users and carers should be as it is in treatment. Different service providers, from both
actively involved in how their problems are treated so that voluntary and statutory sectors, bring different perspectives
they can work together in a shared process with practitioners and skills sets to the process of assessment that can help to
to develop independence and self-management skills. identify and highlight an individual’s strengths as well as
difficulties.
• The kind of support a service user receives from services
depends critically on how they are understood. Therefore, • CDWs have a distinctive role to play within the
the Shared Approach aims to extend active service users’ multidisciplinary team in empowering service users and
involvement from how a person is treated to how their carers, particularly from ethnic and other minority
problems are understood in the first place. backgrounds. In the consultation that led to the Three Keys
document unequal power relationships were identified as
• Assessment is the gateway to care and treatment. one of the main barriers to a shared approach in assessment.
A successful Shared Approach in assessment will lead
to improved and more appropriate care planning. Example: An expanded model of the multidisciplinary team
– non-mental health services – voluntary sector
• CDWs have a key role to play in improving mutual Sharing Voices, Bradford, as a voluntary sector organization,
understanding and communication with people from ethnic work closely with local statutory services to provide a fully
and other minority backgrounds as an essential contribution joined-up approach for people from minority ethnic groups.
to active participation in assessment. Sometimes CDWs
may share a similar background with the service user or One of their recent projects is an innovative ‘In Reach’
carer concerned. Many also have particularly rich networks partnership between Sharing Voices and Bradford’s District
of contacts within local communities and hence can help to Lynnfield Mount Hospital set up to support people from
identify people who may act as supporters and interpreters Black and minority ethnic communities entering mental health
for the service user or carer concerned. acute wards for the first time. The project, which is facilitated
by the local FIS (Focus Implementation Site for the DRE
Example: Participation and minority groups – programme), aims to meet the objectives of the DRE programme
Simon’s Spirals to reduce fear and to develop services that are responsive to the
Sharing Voices, a voluntary sector organization in Bradford, needs of Black and minority ethnic communities. The project
has been particularly active in developing approaches that employs a multi-disciplinary approach with the aim of ensuring
allow people from minority groups to feel safe and included that culture, faith, spirituality and family issues are taken into
as a basis for understanding their mental health needs. account in assessment and care planning.
They have recently begun working with young people in Ward staff at Lynnfield Mount Hospital refer people admitted
schools using a multi-agency approach that involves school to the hospital for the first time to In Reach, and CDWs from
nurses, inclusion managers from the schools, a CDW from In Reach then visit the wards to engage people using skills and
Sharing Voices and other professionals, such as educational processes developed from their work within the community.
psychologists, learning mentors and youth workers who are Sharing Voices is also the only voluntary sector organization
brought in when their expertise is needed. in Bradford that can make referrals direct to mental
health service. This two-way process thus allows the skills
The aim of the work is to enable young people experiencing
and expertise of In Reach to interact with the different
distress to gain support at an early stage and to facilitate access
but complementary skills and expertise of the ward team. Key
routes into services if needed, particularly Child and Adolescent
features of the interaction are to build confidence and to reduce
Mental Health Services (CAMHS). Effective assessment of
fear through improved mutual understanding in the assessment
young peoples’ needs and strengths is therefore critical.
process and to provide links to the community and other
Simon Hendy, a Youth Worker at Sharing Voices, has developed resources once people have been discharged.
an approach to assessment based on a set of circles that allows a
A young student from Iraq had completed his degree and his
young person to define their own needs and what is important to
student visa had expired. Normally, he would have returned
them and how they would like support around issues that
home but with the political situation in Iraq at the time
are affecting their lives.
deteriorating, he became completely withdrawn and depressed
and he ended up being admitted under the Mental Health Act
to Lynnfield Mount Hospital. A referral was received from the
ward staff and a CDW with the In Reach project, who was
from the same cultural group as the student, went to visit him.
When he arrived on the ward, the staff were anxious because Example: Aspirations and non-professionally
the student had already attacked a nurse: ‘be careful of him’, aligned workers
they warned, ‘he may attack you as he attacked one of the One of the keys to bringing aspirations into the process of
nurses’. However, when the CDW was able to greet the student assessment is to recognize that they may be quite low key and
with the embrace that is traditional to their culture, instead of practical – “just to be able to go for a walk in the park”, as one
attacking him he immediately calmed down and started to service user put it. It is these practical day-to-day activities that
explain why he had been so upset when he was admitted to the non-professionally aligned workers, such as CDWs and
ward. The problem was, he said, that he felt that he was not support, time and recovery (STR) workers, are already
being listened to – he wanted to stay in his room and pray; and involved with.
he did not want to take medication but wanted to talk to
someone instead. Jenny Correia, an STR worker with the Crisis Intervention and
Home Treatment Team at Chase Farm Hospital in north
The result of this initial contact was that the ward team were London, pointed out that there is no obvious place on the care
able to understand the student’s problems in a completely programme approach (CPA) form to include these ‘aspirations
different way and this led on to a care plan that built on the of ordinary life’. This meant that many of the things that really
resources of his own culture. The CDW arranged a visit to a mattered to her clients, and that she could help them bring to
local Arab mosque where they knew the young man because a full understanding of their situation, often were overlooked
he had attended it in the past. It was agreed that the Imam by the team as a whole in the assessment process.
would visit him on the ward and also try to get in touch with
his parents in Iraq. This was successful and the result was that As a result of this observation, the team has now begun a small
his father travelled to the UK and supported his son. He is now trial with an amended version of their own assessment form to
back in Iraq with his family and is doing well. build on this important aspect of the Shared Approach.
Phase 2: Implementation and Intervention • Identified examples of good practice. Evidence of local
• To develop, with the “Champions”, interventions that align services that are able to demonstrate effective change in
the shared vision/three keys, in particular the strengths practice.
element and community engagement (through CDWs)
approaches with the health and social care assessment • Redesign of present working practices. Introduce
process when detention under mental health legislation is methodologies to support provider organisations to address
being considered. needs of BME communities.
• To help “Champions” to identify requirements for training The continued fear of services from many BME communities
and development in supporting change in practice for and the considerable overrepresentation of young black men
organisations. being detained under the Mental Health Act remain a major
challenge in the delivery of mental health and social care
• To support organisations to initiate training for staff to services. There is evidence that CDWs have a key role to play
develop competencies which support the project aims. in meeting these challenges.
• To establish effective dialogue with key stakeholders to The New Horizons – Towards a shared vision for mental
[1]
help ensure that they understand the key issues. health consultation document (http://www.nmhdu.org.uk/
news/new-horizons-towards-a-shared-vision-for-mental-
• To develop an evaluation tool for assessing the effectiveness health/) includes the aims of personalised services and
of the project. equality (p.4):
The project is working with 18 Champions to meet the Personalised services
objectives of Phase 2, to be completed by March 2010. People with mental health problems, and those at risk, will
receive personalised care packages designed to meet their
Phase 3: Evaluation and Dissemination
individual needs. They will be able to make decisions about
• To use the evaluation results to disseminate examples of
their care, treatment and goals for recovery, as well as to
good practice based on the key characteristics of a culturally
monitor their own condition.
sensitive service.
Equality
• To use the training materials and approaches developed in
In 2020 all individuals will be treated with respect in an
stage 2 to roll out the training to all CDWs nationally.
inclusive society, whatever their age, background or
• To prepare a detailed project report to disseminate the circumstances. Public services will recognise the importance
information to all key stakeholders. of environments, services and amenities that maximise
independence and opportunities for older people to participate
Conclusion and contribute as equal, active citizens.
We believe this project will produce:
Services will be attuned to the needs and wishes of individuals
• Identified standards of practice to meet the needs of and communities and will actively promote equality.
BME communities in terms of the impact of mental health Inequalities for black and minority ethnic groups in access to
legislation. The project will provide the Department of and experience of mental health care will have disappeared.
Health, mainstream mental health and social care workforce
programmes and other key stakeholders with advice The consultation document also describes Three Keys to a
regarding the key practice issues for delivering effective Shared Approach as an example of an approach to assessment
services for service users from diverse communities who that supports recovery and the development of self-
are detained, or likely to be detained, under the Mental management skills (p. 63).
Health Act.
This section presents the community organisations’ detailed One example was counselling services offered by Jewish
recommendations, based on their findings, of what the next community members in a locality with a high proportion of
steps should be to reach the DRE aims of achieving equality Jewish residents. Although the types of services referred to by
and tackling discrimination in mental health services in the study reports differed, they are broadly linked to talking
England. They are presented in the order in which the results therapies and interventions of a non-medicinal nature (although
appear in this report in sections 4.1-4.6 although, as shown in some reports on the Chinese communities, ‘community-
throughout the report, the results, and therefore the based services’ also included treatment with Chinese herbal
recommendations, are highly interrelated. medicine).
Delivering race equality [DRE] in mental health care Community-based mental health services were felt to be
(Department of Health 2005a) covered 2005-2010 and the preferable to mainstream services, as they would have
NIMHE Community Engagement Project ran from 2005- knowledge of, and be sensitive to the culture and concerns of
2008. Therefore, some of the following recommendations local populations. It was argued that that there would be less
were made as DRE began and may have been addressed or are fear attached to using community-based services, although
currently under consideration. Nevertheless, they indicate the there were some concerns surrounding confidentiality if
issues significant at community level, and what the community services were locally based and staffed by local people.
organisations see as essential for DRE to achieve its aims.
• Service user roles
A greater role for service users was recommended to help
6.1 Fear of mental health services tackle the issues of fear surrounding mental health services
and the stigma of mental health problems. It was stressed
Section 4.1 revealed the complex nature of the fear of mental that service users should have input into planning services,
health services and the study reports did not offer any ‘quick advocacy services and mental health training for new and
fix’ recommendations. Rather, a variety of measures aiming to existing professionals, and be encouraged to set up self-
work gradually towards lessening fear were suggested. help and peer support groups.
• Education • Support groups
Education to increase awareness of mental health Some study reports recommended the establishment of
conditions and reduce the stigma attached to them was culturally sensitive support groups on issues such as stigma
recommended by many of the community organisations. and the consequences of denial of mental health problems.
There were calls for high-profile awareness campaigns and This, they argued, would help to reduce the fear of mental
work with families and faith and religious groups to health problems and mental health services in their
achieve these aims. The majority of the study reports communities.
stressed that educational material should be made available
in a variety of media, in the relevant locally used languages • Partnerships
and in written, oral and visual formats. Tackling fear issues in partnership with existing
organisations was seen as the way forward by some
• Terminology community organisations. For example, partnership work
The word ‘mental’ and its negative connotations were with the Alzheimer’s Society was recommended by a study
commented upon by many study participants, especially of elderly Chinese people, in order to utilise the society’s
young people. Indeed, when asked what the term ‘mental expertise and skills to challenge ignorance and stigma
health’ meant to them, many participants responded by about dementia within the community. It was considered
listing only mental health problems. Some young people that such joined-up work could lead to a reduction
felt that the word ‘mental’ was in itself prejudiced and in fear about mental health services among Chinese
outdated. There was therefore a call for a more acceptable communities.
designation for mental health services.
• Community-based services
Many reports identified the existence of, and need for what
they described as ‘community-based services’. While this
term did not have a universal definition, it was used to
describe services that are offered in a particular locality,
and usually staffed and run by members of a specific Black
and minority ethnic community.
6.2 Effective therapies and interventions The community organisations therefore recommended that
they were funded and/or commissioned to provide one or
Section 4.2 showed that study participants and the community more of a range of such services, not only for those with
organisations strongly criticised what was reported as an existing mental health problems but also to prevent others
unbalanced approach to treatment, with an over-reliance on developing them. These services included social
medication and too little choice of alternatives. The community gatherings; outings; entertainment such as drama, dance
organisations’ recommendations on a balanced range of and cinema; discussion groups; self-help groups;
effective, culturally appropriate treatments therefore befriending; mentoring; drop-ins; the provision of food,
concentrated on increasing mental health service users’ access such as lunch clubs; gardening; classes, including art,
to talking therapies, complementary therapies and, particularly, pottery, cooking, sewing, music, sport, English, literacy
social interaction and participation in activities. These were and computer skills; and practical support such as helping
perceived by mental health service users as effective additions with access to education and employment.
to their treatment and by other community members (including
ex-service users) as maintaining their mental wellbeing. Two of the study reports added that, in order to inform
future service development, such services should be
• Choice and combination of treatment evaluated by their users and the outcomes for those with
Overall, the community organisations’ recommendations mental health problems monitored.
centred around mental health service users having a choice
from a range of treatment options that included talking • Increased access to talking therapies
therapies, complementary therapies, social interaction, and Thirteen study reports recommended that opportunities for
leisure, educational and occupational activities. The aim, talking therapies should be increased, invariably adding
as one study report emphasised, was to create: that, to be effective, these must be culturally, spiritually
and linguistically appropriate.
– Care packages designed to meet the unique needs of the
individual offering a range of treatments and support, One community organisation added that talking therapies
which are socially, culturally and spiritually acceptable. should include those based in the community (including at
GP surgeries) and another that long-term funding should be
Medication was very rarely positively mentioned in this available for counselling services for young people.
context: the recommendations concentrated on, as a study Another study stressed that this type of support particularly
report put it, ‘methods other than medication to help needed strengthening for Black African, Black British and
service users feel better’. Black Caribbean men who, as shown in section 4.8, were
• Community-based social interaction and activities proportionally more likely than other ethnic groups to be
The most common recommendation (by around one-third sectioned under the Mental Health Act 1983 and reported
of the community organisations) concerning effective that they were treated only with medication to ‘control’
treatment was the provision of opportunities for social them (section 4.2.1).
interaction and participation in activities. It was strongly • Increased access to complementary therapies
argued that these would maximise the effectiveness of Eight study reports, covering a range of ethnicities,
mental health service users’ prescribed treatment and recommended that there should be increased access to
maintain the mental wellbeing of other community complementary or so-called ‘alternative’ therapies. Several
members. added that these should be incorporated into mainstream
The community organisations variously described social mental health services as standard treatments and that their
interaction and participation in activities as ‘mental health effectiveness should be researched.
support’, ‘peer support’ and ‘self-help’. However, the The complementary therapies variously requested by the
benefits to mental health accrued regardless of the label and study reports were traditional Chinese medicine,
whether they were acquired formally, as part of treatment, or acupuncture, massage, art and music therapies,
informally. The study reports’ recommendations stressed aromatherapy, yoga, Reiki, Ayurveda, horticultural therapy
that such services should be community-based, in community and reflexology.
centres (or, it was suggested by a few study reports, in
religious institutions), because:
–
Many people identified the community as a potential
source of support across a range of needs, not least
social, educational and recreational opportunities as
well as care/support needs. It is well established that
positive interaction and activity leads to increased
mental wellbeing.
Study reports recognised that both service providers and It was also recommended that examples of good practice in
religious organisations need to increase their knowledge of this respect should be widely disseminated throughout
the other’s work. Across the ethnicities, a frequently mental health services.
recommended key component of such partnership work
was the training of religious leaders in matters of mental
6.3.3 Food
The issue of food is discussed in section 4.3.3. It was recognised
health, to raise their awareness and to encourage debate in
by a minority of study participants that the provision of
the community. For example:
culturally appropriate food may not be straightforward. For
–
Establish and provide culturally sensitive educational example, six focus group participants from five different ethnic
training seminars on issues of mental health and stigma groups were aware of the difficulties in providing for a variety
for rabbis, plus a discussion group to unpick confusion of dietary needs, concluding:
between cultural beliefs vs religious beliefs regarding
mental health. – Come on, let’s not get carried away. We can’t give
everybody different food... What we should do is serve
– Faith based organisations and faith based practitioners healthy food, you know. Food that our experts, doctors,
ie pastors, needs to be trained and supported to would prescribe. Not food from all over the world.
effectively deliver mental health support and guidance You’re not here [hospital] to live all your life. You’re
to Black African and Caribbean communities. here just to get better, so you should get healthy food.
• Gender-specific workers The study report complained that this was despite
Eight study reports – again, particularly those concerned with consultation with them where they had presented
Muslims and Orthodox Jews – recommended that mental evidence from their study to show lack of women-only
health service users should be treated by a professional services was a barrier to some women accessing
(including GPs) of the same gender as themselves, or at least services. The study report commented that ‘male CDWs
be given a choice. In addition, one community organisation compromise service equality for a significant proportion
stressed that this option should be widely promoted, as the of Black and minority ethnic women’.
fear or experience of being treated by someone of the opposite
– A CDW to address the mental health service needs of
gender was a barrier to help-seeking.
asylum-seeking women and their children.
One study reported recommended an audit of the gender of – An outreach worker to target Irish women with mental
current mental health service professionals, in order to health service needs.
identify where the gender balance between patients and
professionals needed correcting. One study report recommended that there should be female
and male ambassadors, to ‘bridge the gap between mental
• Improve women’s knowledge of mental health services health services and South Asian elders’.
It was shown in section 4.3.4 that the stigma not only of
having a mental health problem but also of not coping with Three reports recommended that alimas and alims (female
their role in the family were barriers to some women’s and male Muslim scholars) should be employed to work
access to mental health services. In order to begin to with mental health services, ‘to contextualise key Islamic
address this and to ensure that Black and minority ethnic principles and offer guidance and advice on mental health’
women are, as one of the study reports put it, ‘clear and to Muslims. The rationale for this was that these scholars
confident about services’, five community organisations were trusted and that alimas were especially needed for
recommended that action was taken to give them those Muslim women who felt they could talk about their
information about mental health services. mental health problems only to another woman.
It was variously recommended that this information should Another study report also stressed the benefits of the
include the range of treatment options available, that involvement of religious workers in mental health issues. It
women could talk to their GP about mental health issues, recommended that those in churches attended by Irish
and that the confidentiality of mental health services was women should be educated in mental health issues and
assured. A wide variety of venues for transmitting the services, so that they can influence the way Irish women
information were suggested, including in public toilets, at deal with mental health problems and offer support.
a women’s day event and at social venues attended by
women. • Training for mental health service professionals
Several study reports recommended mental health services
• Provision of childcare at mental health services train staff on a variety of issues surrounding gender:
Several study reports recommended that mental health – Three studies focused on domestic violence and stressed
services provided childcare facilities for female patients that this was a ‘core mental health issue’. They
with small children, so that they could attend appointments recommended that healthcare staff should be trained in
more easily. recognising the needs of women who were experiencing
• Creation of new posts domestic violence, including that they may present with
Six study reports recommended that new posts should be other symptoms but not reveal this to their GPs. They
created to address the mental health service needs of local stressed that treatment should not therefore consist only
Black and minority ethnic women: of medication.
– Mental health service staff should be trained in how to
– A ‘women’s issues’ post on a local primary care trust’s
access those women who are vulnerable to mental
community development team.
illness, so that can be referred to services as early as
– Counsellors who are especially trained to understand and possible.
deal with the cultural issues affecting their female South
– Mental health service staff should be trained to consider
Asian clients.
the effect of the asylum-seeking process on mental
– Counsellors and outreach workers working from a local health.
women’s centre to deliver mental health services to
females.
– A female community development worker (CDW) in an
area where the PCT had appointed only male CDWs.
• C
ommunity member and service user involvement • Increase volunteering among Black and minority
in services ethnic populations
Several of the study reports stressed that the involvement Several study reports recommended a volunteer programme
of Black and minority ethnic community members and for members of Black and minority ethnic populations,
service users in planning, commissioning and delivering which would facilitate them obtaining employment and
mental health services would enhance these services’ following careers in mental health services.
cultural competence in terms of gender requirements.
• Organisational representation
• Further research A study among Orthodox Jews recommended that there
The issues raised in section 4.3.4 generated was a member of this community on the local Patient
recommendations for further research on: Advice and Liaison Service (PALS):
– the mental health needs of young Black Caribbean males – Such an appointment would go a long way towards
who are vulnerable to suicide, so that early interventions dispelling misunderstandings and difficulties that often
can be offered; emerge during the rather torturous and stressful mental
health assessment and hospitalisation process and help
–
women with mental health problems who also
create a climate of engagement between the Mental
experience domestic violence and other abuse;
Health Trusts and the Orthodox Jewish community.
–
the effect of mothers’ poor mental health on their
children and families, because, as one study report put
Other recommendations concerning organisational
it, ‘A happy mum means happy children – children tend representation by Black and minority people included
to be more confident if they have a strong and confident membership of relevant local NHS and primary care trust
mum because children feed off the vibes a mum gives, so forums, and of panels concerned with detention under the
if mum is suffering a mental illness, then the family is Mental Health Act 1983.
suffering too’; and
• B
lack and minority ethnic advocates,
– a longitudinal study of women’s experiences in mental ambassadors and champions
health services, to demonstrate pathways to recovery. Each of the following were recommended by several
studies:
6.3.5 Ethnicity of mental health service staff
Issues surrounding the ethnicity of mental health service staff –
more Black and minority ethnic advocates to assist
were discussed in section 4.3.5 and 42 of the 79 study reports access to mental health services, particularly (but not
made the following recommendations concerning this matter. exclusively) by asylum seekers, refugees and migrant
workers;
• Increase the numbers of Black and minority ethnic staff
– more Black and minority ethnic ambassadors to act as
Almost all the study reports that discussed the issue of the
bridges between service users and providers; and
ethnicity of mental health service staff recommended
increasing the number of Black and minority ethnic staff –
more community champions to increase Black and
via appropriate training opportunities and proactive minority ethnic communities’ knowledge of mental
recruitment. Ultimately, it was argued, services (including health and the related services.
information services) would then better reflect the
populations they serve and meet their cultural, religious 6.3.6 Racism in mental health services
and linguistic needs. Section 4.3.6 discussed perceptions and experiences of racism
in mental health services. All the community organisations’
• Involvement in staff training recommendations in section 6 address aspects of this issue.
Several study reports recommended that members of Black
and minority ethnic communities, including mental health
service users, should be closely involved in planning and
delivering cultural competency training for mental health
service staff.
6.4 The journey towards recovery 6.5 Service user and carer satisfaction with
The recommendations from the eight studies that discussed mental health services
recovery (section 4.4) echo those in other study reports in Section 4.5 revealed the complexities of the factors resulting in
terms of increased service user involvement in planning, satisfaction and dissatisfaction with mental health services and how
commissioning and providing mental health services (section these relate to issues discussed throughout this report. Indeed, all the
6.6) and improvements to services’ cultural competence community organisations’ recommendations in section 6 would, if
(section 6.3). implemented, increase satisfaction with services.
North West cont Partners of Prisoners (POPS) and Families Support Group
Saheli Asian Women’s Project
Wai Yin Chinese Women’s Centre
South Central 6 Bangladeshi Welfare Association and Culture Works
The Forest Bus Mobile Project
Maytree Nursery and Infant School parent support staff
North Hampshire Caribbean and African Network
Portsmouth Race Equality Network Organisation (PRENO)
The Wiltshire Trust
South East Coast 3 Brunswick Community Development Project (BCDP)
Rethink Sahayak Services
Shifa
South West 8 Amana Educational Trust and Transparency Research Partners
Devon and Cornwall Refugee Support Council (DCRSC) and Plymouth
Teaching Primary Care Trust (2 studies)
Dorset Mind
Hikmat BME Elders Centre
Penwith Community Development Trust
Rethink West Dorset Services
Somerset Racial Equality Council
West Midlands 11 African Caribbean Community Initiative (ACCI) and Nyela
Age Concern
Aston Christian Centre
Black Country Holistic Approach
BME Housing Consortium/RAMA (Asian men’s support group)
Éirim Mná, Midland Heart/Focus Futures, Birmingham Future Health
and Social Care Association
Irish Welfare and Information Centre
My Time New Communities Team
Rethink Birmingham
Smethwick Bangladeshi Youth Forum
Yorkshire and 7 Barnsley Black and Ethnic Minority Initiative (BBEMI) (2 studies)
the Humber
Khidmat Centres
Rotherham Yemeni Community Association
Sahara Spotlight Group, Sahara Women’s Group
Sharing Voices
YWCA Doncaster Women’s Centre
The NIMHE Community Engagement Project 5. You must at all times conduct your work in line with good
practice and research ethics. This will be covered during
Community organisations participating in the programme the workshops and training (see 6, below). This will mean
will be required to undertake a piece of research to highlight having due regard for the safety and wellbeing of all who
the mental health service needs of their own community and it are involved in the project, whether as researchers or
is important that this piece of work should take place within respondents, and ensuring that no-one is put at risk of
the context of DRE. However, in undertaking the work and harm. The university may require you to amend or stop
preparing a report it is crucial that the work is carried out in your work programme if it is felt that you are proposing to
line with the ethos of community engagement, thus ensuring do something that is unethical or that carries an unacceptable
that the capacity-building elements of the programme are met. level of risk.
The process by which the work is done (i.e. engaging people
from communities that ordinarily do not have a voice) is as 6. It is a requirement of the programme that those people
important as the final product (the report) that is produced. who are recruited to do the work are able to attend the
workshops and training that are provided by University of
At the end of the project, and in addition to the final report, Central Lancashire (UCLan) to ensure that the work is
we would like to see the following outcomes achieved: carried out to a satisfactory standard. This means that they
– A number of people who ordinarily would not have will be required to commit to attending 6 one-day
been able to have a voice around their needs will have workshops over the lifetime of this project. Those who
been involved in the project as workers and volunteers attend the training will be able to enrol for a university
and will have had the opportunity to undertake the qualification if they wish.
training that is provided as part of the programme.
7. A community engagement project support worker from the
– New partnerships will have been made between the Centre for Ethnicity and Health will visit you on a
community organisations taking part in the programme fortnightly basis. Your project support worker will be
and local strategic bodies such as representatives of confirmed prior to you commencing the project and their
local focused implementation site teams, primary care contact details provided.
trusts, etc.
8. It is the support worker’s role to assist and support you
–
New and innovative ideas about how to go about to deliver this project by offering advice and guidance
delivering some of the outcomes envisaged in DRE about research methods; the target group for your research;
will have been articulated and discussed. data analysis; report writing; budgetary allocation; pulling
There are a number of key criteria that we will require of all together a steering group for the project; and maintaining
selected projects: links with your local stakeholders. They will also provide
academic advice to any members of your project team who
1. That your project retains a tight focus around research and enrol for the university qualification.
the issues relating to mental health among Black and
minority ethnic communities. You will not be funded to During the first two or three meetings with their support
set up a new service. worker, the project team will be required to draft up a plan
for the project. This must detail what you intend to do;
2.
That you recruit between three and six local people how you intend to do it; who you will get to do the work;
from the target community to undertake the work. These what work you will do; where you will undertake the work;
people should be paid wherever possible (e.g. except where who you will undertake the work with; how those working
payment may affect a participants’ entitlement to receive on the project will be supervised; how you will ensure that
state benefits and would leave them financially worse off). participants in the project have given consent; how you
The budget for your project should reflect this. will ensure participants’ confidentiality; how you will store
and handle any data collected as part of the project; and
3. You must not allocate more than 25% of the total funding that how you will identify and manage any risks. Support
we give you to central costs and overheads (including workers are required to submit these plans to an internal
management and administration, rent, heat, capital equipment, ethics committee at the university. As stated in 5, above,
etc). Total funding will not exceed £20,000. the university reserves the right, after consulting the
NIMHE programme director, to require you to stop or
4. The community members you recruit to do the work should
amend any work plan if it feels that what you are doing or
be aged 17 or over.
are proposing to do is unethical.
11.
Steering groups need to develop the mechanism for
harnessing the skills and energies of your research team
members as they are developed, such as how they could be
helped to take the next step. Community organisations and
statutory services may wish to engage Learning and Skills
Councils to find ways in which they can sustain the skills
and knowledge acquired by your research team members
during the process of working on the project.
12.
Projects need to clearly specify their management
arrangements.
13. The total sum allocated to your project will be divided and
paid in three instalments. The second and third payments
will be made to you upon receipt of a completed financial
monitoring form showing expenditure to date together
with a project report indicating key project activities.
c [asked in third phase only] Does it relate to one of the While we would generally expect that you will shortlist the
priority areas (older people, children, Irish communities, proposals that score more highly, this may not always be the
Eastern European communities, men)? case. For example, a project may have scored highly overall,
but zero in one or more sections that you think are critical (e.g.
If so which? it is not supported by a FIS or the organisation’s community
links are very weak). In these circumstances, you might not
want to shortlist it despite it having a high overall score. If you
shortlist such a project, please list below any particular issues
you want to discuss further at the interview before making a
final decision.
African Caribbean Community Alicia Spence The mental health service needs of
Initiative (ACCI)/Nyela, 217 Waterloo Terrace, African and Caribbean women
Wolverhampton Newhampton Road East,
Whitmore Reans,
Wolverhampton WV1 4BA
Tel: 01902 571230
support@acci.org.uk
www.acci.org.uk
Amana Educational Trust Sue Topalian The mental health needs of Somali
and Transparency Research Bristol CAMHS and Joint 11 to 18 year olds in Bristol
Partners, Bristol Commissioning Development Officer,
PO Box 57, Room 361,
The Council House, College Green,
Bristol BS99 7EB
Tel: 0117 9037937
sue.topalian@bristol.gov.uk
Aston Christian Centre, Birmingham The Vine Project, The needs of African Caribbean people
Aston Christian Centre, between the ages of 18-65 that live in
3 Trinity Road, 1st Floor, the Aston and surrounding areas of
Birchfield Neighbourhood Office, Birmingham with regard to their
Birmingham B6 6AH mental health and talking therapy
Asylum Link Merseyside (ALM), Breege McDaid Inequalities and cultural needs in
Merseyside Chinese Community 60 Duke Street, Liverpool L1 5AA mental health service provision for
Development Association (MCCDA) Tel: 0151 7074302 Black and minority ethnic communities
and Irish Community Care breege.mcdaid@iccm.org.uk in Liverpool
Merseyside (ICCM)
AWAAZ – Asian Mental Health Angela Kandola Access to mental health secondary
Research Unit, Nottingham 198 Mansfield Road, care services for South Asians
Nottingham NG1 3HX in Nottinghamshire
Tel: 0115 924 5555
angela.kandola@awaaznottingham.org.uk
angela.kandola@btconnect.com
Barnsley Black and Ethnic Sharon Smith Two studies: Whether existing mental
Minority Initiative (BBEMI) BBEMI, 4 Burleigh Court, health services in Barnsley are
(now Barnsley Gypsy Barnsley S71 1XY appropriate and responsive to the
Traveller Project) Tel: 01226 284477 needs of refugees and asylum seekers
sharon@bbemi.org.uk and migrant workers
Whether mental health services are
appropriate and responsive to the needs
of the Gypsy and Traveller
communities of South Yorkshire
Bedford African & Carl Bernard The after-care services in Mid and
Caribbean Forum Swan House, 2nd Floor, North Bedfordshire for male/female
3-5 High Street users with mental health service issues
Bedford MK40 1RN aged between 18-35 from the African/
Tel: 01234 340600 / 01234 348127 Caribbean community
bac@forum.fsbusiness.co.uk
Big Life Services, Liverpool Faren-Ebi Pumude Why Black and Muslim women
Big Life Services, 124 Duke Street, in Liverpool do not access mental
Liverpool, Merseyside. health services and also to find out
Tel: 0151 709 7030 what services are available and how
faranebi.pumude@thebiglifecompany.com accessible information was to obtain
and
Christine Holland and Neil Turton,
Big Life Services, Kuumba Imania
Millenium Centre, 4 princes Road,
Liverpool L8 1TH
Bolton Association and Network of Rita Liddell Two studies: Barriers affecting those
Drop Ins (BAND) The Bolton Hub, Bold Street, aged 50+ from the South Asian
Bolton BL1 1LS community when accessing mental
health services and whether socio-
Tel: 01204 546070
economic factors impact on their
admin@band.org.uk
mental health
Issues and barriers faced by the Black
and minority ethnic communities in
accessing mental health services and
their experiences once they access
mental health services in Bolton
The Old Market, Upper Market Street, Access to mental health services and
Brunswick Community Development Hove BN3 1AS treatment for the Arabic speaking
Project (BCDP), Brighton and Hove communities in Brighton and Hove and
whether they are culturally appropriate
Derby Millennium Network (DMN) Angela Simpson The experiences of 18+ Black and
Health and Well Being Centre, South Asian service users and carers
5 Peartree Road, Derby DE23 6PZ in the Derby city area
Tel: 01332 250720
hascpo@derbymilleniumnetwork.co.uk
dmn@derbymilleniumnetwork.co.uk
Derbyshire Gypsy Liaison Group Siobhan Spencer ‘I know when it’s raining’:
(DGLG), East Midlands Region Office 3, Ernest Bailey Community the emotional health and well-being
Centre, New Street, Matlock, needs of Romany Gypsies and
Derby DE4 3FE Irish Travellers
Tel: 01629 583300
info@dglg.org
Derman for the Well-being of Algin Saydar Voice of men: mental health needs
the Turkish and Kurdish Derman Head Office, The Basement, assessment of Turkish/Kurdish and
Communities, London 66 New North Road, London N1 6TG Cypriot/Turkish men in Hackney
Tel: 0207 6135944
services@derman.org.uk
Dignity Mental Health Service, Trevor Adams The role faith communities can play in
Luton 27 Axe Close, Luton LU1 1SA the mental health service needs of the
Tel: 01552 651011 African Caribbean community in Luton
admin.frcc@btconnect.com
Devon and Cornwall Refugee Lyn Nightingale Two studies: The experiences of
Support Council (DCRSC) and NHS Plymouth, Plymouth Primary asylum seeking and refugee women,
Plymouth Teaching Primary Care Trust, Building One, Brest Road, children and young people living in
Care Trust Plymouth PL6 5QZ Plymouth
www.plymouthpct.nhs.uk ‘A normal reaction to an abnormal
situation’: the mental health of lone
male refugees and of those seeking
asylum in Plymouth
Éirim Mná, Midland Heart/Focus Tony Merry The mental health needs of Irish
Futures, Birmingham St Eugene’s Court, 77 Rea Street, women in Birmingham
Digbeth, Birmingham BS 6BB
Tel: 0121 6221833
tony.merry@midlandheart.org.uk
The Forest Bus Mobile Project, Jane Peacock Mental health, equality and wellbeing
Hampshire Forest Bus House, of Gypsies and Travellers in Hampshire
Unit A8.2, North Road,
Marchwood Industrial Park, Normandy
Way, Marchwood, Hants SO40 4BL
Tel: 02380 663866
jane@forestbus.co.uk
www.forestbus.co.uk
Future Health and Social Care Sharon Annakie The needs of Black minority ethnic
Association, Birmingham 2-4 Summer Hill Terrace, carers who care for those with
Birmingham B1 3RA dementia, in the Ladywood area
Tel: 0121 265 2650 of Birmingham
lucy.peterson@futurehsc.com
www.futurehsc.com
Guideposts Trust and Watford Asian Leslie Billy Asian women from Indian, Pakistani,
Community Care Henry Smith House, 3-5 Estcourt Sri Lankan and Bangladeshi
Road, Watford WD17 2PT communities in Watford and their
Tel: 01923 223554 understanding about mental well
lbilly@guidepoststrust.org.uk being: their views about the
accessibility and appropriateness
of local mental health services
Healing Waters, Croydon Marjorie Francis The after-care mental health services
PO BOX 3026, Coulsdon CR5 9AP in Croydon for African, African-
info@healingwaters.org.uk Caribbean and Black British male
mental health service users aged
between 18-45 years
Health, Advocacy and Resource Elaine Dixon The mental health needs of refugees
Project (HARP), Manchester The Zion Centre, 339 Stretford Road, and asylum seekers in Manchester
Hulme, Manchester M15 4ZY
Tel: 0161 226 9907
info@harp-project.org
www.harp-project.org
Hikmat BME Elders Centre, Exeter Fiona Hutton ‘Like suffer in a dark fridge’:
Regus House, 1 Emperor Way, the mental health experiences
Exeter Business Park, Exeter, and outcomes of Black and minority
Devon EX1 3QS ethnic elders and their carers in and
Tel: 01392 314753 around Exeter
kulini@msn.com
Hopscotch Asian Women’s Centre 42 Phoenix Road, London NW1 1TA The mental health needs of young
(HAWC), London people from a Bangladeshi background
Tel: 0207 3886200
from the London Borough of Camden
nahar.choudhury@hopscotchawc.org.uk
Karma Nirvana, Derby Shazia Qayum The mental health and wellbeing needs
(now known as Karma Nirvana Unit 6, Rosehill Business Centre, of South Asian women re-settling in
Male & Female Project) Normanton Road, Derby DE23 6RH Derby following domestic violence
Tel: 01332 604098
shaziaqayum@btconnect.com
Khidmat Centres, Bradford Mohammed Saleem Khan The mental health needs of older
36 Spencer Road, Bradford BD7 2EU people from South Asian communities
Tel: 01274 521792 in Bradford
info@khidmat.org.uk
Lewisham Day Centre for Refugees Makila Nsika The mental health needs of refugees
and Asylum Seekers c/o FrancoEast, Unit 10B, and asylum seekers in the London
Deptford Business Park, Borough of Lewisham
Deptford, London SE8 5AD
Tel: 0208 6912020
ledaycentre@hotmail.com
Maytree Nursery and Infant School Rajvinder Sandu Power to parents: work by a local
parent support staff, Southampton Power Parents Project, school to enable South Asian parents
Maytree Nursery and Infant school, to foster their children’s mental
Derby Road, Southampton SO14 0DY wellbeing
Tel: 02380 630522
head@maytree.southampton.sch.uk
Mind in Tower Hamlets (MITH) Michelle Kabia The experiences that adult mental
Open House, 13 Whitehorn Street, health service users and survivors from
London E3 4DA African and Caribbean, Bengali and
Tel: 020 7510 1081 Somali communities have had of
michelle.kabia@mithn.org.uk using mental health services in
Tower Hamlets or other boroughs
My Time New Communities Team, 172 Herbert Rd, Small Heath, Mental health needs of asylum
Birmingham Birmingham, B10 0PR seeker and refugee men and
Tel: 0121 766 6699 women community in Small
info@mytime.org.uk Heath, Birmingham
Nguzo Saba, Preston Christina Cooper Exploring the mental health needs
16-18 Derby Street, Preston, and access to mental health support
Lancashire PR1 1DT services for young males aged 14 to 25
Tel: 01772 883733 years from African, Caribbean,
nguzosabacentre@yahoo.co.uk South Asian and mixed heritage
www.nguzosabacentre.org.uk backgrounds within Preston.
DRE Community Engagement Study Appendix 4 139
Appendix 4
Contact details of the community
organisations that participated in this project
Northampton Irish Support Group Vince Carroll A report on the 1st generation Irish
112 Adnitt Road, community in Northampton, and their
Northampton NN1 4NG experiences of mental health and
Tel: 01604 473920 mental health services
thomas.vincent.carroll@ntlworld.com
Northamptonshire Somali Abdirahman Abdi and Abade Ahmed, Jaah Wareer (Trauma)? I live with this:
Community Association (NSCA) 8 Hounsbarrow Road, Briar Hill, post traumatic stress in the Somali
Northampton NN4 8SA community in Northampton and their
experiences of health services
Partners of Prisoners (POPS) and Diane Curry OBE The mental health needs of young
Families Support Group, Valentine House, 1079 Rochdale Road, Black and minority ethnic men based
Manchester Blackley, Manchester M9 8AJ in HMP/YOI Hindley
Tel: 0161 702 1000
diane@partnersofprisoners.co.uk
www.partnersofprisoners.org.uk
Portsmouth Race Equality Network Tunde Bright-Davies The mental health needs of people aged
Organisation (PRENO) Unit 2, Victory Business Centre, 50 and over in the Chinese, Vietnamese
Somers Road North, Portsmouth, and Sikh communities in Portsmouth
Hampshire PO1 1PJ and the views of service providers
Tel: 02392 877 189 regarding BME service users
tuned@preno.org.uk
The Qalb Mental Health Centre, Yasmin Choudhry The mental health service needs of
London (now known as Qalb 26 Low Hall Lane, Walthamstow, South Asian communities in the
Centre Services Ltd) London E17 8BE London Borough of Waltham Forest
Tel: 0208 521 5223
theqalbcentre@hotmail.com
Rethink Birmingham Ajaib Khan The mental health views, concerns and
28 Glebe St, Walsall, WS1 3NX needs of the Pakistani community in
Tel: 01922 627706 Small Heath, Birmingham
ajaib.khan@rethink.org
Rethink Sahayak Services, London Carol Gosal Understanding the effects of domestic
197 Kings Cross, London WC1 9DB violence for South Asian women
Tel: 0207 7138984
claire.felix@rethink.org
Rotherham Yemeni Community Abdulla Mohamed Exploring the mental health needs of
Association (now known as Yemeni 35 Hatherley Road, Eastwood, the Yemeni community
Community Association) Rotherham S65 1RX
Tel: 01709 821871
ryca@btconnect.com
RUN-UP (Redbridge User Network Christine Bullivant The experience of people from Black,
User Pressure Group) 98-100 Ilford Lane, Ilford, Asian and minority ethnic groups
Essex IG1 2LP in adult acute mental health settings
Tel: 0208 9252435 in Redbridge
runupuk@hotmail.com
Sahara Spotlight Group, Sahara Rifaat Raja Zarina Din Mental health service needs of
Women’s Group, Middlesbrough 11 Thornwood Avenue, Ingleby Asian women
(now known as Tees Valley Asian Barwick, Stockton on Tees TS17 0RS
Welfare Forum Limited) Tel: 01642 765574
tvawf@yahoo.co.uk
Saheli Asian Women’s Project, Priya Chopra The mental health needs of South
Manchester PO Box 44, S.D.O, Asian women who are survivors of
Manchester M20 4BJ domestic violence
Tel: 0161 9454187
saheli.centre@virgin.net
Sharing Voices (Bradford) Mohammad Shabbir Self-defined mental health needs of the
99 Manningham Lane, Manningham, Muslim community
Bradford BD1 3BN
Tel: 01274 731166
www.sharingvoices.org.uk
Somerset Racial Equality Council PO Box 75, Somerton, Researching BME views on mental
Somerset, TA11 9AR health provision in Somerset: light at
Tel: 01458 274200 the end of the tunnel?
info@srec.org.uk
Southside and Fanon, London Claudette Campbell-Bailey Male African and African Caribbean
(now known as Southside 31-33 Lumiere Court, 209 perspectives on ‘recovery’
Partnership) Balham High Road,
London SW17 7BQ
Tel: 0208 7726222
ccampbell-bailey@southsidepartnership.org.uk
www.southsidepartnership.org.uk
SubCo Trust, London Taskin Saleem Asian elders’ and carers’ access to
49 Plashet Road, Upton Park, mental health services
London E13 0QA
Tel: 0208 548 0070
taskin@subco.org.uk
Talking Matters Wellbeing Centre, Jose Martin Emotional experiences and attitudes
London The Library, Portland Avenue, of Orthodox Jews in Stamford Hill:
Stamford Hill, London N16 6SB a needs assessment of mental health
Tel: 0208 802 9222 services in the Ultra Orthodox Jewish
office@talkingmatters.info community in North London
Tees Valley Voices for Justice, William Meli The mental health needs and
Middlesbrough Ground Floor, Erimus House, experiences of African men living
4 Queens Square, in the Tees Valley
Middlesbrough TS2 1AA
Tel: 01642 354143
info@blackstudentsproject.co.uk
Turkish Women’s Support Group, Suzanne Ahmet The mental health needs of Turkish
London 42 North Square, Edmonton Green, speaking children/young persons
London N9 0HY
Tel: 0208 8074525
suzanne_twsg@yahoo.co.uk
UK Coalition of People Living with Jack Summers The mental health needs of Black
HIV and AIDS (UKC), London 250 Kennington Lane, African people living with HIV
London SE11 5RD
The Wiltshire Trust, Southampton Phil Simmons Investigating the extent and impact
PO Box 566, Southampton, of isolation and loneliness amongst
Hampshire SO14 3XJ ex-service users and carers
Tel: 02380 232220 / 07981 989126
phildazzler@googlemail.com
YWCA Doncaster Women’s Centre Mandy Willis The mental health needs of Black
21 Cleveland Street, and minority ethnic communities
Doncaster DN1 3EH in Doncaster
Tel: 01302 309819
joyce.foster@ywca.org.uk
Youth Voice, Leicester Hamza Vayani Substance misuse and mental health
1st Floor, Block D, Wellington House, services: an exploration of the
29 Albion Street, Leicester LE1 6GD experiences and attitudes of young
Tel: 0116 2239177 people from Black and minority
hamza@youth-voice.org ethnic (BME) communities
Note: The online survey was interactive, so a response to a (B) About your CDW role
particular question would automatically result in respondents
being redirected to a further appropriate question. These are 2. In which year did you take up your CDW post,
indicated in the questionnaire below with * working on the Delivering Race Equality in Mental
Health Care agenda?
2005
(A) Information about this survey 2006
1.
The International School for Communities, Rights and 2007
Inclusion (ISCRI) at The University of Central Lancashire
(UCLan) is working on a report about the mental health 2008
community engagement projects undertaken 2005-2008,
relating to Delivering Race Equality in Mental Health Care. 2009
2.
To add current detail to the report, ISCRI is interested
in gathering the views of Community Development
3. In which Strategic Health Authority (SHA) region
Workers (CDWs) about the impact of the community
do you work?
engagement projects.
East of England
3. The following questions ask about your involvement in the
DRE Community Engagement Projects. Even if you did not East Midlands
take part in this in any way, please would you let us know
this by answering the initial questions. When you answer London
that you were not involved, you will skip to the final North East
questions and submission option.
North West
4. The information you give will be analysed and will appear
in a report along with the overall findings of the project. The South Central
report is likely to appear on the relevant mental health
websites, be distributed to relevant organisations and some South East Coast
findings will also be reported in academic journals and
South West
mental health publications.
West Midlands
5. The questionnaire is completely anonymous: we don’t want
you to put your name on it and no information that could Yorkshire and the Humber
identify you will be published nor passed on to anyone else.
You don’t have to answer any of the questions you if don’t
want to, but please answer where you can.
(C) FISs
6. If you have any questions about this questionnaire, please
get in touch with Joanna Hicks: jshicks@uclan.ac.uk or 4. Do you work in a DRE Focused Implementation
Jane Fountain: jfountain1@uclan.ac.uk Tel: 01772 892780 Site (FIS)?
Yes
7.
If your involvement in the community engagement
programme was very limited (e.g. if you have come into No
post since spring 2008) this questionnaire will take just a
couple of minutes to complete. If your involvement in the *If no, redirected to q6
programme was greater, it will take up to 15 minutes.
5. Which FIS do you work in? 8. Which ONE of the following best describes your role in
the community engagement projects?
Bedfordshire & Hertfordshire
I worked as a community researcher in the community
Birmingham & the Black Country engagement project and took up my CDW post afterwards
County Durham & Tees Valley
I played a major role in delivering the project (e.g.
meeting often with community researchers and/or leading
Dorset & Somerset
on the project)
Greater Manchester
I played a minor role in delivering the project (e.g.
Hampshire & Isle of Wight providing some information and offering some support)
North East London 9. If you answered ‘other’ above, what was your role?
No
11. Please would you briefly describe up to 3 improvements
Not sure
in mental health care for Black and minority ethnic people
*If no, redirected to q17 in your area that you feel have links with the DRE Mental
Health/UCLan community engagement programme. If these
were aimed at specific communities, please state which.
12. How did the DRE Mental Health/UCLan 15. What are the obstacles, from your point of view?
Community Engagement Project help to bring
Lack of financial resources
about these improvements?
Highlighted community needs Lack of human resources
Helped to open up access to communities for service Lack of support from senior management
providers/commissioners
Lack of support from healthcare professionals
Helped identify new services that are needed
Other issues taking priority
Raised profile of mental health issues in the communities
Other issues
Created a team of trained community researchers to
continue work in the community for service improvement
16. If you answered ‘other issues’ above, please give
Developed links between community groups and service
details here
providers and commissioners
Other
No
Don’t know
User-Focused Monitoring
Robert Little, page 90