Executive Summary: 12:10:2012

An interview-based study to assess patient experiences and perceived benefits of the Positive Care Programme (PCP)

An independent report produced for Touchstone by:

Health Academix Ltd: Independent health researchers Jane Wilkinson: Director Hina Patel: Associate Kate Thomas: Affiliate + Hon. Professor of Health Services Research, University of Sheffield

Acknowledgements We would like to thank all patients whose participation made this study possible, and the staff at Touchstone who facilitated the research process. Thanks also to Dr Tamara Russell (Mindfulness Centre for Excellence and Kings College, London) for her input on the perceived psychotherapeutic benefits reported by participants. Thanks also to Pat Chetwyn, Marjorie Hall and Nicole Smith for their lay feedback.

Context

What is self-management support and why is it important? Around 18 million people in the UK live with a long-term condition such as diabetes, depression, heart disease or arthritis, and this number is expected to double by 2030. Someone with a long-term condition spends on average 3 hours each year in contact with a healthcare professional and 8757 hours looking after themselves. People are already managing their conditions but much more could be done to support those with long-term conditions to do this more effectively. As well as having a lasting impact on peoples quality of life and wider health outcomes, this support can lead to improved health outcomes and improved levels of patient activation. Patient activation refers to a persons ability to manage their health and healthcare. As well as exhibiting general healthpromoting behaviours, people with higher levels of activation are also more likely to adopt healthy behaviours specific to their particular long-term condition(s). For instance, more-activated people with diabetes are more likely to keep a glucose journal and more-activated people with arthritis are more likely to exercise. Improved activation is therefore the first, pivotal step on the road to the optimal management of any long-term condition. However, supporting people to manage their healthcare requires changes in the way healthcare is delivered. There needs to be greater emphasis on understanding the motivations and challenges people face in adopting health-promoting behaviours. Health professionals need to recognise and support the autonomy people exercise in managing their own condition and consider 1 how public services can support people to care for themselves effectively on a day-to-day basis.

Wallace L M, et al. (2012) Co-creating Health: Evaluation of first phase. An independent evaluation of the Health Foundations Co-creating Health improvement programme.

Executive Summary

This summary presents the findings of an independent qualitative study of the Positive Care Programme (PCP), which is a 20-24 week self-management intervention for people with Long Term Conditions. The Programme was developed in 2004 by Dr S Mason, a former nurse and joint Head of the Clinical Trials Unit at the University of Leeds. The PCP is now delivered by Touchstone, a Charitable Trust based in Leeds (Yorkshire, UK). This independent study involved participants who had attended three of five Big Lottery Funded Programmes between 2011/12. Background and aims of the PCP The PCP was designed in response to a perceived gap in National Health Service (NHS) provision for people with long-term health conditions. Whilst private fee-paying individuals have access to a wide range of options for preventive healthcare and management of long-term conditions in the complementary healthcare sectorthese services are not accessible to all due to limited capacity to pay 234 and variable NHS provision. The PCP aims to provide a holistic package of care within a communitybased setting to bridge this gap, providing physical, psychological/emotional and spiritual support and tools for improved wellbeing, resilience, and self-management for people living with long-term conditions. i.e. increasing self-efficacy and patient activation and engendering sustainable selfmanagement practice. What does the Programme involve? Weekly sessions are divided into three hour-long activities: 1. personal therapeutic interventions (acupuncture, Emotional Freedom Technique, Healing, Indian head massage, massage, reflexology), 2. exercise classes exercise (Alexander Technique, Dru Yoga, meditation, Therapeutic singing and Art) and 3. group workshops (positive thinking, nutrition, mind/spirit/body health). Participants selected different activities over the 20/24 weeks. Aim and methods of the study The aim of the study was to gain an understanding of the perceived quality and benefits of the PCP and to examine some of the underlying facilitating factors that increased self-management, as perceived by the participants. Qualitative interviews were undertaken with 23 people who were purposively sampled to reflect the characteristics of the whole cohort of 300+ PCP participants (i.e. gender, age, ethnic background and carers).We interviewed two separate cohorts, those who had recently completed the Programme (recent completers) and those who had completed one year prior to interview (sustainability group). The sample included participants with an attendance record of at least 50% to ensure they had experienced substantial contact with the PCP to enable us to gain a rich understanding of the Programme. The character of our sample means that we cannot comment on the reasons why some people dropped out early in the Programme. Characteristics of interviewed participants Section 2 of the full report describes the characteristics of the participants who were interviewed, which included a mixture of people who had physical and mental health conditions and associated symptoms. Stress, anxiety and depression were common to most and for a significant proportion of interviewed participants some form of psychological distress was their primary health concern. For others, stress, anxiety and depression were a result of, and secondary to, the impact of living with long-term physical ill
2 3

Mintel 2009, 2010 and 2011. Wilkinson J et al. (2004) Clinical Governance for Complementary Therapies in Primary Care. Department of Health and Kings Fund sponsored research published by the University of Westminster. 4 Thomas KJ, Nicholl J, Coleman P. Use and expenditure on complementary medicine in England - a population-based survey.Complementary Therapies in Medicine 2001; 9:1-11.

health. Notably, a good proportion of interviewed participants had auto-immune related conditions such as ME and/or Fibromyalgia. All participants self-referred to the PCP which may be an important facilitator in engaging hard to reach 5 and hard to treat groups . Participants had been recommended to the Programme by vicarious routes and mostly word-of-mouth i.e. others who had attended the PCP, Touchstone key-workers, IAPT 6 counsellors . Reasons for attending included the desire to try out different therapeutic interventions that might alleviate specific symptoms and unmet need via conventional NHSroutes. Those with very little experience or knowledge of the types of interventions that were provided on the PCP came with fewer expectations of the potential benefits. Some participants simply had an undefined sense that the Programme would help them, e.g. comments like I just thought it would help. Participants who had prior positive experiences of the types of interventions provided were reassured by the fact that it was delivered by Touchstone, a perceived trusted provider of local quality assured services. Quality of care Section 3 of the full report describes issues relating to the quality of care received on the PCP. The experiences of interviewed participants were overwhelmingly positive in terms of the process of care. Participants emphasised the friendly, welcoming atmosphere generated by the PCP team and described their sense of being genuinely respected and accepted as individuals, each coping with their particularhealth-related problems. Thats it with the Positive Care Programme youre not judged, everybodys there for one specific reason and that is to get a better health or a better meaning of health, or to get something out of it thats going to be different to them. Now to me my biggest problem was that I didnt want to be judged. I wanted an environment where I wasnt sitting in a corner. I did the Journey and thought oh God its a group and I thought Id just sit in a corner and listen but I didnt, I really got into it.
[Female, 40, depression + anxiety, sleep problems, RTA]

What particularly distinguishes the PCP from most other mainstream programmes is the provision of a range of therapeutic one-to-one sessions and group. Participants appreciated the flexible structure of the Programme, in particular the chance to access and try out the range of therapies, workshops and exercise sessions, before making choices that formulated a care plan to suit their individual needs.Some of the difficulties encountered with full engagement with the Programme related to the limitations created by participants conditions. In terms of the structure and content of the Programme, feedback from our interviewees suggests that a shift in emphasis to more experiential sessions initially followed by more sessions of their preferred treatments would be welcomed. Perceived benefits Section 4 describes the benefits of the PCP as perceived by interviewees. Participants reported a wide range of perceived direct therapeutic benefits from their participation on the PCP. Many participants came to the Programme suffering from musculoskeletal pain and discomfort commonly associated with long-term stress and anxiety. For most participants, the physical benefits were experienced on the day of treatment and up to one or two days following and there was a sense that longterm cumulative benefits would have been achieved through on-going treatment, beyond the 5/6 week blocks available to them on the Programme. Another theme was participants experiences of feeling calm and relaxed which was, for most, something not experienced for many years. Most of the longer-term benefits reported related to improvements in psychological, emotional and social functioning. A significant theme was increased
5

De Silva D. (2011) Helping people help themselves: A review of the evidence considering whether it is worthwhile to support selfmanagement. Health Foundation. 6 Improving Access to Psychological Therapies (primary care mental health services)

levels of confidence and self-esteem and the capacity to engage more fully in life. For some, this had been only small steps whilst others reported more substantial progress. Some participants with depression and anxiety had also engaged with psychological services (most commonly via IAPT), and reported that PCP worked well alongside those services. How The Programme delivers benefits Section 5 of the report, examines some of the possible mechanisms and factors that participants discussed in terms of achieving the reported benefits. Many participants reported feeling stuck and socially isolated as a result of their condition and held little prospect of any positive change to their health or life situation prior to the PCP. What the Programme offered some participants, at the very least, was an opportunity to experience things differently and open up the possibility that some change was possible, which in turn gave them increased optimism for the future It helped me because it prompted me again about what kind of life what kind of lifestyle I want for myself. Being able to stand up and be counted. It doesnt matter what kind of problems youve had, have some more confidence about who you are and what youre about. I think thats mostly what the Programme showed me that it takes all sorts to make up this world. I think thats one thing that it kind of set me on that journey if you know what I mean. That journey of selfdiscovery, things that would work for me.
[Female, 46, carer, LBP, ruptured disc, sciatica]

From the point of entry into the Programme participants were encouraged to reflect on their own motivations and experiences and take charge of their health behaviours. What and who they engaged with also provided a different sort of experience, one grounded in choice, experimentation and exploration and self-reflection. This broke down into a number of aspects of the patient journey: from entry point to engagement to the intervention itself and future actions (i.e. sustained self-care and management). The invitational and exploratory nature of how participants enter the Programme, provided opportunities to engage hard to treat and hard to reach groups, for example, BME groups and carers. The self-referral process means that participants sense of responsibility for their own health and wellbeing was engaged at the outset. Self-referral also enabled participants to engage at very 7 different points in relation to a stages of change model , because there is no requirement for them to be in a state of readiness to change. The weekly blocks of treatments, workshops and exercise activities continuously re-engage participants in exploring a range of options without any pre-set agenda to move patients on. Intrinsic to the therapies, workshops and exercise programmes was the fact that participants were consistently reminded to focus on the here and now and had opportunities to reflect on and address their immediate needs at each weekly session. This cyclical process of re-engagement separates out the PCP from other interventions such as CBT, which does require a certain readiness to change for participants to be able to benefit or other, more manualised, SMPs which use stepping up approaches to skill acquisition. Meeting people at the point they are at when they join the Programme was very important to those participants who had been socially isolated and lacking in self-worth. Participants could tailor their experiences on the Programme with the on-going support and help of those people delivering the Programme, providing a model of co-production with highly personalised care and support. The infrastructure of the PCP and the flexibility of staff accommodated participants in ways that would be difficult, if not impossible, to do in other self-management programmes (SMPs) e.g. enabling participants with high levels of social anxiety to engage in only the one-to-one sessions. This flexibility enables continued engagement for participants who may ordinarily drop out of group-based SMPs.

Prochaska JO, DiClemente CC (1984). The transtheoretical approach: crossing traditional boundaries of therapy. Homewood, Ill:Dow JonesIrwin.

In trying to draw out the perceived mechanisms of change and what was different in this service, a number of personal and interpersonal themes emerged. For many, their experience of themselves, their health and their role in their health care behaviour had changed since attending the Programme. Participants reported a number of factors that they perceived to support them in developing the foundations for better self-care and management, these included: developing self-worth through feeling valued and accepted, feeling supported through social contact and having opportunities to model healthdirected behaviours. Participants also reported perceived direct therapeutic benefits as a stimulus to change and how the PCP had enabled them to increase self-monitoring, insight and acceptance of their conditions, e.g. better pacing. Many had developed more constructive attitudes and approaches, which had given them confidence in their ability to cope (increased self-efficacy) and their capacity to engage in practical self-sustaining activities (patient activation). Its opened doors and opened doors in my mind because its given me a little taster of doing something different and I liked it ... Its opened doors in the view of me wanting to do different things and to live a normal life I dont want to spend the rest of my life isolated and not have any contact with people so its just taking baby steps towards that now. I miss not having that contact really and I miss not having a normal life ... Its sort of unlocked something really ... I wasnt seeing anyone before at all apart from my family. It has helped me Its opened up doors that I do want to get back into reality and start living a proper life.
[Female, 58, carer, depression, social isolation]

Sustainability of reported outcomes The final section of the report (Section 6) concludes by examining the degree to which participants reported a capacity to sustain the outcomes in relation to the core aim of the Programme, i.e. increased self-care and self-management. This aspect is where the PCP group exercise and workshops seemed to have had a greater role to play than the immediate benefits of the hands-on one-to-one therapeutic interventions. Each participant had taken at least a couple of techniques away from the PCP that they could use in their daily lives. Visualisation, meditation and relaxation techniques were being used on a regular basis by a good proportion of participants, even one year later. These techniques were particularly useful for those people with anxiety and depression. Almost all interviewed participants were engaged in some form of regular daily exercise, even if this was just taking a walk. Itreally put me back on track. What it did was refresh a lot of what I probably knew that Id forgotten about and actually encouraged me to do more of it. So now Im doing a regular yoga class each week, which I find very, very beneficial. Im also now having regular massage once a month, which I find very beneficial for tension and muscular aches and pains. Im also having acupuncture once a month as well, which I find is fantastic for my pain. Whereas before, especially my back pain, it hasnt made my back pain go away, but I used to get lots of referred pain all up my back through my shoulders into my neck and was holding myself very tense and now I find the pain is just focused where the problem is, where the mechanical problem is, and I can cope with that so much better.
[Male, 46, fibromyalgia, depression, hypermobility, pain, fatigue]

Many participants had taken up new activities and several in particular were now engaged in regular artistic activities. For those participants who could afford to pay privately, they had gone on to continue treatments that they had found beneficial to them on the PCP e.g. massage and acupuncture. A number had taken up low-cost interventions such as healing or group exercise classes. Several participants had already begun or offered to be a volunteer on subsequent PCPs. I mean Im hoping to carry on the energy healing because it changed my life, it honestly, honestly changed my life. I learned how to calm myself down and try to go back to sleep From the person who didnt want to see anybody, who didnt want to face the world, Ive become a person who put their name down for voluntary work because I feel safe.
[Female, 45, stress + anxiety, sciatica, weak bladder]