care pathways

Role models
People with a learning disability and dysphagia need specialist support and advice to ensure safe eating and drinking and optimal communication but who is best placed to provide what? Peter Jones discusses how roles are shifting as the multidisciplinary service in North West Wales evolves.
READ THIS IF YOU ARE INTERESTED IN RE-FOCUSING ON COMMUNICATION PATIENT SAFETY ISSUES MULTIDISCIPLINARY WORKING

ysphagia is more common in people with learning disabilities than in the general population. Poor management can lead to a host of other health problems including respiratory tract infection, which is a leading cause of death for this group of citizens (National Patient Safety Agency, 2004). The changing demographics of the population of people who have learning disabilities means there are many people - and an increasing number of children - with complex health needs including dysphagia. They require specialist support and advice to ensure eating and drinking is safe and that they receive adequate nutrition in a manner acceptable to them. In their supervision series, Sam Simpson and Cathy Sparkes (2008) mentioned the importance of creating space for reflection. With this in mind, several colleagues suggested we might briefly reflect upon the setting up of a local service for adults with learning disabilities who also have dysphagia. During this process we looked at the issues that presented themselves and how we have supported our dysphagia service to evolve over nine or so years. Whilst striving to ensure that our service develops further, we hope that sharing our experience might encourage others who are attempting to tackle what is an important and potentially life-threatening condition within a very vulnerable group of citizens. North West Wales NHS Trust provides a service for the counties of Gwynedd and Ynys Mn (Anglesey). It serves a population of about 187,200 people, approximately 64 per cent of whom are Welsh speakers, encompassing a geographical area of 3,268 square kilometres. The Trust is located in an area of outstanding natural beauty, combining the mountains of Snowdonia and a vast coastline. The learning disability service is provided by two community teams integrated with our local authority colleagues in Gwynedd and Ynys Mn. Due to the size of the region, these teams work from five different bases. There is also a former learning disability hospital site offering small-scale inpatient services for individuals with complex health needs and challenging behaviour. The hospital recently completed a programme of resettlement with

L-R Deirdre and Jill

L-R Peter Jones, Wendy Williams, Stephen Hughes, Gwenan Roberts previous long-stay residents moving to smallscale accommodation across North Wales. Our service used to have a Professional Advisory Group, a multidisciplinary committee tasked with looking at service development. During December 1999 the group considered the management of dysphagia across North West Wales. The inconsistency of the service being provided and absence of clear service standards at this time was a cause for concern - much as, we suspect, the Portsmouth adult team experienced in terms of their aphasia service (Clark & Nineham, 2008). At the time we did not have a clear policy or identified pathway of care for individuals. There was inconsistency in assessment and a general lack of coordination of the management of care. therapist, senior physiotherapist, GP, learning disability nurses and a dietician. The group was keen to advance a multidisciplinary and holistic ethos in relation to dysphagia management. Gwenan Roberts, our consultant speech and language therapist, led work to develop an integrated care pathway. The initial stages of our project involved an open reflection upon the service we were providing. This forced us to admit that the quality of that service varied enormously and we needed a framework for improving it. The development of the integrated care pathway involved the whole range of disciplines concerned in the management of dysphagia. In addition to the input of clinicians, secretarial support was vital to the creation and administration of relevant documents. During the initial development of the pathway we considered the roles and responsibilities of all involved in the delivery of care. Rather than allocating responsibilities according to traditional job boundaries and specific professionals, we wanted to respond

Holistic ethos

During 2000, the Trust put together a multidisciplinary dysphagia team with a view to developing our dysphagia service. The group consisted of our senior speech and language

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to the needs of the service. We therefore considered who from our available resources was best placed to carry out each role. In many areas across the UK, the role of arranging and coordinating the multidisciplinary team with regards to dysphagia has traditionally been adopted by speech and language therapy. Within our service, we reached the consensus that this role lay comfortably with learning disability nursing. As the learning disability nurse has a significant role in the initial assessment of dysphagia we agreed that a nurse, having received specialist training in dysphagia management, would be the most appropriate professional to coordinate the management process.

Innovative approach

In what at the time felt like a fairly innovative approach, speech and language therapy input in relation to dysphagia would now focus on the communication aspects of dysphagia management: Assessment of individual communication skills (including the efficiency of oral structures). The formulation of strategies to promote communication, including the development of accessible information and supporting individuals to make choices and to participate in their dysphagia plan. Provision of advice and training on the communicative environment and the factors affecting communication at meal times and how best to communicate with the individual. Supporting and supervising dysphagia practitioners. One of the issues that arose from the decision to develop the nursing role was that access to appropriate training was initially difficult. One concern was how one professional group (speech and language therapy) could assure the competencies of another (nursing).The very positive working relationship that had been formed between local nursing and speech and language therapy services proved crucial in accessing information on relevant training opportunities. Wendy Williams was supported to undertake dysphagia training provided by the School of Nursing at Bangor University.Wendy is a learning disability nurse with a particular interest in and experience of dysphagia management. She had previously come into contact with the stroke team based at the local district general hospital as a result of supporting people with learning disabilities and complex health needs during acute admissions to the hospital. As part of the integrated care pathway, the dysphagia team put together guidelines on the management of dysphagia. The guidelines defined dysphagia and outlined potential risks to individuals with this condition. They emphasised the need for a coordinated and multidisciplinary approach. We piloted the pathway during 2000. It became apparent that the coordination and management of the dysphagia service was fairly

intensive in terms of time and effort. Wendy had to combine this role with that of a community learning disability nurse with an existing caseload of individuals. She also continued to liaise closely with the stroke team. The geographical area covered by the service is large and mainly rural. Given the extent of Wendys workload, a nurse was identified within each of the five locality-based community support teams to champion and coordinate dysphagia issues and to develop knowledge and expertise in this area. Offering clinical advice and more formal teaching sessions to direct carers from the health service and other providers as well as family carers has become a regular feature of the dysphagia teams service. Wendy has developed her role as dysphagia service coordinator, providing additional support to locality coordinators, including advice and involvement with people who have more complex needs.

In the period between 2000 and 2007 the dysphagia service has continued to develop with any resulting changes made to our pathway documentation as work progresses. Work undertaken by the National Patient Safety Agency during 2004 highlighted dysphagia as a particular risk to our client group, which gave us added encouragement to develop our service further. At this time Wendy and Gwenan liaised with representatives of the Agency as they gathered information on dysphagia management on a UK-wide basis. A dysphagia coordination group involving the Head of Service Stephen Hughes, consultant speech and language therapist Gwenan Roberts, clinical governance coordinator Peter Jones and Wendy was set up to monitor and evaluate the service. The central work of this group is to look at variations from records of individual pathways of care, any operational issues raised by Wendy and any

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matters arising from implementation of the pathway. The clinical management process is summarised in figure1. therefore need to consider issues such as succession planning. We now have clear guidelines around the management of dysphagia for adults who have a learning disability and a formal recognition of the role of the specialist dysphagia nurse. We are in the process of developing our local training package from a diploma to a degree level module which will be available to all professions working with people who have dysphagia. Awareness of dysphagia issues throughout the service has been raised since the project began and this, we feel, can only benefit the individuals whom we support. We have now been asked to take a lead on modernising the dysphagia service in the acute hospital and the paediatric service. The development of our dysphagia service has demonstrated that we need: To work in a mutually supportive and multidisciplinary fashion. To be open and honest about the services that we provide and be prepared to accept that we do not always provide the best service possible. To think creatively and, at times, outside of traditional professional roles. Explicit service standards - in this case through the development of an integrated care pathway. A supportive learning environment. Involvement of all relevant individuals in the development of integrated care pathways. Peter Jones is a Learning Disability Nurse and Clinical Governance Co-ordinator. Further information is available from Gwenan Roberts, Consultant Speech and Language Therapist, e-mail gwenan.roberts@ nww-tr.wales.nhs.uk or Wendy Williams, Specialist Dysphagia Nurse, e-mail wendy.williams@nwwtr.wales.nhs.uk. All work with Learning Disability Services, North West Wales NHS Trust. SLTP REFLECTIONS DO WE OFFER A SERVICE THAT RESPONDS TO THE NEEDS OF CLIENTS RATHER THAN TRADITIONAL PROVIDER ROLES? DO WE INCLUDE ADMINISTRATIVE SUPPORT WHEN PLANNING A PROJECT? DO WE HAVE A SAFE PRACTICE INFRASTRUCTURE THAT IS INDEPENDENT OF SPECIFIC CLINICIANS? Do you wish to comment on the impact this article has had on you? Please see guidance for Speech & Language Therapy in Practices Critical Friends at www. speechmag.com/About/Friends.

resources
HeadsUp is a Hansard Society web forum for under 18s to debate political issues and learn about the political process. www.headsup.org.uk The Management Consultancies Association has awarded Atos Consulting for it lean principles work with NHS South Central to redesign patient treatment pathways and change practice among front-line staff. Waiting times have been reduced by an average of 14 weeks. www.mca.org.uk A Family Companion to the ACT Care Pathway for children with life-limiting and lifethreatening conditions aims to help families and carers understand what will happen following the childs diagnosis. Free to families, tel. 0117 916 6422 / e-mail Susannah@act.org.uk Listen. Hear! is a campaign designed to make people think twice about the way they listen to music, including suggestions for safer listening, guidelines on volume, recommended listening time limits and maintaining ear health. www.deafnessresearch.org.uk/ Listen%20Hear%21+4955.twl Games for Life is a not-for-profit Community Interest Company which seeks technological solutions for attention difficulties. www.gamesforlife.co.uk The POPS Reading Programme supports an integrated approach to learning to read, designed with advice from Down Syndrome Education International. www.downsed.org/ Planetree is a non-profit organisation which aims to promote patient centred care in environments focused on healing and nurturing body, mind and spirit. www.planetree.org/about.html The British Voice Association has expanded its range of information about voice conditions and care. www.british-voice-association.com/voice-care. htm NUK baby care manufacturers have relaunched their product range free of the chemical Bisphenol A (BPA). www.nukbaby.co.uk A Skills Passport for Maternity Care Assistants in Scotland uses a traffic light system to support achievement of competencies. It shows what the assistant should not be undertaking (red), what requires further training (amber) and what is ideal for them (green). www.nes. scot.nhs.uk/documents/publications/classa/ 010808MCA_Skills_Passport.pdf

Evidence base

Wendy has spent time monitoring the evidence base in relation to dysphagia management, linking up with colleagues in other areas around the UK. In March 2007 Wendy began the process of trying to find a screening tool for dysphagia. Having come across work being undertaken in the USA by Justine Joan Sheppherd of Columbia University, New Jersey, Wendy made contact and met up with Joan at an event in Holland in late 2007. Joan introduced Wendy to the Dysphagia Disorder Survey (DDS), Dysphagia Management Staging Scale (DMSS), and pneumonia and choking risk assessment tools. The Dysphagia Disorder Survey (Sheppard, 2002) was developed specifically to screen adults and children with learning disabilities for dysphagia and related eating disorders. It is intended to identify risk factors associated with dysphagia. The tool also provides a raw score that indicates an individuals functional eating competency as well as a percentile ranking of swallowing competency. The Dysphagia Management Staging Scale (DMSS) is a five level staging scale that indicates the level of severity of an individuals eating disorder. This tool may be used on its own or in conjunction with the Dysphgia Disorder Survey to give a more comprehensive screening of an individuals needs. Wendy has incorporated these tools in her everyday practice and is in the process of ensuring that colleagues within the wider dysphagia team have the skills to use them also. We have begun the process of sharing our structures and guidelines with other health services via the current North Wales Health Trusts Learning Disability Network group. We are hopeful that we will be able to develop our service across the region with the impending merger of NHS Trusts across North Wales into one organisation. The whole process of developing the service has been a learning curve for all involved and it has become apparent that the service continues to evolve as we learn from everyday practice.

Distinct service

One of the things we have learnt is the importance of having a distinct dysphagia service that does not use limited resources from either nursing or speech and language therapy. Safe practice has to have infrastructures that override the skills of specific clinicians and we

Clark, N. & Nineham, S. (2008) A driving force, Speech & Language Therapy in Practice Spring, pp. 11-13. N.P.S.A. (2004) Understanding the patient safety needs of people with learning disabilities. London: National Patient Safety Agency, NHS. Sheppard, J.J. (2002) Dysphagia Disorders Survey and Dysphagia Management Staging Scale User manual and Test forms. NJ, USA: Nutritional Management Associates. Simpson, S. & Sparkes, C. (2008) Supervision in context, Speech & Language Therapy in Practice Spring, back page.

References

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