Case Study: Access to Eye Health Services for the Learning Disabled

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1 Case Study: Access to Eye Health Services for the Learning Disabled Key findings Orthoptic led home eye checks and co-ordination of eye care services for people with LD shows many more people were able to access eye care services successfully via multi agency referrals and liaison with the community diabetic eye screening service. Locally as this pathway develops, even people with severe LD are accessing eye care successfully for the first time in many years and, in some cases, have reached a point where they can access local primary eye care services. This reduces the number of secondary hospital appointments and, consequently, reduces costs long term. GPs and Practice Nurses can also play a key role in ensuring every person with LD is offered an annual health check (which includes an eye examination). For those people with a severe learning disability an orthoptic home eye check is available. In April 2007, as part of a small multidisciplinary team I undertook a pilot study looking at improving access to eye care for adults with learning disabilities in South Devon which was published in RNIB s magazine New Beacon. Our study confirmed national research findings that people with learning disabilities experience a much higher incidence of sight problems but significantly lower uptake of eye care services. Research has found that between 14-15% of adults with a learning disability had a visual impairment severe enough to make them eligible as blind or partially sighted (Ellis 1986 and Lewis 1994). However in Devon only 1.82% were registered. It was therefore clear that under-registration was occurring. This pilot study gave us the evidence we required to bid for funding and our local PCTs (as they were then) were able to fund my role as co-ordinator one day a week term time only. The service was monitored on a six monthly basis initially to maintain funding until in 2009 it was incorporated into my job description as an extended role. The nature of pathways for people with severe LD is that local services need to be tailored to meet local needs and this has been recognised by national bodies e.g. SeeAbility in outlining eye care pathways for people with LD. As coordinator of the service, I therefore aim to meet the requirements of the Government White Paper Valuing People 2001 and Valuing People Now 2010 whose principle aims are Rights, Independence, Choice and Inclusion. This White Paper states that the majority of people with a learning disability should be able to access services just like everyone else with the understanding

2 that in some instances reasonable adjustments may be needed to achieve this. I have therefore used these principles to underpin our local service to "Improve access to eye care for adults with learning disabilities in South Devon". In terms of eye care, the majority of people with a LD should be able to have regular eye checks at their local optometrist practice. Our local service has developed three main areas: 1. Raising awareness. In order to ensure best take up of eye care services, raising awareness locally by providing easy read information leaflets with local contact details is essential. For young people making the transition from child to adult services, I go into the FE depts. of local special schools plus the learning opportunities section of our local FE college annually, to provide a practical session talking about what happens when you go to have an eye check and the importance of maintaining regular eye checks especially when they make the transition to adult services. We have produced an easy read leaflet Getting my eyes checked with local contact details to support this. Maintaining links nationally and locally is essential, particularly any hospital learning disability groups, low vision groups or commissioning groups around eye care. Raising awareness amongst other professionals is essential and for this service to run effectively there must be strong links with the Learning Disability Team(s) (Maybe more than one - I have to liaise with 3 in the area) and especially the Primary Care Liaison Nurses. GPs /Practice nurses, also play a key role in that every person with a learning disability should be offered an annual health check at their GP practice. Our figures indicated we were not receiving very many referrals from GPs therefore last year we produced a local Map of Medicine for the eye care pathway for adults with learning disabilities with an electric referral form attached which we launched at the GP manager s monthly meeting To maintain momentum and multidisciplinary links I hold a service review meeting every six months to set targets and also to highlight any specific problems. 2. Providing reasonable adjustments. This might be setting up a course of de sensitisation with the local LD Nursing Team, providing a point of contact for enquiries and advice, liaising with other health care professionals esp. eye clinic staff to ensure the most appropriate appointment for individuals and we now have a separate pathway for people with LD who need diabetic eye screening to ensure they are accessing the service successfully. Eye appointments are made at a time which is most convenient for the person, a double slot is allowed, waiting is kept to a minimum; in some cases this may mean I will do the vision in advance to reduce the amount of time needed at any one session. The hospital primary care liaison nurse is notified of any appointments made and will accompany the person and their carer if requested.

3 For some complex cases a Best Interest meeting may be necessary to discuss whether certain interventions are in a person s best interest. 3. Home Eye Test Finally for a small group, (approx. 13%) who are unable to access primary eye care, I provide a home eye test service to assess people in their familiar home environment. These referrals allow me to carry out a functional vision assessment, provide practical advice to carers and arrange for the most appropriate routine eye care longer term. These referrals are increasingly involved with assessing people with CVI and people with Downs Syndrome and dementia, hence, working with the Ophthalmologists to decide whether there are any ocular causes that could be treated to improve visual potential and providing detailed advice around the awareness of and management of CVI and the visuoperceptual illusions and hallucinations that are often associated with dementia are key. The above is a brief overview of the service. In terms of added value a review of the attendances for the home eye check and diabetic screening service show that by making reasonable adjustments everyone was able to access eye services, the majority of which were via a local optometrist and community diabetic eye screening service. In the few cases where this was not possible, desensitisation sessions have proved successful in helping people even with a severe learning disability to access the eye care they needed. Cost savings. As many of these people were not previously accessing eye care there is no immediate cost saving however: we have a moral and a legal requirement as outlined in White Paper Valuing People (and many other reports) to ensure our services are accessible to all. Locally we are seeing that as this pathway develops, people even with severe LD are accessing eye care successfully for the first time in many years and in some cases have reached a point where they can access local primary eye care services. This obviously reduces the number of secondary hospital appointments and consequently costs long term. Also in the longer term if people are getting regular eye tests which continue once they leave school, people will require less de sensitisation to access adult eye care services because they won t have had a break in eye care which currently can be many years resulting in anxiety both from people with LD and their carers around attending eye appointments. Orthoptists are in a unique position to coordinate such a service because we are based in the eye clinic and therefore have direct links with other eye clinic staff, the consultants and appointments staff. We can liaise with eye department nursing staff who can act as LD champions assisting with de sensitisation visits especially in the eye surgery unit and outpatient departments. We traditionally have strong links with community services, are often known at GP surgeries especially if we coordinate vision screening programmes. The LD teams have specialist LD AHPs and again I work very closely with LD S+LT s and OT s carrying out sensory assessments. Orthoptists can provide extremely useful information about functional vision which can underpin other service planning around an individual s needs.

4 I have also worked closely with local optometrists who are key to achieving a successful eye care pathway for people with LD. However I have not yet achieved my goal of having a local register of optometrists who have a specialist interest in assessing people with LD. I am currently having discussions with our ophthalmology business managers about the importance of linking up the two pathways using the LOCSU - Local Optical Council s Support Unit Document as the basis. See attached. With commissioning for services currently taking place it is the ideal time to ensure our services are promoted. Finally, for the last seven years I have been responsible for this service on the equivalent of 3.5 wte (one day a week term time only) I have to admit it is taking more than that now so I am looking to increase to 0.4 wte for this role. Attached as an Appendix - are some figures for my service over the last year. If you have any queries, feel free to me, Kathy Diplock, South Devon Healthcare NHS Foundation Trust kathy.diplock@nhs.net June 2014

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