Lucy’s Story: Enabling adults with learning disabilities to look after their eyes
FOR IMMEDIATE RELEASE
September 25th 2009
Lucy’s Story: Enabling adults with learning disabilities to look after their eyes
If you work with people with learning disabilities, are you aware of how to support them with their eyecare? People with learning disabilities are more likely to have eye problems, and may be less able to communicate any difficulties. Eye care charity SeeAbility has funded eye 2 eye Community Development Officers in different parts of the UK to raise the profile of eye problems in this group, and to work with people and their carers to improve their eye care. Find out how this has helped one woman in West Sussex.
Lucy is a 58 year old lady with mild learning disabilities who lives in a supported living home. She was referred to SeeAbility’s eye 2 eye Community Development Officer Stephen Kill by her care manager. Lucy attends an eye clinic for treatment for glaucoma, has cataracts and is also diabetic. The care manager felt that staff needed to know more about Lucy’s eye conditions, her level of vision and what support she required with everyday vision-related tasks.
Lucy herself is aware of her visual impairment and is registered blind. She has a lively personality, loves to chat and go out shopping, to discos and to karaoke sessions. When Stephen Kill started to talk to her about her eye problems, Lucy’s main complaint was that her eye drops stung. She says, “I used to create. If they put a lot of drops in, I‘d say ‘aargh!’” Kill says, “Like the staff, Lucy knew bits and pieces about her eye conditions, but no-one had a full picture. It is a common situation as people may be accompanied to appointments by different support workers at different times”.
It was at this point that Stephen Kill went with Lucy to one of her hospital eye clinic appointments. At the appointment, the doctor explained about Lucy’s eye conditions. Lucy now says, “I know I have glaucoma and cataracts”. Glaucoma is a generally painless condition where raised pressure in the eye can cause loss of peripheral vision. The person may be able to see well straight ahead. Kill explains, “Many people with glaucoma don’t know why they keep on returning to see an eye specialist, and are unsure what their eye drops are for. My role is to help them understand what their condition is and what the treatment does, and this is how I helped Lucy.” Lucy is now clear about using her eye drops, and says, “It is one drop four times a day in both eyes”. This is particularly important as, without the drops, Lucy could lose more sight.
Because they had discussed it in advance, Stephen reminded Lucy to tell the doctor that her eye drops stung. The doctor was able to change them to a type which would not sting, which has made Lucy much happier to take them. She can now explain about looking after her eyes, “Every six months I see the doctor at the eye clinic. He is fine. He looks in my eyes and he says they are fine”. Repeat appointments allow the doctor to ensure Lucy’s drops are still controlling her glaucoma and protecting her remaining vision.
Stephen Kill’s role involves a bit of detective work. He explains, “I may need to go through someone’s notes, accompany them to the eye clinic once or twice, and carry out a functional visual assessment. I will then pull all the information together, talk it through with the person, and write it up for the care staff in accessible language.” Kill’s notes for staff will include details of where a person manages well and where they need more support. In Lucy’s case, because her peripheral vision is poor, she needed more support crossing the road. Staff could encourage her to turn her head to look both ways before crossing. The notes also listed what needed to be done to keep Lucy’s eyes healthy. In her case this meant using her eye drops on a daily basis and attending the eye clinic every six months. Finally, Kill advised staff about how to give Lucy information and make the most of her vision. In her home you can see attractive large print charts listing which carers are supporting her each day, healthy foods for her to eat and family birthdays to remember.
Stephen Kill worked with Lucy for around 10 months. He says, “How long I work with someone will depend on individual need and when their next eye appointment is due. Carers are usually helpful but sometimes they aren’t and I may wait a long time to receive information I have requested, which is frustrating. For some people I will also go to their next appointment with the optometrist so we are clear about whether they need glasses and when to use them. Lucy uses glasses for reading. I will also find out about the person’s hearing needs if appropriate”.
As well as benefiting from the service, Lucy has contributed to the eye 2 eye project in West Sussex on a number of occasions since her assessment. With her outgoing personality, she has been able to give a talk to fellow tenants of the supported living service about eye care during a day of workshops and activities. She describes her experience, “It was alright. I wasn’t nervous. I talked about how it is important to have your eyes checked every two years”. She has also spoken to inspectors from CSCI (the Commission for Social Care Inspectorate, now replaced by the Care Quality Commission) about her experiences and taken part in a presentation to the local learning disabilities partnership board. Stephen Kill says, “We practiced Lucy’s part in her home, then went over to where the meeting would take place the week before. This preparation really helped Lucy to feel comfortable on the day of the presentation. He adds, “Lucy has really given back to the project by supporting me when I give talks and talking about her own experience”.
What is a functional visual assessment?
- A rehabilitation worker will look at how someone’s vision is used for close-up activities, in the distance and in the periphery. The worker will use picture cards (known as Kay Pictures) or a Sheridan Gardiner letters test to get an objective idea of a person’s vision. This can also help to see how someone will get on if they have an eye test at the opticians.
- The rehabilitation worker will watch the person and how they interact doing everyday activities at home. The worker may use a selection of cups and bowls with coloured sweets such as Smarties to see which colours and contrasts the person can see most easily. A finger puppet on a stick makes testing someone’s peripheral vision fun, and can also be used to see if the person can follow an object.
- Evidence from staff can contribute to an overall picture of what a person sees. Examples such as missing food on a plate, or being surprised when someone approaches them can help the rehabilitation worker understand what the person can and cannot see.
- All this information will help the rehab worker make practical suggestions to help the person make the most of their potential and vision.
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What is a rehabilitation worker?
Rehabilitation workers work with people with visual impairments to help them build their independence. They are usually funded by local authorities, but the job can also be contracted out to a local voluntary association for people with a visual impairment. Stephen Kill studied for a Diploma in Rehabilitation Studies before taking his first job with the Surrey Association for Visual Impairment. He says, “My work involved carrying out assessments, delivering orientation and mobility programmes, helping with independent living skills and providing low vision training to visually impaired adults and children”. Kill then moved on to work for charity SeeAbility, to work with people with a visual impairment and additional disabilities in residential, day service and supported living settings. His role there involved liaising with staff teams to ensure that enabling rehabilitation programmes were delivered to service users. His current role at SeeAbility as an eye 2 eye Development Officer involves supporting people with learning disabilities to access regular and effective eye care and vision services. Kill adds, “I also work raising awareness and providing support and training to individuals, carers and health and social care professionals”.
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Find out more
If you work with adults with learning disabilities, check out www.lookupinfo.org for helpful resources for people with learning disabilities, their carers and families. Use the site to help prepare someone for an eye appointment or to learn more about different eye conditions.
www.seeability.org – SeeAbility’s eye 2 eye Campaign aims to transform eye care and vision for people with learning disabilities in the UK by providing information, advice and support for people with learning disabilities, their families and carers, eye care professionals and health and social services staff.
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Issued by SeeAbility, for further information please contact:
Monica Cornforth on 020 8997 1261 or 07811 147 192
NOTES TO EDITORS
- SeeAbility is the operating name for The Royal School for the Blind, a national charity which has for over 200 years provided support for people who are blind or partially sighted and have additional disabilities.
- SeeAbility offers a wide range of quality residential and community services for people with a visual impairment and additional disabilities. Our aim is to provide each individual with the support they need to develop essential life skills for greater independence and fulfilling life.
- SeeAbility’s eye 2 eye Campaign, a community-based initiative, is improving eye care and vision for people with a learning disability through access to information, specially-adapted sight tests and low-vision support.
- SeeAbility currently operates a range of services in London, Sheffield, Birmingham, Bristol, East Sussex, Hampshire, Devon, Somerset, Surrey and West Sussex.
- SeeAbility’s Head Office is based in Epsom, Surrey and for further information call 01372 755000 or go to www.seeability.org