Young people with learning disabilities missing out on eye care
Across the UK, thousands of young adults with profound learning disabilities may be missing out, just because no-one has thought to test their eyes. Read on to find out how one SeeAbility community development officer in Sheffield is trying to turn this situation around.
Pauline Hargreaves is a learning disability nurse who works as a Community Development Officer as part of the national eye2eye Campaign run by SeeAbility. She says, “When I started working on the Campaign I saw lots of people with learning disabilities who had been referred to me with previously unidentified eye problems. Many of the people I have supported to have their eyes tested and subsequently had problems identified have been in their fifties and beyond. This concerned me as a number of people had clearly spent many years being unable to see well due to a lack of eye care. Therefore I started to look for a way to change the future, to help people with learning disabilities to access eye care at a younger age.”
Pauline decided to get in touch with the local secondary school for children with profound learning disabilities, Talbot Specialist School in Sheffield. She says, “I knew that if I could initiate eye care before the children left school, they would get into the eye care system and be sent reminders to have regular care throughout adulthood.”
There are around 65,000 children and young people with severe and profound learning disabilities in England. [i] Better health for people with learning disabilities is a key priority in the Government’s latest strategy for people with learning disabilities, Valuing People Now. It says that, “There is clear evidence that most people with learning disabilities have poorer health than the rest of the population and are more likely to die at a younger age. Their access to the NHS is often poor.” The pilot Pauline was proposing at Talbot Specialist School would look at bringing eye care to the students, improving their chances of getting serious eye problems detected.
Eye tests for people with learning disabilities are vital as they have a higher incidence of eye problems than the general population, and those with profound learning disabilities like the students at Talbot Specialist School are most at risk. In one study in the Netherlands 38.9% of young adults with profound learning disabilities were found to be blind. People with learning disabilities are more likely to need spectacles than the general population, and more likely to have a high prescription too.
People who are blind or who have severe sight problems are likely to have some useful vision, and action can be taken to help them make the most of their remaining vision:
- Moving about is easier in an environment with clearly marked edges.
- If someone’s vision is better on one side than the other, then may prefer to be approached from that side.
- Making things bigger makes things easier to see, however little vision you have.
- Improving lighting on the task in hand will help too.
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Talbot is a Specialist School for more than 100 young people with a range of complex learning needs including autism, profound and multiple learning disabilities. Carolyn Sutcliffe is the Deputy Head. She says, “Pauline came to school to talk to use about [eye care for the students] and I was very impressed. One of the parents also told us how her son, who has learning disabilities, was also visually impaired. The parent said that it was fantastic that it had been picked up.”
Pauline liaised with the teachers and school nurse, and spoke to Healthcall Optical Services which offers mobile eye examinations, also known as domiciliary eye care. She says, “I was able to explain that many of the students would not be able to use the conventional letter charts, and some would not be able to match pictures. They seemed to take this all in their stride.” Dawn Roberts of Healthcall Optical Services says, “It is not the first time we have worked with SeeAbility in the Sheffield area.”
Pauline recruited the students from those who were leaving the school at the end of the school year. She says, “All the school leavers have to have a medical. We went through the forms to identify any student who had not had regular eye care. Some had never had their eyes checked, while others had had congenital eye problems detected at birth, but with no recent follow up.”
The tests took place over two days. Pauline says, “It did take some organisation. For those students who were able to, we used the medical room. For others it was easier to test them in their classrooms. With some students, where we were able to, we used SeeAbility’s ‘Telling the optometrist about me’ forms to find their medical and eye health history out before the test. We managed to talk about the eye test to some of the students too, to help prepare them.” She continues, “The optometrist turned up with a good range of tests on the day which would suit students of different abilities.” Dawn Roberts of Healthcall Optical Services explains how an optometrist can get good results, even if a student could not match or name pictures, “We’re able to get a good estimate of a prescription using one of two techniques. Retinoscopy involves shining a light onto the person’s eye and inserting lenses until the reflection of the light does not move. It is very accurate, and a technique that all optometrists can use in anyone’s sight test. If the person can comply, the optometrist can use an autorefractor which shines a picture onto the back of the eye, measures the distance to the back of the eye and calculates the prescription needed. The optometrist has experience of knowing what sort of prescription will make a difference to the person. We can make a really good assessment of what their vision would be and their carers can be informed.”
Eye test essentials
Retinoscopy/autorefractor – to estimate the person’s prescription
Letter charts or picture matching – to allow the optometrist to refine the prescription
Ophthalmoscopy – shining a light into the eye to check eye health
The optometrist will use other tests depending on the person’s needs and abilities.
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Pauline says, “The optometrist was great. Where he could see there was a potential problem he stuck with it to get to the bottom of the issue. With some students he used eye drops to get a better view of the back of their eyes or to allow him to estimate a prescription more accurately. Not every student wanted their eyes tested: some wouldn’t let him get very near with his torch, but we managed.” The staff at Talbot School were also impressed. Carolyn Sutcliffe said, “We hadn’t thought we could offer this sort of screening in school. It was not disruptive at all.”
Sutcliffe explains one plus point of testing in-school which contributed to the pilot’s success, “The parents didn’t have to take [their children] to a strange environment.” Katrina, whose sons had their eyes examined, agrees, “I thought Jonathon, my eldest, could see everything. When he had his eye test he was found to be long sighted. I had problems with my other son as he didn’t want to wear his glasses, and the test showed he no longer needed them. The eye tests were great and I wish they could have been started when the boys were younger. Having the test in school is wonderful. The children need continuity and routine. Taking them into a high street opticians would be difficult as it would be a strange and new environment. The person who came to the school was marvellous and I was surprised that Jonathon behaved so well.”
Robert was registered partially sighted at birth, but had not had eye examinations since then. The optometrist checked his good eye, which was found to be extremely short sighted with a cataract. He felt that Robert would benefit from specs to address the shortsightedness, regardless of his other problems. Pauline says, “It may take Robert some time to get used to his spectacles. I’ll work with his teachers on introducing them gradually, but we hope that they will help him make the most of the vision he does have.”
Dawn has Downs Syndrome and profound multiple learning disabilities. She was not able to co-operate with the eye examination, but the optometrist could use an instrument to estimate that she was moderately short sighted and would not be able to see far at all. With a new pair of glasses Dawn’s vision should improve significantly.
Frank, a teenager with unmanaged epilepsy, had been in intensive care recently, so it was not a great day for the eye test. He didn’t want to open his eyes which meant that the optometrist could do very little. However another test was arranged for him at his home. Pauline says, “We went into the kitchen and did the test there with his mother present. She was so pleased to have his eyes checked, and felt it was a relief.”
Commenting on the results, Sutcliffe says, “I was surprised in one way, but learning disabilities can mask so many things. I now realise lots of people have eye problems that are not detected. I was impressed with how it was done too. The outcomes demonstrate the need for [eye testing for students with learning disabilities]. It has been a vital piece of work”. Pauline Hargreaves says, “I think many of the teachers assumed that the children had had an eye test somewhere in their journey through school. A support teacher here does some screening at age five, but of course that is not a full eye test. The teachers were amazed how easy it was to have the eye tests, and astounded that so many of the students could benefit from an eye examination.” Hargreaves adds, “Had I not started this project, these children would have gone on from school into adult life without being able to make the most of their vision. I fed back test results to the relevant teachers who were surprised that they had not spotted any problems. Even the school nurses had not picked up on signs of sight problems. One of the young women we tested just looks down at her chest all the time, which can be a sign that there is a vision problem. With others, lack of concentration could be an indication that it is worth getting an eye check. ”
A key issue for the NHS in Valuing People Now is to ensure high-quality specialist health services where these are needed. Pauline Hargreaves hopes that the pilot at Talbot Specialist School will show the need for better eyecare for people with learning disabilities, and encourage other specialist schools to arrange in-school eye care. She says, “How can children and young adults be expected to learn and develop when we are writing off one of their main senses? I’d like to see eye tests for children in special schools to be required by law. These young adults will be taking a care plan with them when they leave school, and now their visual needs will be on that plan. They will now get services that take into account how well they can see too.” Deputy Head Carolyn Sutcliffe agrees, “Health and social care need to work together to meet the needs of people with learning disabilities. Now these difficulties have been picked up the students can get appropriate treatments to improve their quality of life. This will help with their independence and allow them to continue learning more effectively throughout their adult life.”
Dawn Roberts highlights the need for better training for eye care professionals in working with people with learning disabilities, “Lots of optometrists have little experience with working with people with learning disabilities but we have been working with SeeAbility on a training package which will go out to all UK optometrists. There are a whole host of people with learning disabilities who are not getting access to eye care at the moment, and we’d like to change this. I know of one man who could not go to the toilet independently until it was discovered that he was extremely short sighted. With new spectacles he could take himself and no longer needed to wear pads.”
If you are keen to set up in-school eye tests in your area, Roberts advises that you approach the PCT first, “The regulations currently only allow for NHS sight tests to be provided at home, in an approved day care centre or an optician’s practice. Explain the benefits of testing in school to the PCT and they may be able to fund it as a Local Enhanced Service. Alternatively the service may need to be put out to private tender.”
If you know someone with learning disabilities who has not had an eye examination, SeeAbility Project Lead for Yorkshire and the Humber Laura Christie has some advice, “Nobody is too disabled to have their eyes tested. A lot of the students in this pilot had very complex needs and everybody managed to participate in some way. Visit the LookUp website to find a local optometrist who has registered to examine people with learning disabilities, and check out the information on the website or give SeeAbility a call about how to help someone prepare for an eye test.”
For More Information
www.lookupinfo.org – ‘Telling the optometrist about me’ and “Feedback from the optometrist about my eye test” forms are available to download along with further information on eye care and preparing someone for an eye test. You can also call 01372 755000 or email email@example.com
Talbot Specialist School Young Adults Eye Tests 2009 Outcomes
No problems 6 Students
Cataracts 3 students
Optic nerve damage and changes in the retina 2 Students
Nystagmus 2 Students
Glasses 4 Students
Valuing People, Department of Health (2001)