People with learning disabilities are highly likely to have vision problems, but many are never diagnosed. We look at an innovative project which is tackling this.
“You need your vision to mobilise, to be able to see what you’re eating, to navigate in the dark,” says Rachel Pilling, who is a consultant ophthalmologist at Bradford Teaching Hospitals NHS Foundation Trust. “One thing I often say is that if this person didn’t have learning disabilities, we wouldn’t hesitate for a moment to take their cataracts out. Why deny them the same opportunity?”
Vision problems are surprisingly common among people with learning disabilities. The estimates suggest that in the UK today around 96,500 adults with learning disabilities (including 42,000 known to the statutory services) are blind or partially sighted. Six in 10 people with learning disabilities need glasses – and though this sight loss is less serious, they may not have glasses and/or the support to get used to them.
It is undeniably harder to diagnose sight problems in many people with learning disabilities. Someone with communication problems will find it hard to explain that they cannot see. Distressed and/or challenging behaviour because someone cannot see is easily misinterpreted. Adults, children and families all find attending eye clinics – with an unfamiliar environment and often a long wait too – difficult.
But there are also assumptions about what people need sight for – and that for some people it just isn’t that important. “Staff just don’t look for vision loss and so people aren’t necessarily getting eye tests, even,” says Martin Thomas of the charity SeeAbility. “People make assumptions on behalf of people with learning disabilities that they won’t wear glasses, or that they don’t need fine vision.” And importantly, orthoptist checks for reception age children are not mandatory in special schools.
As a result, sight problems – from the correctable to the disabling – are going unnoticed, or only noticed at a point where they have resulted in considerable damage. However, several projects are tackling this. The Bradford Learning Disability Eye Service, which Pilling set up in 2011 and which won the Vision 2020 Astbury Awards in September 2015, is one of these.
Although Bradford has a very well-connected adult learning disability service, and a vision screening programme for adults, hospital clinics are not usually able to provide services or information in a way that is useful or accessible to people with learning disabilities. The Learning Disability Eye Service has two aims: improving adults’ access to hospital eye service and offering children a visual assessment within special schools. It was fairly simple to get off the ground, Pilling explains. “We had a round-the-table meeting in January, involving all the relevant professionals from vision and learning disability services, and from there it was very quick.”
The adults’ service builds on, and extends, the existing screening programme. The community team identifies patients who have not had their eyes checked at the opticians, and they are seen first at the local learning disability centre. If there are any concerns, they’re referred directly into the specialist learning disability hospital eye clinic, which liaises with carers, provides accessible information and generally aims to make the whole process as user-friendly as possible.
Patients who need eye surgery are treated according to the SeeAbility Eye Surgery Support Plan. ”Most of our surgery takes place in the day case unit,” says Pilling. “They’re encouraged to go in and meet the nurse; they can choose the beds they’re going to be in, practice in advance with an eye shield so they’ll know in advance what it’ll be like when they wake up afterwards, discuss the medication they’re already taking and if they’ll need a sedative on the day – all that kind of thing. There are lots of adjustments we can make, like changing the time of day or not putting someone in a hospital gown.”
Since 2012, the service has seen 53 patients and has identified and treated a range of conditions (including glaucoma, diabetic retinopathy and cataracts). Five patients have been offered CVI registration, and 15 have had surgery – which has restored sight to 11 of them. “We have one lady who started speaking again after cataract surgery,” says Pilling. “All of a sudden she was engaging with her environment in a way that she hadn’t been doing before.”
The children’s service is an orthoptist-led assessment of children in special schools. “We put a case together that it would only cost another £900 to cover children in special schools. We also knew there were additional children in other years who hadn’t been covered, so we bid for a two-year mop-up for children those children.” The team has developed a tool called the Bradford Visual Function Box, which engages children’s vision with lights and toys; it does not measure visual acuity precisely but does make it possible to find out what size of object the child can see. “The biggest thing for me is to look at each child as an individual. Never dismiss prescribing them glasses just because they have special needs,” says acting head orthoptist Louise Outhwaite. “There’s a small but significant minority whom we’ll revisit in schools rather than taking to outpatients and we’re aiming to do all annual reviews within schools too.”
Of the 286 children attending special needs schools in Bradford, 199 were not known to hospital eye services and were assessed under the programme; 42 were referred into the hospital eye service; and eight were identified as eligible for registration. “Previous models have not been able to do a visual assessment of between 12 and 15 per cent of children – we only had three in total,” Pilling says.
The team is very clear that for a programme like this to work – on both adult and child levels - it’s essential to get carers, staff and teachers on board. “The input from the teaching and support staff is key,” Outhwaite insists. “You don’t know where to start with a youngster if you have no background in what parents and carers believe they can see, or their speech and language or other impairments. Even if it’s just from a brief conversation, it’s essential to have that picture.” “I’m setting up a way of working which involves having a school vision lead in each school and vision champions at each key stage – sometimes in each class,” adds QTVI Yvonne Smith.
“If you can help the carers understand why you’re doing something you’re more likely to succeed,” agrees Pilling. “They may ask things like: ‘Why would you bother putting him in glasses – he can’t read?’ I’ll point out that for a child who already has problems learning, it’s like making them hop around all day when we could give them two feet on the ground.”
Pilling sees no problem with making something similar work elsewhere – although it doesn’t necessarily have to replicate the Bradford model if another would be more appropriate.
What she does advocate is a “less is more approach”. "Lots of junior ophthalmologists do things in a certain order, and find it very difficult to come out of it. For someone with a learning disability you have to get what information you can, when you can, and make a decision on that basis, or bring them back to do tests on another day. You need to think ‘what information do I actually need’? And any improvement in a patient’s vision you can get, even if it doesn’t get them seeing perfectly, will revolutionise their life and that of their carers.”Tags Best of NB Online