Eye tests are not usually a priority for many people with learning disabilities; life usually has enough challenges – and often numerous other appointments – already.Even when it does become apparent that someone with a learning disability needs their sight testing, the services on offer aren’t often suitable for them.
As a result correctable conditions –from short sightedness to cataracts – as well as conditions like glaucoma that can be treated but will do considerable damage if they are not tackled are going unnoticed until the point where the harm has already been done. So what is being done to try and change this picture?
People with learning disabilities are more likely than the average population to have vision problems. It is estimated that in the UK at least one in 10 people with a learning disability has serious sight loss, according to Action for Blind People. A much higher proportion – about six in 10 – need glasses.
Part of the problem is that these needs often go unrecognised. “There are so many potential reasons why someone’s lifestyle might change that carers tend to overlook the obvious possibility of a sight problem and look for more complex things like dementia or psychological factors,” says Martin Thomas, head of advisory services for charity SeeAbility, which supports disabled people with sight problems. “In fact, even if the sight loss is just part of the issue, fixing their sight will help them to cope.
“People assume that having good vision isn’t essential if you can’t read or drive a vehicle. But good vision means you can go out, recognise your loved ones and take an interest in the world. If it deteriorates so does your quality of life.”
That, he argues, is more important for people with learning disabilities. “If you can’t change the TV channel, or slice bread you lose things that made you even minimally independent.”
Even when people do recognise there is a problem, the standard eye test of reading letters off a chart is often fairly useless, let alone the further tests that are conducted for conditions like glaucoma, which involve getting a person to follow lights on a screen and then have air puffed into the back of the eye – something that many without learning disabilities find difficult. Many people with learning disabilities need more time, and possibly the opportunity to get to know the optician environment in advance if anything productive is to come from the experience.
A small number of clinical commissioning groups (CCGs) are now commissioning different eye services for people with learning disabilities, working with opticians’ organisation Local Optical Committee Support Unit (LOCSU). People referred onto this ‘eye care pathway’ by their GP via the annual health check or by others, such as carers, services or optometrists, receive information that LOCSU has developed with SeeAbility, as well as much longer eye appointments – up to 45 minutes – which gives them the chance to relax and get a much clearer idea of what is going on. They also get the opportunity to visit in advance, so that the eye test is not a complete shock for them on the day.
“If a patient needs glasses, they’ll get information – all designed in conjunction with people with people with learning disabilities – to tell them about their glasses and about how to look after them,” says LOCSU managing director Katrina Venerus. “Given the likelihood that someone with a learning disability is going to need them, it’s particularly important to tailor the whole experience – not just the sight test itself – to their needs. It’s a fully-integrated service, helping people along the whole journey.”
So far only three London CCGs are piloting the pathways, with another due to be taken up in Durham Dales, Easington and Sedgefield, though four other areas are offering similar services that predate the pathways. “We need to get the CCGs to understand that this is an unmet need, with huge benefits not just to the individual but also the health and social care system,” Venerus adds. “Ultimately we want to make this pathway universally available across England.”
The voluntary sector is also stepping up to meet this deficit. Kent Association for the Blind (KAB) has been providing specialist rehabilitation workers for people with learning disabilities since 1987. “We’re trying to encourage staff to have sensory impairment on the agenda, whether they’re writing care plans, assisting people with making life choices, or anything else,” explains head of rehabilitation Jonathan Ward. “We also deliver rehab work, trying to make sure that the person has the same access to rehabilitation as everyone else.”
On a wider scale, RNIB Scotland is tackling the issue in its Vision Champions model, which is also addressing autism, dementia and stroke. The learning disabilities project is being run in partnership with Greater Glasgow Health Board. It works at two levels: the first provides training for staff working with people with learning disabilities. “We aim to give them a bit more of an understanding of the common causes of sight loss, so that they understand that some may cause a person to lose central vision and some peripheral vision,” explains Joanne Dick, project development officer. “We talk about the way this can show itself in the person’s behaviour.”
Then a smaller number – they’re aiming for about 30 – of ‘vision champions’ are being given more intensive training so that they can support people through an optician appointment, and make sure that the outcome becomes part of the person’s care plan. “Eventually, we hope these will become the go-to people in the area for advice and information,” adds Dick.
Finally, groups of people with learning disabilities are tackling this issue themselves. Former co-national director for learning disability Scott Watkin is SeeAbility’s eye care and vision development officer and also a visiting lecturer for learning disability nurses at the University of Hertfordshire. He is leading on a peer education programme with Opening Doors (formerly Norfolk People First). “The aim is to train people with learning disabilities to talk to others and to train them up too, in order to spread the word about eye care messages,” he says. “We think it also helps us to get the message across to family and carers that people with learning disabilities are 10 times more likely to have a serious sight problem.”
SeeAbility is planning to run up to 10 more training sessions in 2015. “Anyone who’s interested should get in touch,”
Watkin adds. Meanwhile in Kent, service users are being even more direct. KAB is working with the user-led Kent Valuing People Partnership to get an information pack directly out to opticians. “‘People from the partnership came to us and said ‘look, we’re not having a good deal when we go to the optician,” Ward explains. “They came up with the idea of developing an information pack. We’ve used a lot of the existing information and drawn up a pack explaining ways of communicating, the need to spend more time than you might usually, ways to encourage people to wear their glasses and so on. There’s a printed pack, and a CD for printing out more. Once the packs had been developed, people from the partnership visited optometrists across East Kent, delivering them and explaining to staff.”
These examples show that services are beginning to change, and it is often being led by those on the ground – and is responding to increased demand.
“On the very positive side, as people are expecting more of services and leading much more integrated lives, their expectations are growing,” SeeAbility’s Thomas adds. “More people will be referred and want answers; our job is to provide those answers.”
With more and more people with learning disabilities living to the age where slight loss is almost inevitable, the need for those answers is becoming increasingly pressing.