by Donna O’Brien, Policy and Public Affairs Officer, SeeAbility
We know that people with Down’s syndrome and their families and supporters are increasingly aware of the need for good eye care and the higher risks of sight problems that are associated with the condition.
The community is probably one of the best informed thanks to the fantastic work of the DSA and champions such as Dr Maggie Woodhouse OBE, and her groundbreaking research at the Down’s Syndrome Vision Research Unit at Cardiff University.
The DSA continues to share new research and provides advice on getting the best eye care and glasses for people with Down’s syndrome.
We must do all we can to raise awareness of the high levels of sight problems amongst people with learning disabilities and ensure that local eye care services put in reasonable adjustments, such as using accessible information.
We also need a national sight testing system that works with us rather than against us. The current system was never designed or funded with the needs of those with learning disabilities in mind.
This blog is about possible opportunities to get this national system reformed, where our combined voices can really make a difference.
SeeAbility is a national charity that works with people with sight loss and multiple disabilities and we have specialist services providing care and support across southern England. We’ve been around a long time – over 200 years in fact!
In the last decade we’ve used our invaluable experience to further promote good eye care for people with learning disabilities. We’ve got a lot of easy read information about having an eye test and a searchable database of opticians who can offer support at a sight test. Please visit our website at www.seeability.org – it’s all free to download, print and share.
In addition to promoting awareness amongst people with learning disabilities, their supporters, social care services and the eye care sector, we’ve even begun to do some sight testing ourselves.
At the moment our team is working in eight special schools, reaching children with more complex needs early on testing sight and dispensing glasses. Children with learning disabilities are 28 times more likely to have a sight problem than other children and they are the least likely to be able to access the eye care they need.
Nasir is a little boy we see at his special school. He has Down’s syndrome and is also on the autistic spectrum. Down’s syndrome comes with a risk of having a degenerative sight problem like keratoconus, but Nasir’s autism has meant a sight test in an optical practice has been ‘off limits’.
Unfamiliar places make him anxious. A practice room, which is small and full of equipment, does not suit Nasir who likes to be mobile and hold new things.
In school we’ve seen Nasir a number of times to help him trust and feel comfortable with the team. With patience and support, we’ve completed a sight test in the familiar environment of school. Nasir now has glasses to correct his astigmatism and we can share the information with Nasir’s mum, and with his teachers to make sure he gets the most support with his vision which of course helps him to get the best out of school.
We can also regularly check him for problems like keratoconus at a routine eye check in school. This is less stressful for Nasir and his family, especially now he has got to know us. Importantly, he doesn’t have to miss school to attend an appointment.
Nasir’s story is by no means unique. Half of the children we see in special school have a problem with their eyesight, but struggle to get the eye care they need in the community. We have found 4 in 10 children we test in school have no history of eye care and these are particularly children with autism. In other cases, children with more profound needs, are having their regular sight tests in hospital eye clinics as part of a suite of medical appointments. Very few are using their right to a free annual NHS sight test in a high street optical practice.
The system problem
Of the 1.5 million people with learning disabilities in the UK, it’s estimated that over 125,000 are blind or visually impaired and many hundreds of thousands simply need glasses. Across the UK there are few local initiatives to help people with learning disabilities get the eye care they need.
Some local authorities and health bodies do fund eye care professionals to visit children in special schools and in England there are five areas where there are promoted pathways of eye care for young people and adults with learning disabilities in the community.
In England these are initiatives dependent on local eye care professionals, commissioners or charities acting to fill the gap created by NHS England’s national budget and contract for NHS funded sight tests, the General Ophthalmic Services or ‘GOS’ contract (that pays optometrists a standard fee of around £21 for a sight test).
The fee structure does not take account of the fact that those with learning disabilities may need longer or multiple appointments in community optical practices or other settings, such as special schools. SeeAbility needed to see Nasir a number of times to complete his sight test, for which we received the same standard fee a high street optical practice receives. Our special schools work continues thanks to charitable donations.
People with learning disabilities also often say that they are put off by the possible costs of both sight tests and glasses. This is not helped by confusing means testing rules for NHS sight tests once someone is of working age. It means there are some people with learning disabilities who may have to pay for their sight test as well as their glasses, unlike people in other high risk groups who are entitled to an NHS funded sight test (such as those with a family history of glaucoma).
Importantly, people with learning disabilities, and specifically people with Down’s syndrome, will often need particular frames and fitting for their glasses. There can be a real struggle to access the right support here too and a need for repairs and spares.
What we would like to see changed
We recently launched a new report about the changes needed in the sight testing system. It was great to welcome to our launch event in parliament, Kate Powell and Vanda Ridley from the DSA.
- We would like to see each country in the UK establish nationally funded programmes for sight testing and glasses dispensing to be carried out in special schools. This would enable children with some of the most profound and complex needs to access their right to a free NHS sight test.
- Outside of special schools we would also like to see a nationally funded pathway of community eye care, so that children and adults with learning disabilities who need specially adapted sight tests know there is a community provider near them that can meet their needs.
- We believe working-age adults with a learning disability should be entitled to a free NHS funded sight test and that there should be a review of how people can better access spare glasses and more resilient frames to meet their needs.
- We also want people with learning disabilities to have their glasses dispensed and fitted by dispensing opticians or optometrists rather than unregistered staff.
Giving people the chance to see clearly and preventing sight loss will stop people with learning disabilities losing their independence, or becoming more reliant on high cost care and support. Crudely, these are the arguments we have to make to lever funding and a change in the system.
Simply on a human level, who wouldn’t agree that everyone with a learning disability deserves an equal right to sight?