Is NHS England breaking a promise to roll out eye care for disabled children in all special schools?

with Aylee Richmond, National Eye Care Information Officer, SeeAbility

A few years ago I woke up with vision loss in one of my eyes. It was frightening, but I was able to explain what had happened and within a very short space of time, an NHS specialist diagnosed a rare degenerative condition, Punctate Inner Choroidopathy. Fast treatment was vital and thankfully, most of my vision was restored. It may have been spotted earlier in an eye test, had I had one. I’m telling you this to explain how, while I was able to speak up and advocate for myself, if I’d had learning disabilities, and especially if I was a child with LD or autism, it may have been a very different story and I would have become progressively blind.

So this brings me to the importance of eye tests, especially for disabled children and adults who cannot easily explain when something has gone wrong in their body. The charity, SeeAbility, supports people who have learning disabilities or autism, who may also have sight loss. They’ve been working with NHS England to roll out an eye testing programme in special schools.

However, SeeAbility and the families they support are worried that the NHS may not be living up to what it’s said it would. This is of great concern for obvious reasons as explained above.

Aylee Richmond, SeeAbility’s National Eye Care Information Officer, is with us today to explain more about why it matters and how you can help.

Why is NHS England backing away from its commitment to eye testing in all special schools? by Aylee Richmond, SeeAbility

NHS England had signed, sealed and delivered on rolling out a new NHS Special Schools Eye Care Service for all special schools, but parent carers and special schools are now concerned that that the NHS could be rolling back on that commitment - leaving the future of the service at stake. But before going on to issues relating to special schools, I’d like to introduce our work.

Why eye care is vital for people with learning disabilities and autism

Sight tests are an important health check to have – particularly as it's estimated that 50% of sight loss is preventable. My job at SeeAbility and that of my colleagues who have learning disabilities, sight loss or who are autistic, is to get the message out there that these routine checks are even more important for people with learning disabilities.

Sight problems are the biggest co-morbidity that people with learning disabilities experience. Children with learning disabilities are 28 times more likely to have a sight problem than other children. Six in ten adults with a learning disability will need glasses.

We have developed lots of easy-read information, all the way from how to prepare for a sight test, to getting glasses and through to eye care surgery. We can offer advice for parents/carers and we are always happy to take enquiries or signpost to optical practices that provide specialist adjustments. Please take a look at our website for much more about our support.

Children with learning disabilities are 28 times more likely to have a sight problem than other children. Six in ten adults with a learning disability will need glasses.

Diagnostic overshadowing is common; targeted eye care schemes are needed.

The more severe a person’s learning disability, the risk of a sight problem escalates even further. So does the likelihood of sight problems being ‘diagnostically overshadowed’, or people just not being able to access the adjusted eye care they need. Tragic stories are emerging more frequently, like Sally’s, who as an adult unnecessarily lost nearly all her sight to glaucoma – a treatable issue if picked up early.

In my professional life, I have supported countless people with learning disabilities, many of whose high support needs or change in behaviour has been put down to their learning disability or another health issue. A sight problem was the last thing that anyone had considered, and that includes the need for glasses.

In England, the NHS sight testing scheme sets out eligibility for free sight tests to a large swathe of the population, including children. However, time and again we were finding that people with learning disabilities were not accessing their right to an NHS sight test.

Part of the reason is the system has a built-in disincentive to see ‘complex’ patients. Optical practices survive not on their NHS contract alone, but as retailers. The fees paid by the NHS in practices have stood around the £20 mark for a sight test for years, irrespective of the need of the patient. Services for people with learning disabilities are patchy at best and you may have even noticed some opticians are no longer seeing NHS patients.

James, a young boy wearing glasses for his first eye test with an optician wearing a face mask
James and his first eye test

Bringing eye care into special schools would be the start

Just as in other areas of healthcare, it was clear to us at SeeAbility that more targeted support was needed to make eye care easier to access for people with learning disabilities.

It’s almost 10 years now since SeeAbility first started running a clinical programme, with a team of optometrists and dispensing opticians visiting a number of day special schools in and around London to deliver full sight tests and dispensing glasses.

The work was built on earlier findings in day special schools across the UK, all of which had identified not just a huge unmet need for eye care (very few children had ever had an NHS sight test), but also a very high level of sight problems, most often a need for glasses.

By 2018, a clinical consensus had emerged based on our work and other studies, that providing eye care in all special schools (and glasses!) would not just be a great familiar environment for some of the most at-risk children, but also for parent carers who were struggling to find eye care services. The work also became pivotal for schools – helping adapt things in the classroom so children can make the best use of their vision.

Public Health England, and then NHS England, endorsed those recommendations.

One of the most striking things about the work was how often children were having to go to hospital eye clinics for their sight tests, and acknowledging how stressful that could be.

Yvonne Newbold MBE, author of the Special Parents Handbook recently shared her experiences with us: “I must admit the hospital appointments I dreaded the most were the eye clinic. The one-hour wait for drops that turned into two hours, the ‘judging looks’ in the waiting room as Toby got increasingly distressed. If someone had said he could have had his sight tests and get his glasses in his special school I would have bitten their hand off!”

Great moves forward

To its credit, by 2019 NHS England, being responsible for NHS sight test commissioning had set up a working group, advised by charities such as SeeAbility, as well as clinical experts and parent carers. Sally’s mum, Maureen, came on board to make sure that once the work had begun in special schools, reaching 140,000 children, work would move on to community eye care improvements. The aim was to reach children not in special schools, alongside adults who might also benefit.

So far so good, and by April 2021 NHS England had begun the rollout of the newly badged NHS Special Schools Eye Care Service. Now in 80 special schools and recruiting new eye care teams to deliver a service under a new NHS contract, SeeAbility is also using the contract to continue to deliver a service in schools in London.

You can also watch this parent and carer promotional NHS film here.

Excited by the findings, we have been feeding into the SEND Review team too - highlighting that so many children now can see and make the best use of their vision in their education!

However, a year and a half into the service, we recently started to hear that the national rollout had stalled.

Rolling out or rolling back?

Parent carers and special schools have been in touch with us to say they have been sent an NHS “evaluation survey”, that is now framing the service as a ‘pilot’, ‘formerly known as the “Special Schools Eye Care Service”’. Also that their contribution will help ‘shape the future of eyesight testing in residential special schools’ - this is the only commitment in the NHS Long Term Plan 2019.

Of the 80 schools the NHS has rolled out in, only a handful are residential. What is NHS England’s plan for the thousands of children in the day special schools using the service, and the thousands more who were due the service? What happens now to the children who have been discharged to the service from hospital eye clinics? We all need to know.

Sign our petition

One parent carer has started a petition to get all this work back on track - please add your voice to this. 

The professional has crossed into the personal for me on this. A few years ago, I had my son Harry, who has Global Developmental Delay and ASD. Among the challenges my little lad has with the health system, I had at least been looking forward to him getting eye care in his special school. Eye care isn’t a costly thing to provide at all. We are talking tens of pounds per child, but it is life-changing stuff. To coin a phrase from the SEND Review - this is the ‘Right Support, Right Place, Right Time’.

Are we seriously going back to fighting for our children to get an equal right to sight?

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Tania Tirraoro

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