Today, Siobhain led a Westminster Hall debate, and launched an Early Day Motion, to support the provision of sight tests in special schools.
Children with learning disabilities are 28 times more likely to have serious sight problems than other children. And around half of these children need glasses.
But disappointingly, they are far less likely to access the eye care they need including their right to a free NHS sight test. As we speak, undetected eye conditions are causing permanent and irreversible sight lost and poor quality of life amongst these children.
Siobhain spoke of these difficulties, and of the important work of the charity SeeAbility, which has been charitably funding sight-testing and glasses-dispensing at a group of special schools in London. They also work at Perseid School, Morden, which Siobhain visited last month to see the project in action.
The Rt Hon Alistair Burt MP, a Minister at the Department of Health, responded to Siobhain’s speech.
Her Early Day Motion (629) has already been signed by a number of MPs, and can be read here.
You can watch her speech online, or read it below.
‘I beg to move that this House has considered the provision of sight tests in special schools.
Every child has a right to a free NHS sight test. It’s vital that all children’s sight is assessed regularly and early on, as undetected problems can lead to deterioration or even permanent loss of vision.
But for children with learning disabilities this is an even more pressing issue. A relatively small number of students attend special schools, but they are most in need when it comes to eye care. These children also have a right to free eye tests, but often they experience serious obstacles to getting the eye care they need.
In fact, children with learning disabilities are 28 times more likely to have serious sight problems, and around half of the children in special schools need glasses. Yet, around 40% of these children have no history of sight tests.
Many have to go for specialist eye examinations in hospital, meaning more medical appointments and more time out of school. These appointments are also more expensive than routine eye checks. And for those not under the care of hospital, attending a high street optician can bring many challenges.
In the very worst cases, children with learning difficulties who cannot access the eye care they need can eventually suffer from ultimately preventable sight loss. They are unable to make the most of their vision, and are therefore losing out. Yet a good pair of glasses could radically improve the quality of their lives.
Therefore, I am calling on the government, the NHS and the Department of Health, to deliver eye examinations and dispense glasses to children in their special schools.
I’d like to draw attention to the excellent work of the charity SeeAbility, which has worked extensively in this area. The charity exists to support people with sight loss and multiple disabilities. Established in 1799 as the Royal School for the Blind, it now provides a range of services including residential care, and supported living, speech and language, and rehabilitation services.
Since 2005 it has run projects to address the health inequalities that adults and children with learning disabilities face. Indeed, its ‘Children In Focus’ campaign has attracted thousands of petition signatories, and support from well-respected professional bodies, including the College of Optometrists, the UK Faculty of Public Health and the National Association for Special Educational Needs.
SeeAbility’s work in this area is vital for so many reasons, most significantly because these children, who are most likely to suffer from the most serious sight problems, face the greatest challenges in accessing eye care.
While there are recommended guidelines for all children to be vision-screened at school-entry age of 4-5 years old that need to be followed, the issue is significantly more pressing for children with special needs.
When a child has severe, profound or multiple disabilities, they may not realise they have a sight problem. They may not be able to tell a parent or carer about it, or their sight problems might be overshadowed by other more obvious needs. All of this means that parents, teachers, GPs and others may not realise there is a problem.
SeeAbility has piloted an excellent project to offer sight tests for children in six special schools in London. It has used its own charitable funds and specially-trained optometrists and orthoptists to visit these schools to test sight and dispense glasses, including Perseid School in my constituency of Mitcham and Morden. Children, parents and teachers are all seeing the benefit of their important work. Perseid School is a community special educational needs school, rated outstanding by Ofsted. It offers an exceptional supportive atmosphere for children aged 3 – 19 who have severe and complex learning difficulties, including learners with an additional diagnosis of autism, physical or sensory disabilities.
SeeAbility came to Perseid with its proposal in May 2013, after having consulted the hospital eye clinic at Epsom and St Helier NHS Trust. One of the aims was to pilot the provision of eye examinations in the school that the clinic felt it was not necessary to see at hospital.
It was after I came to see the project at Perseid lower school in September 2015 that I felt so compelled to table this debate. The visit was eye-opening for so many reasons.
I discovered just how much eye health and vision information a skilled optometrist can get from a child who may not be able to respond verbally, or be able to read.
It was a real education to see the techniques that Marek, the SeeAbility optometrist I met, used to judge whether a child may need a pair of glasses, or if their vision is in more serious need of treatment. He was absolutely fantastic with the children.
I also met a super little girl called Ellie and her mum Alyson. In so many ways Ellie is just like other 9 year old girls. She is active and sociable, she loves music and chocolate, and her favourite colour is pink. Ellie was one of the first appointments of the day.
Ellie cannot speak and relies on her eyes to communicate by using Eye Gaze technology. Because of her condition, she has been attending the hospital eye clinic appointments to ensure her sight is regularly checked. Her vision is her primary means of communication, but it is vulnerable to deteriorating, making these check-ups absolutely crucial.
But Ellie gets very stressed having to go to the hospital for her sight checks. Taking time out of the school routine, and having the pressure to arrange this alongside her many other medical appointments is a logistical nightmare. Ellie also uses a wheelchair and is now tube-fed so this adds to the practical barriers she faces to accessing the eye care she needs.
I heard from her mum Alyson that SeeAbility’s work at the school has removed all of that stress, and she has the comfort of knowing that Ellie is getting good eye care in school. Ellie can get her eyes tested, and glasses dispensed and fitted at school by SeeAbility, which provides a much more familiar, comfortable and convenient environment.
After I met Ellie, a little boy who is autistic came in for his eye test. He is a nine year old that suffered sight loss in one eye in early childhood. Despite very little co-operation from the boy who spent most of the appointment walking around the room, Marek the specialist optometrist was able to assess that his one good eye was focussing well and that he didn’t need glasses.
It’s clear that it would be very difficult indeed for a standard community optometrist to assess the sight of children with special needs, like the children I’ve discussed.
These community optometrists rarely see a child with profound disabilities and may not be able to command the necessary experience and skills, or have access to the specialist equipment, that are so important. Furthermore, a child may get distressed in an unfamiliar dark room with lots of lights and menacing-looking equipment.
In stark contrast, SeeAbility’s regular visits to Perseid provide these children with the ‘safe’ environment they need to have their eye sight assessed. The team can introduce themselves and become familiar with children in the weeks preceding an appointment and during their regular visits.
Furthermore, a child can have parts of their sight test on different days, if necessary, in the event that they need time to become familiar with having a sight test. It is even possible, if a child is very anxious, to complete tests in the classroom or in a sensory room, where they often feel more comfortable.
Testing vision in the schools themselves is not only more familiar and reassuring to these children. It also reveals so much to the teaching staff, as well as parents, about how the children see, which can really maximise the potential of children with special educational needs.
The project has now been well-embedded in Perseid and the visits fit in well with the school’s day. As Head Teacher Tina Harvey has said: “It has been fantastic to work with SeeAbility and we fully support this initiative. Our pupils can’t necessarily tell us what they can or can’t see in the classroom and now we have that information. And parents aren’t having to worry about how to get their child to yet another medical appointment outside of school.”
Seeing as the Minister’s portfolio includes eye care, I sincerely hope that he will be accepting SeeAbility’s recent invitation to come to one of the special schools it is working in and to discuss the detail of its proposals, as I have done. I can assure him it is a greatly inspiring experience.
The work in Perseid school strengthens the case for the need for national reform of eye care for children with learning disabilities. Having provided 600 of these eye tests, SeeAbility’s pilot provides the most comprehensive study of children’s eyesight in special schools in England, with the help of Cardiff University’s School of Optometry and Vision Science.
The sight of vulnerable children is being failed again and again. The Early Vision Screening Programme, should be available to all young children when they first start school. But its present provision is subject to a postcode lottery.
Furthermore, suggesting the use of hospital examinations as an alternative for children with learning difficulties is not good enough. Hospital appointments mean more medical appointments, more potentially distressing locations, and more expense for the NHS. For instance, the average reference cost for a paediatric ophthalmology appointment is £115. And where children had been discharged from a hospital eye clinic, SeeAbility found that 75% of them had no subsequent follow up sight tests in the community, leaving these children “lost to the system”.
The compromise is unacceptable. The tragedy is if children go without sight tests they can suffer unnecessary sight loss, and live their lives with poor vision, just for want of a decent pair of glasses.
My colleagues may be surprised that appropriate checks are not already happening in schools. A few health bodies do fund local NHS services similar to SeeAbility’s but the vast majority do not, meaning appropriate care for these children is limited.
I am sure the Minister will agree with me that it is not acceptable for these children, who are so much more likely to have serious sight problems, to be reaching their teenage years having never had a sight test or the opportunity to see clearly. We need a more preventative and beneficial method, and we need to commission a new national programme of eye examinations and glasses-dispensing to children and young people directly to special schools.
The Minister may highlight that it is for NHS England to decide its priorities as to eye care commissioning. To their credit, NHS England officials have been very engaged in SeeAbility’s work. However, the Department of Health plays a crucial role in shaping legislation and establishing a payment regime for sight tests.
It does the latter under the General Ophthalmic Services (or GOS) contract. But the associated contract fee rates for sight testing are compounding the inequalities in eye care that I have described.
This does not sit well with the fact that addressing the health inequalities of people with learning disabilities is a shared priority for both the government and NHS England. Indeed, this sits well within the Health Secretary’s legal remit.
In August 2015, SeeAbility was awarded a GOS contract to run NHS sight tests in the special schools it is working in, but this only provides a £21.31 payment per sight test, the same amount paid for a routine test in a high street optician. But SeeAbility estimates that the actual cost of their tests to be around £85.
This means that the charity is having to fundraise to keep the important project going because this is only a quarter of what it actually costs to deliver eye examinations to these children.
As I have described, the sight tests provided by SeeAbility and others are specially adapted to the needs of the children, requiring specialist expertise and equipment. Furthermore, the participation of skilled orthoptists is often needed, who can assess unusual and uncommon abnormalities of eye movement. Specialist dispensing opticians are also needed, who are experienced in fitting glasses for children with special facial characteristics.
In light of this, can we truly accept this inadequate fee, which represents only a quarter of the overall cost of providing these adapted tests? Especially in light of the fact that the overall costs also covers the cost of what is often a longer, specially adapted test, or any repeat visits to a child in a special school?
The current status quo ill-advisedly applies a ‘one size fits all’ approach to what is a complex issue.
The needs of children with learning disabilities are varied and often unique, and these children need eye care provision that reflects that. We all know there are funding pressures on our health and social care systems, but the eyesight of children with learning difficulties is not a sacrifice that should be made.
In a few instances, there is already some recognition that these adjusted and specialist sight tests need proper funding.
This extra, local support sometimes comes in the form of local commissioners paying optometrists an additional £60 towards supporting someone with a learning disability to get a sight test. Though a good step forward, it must be noted that this occurs only in a handful of areas.
Furthermore, the Department of Health has set enhanced fee rates for disabled adults to get a sight test at home if they cannot leave the house unaccompanied.
Clearly, some officials already recognise that specially-adapted tests cost more. I sincerely hope that the Minister will acknowledge the fact that his department’s set NHS payment of £21.31 does not cover the cost of these tests whatsoever.
Furthermore, I hope he will agree to open a consultation on the matter, as may be the case in Wales, on how to cover the shortfall between GOS contract payments and the cost of providing this type of specialist service. The provision of a reliable long-term alternative is essential.
The relatively small number of children in special schools should mean that a fully-funded NHS programme to address these children’s needs is wholly realistic.
Indeed, the quality of vision, and quality of life, of these 100,000 children should not be left up to a postcode lottery in our 209 separate Clinical Commissioning Groups.
These children need a “one stop shop” for optometrist, orthoptist and dispensing optician input as needed, with glasses provided on-site, breakages repaired quickly, and good links to hospital eye clinics if necessary.
In turn, a fully comprehensive and tailored system would help to reduce high NHS costs from unnecessary hospital visits.
The programme should be wholeheartedly supported by the Department of Education too, which purports to help children with special educational needs achieve their full potential. Let us be clear: this target will not be met if a child isn’t provided with the best possible eye care.
Myself, and SeeAbility, eagerly await the Minister’s indication of support for a nationally-funded programme of sight tests in special schools, and a commitment to meet with us to discuss these plans further.
And I urge all Honourable Members to consider signing EDM number 629 to support the provision of these sight tests.
The eye sight of children with special needs has been let down for too long. We look forward to this vital issue being treated with the seriousness it truly deserves.’
You can read more about SeeAbility's work, including their 'Children in Focus' campaign,
on their website.