The right to sight

SeeAbility’s director of external affairs, Paula Spinks-Chamberlain, discusses the charity’s Children in Focus campaign

SeeAbility Children in Focus campaign

01 SeeAbility returns to its roots with its Children in Focus campaign.

Established in 1799  in London as the Royal School for the Blind, the charity provided education and support for visually impaired children and young people. Today we support adults with complex needs and sight loss. Through this work we began to notice that a lot of people who are accessing the services offered by SeeAbility are missing out on the vital eye care they require, despite research informing us that adults with learning disabilities are 10 times more likely to have serious sight problems.

02 We established Children in Focus is October 2013 in a bid to both transform eye care for children with learning disabilities, and to ensure that sight tests are available in every special school in England. 

Launching the initiative, we initially rolled out a sight test programme in three special schools in London, through which we can offer eye examinations and dispense spectacles in a familiar and convenient environment during school hours. We see children from the age of four up to 18 and attend most schools weekly during term time.

We decided to focus on providing eye care for children with disabilities in special schools as they are more likely to have profound and complex needs, and therefore potentially be at a high risk of sight problems. They are also less likely to be able to access community practices.

One great benefit about going into the schools is that you are bringing eye care into a more familiar place for the child. Straightaway you’ve helped reduce a child’s anxiety around having a sight test. It reduces the number of medical appointments that children have to attend out of school and the logistical challenges this can bring family carers. It’s also very efficient – if a child’s not able to attend their appointment, another child can be tested instead.

Since launching we have been expanding our service to more special schools within the capital and further afield, when funding allows. We are now working in eight schools in London, Buckinghamshire and Durham. However, we are a charity and as a charity, we have only been able to grow at the pace that we can afford, rather than to the levels the service is required.

While SeeAbility is by no means the only organisation attending special schools to provide eye care to children – there are some great practitioners offering similar services – we know that there are many gaps in the delivery of eye care to this group that need to be addressed and resolved.

"These children deserve an equal right to sight and its about working together to build a national programme that works for the child"

03 We estimate that children with learning disabilities are 28 times more likely to have series eye conditions than other children. 

Since we launched the campaign, we have been working in conjunction with Cardiff University’s Dr Maggie Woodhouse who has been supporting us in evaluating the findings from our service. We now have compelling evidence that a nation-wide service is required.

It’s terribly sad when we find a child who hasn’t been able to see properly for a number of years simply because they didn’t have glasses. But what’s worse is when you see a child who has permanent sight loss because they didn’t receive the eye care they required.

This spring we published our second annual report, entitled 28 times more likely, highlighting this worrying statistic.

In the last academic year alone (September 2014–July 2015), we have provided eye care to 258 pupils, dispensed 87 pairs of glasses, and provided 261 sight tests through the initiative.

Our second year of data both reinforces our findings from our first year of testing, and adds further evidence of need. Alarmingly, we have found that over half of children we tested had a vision problem; 43% of new children we saw had no history of eye care; 36% of the children we saw needed glasses and 75% of the children with no history of eye care were noted as being on the autistic spectrum.

There are around 100,000 children in special schools in England and if these findings are replicated nationwide then thousands of children with disabilities are missing out on the eye care they need.

04 Since establishing the programme we have evolved and adapted our testing model and now believe that we have something that can effectively be rolled out nationally. 

There are many benefits to the model that we have created, as it offers a complete pathway of eye care. Many children in special schools simply need glasses and because our model includes both an optometrist and a dispensing optician, we are able to prescribe, fit and fix spectacles – sometimes on the spot – as well as provide on-going support.

Without this service in a school, children could wait for weeks for their glasses to be fitted or fixed, meaning they are without the glasses and they continue to miss out on their education.

Another benefit is the two-way communication that occurs between the clinician and teaching staff, who are able to advise on where a child might sit in class or when it’s best to see a child and what effect their glasses are having in class. As a result of this close relationship, we have also been able to educate support staff and carers about the importance of eye care and have trained 118 learning and support assistants and teachers this year about the visual needs of children with learning disabilities.

05 We're now at a really exciting point in this campaign, with clinicians and organisations supporting the need for change. 

Not only have we secured a £308,000 grant from the Department of Health to help provide more eye care for more children with disabilities, the main eye care bodies have worked with us to develop a clinical framework for a national programme.

In February this year the Welsh Government published plans for a dedicated, national sight test service in special schools across Wales and now the onus is on NHS England to follow suit.

We would like to see NHS England develop a properly funded national programme that delivers free sight tests to all of the 100,000 children in special schools in England, and we believe that we have developed a robust model to allow them to do so.

A national model could certainly save the NHS money in the long term, preventing unnecessary sight loss and poor outcomes for this group of children and young people.

We are all acutely aware of the limitations of the general ophthalmic services contract, the need to reduce pressure on hospital eye clinics from routine eye care use and the decommissioning of many school vision screening services for children in reception year.

These children deserve an equal right to sight and it’s about working together to build a national programme that works for the child – giving them greater independence and a better education. I hope to see a national programme soon.