Our colleague Aylee Richmond shares her very personal reason for making the special schools eye care service the best it can be for parents of children with learning disabilities, and her reaction to reading the detailed proposals for a national service. 

The health visitor had just left. There was a knock at the door and my friend was there at which point I burst into tears. “There’s something wrong with Harry” I said through my tears and collapsed in a heap on the floor.

I now know that Harry has a multitude of special educational needs and disabilities which include Autism, global developmental delay, XYY Syndrome, poor muscle tone, severe communication difficulties as well as Allergies and Asthma. 

We have had hundreds of appointments – occupational therapy, speech and language, paediatric assessments, blood tests, genetic specialists, wheelchair services, incontinence nurses, multiple meetings with nursery and school staff, SENCO meetings, LIFT Meetings, specialist teaching assessments, and of course the dreaded, gruelling EHCP assessment. 

When you have a child with learning disabilities, your whole life changes and your future is vastly different to what you thought it would be. Life is a rollercoaster and sometimes we wonder how we find any time to just breathe. 

Most children can have routine healthcare in mainstream services. Yet for families of children with complex needs we often find ourselves trying to access the impossible, even with the best will in the world from those services. 

Harry can’t communicate verbally, or understand and follow instructions, or sit still, or cope in a busy, crowded, inaccessible environment, or read a letter chart. So when I heard the wonderful news that eye tests would be available in special schools, I felt like a weight had been lifted from my shoulders!  

Harry attends a special school. Harry loves school. He loves his teachers.  He is happy in that familiar environment. So it makes perfect sense for health appointments to take place there, with people that understand his needs, help him communicate and build in reasonable adjustments.  

Why mess with success?

I have worked professionally in supporting people with learning disabilities and visual impairment for over 20 years. Now I am on the other side of the fence battling for services just to get my child’s needs met. 

The NHS proof of concept service clearly worked well and addressed a huge need by removing barriers to care. 51% of the children had never had a sight test before! 

But when I read the small print of the proposals for the new service it feels as if there will be new hurdles put in our way.

For example, how many parents will miss out if the service becomes opt in, instead of opt out as it is now? I know how difficult it can be to keep up with all the paperwork and miss filling in a form.

Too many children with additional needs miss out on the opportunity of access to glasses and the support to wear them, so the service provided robust, fit for purpose glasses, lighter lenses and spare pairs. Now there is a move to use glasses vouchers, so parents have of the choice of going to the high street. The impossible visit to the high street!

Voucher rules are also more restrictive. How many parents will now have to pay and ‘top up’ to get these glasses, how will we get a second pair now if they get broken? Then the sometimes long and challenging process of getting used to glasses will have to begin again if children are left without while replacements are made.

Specialist training and induction for professionals to deliver the service is under threat. So is the support of dispensing opticians who provide an essential service, with finding the right frames, and ensuring the right fit for glasses. How will we know who is qualified to meet the needs of our children?

So many questions and not enough answers.

Parents are tired. We are overwhelmed and undervalued, but we are also determined and resilient and we know what is right for our children. The service can work with parents as part of the solution without diluting down the key elements that are essential for protecting our children’s eye health.

Amongst all the challenges in accessing the support we need, NHS England has a golden opportunity to create a shining example of good practice with the special schools eye care service. 

Every child deserves an equal right to sight.