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An equal right to sight

Optometrist and head of eye health at SeeAbility, Lisa Donaldson, tells OT  about the “totally unjust” cost of a sight test to people with learning disabilities

Sight test

There is good evidence that people with learning disabilities experience a higher incidence of refractive error than the general population. These refractive errors are often of higher magnitude as well.

Lots of studies indicate that even though this group are at a much higher risk of sight problems, they are much less likely to go for an NHS sight test. In our work in special schools, we’ve found that more than four in 10 children have no history of eye care, and the average age of the children we have tested is 10. We regularly come across adults in their 40s and 50s who have never had a sight test.

Most people with learning disabilities tell us that their number one concern when going for a sight test is being given time and understanding, and having things explained to them well. Some people might not be able to speak or read, and will need alternative ways of testing. Many people with learning disabilities will also have autism and might need familiarisation to help get comfortable with the experience.

Everyone is an individual but when you consider these needs, it’s irrational for NHS England or the Government to expect £21.31 to cover delivery of a sight test for most people with moderate to severe learning disabilities.

"People with learning disabilities are being left in a worse position than the rest of the general population, despite their high level of eyesight risk"

Complex needs

We estimate that our service costs £135 per child for their yearly sight testing needs, given that children may need multiple assessments, and that testing is limited to the school day and involves multidisciplinary input. 

The cost of a dispensing optician is included in this fee as our work has shown that their input is vital for successful adaption to glasses. Children with complex needs also often need specialist frames and modifications, as well as frequent repairs and replacements. 

Around 40% of children and 60% of adults with a learning disability need glasses. Our work shows that people with learning disabilities often need additional support to successfully wear glasses and adaption can take time.

Studies have found the public perception of the retail nature of primary eye care can put some people off going to the opticians because of worries about cost. People with learning disabilities are more likely to be in poverty than the general population and can share these worries. In 2016, we surveyed nearly 500 people with learning disabilities about what would help them better access sight tests. Over half wanted to know if it would be free. 

We are campaigning for people with learning disabilities to be eligible for free NHS sight tests alongside those with a family history of glaucoma or diabetes so this barrier can be removed. People with learning disabilities are a high-risk group that should be on this list.

A human rights issue

A frustration is that the NHS general ophthalmic services (GOS) forms do not collect data on disability, so there is no way of knowing how many people with a learning disability even get an NHS sight test. The moves to integrate the optical sector into NHS systems and the launch of the electronic GOS forms are the chance to start getting this data but we need learning disability to feature on the form.

Fundamentally, this is a human rights issue, which is why we call our campaign An equal right to sight. People with learning disabilities are being left in a worse position than the rest of the general population, despite their high level of eyesight risk. There is very limited provision to meet their needs and they are ineligible for NHS sight tests unless they can meet the burden of proving eligibility in other ways. This is totally unjust. 

Eye care and vision development officer at SeeAbility, Scott Watkin, offers his top tips for testing patients with learning disabilities

  • Talk to the person, not the carer or supporter
  • Ask how they communicate and understand information best
  • Use simple short sentences, don’t use long words or jargon
  • Explain and also demonstrate what is going to happen first.