I knew my patient had arrived before he came into my clinic because his cries reverberated down the corridor.
The seven-year-old, who is autistic and non-verbal (communicates without words), was referred to me at Sunderland Eye Infirmary by his paediatrician because he found it difficult to have an eye test at a high street optometrist.
I went to meet him; his mother was distressed, other patients were avoiding eye contact and moving away, and the boy himself was hysterical.
I could not give up and use a lack of cooperation as an excuse – nor could I subject an unwilling patient to a barrage of tests.
This incident last year (which had a happier ending) reflects the balance practitioners must strike when treating patients with a learning disability.
We need a solution because we rely on sight to interpret the world – and eye examinations are even more important if you have difficulties with communication or with processing visual information.
I am also aware of these issues as a parent because my 16-year-old son Max is autistic and has global developmental delay.
The SeeAbility charity estimates that six in 10 people with learning disabilities need to wear glasses.
In 2013, the government published a report into the premature deaths of patients with a learning disability. Of 247 cases reviewed, 50% involved patients with visual problems.
We must adapt clinical pathways to help people engage with eye tests. Reasonable adjustments mean making allowances for individual needs, such as splitting a test over several appointments.
At my independent practice, we book acclimatisation visits and offer sensory toys, and we installed a bubble wall – a sensory water feature – in the testing room to help relax patients. However, what works for one patient might not suit another.
Clinicians must be flexible. I’ve worked in the NHS for over 25 years; we all tend to be guilty of institutional arrogance, believing the way we were taught to do something is the only way.
We need to be more creative. How we test vision and the use of music and distraction techniques, for example, can help us to get the information we need.
Overlooked
Another problem is that eye care for this patient group is not properly identified or funded.
Having a learning disability does not entitle you to an NHS-funded eye examination. If you are on your GP’s learning disability register, GPs will ask during your annual health check about eye health issues.
Eye tests are recommended yearly and some working-age adults with learning disabilities may be eligible for free tests but they are not a right.
In 2017, I was involved in improving the optometric service at a Durham school in a pilot for NHS England’s special school eye care programme.
This service has now been commissioned nationally, but the scope of it is under review by the government.
Back to my young patient who was too distressed to be tested in the clinic. We had a chat as he walked back to the car so he could start getting to know me.
Eye examinations are even more important if you have difficulties with communication or processing visual information.
I managed a bit of a basic test while he was more relaxed in his car seat – partly because he did not think he was being examined. He was set to see me again in the following month.
If you have a learning disability, you are more likely to have eye problems, more likely to need glasses, less likely to be able to access traditional clinical pathways and less likely to be able to engage in certain treatments.
Even if you have a great relationship with your optician or ophthalmologist, it is likely that part of your care is reliant on good will.
Eye care for patients with a learning disability deserves much more.
Simon Berry is an optometrist.
