I met Nathaniel in his special school when he was 14 years old. His mum completed a history form and wrote in capital letters: ‘No useful means of communication/profoundly deaf/severely autistic/he won’t be able to have an eye test’. Mum wrote that Nathaniel had been given glasses as a young child, but they had got broken and it had been 8 or 9 years since he had worn them. He was in a class with 2:1 support for challenging behaviour, lashing out at teaching staff and fellow pupils, and he wouldn’t come into the room for his eye test. I dropped by his class for a couple of weeks to show him my retinoscope and try to gain his trust. After a few weeks, I was able to carry out retinoscopy at arm’s length in the classroom:, –16.00 D each eye! On that day, I could do little else in terms of clinical assessment, but was able to prescribe him a pair of glasses ordered by our dispensing optician; that was in 2015.
Nathaniel is leaving school this year. He breezes through all the elements of a sight test, with monocular visual acuities of 0.1 logMAR each eye using linear letter matching. He is going to college and has learnt British Sign Language. So many of the behaviours Nathaniel exhibited until 2015 were, in large part, most likely due to his high myopia but at the time were entirely attributed to his autism – lack of engagement and communication, holding things very close and associated frustrations that were manifesting as challenging behaviour. There are many other special school students across England like Nathaniel who have yet to meet an optometrist in school or in the community. There are also children missing out on accessing communication technology because speech and language therapists don’t know that these children would be able to see it with a pair of glasses. There are children who have been prescribed glasses but aren’t using them because they have rejected them and parents don’t understand the benefit they could provide if they persevered. There are children who cannot communicate that they are sitting with the teacher on their blind side, and get startled when people approach them from that side, because teaching staff don’t understand the significance of ‘a total right hemianopia’ written on a hospital report.
Half of all special school students in England have a significant problem with their eyes or vision, with at least a third needing refractive correction.1 Yet this vulnerable group have not been accessing community eye care, with only around 1 in 10 having ever been to a community optical practice and 44% of pupils having no reported history of any eye care (with an average age of nearly 11). These are some of SeeAbility’s findings from our work in 11 English special schools. Since 2013, SeeAbility’s team have provided over 3500 sight tests and more than 1700 pairs of glasses in English special schools.
In 2016 SeeAbility, with the Royal College of Ophthalmologists, the College of Optometrists, the Association of British Dispensing Opticians, the British and Irish Orthoptic Society and the Local Optical Committee Support Unit, produced a Framework for Special Schools Eye Care,2 which details a best-practice model of care for special school pupils. It recommends that routine comprehensive eye care and jargon-free eye and vision reporting should be offered to all special school pupils at least annually along with, where needed, spectacle dispensing, repair and replacement services. This model is now recommended by Public Health England as an alternative to school entry vision screening, which it acknowledges is not appropriate for special school pupils. In our peer-reviewed clinical findings only one child in the school entry age group passed vision screening.
NHS England has responded very positively to the findings of our work, previous studies of the eye care needs of the special school population and the publishing of the Framework paper, and has committed to providing this model of eye care in all English special schools.
It is worth reflecting on the broader context of healthcare for both children and adults with learning disabilities. There has been a sad history and a number of scandals: avoidable and treatable health needs have been overlooked, and sometimes ignored. At SeeAbility we used what we knew about these inequalities and the high likelihood of vision issues in this population from our own work and that of research experts in the field to make the case for targeted eye care and reform. The prioritisation of healthcare of those with learning disabilities and autism in the 10-year long-term plan, published in 2019, now underpins NHS England’s commitment to this programme.
Establishing the new programme in special schools will involve multidisciplinary collaboration between primary and secondary care, optometrists, dispensing opticians, orthoptists and schools, eventually reaching out to nearly 120,000 children in special schools. What we know from parents and carers is that this service is both wanted and needed for their children – helping their child get used to eye care in a familiar environment and with little interruption to their school day. Using your skills in this very special way is something we hope many eye care professionals will consider.
To find out more about NHS England’s Special Schools Eye Care Programme please contact me via l.donaldson@seeability.org.
