There are around 351,000 children in the UK who live with a learning disability according to Mencap, and these children are 28 times more likely than the average child to have serious sight problems. However, a report released by special needs eye care charity SeeAbility in 2019 found that only one in 10 of these children had any history of attending a community optician.
Following the release of that report and campaigning from SeeAbility, NHS England has committed to the charity’s blueprint and is now rolling it out across the country. The model sees optometrists and dispensing opticians embed themselves with special schools, providing the children that attend them with a stable point of contact and a familiar environment that can more easily accommodate the needs of the students.
However, NHS England’s programme is no cure-all for the issue of access to eye care for children with learning disabilities. Many children with Down’s syndrome, ADHD or autism (not a learning disability, although around half of autistic people may also have a learning disability) attend mainstream schools and still rely on more traditional high street or hospital optometry.
Demand for services
Outside of SeeAbility’s model there is still widespread demand for eye services catered towards children with learning disabilities, as the practitioners at Portsmouth University’s new eye clinic found out.
‘When we started up our specialist clinic to provide appointments for patients with down syndrome we were surprised at the demand,’ says Daniel Stride, optical clinic manager at the University. ‘I was expecting maybe two or three patients in the first year, but we ended up with that many appointments in the first couple of weeks. We’ve already had patients travelling to us from Bournemouth, so the word is spreading.’
Stride and the team at Portsmouth’s eye clinic were surprised to find many patients with down syndrome were travelling as far as Cardiff for eye tests, to visit Maggie Woodhouse’s Down’s Syndrome Vision Research Unit. While Woodhouse’s clinic provides leading care in this specialist area, having to travel from the south coast of England to South Wales for an eye test is far from ideal.
Portsmouth University’s new specialist clinic makes use of sensory toys and tools to help relax patients
But something is providing the impetus to patients with learning disabilities to travel this distance, something is motivating them to journey outside of their own communities for care that, in theory, they could receive on their local high street.
How can opticians help to accommodate these patients in their practices? ‘The main thing that helps people with learning disabilities access care at our clinic is the environment and time we can spend with each patient,’ explains Stride.
The Portsmouth clinic is funded by the university and can spend as much time as is necessary with patients, ensuring that they are fully comfortable with every procedure. ‘You might not even get the full result you want from a test,’ says Stride. ‘The other day one of my colleagues saw a patient that didn’t want to enter the testing room, so she let her sit where her parent would usually sit and performed a vision test from outside the room. You almost have to let the patient lead the session until they’re comfortable.’
Adjustments for patients
As helpful as it is, providing as much time as needed to patients with learning disabilities is not possible for most practices that must consider their bottom line.
There are changes that high street practices can make to create more accessible environments, however, regardless of how much they already do. These changes need not be wholesale either. Small changes to your practises can create big benefits for your patients.
‘When I lecture on this subject I talk about three principles to consider as part of the patient journey: flexibility, professionalism and creativity,’ explains Simon Berry, optometrist and eponymous owner of Simon Berry Optometrist just outside Durham. ‘It’s difficult to list specific examples of methods because what might work for one child does not work for someone else, but if you think about these three things it is easier to make those reasonable adjustments.’
Berry opened his practice in 2002 with the aim of making it an accessible and welcoming place for all patients in his community. The practice is now widely regarded as a leading light in providing specialist care to those with learning disabilities and other special needs.
Optometrist Simon Berry in his practice
‘We didn’t set out to become specialists in seeing children with learning disabilities, it just happened naturally,’ he says. ‘The more patients we saw, the more we changed things to try and help them in better ways and with recommendations the service we offered grew.’
Berry now lectures on the issue of improving practices’ abilities to cater to patients with learning disabilities but doesn’t believe that too much is needed to begin. ‘The most important thing is the mindset to get started,’ he says. ‘These children are patients that need help like any other patient, the difference is that they often can’t access the clinical pathways that we have in place so we need to think a little more about what we’re doing and why we’re doing it.’
New patients at Berry’s practice are offered acclimatisation visits and longer appointments to help them become comfortable with the environment before they attend what can be an intimidating examination.
Stride agrees that small changes can make a big difference: ‘Doctoring our approach to each patient is really important. We make pre-appointment phone calls to find about the little things each patient might need, like whether they’re sensitive to bright lights or they’d prefer to be in our bigger room.’
Anthea Reid, an optometrist at Portsmouth’s new clinic and a colleague of Stride, adds: ‘There’s no need to reinvent the wheel as there’s already so many good resources out there. The SeeAbility website has been invaluable and we send out some of their leaflets with our appointment confirmations to help our patients and their parents or carers know what to expect at their eye examination.’
Communication
One of the easiest changes practitioners can make to help their patients with learning disabilities feel comfortable is improving and tailoring their communication. Berry says: ‘Communication is incredibly important; the examination is never going to go right if you can’t communicate with the person you are trying to provide a service for. Imagine going for a haircut when you couldn’t tell the barber what you wanted, but they got the clippers out anyway.’
Simon Berry uses these sensory tiles as stepping stones to get his patients from the bubble wall to the testing chair, which he finds helps patients
Lisa Donaldson, SeeAbility’s head of eye health, believes communication is the most vital part of the process. ‘One thing I do is demonstrate absolutely everything first, so in most eye tests I do everything twice. I have two pairs of occluding glasses, for example, and will let the patient’s parent or carer wear one pair while I show the patient what to expect. It’s also important to present the patient with choices, so I’ll ask them which pair they want to give to mum and which pair they want to wear.’
She adds: ‘A lot of children, particularly autistic children, don’t like surprises so making sure they feel prepared can really help the test run as smoothly as possible.’
While you should make sure to address the patient rather than their parent or carer, communication with the decision maker is just as vital. ‘Parents can think, completely understandably, that because their child didn’t sit still in the eye test or read the letters that we can’t have got an accurate result and are just guessing, says Donaldson.
‘If the patient then rejects the glasses it’s important to explain that refractive correction is a physical measurement of the eye that we can prescribe glasses for just by shining a light into their eye, rather than have them think we guessed a prescription and got it wrong.’
Specialist equipment
Purchasing equipment specifically to treat patients with learning disabilities may, like providing longer appointments, not be financially viable in every instance.
However, one piece of equipment that is incredibly useful for performing eye exams on a patient that might not always sit still has become much more common due to Coronavirus.
‘The Optos Optomap has become more common on the high street during lockdown and is fantastic for children when getting a view inside the eye is trickier,’ explains Reid. ‘It provides a coloured light to look at and takes a whole scan of the eye within milliseconds, meaning you don’t need to stress a patient by getting them to sit still for a prolonged period.’
The equipment you use need not be strictly clinical either. Berry makes use of sensory tiles and a bubble wall to help patients relax. He adds, ‘Our engagement packs have worked well in my practice too. These are rucksacks filled with things like ear defenders, fiddle toys and other small toys. If we have a patient who is becoming distressed we reach for the rucksack to distract them. ’
Looking ahead
No matter how many adjustments you make to your practice and methods, some children with learning disabilities have such complex needs that they will continue to require specialist appointments. There is always scope to improve, however, and when so many children with learning disabilities feel uncomfortable attending appointments locally it is vitally important that more is done to help them in their communities.
SeeAbility is currently pushing for a complex needs care pathway to be created so that patients in their special schools model can transition into adult care in the community.
In the meantime, why not explore what you can do to make your practice more accessible? Working with children with learning disabilities can provide a clinical challenge that you might not otherwise experience. As Berry says: ‘It’s certainly never a dull eye test.’