Effectively managing patients with learning disabilities

Understanding scope of competence when managing the learning disability patient group was the focus of a SeeAbility peer review at 100% Optical.

The session, entitled Special schools and Easy Eye Care in the community, was led by SeeAbility’s head of eye care, Lisa Donaldson, and the charity’s clinical lead optometrist, Malvi Patel.

The three case studies presented encouraged practitioners to consider how they could maximise both positive visual and quality of life outcomes for this patient group.

The 12-year-old with Down’s syndrome

The first case study focused on Pritesh, a 12-year-old with Down’s syndrome who had been discharged from the hospital eye service (HES) two years earlier.

Pritesh has had glasses since he was six years old, Donaldson explained, but they were broken before the summer holidays and he is now struggling with close work.

Donaldson emphasised that 80% of children with Down’s syndrome have lag or poor accommodation, and that near vision should be checked as part of every eye test on any special needs child.

Attendees discussed how cycloplegic refraction would be unlikely to be needed, and especially not during the first visit, because the patient would have had this whilst under the care of the HES.

It was noted that cycloplegic refraction could be a strong negative for children with learning disabilities, who could be left traumatised by the procedure.

The group concluded that Pritesh should be fitted with a bifocal for the lower pupil, placed higher than would be the case for an adult patient.

Evidence shows that accommodation can be improved and lag reduced when children are fitted with bifocals, Donaldson noted.

She also explained that people with Down syndrome have a much higher risk of keratoconus than the general population.

Children with Down’s syndrome who have corneal distortion should see a corneal specialist as soon as possible, Donaldson said.

Donaldson also advised that the follow-up appointment for a patient in Pritesh’s circumstances should be with the dispensing optician.

“It is the responsibility of the dispensing optician to see people with special needs, as [part of] your caseload,” she said.

Practitioners should not wait a year until Pritesh’s next sight test to ascertain whether his bifocals are working as expected, Donaldson said, because if they have been discarded during this time a year of progress in reading will have been lost.

The autistic, non-verbal 17-year-old

Case two discussed James, an autistic and non-verbal 17-year-old, whose mother has explained that the team will not be able to test him because he is anxious and likely to lash out.

Attendees were told that James had last had an eye test as a seven-year-old, where he was left traumatised by the use of eye drops and as a result did not wear the glasses he was prescribed.

It was also noted that he is unable to make eye contact with the optometry team.

The group considered the actions they would take if James was unable to enter the testing room, what adaptations to his routine might be needed, how his refractive state should be assessed, and what other information would be needed about his visual function.

They also discussed the best prescription, what steps could be taken to support successful use of glasses, and whether he should be referred.

The discussion highlighted that there is no reason why James could not have been tested outside the testing room.

The importance of consistency, for example wearing the same colours as on the previous visit or sending a photograph to the parents beforehand so that James could recognise the optometrist, was also emphasised.

It was also noted that people who are non-verbal are not necessarily not communicating, because “every movement is a form of communication.”

If the patient recognises the practitioner they should try to work out if this is auditory, or if they still recognise you when you’re silent, the group noted.

Donaldson emphasised: “Just because someone can’t speak, don’t assume they can’t understand.”

Every question should be directed to the patient themselves rather than the parent or carer, she said.

She also recommended the Peekaboo Vision iPad app, which is CE-marked as a Class 1 medical device and is designed to help estimate vision in children.

An attendee with an autistic son also noted that she finds looking over his shoulder where possible when speaking can be helpful, as people with autism are often uncomfortable with eye contact.

Donaldson also emphasised the value of waiting for the best moment to perform the required checks.

Distracting the patient with something that interests them, for example a video of a train on YouTube, was also advised.

Donaldson also noted that allowing the patient to try on old frames at home, without the lenses, can be helpful in allowing them to feel comfortable wearing them.

Ensuring that measurements are already taken means the patient doesn’t have to be seen again and that the parent or carer can make the order themselves when appropriate, Donaldson said.

She also highlighted the importance of ensuring that the patient’s GP is looped into all communication, so everyone who is involved in their care has full clarity.

“Please prescribe,” Donaldson said. “Don’t just send a letter saying he is minus eight. Get him in glasses.”

The 19-year-old with cerebral palsy

Case three discussed Emma, 19, who has cerebral palsy and limited speech and head control, and attends a Special Educational Needs college.

Donaldson noted that Emma is in an electric wheelchair, and is able to maintain a good level of eye contact.

Her sister has asked about her potential eye care needs, Donaldson explained.

The group discussed whether visual fields would need to be checked, what to do if access to the visual screener was difficult, whether a written report would be important, and what information should be included for both Emma and her sister if so.

Whether Emma would be a good candidate for EyeGaze software, due to her accurate fixation and good eye contact, was also considered.

Because 30%-40% of people with cerebral palsy have hemianopia, Donaldson emphasised that all tasks should be carried out from the patient’s ‘good side.’

Patel emphasised the benefits of gamifying the eye test experience for those with learning disabilities, through the use of toys and lights where appropriate.

“Keep it fun, like you’re playing games,” she said.

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“They still have an equal right to sight”

Could you tell me about the importance of your session?

Malvi Patel (MP): Most people don't know the statistics behind children and people with learning disabilities. Having learning disabilities doesn’t make them any lesser in society. They still have an equal right to sight. Why should they be missing out? And also, clinicians don't know how to test people with learning disabilities. I didn't know how to test people with learning disabilities before SeeAbility. It’s really important that everyone knows that they can test them, and that there are ways of testing them.

Lisa Donaldson (LD): We did try to design the cases so that they represented the kind of situations that we see right at the beginning. We tried to give an opportunity to sow some seeds with practitioners. We’re passionate about having learning disability, and more broadly complex needs, as a specialism in itself, because it is.

We’re not all going to be able to be really good at it. It’s for the people who come and speak to us afterwards, who are really inspired to make it their special interest.

What would you say was the most important point that came out of the table discussion?

LD: I think there were a lot of unknowns. For example, we talked in the first case about lag accommodation. They had no idea there was something called dynamic retinoscopy, where you could check that objectively. The knowledge is just not out there.

MP: We’ve half joked about having this as a specialism. But it is so important, because then the training they would go into could be started via a separate module in universities for testing people with learning disabilities, so that they are doing the right tests, and tailoring each eye test.

If you could have the ear of policymakers, what would you say around eye care and patient pathways?

LD: When we talk about the local population, every population has people with learning disabilities and autism. We would like to see a policy change where learning disability listed as an entitlement for a sight test.

MP: Most of them are eligible for other reasons, but lots of people still get turned away. But if it was on their form as a box to tick, they would just put it through. Also, it should be annual.

LD:The probability of those with learning disabilities needing eye care is enormous. They are so vulnerable; they definitely should be entitled to more.