Making eye care more accessible

At 100% Optical, a team from SeeAbility discussed how barriers to eye care can be addressed through LOCSU’s refreshed community learning disability pathway

optical equipment

Delegates at 100% Optical heard about the barriers that people with learning disabilities can face in accessing good eye care, and ways these can be addressed.

Presenting at the trade show (23–25 April), Trevor Hunter, SeeAbility’s London Eye Care Pathway for People with Learning Disabilities coordinator, and Grace McGill, SeeAbility expert by experience and eye care champion, outlined the need for a fresh approach in optometry.

The two have teamed up through a SeeAbility initiative to encourage the commissioning of community eye care pathways in London for people with a learning disability.

A refreshed clinical pathway for people with learning disabilities was published in 2020 by the Local Optical Committee Support Unit (LOCSU).

Describing the reasons that a new pathway was needed, Hunter first shared that there are over 1.3 million people in England with a learning disability, and about 20% – 30% of those individuals also have autism.

“Patients with learning disabilities need support, but they are all individuals and will need varying amounts of support,” he said.

Hunter cited statistics that suggest that an adult with a learning disability is 10 times more likely to suffer serious sight problems, adding: “that rises to 28 times more if they are children.”

Six out of 10 adults with learning disabilities need glasses, and work by SeeAbility in special schools revealed that 40% of students in these settings have never had a sight test.

McGill listed a number of the barriers that a person with a learning disability might face in accessing good eye care. These included accessibility issues in reaching the practice, or a lack of awareness from the person supporting the individual. Other issues included being unable to communicate vision problems, or being scared of the sight test.

Insufficient preparation was also highlighted as a barrier, if the sight test needs to be adapted or carried out in a different way for the patient, or concerns about costs ¬– as eligibility for free sight tests depends on the individual’s benefits.

“You do not need to be able to speak to have an eye test,” McGill emphasised.

LOCSU’s initial pathway has been in place since 2012, Hunter shared, but the newly-refreshed pathway launched in September 2020, supported by MenCap and SeeAbility to provide individualised eye care for people with learning disabilities.

Anyone aged 14 or over who is on their doctor’s learning disability register can access an annual health check, and Hunter shared that it is important that GPs are able to discuss eye care as part of a health plan, including signposting the patient to where they can access eye care.

“Sadly, they can’t do that in many areas, so they send the patient into the hospital eye service (HES),” Hunter said.

“There need to be better links between HES and primary care, both for us referring into HES but equally for them to have confidence to take the patients that they're seeing in their clinics and refer them out into primary care,” Hunter shared. With health services currently stretched, these links are really important, he said.

The refreshed pathway

Outlining aspects of the refreshed pathway, Hunter emphasised the importance of pre-appointment preparation, and providing documentation in an appropriate way.

For example, SeeAbility’s About me and my eyes form enables the optometrist to adapt their sight testing routine to the patient. 

A pre-appointment visit to the practice to meet the optometrist and staff can be beneficial, Hunter suggested, as well as booking the appointment at a quieter time of day.

Results need to be provided in a “usable, and easy-to-read format,” Hunter said, for the patient, their carer and the GP.

Training is also crucial. Hunter shared that his initial training as an eye care professional did not go into detail about working with patients who have learning disabilities, adding: “We need specialist training as clinicians.”

To be able to deliver the LOCSU community learning disability pathway, clinicians will need to undertake a series of six online training modules developed and reviewed by subject experts, in partnership with SeeAbility. Training should also be provided for staff, Hunter recommended.

Opportunities to engage

Considering the current uptake of the pathway, Hunter said: “If we look at the existing pathways, it is a little sad to see. Given that the original pathway came in around 2012, there are four pathways currently running out of 75 LOCs.”

This includes Sutton, Cheshire and Merseyside, Greater Manchester, and Durham, with another recently launched in Lancashire and South Cumbria.

NHS reforms represent a challenge when it comes to commissioning services, Hunter shared, as clinical commissioning groups change to integrated care systems and integrated care boards. However, it can also create opportunities.

In the past, the pathway for patients with a learning disability has possibly not been promoted enough, Hunter suggested.

“If you take other pathways as an example, you don’t need to promote pre- and post-cataract pathways, because they come to you,” he said. “But this is a pathway of hard-to-reach individuals. Therefore it needs to be promoted by advocacy groups, the GP service, the hospital eye service, and other primary eye care clinicians. We need to know which of our colleagues in our areas is on the pathway, and refer to them appropriately.”

Promoting the service

There are a number of steps optometrists can take to move the conversation forward, Hunter said, beginning with speaking to local optical committees and SeeAbility.

“Then a business case has to be prepared that will go to the commissioners. The LOC will help with that, the primary eye care companies will be involved, along with SeeAbility, local advocacy groups, and local councils. We need them to present that to the commissioners,” he explained, warning that responses may be mixed but that existing services can be used as examples.

Above all, Hunter said, is the need to continue to promote the service.

McGill agreed, adding: “Please, please, please promote it. Help people who don’t need to go to hospital for a sight test to be able to have it in the community.”

Hunter acknowledged that many eye care professionals do what they can at their own practices to support patients with learning disabilities, but said: “We need a pathway that will recognise the work that clinicians are doing out there and their expertise, and reward them.”

He noted that, at the current sight test fee, “you can’t expect to see someone three times, or for an hour and a half appointment. Clinicians need to be rewarded in some way. Commissioners need to understand that.”

Closing the session, Hunter summarised: “I think we’re doing these patients a disservice. Whilst not only helping to prevent sight loss and identify other health issues, people with learning disabilities also need to make the best use of their vision – it helps them improve their skills – after all learning, we’re told, is 80% visual.”