Improving Equity in Diabetic Eye Screening for People with Learning Disabilities

The Central Mersey Diabetic Eye Screening Programme partnered with NEC Health to make the diabetic eye screening pathways accessible to people with learning disabilities. The screening uptake improved year-on-year: 56.5% in 2023, 61% in 2024, and 70% by mid-2025.

The Challenge

For many people with learning disabilities, diabetic eye screening was simply not accessible:

• Learning disability status was rarely coded, leaving patients invisible in datasets

• Standard letters, clinic formats and visual tests were not accessible

• Appointments were too short for patients needing additional communication or reassurance

• Screeners lacked training and tools to adapt examinations

This led to disproportionately low screening uptake, higher DNAs and increased risk of avoidable, late-stage sight loss. The Health Equity Audit (HEA), funded by NHSE North West, confirmed that people with learning disabilities were a distinctly undeserved population whose needs were not reflected in the existing screening system.

Ambition and Goals

The programme adopted 4 guiding principles:

1. Be seen: Accurately identify and code all eligible service users with learning disabilities
2. Be heard: Understand individual barriers through direct engagement with service users and carers
3. Be respected: Introduce reasonable adjustments to make screening accessible and dignified
4. Be valued: Ensure service users helped shape improvements and felt recognised through process

The Partnership Approach

1. Data Intelligence and Identification: with support from the Data into Action programme, NEC and the DESP team transformed the screening database, increasing tagged learning disability records from 18 to 348 within six months and adding severity coding and cognitive status labels to each record. This visibility enabled tailored adjustments, personalised recall, and proactive outreach through additional data supplied by local GP practices and Knowsley Primary Care Network.
2. Tailored reasonable adjustments: Clinics introduced a wide range of adjustments – 51 picture-chart VA tests, 71 slit-lamp examinations, extended appointments, preferred AM/PM booking options, and easy-read communication – to meet individual needs. These changes made screening more accessible, patient-centred and respectful.
3. Improved communication and follow-up: The Improving Screening Uptake Officer proactively contacted non-attenders and those with previous unsuccessful screenings, creating a supportive follow-up process that reduced missed appointments.
4. Staff training and cultural development: Screening staff received dedicated training in communication and adaptive testing, which strengthened confidence, improved clinical consistency, and ensured smoother delivery across all clinical sites.
5. Community outreach: The programme built strong relationships with local learning disability forums, advocacy groups, carers’ organisations and charities, fostering trust, and raising awareness.

Impact

• Screening uptake improved year-on-year: 56.5% in 2023, 61% in 2024, and 70% by mid-2025.
• In 2024, the programme delivered 25 annual recall pathways, 38 two-year recall pathways, 16 slit-lamp referrals, 1 urgent retinopathy referral, and 1 non-DR ophthalmology referral.
• Reduced DNAs and fewer re-bookings
• More efficient clinic flows and better use of capacity

“Kelly who did my eye screening was lovely and kind to me… looking forward to seeing you next year.”
-Patient

“The young lady listened to how we give my son eye drops; he could not believe the difference – brilliant.”
-Carer

Conclusion

The Central Mersey Diabetic Eye Screening Programme has transformed access to preventative eye care for people with learning disabilities. Through collaboration, data intelligence, tailored adjustments and genuine patient involvement, it has closed a long-standing health inequality gap. This is population health in action – ensuring every patient is seen, heard, respected and valued.