Calls for better eye care

A letter to Rt Hon Sajid Javid MP, Secretary of State for Health and Social Care and Amanda Pritchard, Chief Executive of NHS England – 8 June 2022:

Dear Secretary of State and Amanda,

Improving eye care for people with learning disabilities

We are writing to you to renew our calls for an equal right to sight for people with learning disabilities and ask you to take action.

With a refresh of the Long Term Plan, and a White Paper on health disparities due soon, there is an opportunity to make eye care much more accessible for people with learning disabilities.

Our coalition of voices and organisations have championed efforts to improve eye care for people with learning disabilities for many years, whether it be better awareness and training, to accessing sight tests and sight saving treatments, or ongoing support to live with a sight problem.

There are alarmingly high levels of sight problems amongst people with learning disabilities, adults with learning disabilities are 10 times more likely and children with learning disabilities 28 times more likely to have a serious sight problem compared to the general population. The more severe a person’s learning disability is the more likely they are to have a serious sight problem, but less likely to be self-reporting an issue.

Sight problems are in many cases very treatable, however many people with learning disabilities are not accessing their right to NHS eye care. As an example at least 4 in 10 children who attend special schools have never had any eye care. In other studies half of adults with learning disabilities had not had a sight test for over two years.

The mechanisms to tackle these eye health inequalities are lacking at a national level. The national NHS sight testing system constrains what is possible and, in many cases, this leaves people with learning disabilities using hospital outpatient services or reliant on charitable or local initiatives to fill the gap. To NHS England’s credit it had started to address this inequality through a new NHS Special Schools Eye Care Service, but we are all concerned that the expected rollout for all special schools appears to have stalled.

The health inequalities experienced by people with learning disabilities are amongst the very worst experienced by the general population. The way Covid-19 further exposed the health inequalities experienced by people with learning disabilities means reforms are even more vital.

SeeAbility’s eye care champions have set out their 10 calls for reform from lived experience, launched to coincide with the World Health Organisation Integrating eye care guide for action on 24th May. Key calls we would like to highlight and support, are those that NHS England and DHSC have the power to implement:

• Continuing the expected rollout of the NHS Special Schools Eye Care Service in all special schools, and ensuring there is the national funding and national commissioning certainty it needs long term.
• Directing Integrated Care Systems to introduce a learning disability eye care pathway in their areas as an enhanced eye care service for children not attending special schools and for adults with learning disabilities.
• Amending regulations so everyone with a learning disability is eligible for an annual NHS sight test as a new ‘high risk’ group eligibility category, aligned and co-ordinated with the right to an annual GP health check.

These improvements would not just meet duties to address health inequalities but also reduce pressure on outpatient eye clinics as part of the new NHS transformation programme. We also urge you to ensure that people with learning disabilities are being identified and prioritised to have the treatment they need given pressures on waiting lists.

People with learning disabilities are dying of avoidable health issues, at least two decades on average before their peers. The Covid-19 pandemic has exposed these health inequalities further. We cannot have the situation that people with learning disabilities are experiencing preventable sight loss as well.

We look forward to hearing from you* and would welcome the opportunity to meet to discuss how together we can reduce these health inequalities.

Yours sincerely,

Lisa Hopkins, Chief Executive, SeeAbility and Lance Campbell, Joanne Kennedy, Rebecca Lunness and Grace McGill, SeeAbility Eye Care Champions team

* If you would like to respond c/o SeeAbility, it will ensure that the letter is circulated to all co-signatories below.

ACE Anglia, Association of British Dispensing Opticians (ABDO), Association of Optometrists (AOP), Beyond Words, Jim Blair, Learning Disability Nurse Consultant and Associate Professor (Hon) Learning Disabilities Kingston and St.George’s Universities, Rt Hon the Lord Blunkett, Bradford People First, British and Irish Orthoptic Society (BIOS), British Institute of Learning Disabilities (BILD), Bury People First, Calderdale Self Advocacy Network, Ryan Campbell CBE and Treloar’s, Cerebra, Certitude, The Challenging Behaviour Foundation, Choice Support, The College of Optometrists, Contact, Council for Disabled Children, The CVI Society, Rt Hon Sir Edward Davey MP, Down Syndrome UK, Downs Side Up, Down’s Syndrome Association, EQUALS, Clive Efford MP, Clenton Farquharson MBE, Federation of Leaders in Special Education (FLSE), Fight for Sight, FODO – The Association for Eye Care Providers, Foundation for People with Learning Disabilities (FPLD), Future Directions CIC, Get on Down’s, Glaucoma UK, The Guide Dogs for the Blind Association, Professor Chris Hatton, Manchester Metropolitan University, Baroness Hollins, Inclusion North, Incontrol-able CIC, Keratoconus Group, KeyRing, Learning Disability England, LOCSU, Lord Low of Dalston CBE, MacIntyre I4t (Inspired for Training), Macular Society, Marsha de Cordova MP, Siobhain McDonagh MP, Paula McGowan OBE, Medicine in Specialist Schools (MiSS), Mencap, Moorvision, Nasen (National Association for Special Educational Needs), National Development Team for Inclusion (NDTi), National Down Syndrome Policy Group, National Sensory Impairment Partnership (NatSIP), Yvonne Newbold MBE, North Somerset People First, Nystagmus Network, Opening Doors, Pathways Associates, People First Keighley and Craven, Professor Rachel Pilling, Professor of Special Needs & Learning Disability Eye Care, University of Bradford, Portsmouth Down Syndrome Association, Positive about Down Syndrome, Primary Eyecare Services, RCGP Special Interest Group for Learning Disability, Respect in Bexley, Bexley Mencap, The Royal College of Ophthalmologists, RNIB, Professor Kathryn Saunders, School of Biomedical Sciences & Centre for Optometry and Vision Science, Ulster University, School and Public Health Nurses Association (SAPHNA), Sense, Professor Darren Shickle, Professor of Public Health, University of Leeds, Sibs, Special Schools Voice, Sutton Vision, The Ups of Downs, Thomas Pocklington Trust, Baroness Uddin, VIEW (The professional association for the vision impairment education workforce), Vision Foundation, Visionary, VoiceAbility, Voluntary Organisations Disability Group (VODG), West Berkshire Learning Disability Partnership Board, Dr Margaret Woodhouse OBE, School of Optometry and Vision Sciences, Cardiff University, The Worshipful Company of Spectacle Makers