Funding visual impairment

We think funders should give more money to medical research and systemic change to achieve greater long term impact for people living with sight loss.

At present, most money goes to services which improve quality of life – just 3% goes to research.[1] These services are vitally important, but we shouldn’t neglect medical research and working towards systemic change – especially early stage research and areas where there is little profit incentive for pharmaceutical companies.

We’ve published this review of the visual impairment sector to help funders better target their giving. For any issue you need a healthy balance between reactive and preventative work. There is a trade-off between having a relatively certain impact on a small number of people in the short term and having a much less certain impact on a huge number of beneficiaries (at the medical, society, or policy level) in the long term.

More than two million people in Britain live with sight loss severe enough to significantly impact daily life,[2] with the number expected to double by 2050.[3] Of this, around 340,000 are registered blind or partially sighted. The leading causes are age-related macular degeneration (48%), glaucoma (16%), cataract (12%), retinitis pigmentosa (10%), and diabetic eye disease (8%).[4]

Many consider sight loss to be unpreventable, untreatable, even inevitable, meaning treatment is often sought too late. By giving more to medical research and working towards societal and policy change, funders could achieve greater long term impact for people living with sight loss.

This needn’t be at the expense of frontline services. The visual impairment charity sector is small compared with other health sectors. The combined income of its top 16 charities is less than that of the single biggest cancer charity.[5] There’s plenty of room for growth.

The overall visual impairment sector in the UK is complex, overlapping with different aspects of the healthcare system, social care, and many other sectors – and there is no national strategy for eyecare. Our research covers six areas where philanthropic funding could make a difference: children and young people, working-age adults, older people, mental health and isolation, disabilities and learning difficulties, and medical research. We examines what the NHS and local government are already doing, and where philanthropy can add value.

Most charitable funding for visual impairment comes from legacies, fundraising appeals, subscriptions, government contracts, and the Lottery. It does not seem to be a popular cause among trusts, foundations, or philanthropists, with very few dedicated funding streams.[6] More philanthropic funding therefore has the potential to make a huge difference in this sector.

We are grateful to the following people who we interviewed for this research:

• Age UK: Lis Boulton (Health and Care Policy Manager)
• Fight for Sight: Ranjeet Khare (Director of Development) and Madina Kara (Director of Research and Innovation)
• Guide Dogs: Carl Freeman (Senior Collaboration Manager) and Aileen Bradley (Head of Strategy)
• Macular Society: Cathy Yelf (CEO)
• Nystagmus Network: Sue Ricketts (Executive Information and Development Manager)
• RNIB: David Aldwinckle (Director of Insight and Customer Voice)
• Royal College of Ophthalmologists: Kathy Evans (CEO)
• Royal Society for Blind Children: Sue Sharp (CEO)
• SeeAbility: Lisa Donaldson (Head of Eyecare)
• Sense: Richard Kramer (CEO)
• Thomas Pocklington Trust: Charles Colquhoun (CEO) and Eamonn Dunne (Partnerships and Projects Development Manager)
• University of Cambridge and Cambridge University NHS Foundation Trust: Martin Snead (Director of Vitreoretinal Research and Consultant Ophthalmic and Vitreoretinal Surgeon)
• VICTA: Nick Schofield (CEO)
• Visionary: Fiona Sandford (CEO)

[1] Fight for Sight (2020) Time to Focus.

[2] RNIB (2021) Key Statistics about Sight Loss.

[3] RNIB (2021) Key Statistics about Sight Loss.

[4] RNIB (2021) Key Statistics about Sight Loss.

[5] List of top 16 charities taken from Fight for Sight (2020) Time to Focus. Latest incomes of these charities taken from most recent accounts submitted to Charity Commission. The charities (in size order, largest to smallest) are Guide Dogs, RNIB, Sense, Blind Veterans UK, SeeAbility, Moorfields Eye Charity, Macular Society, InFocus, Fight for Sight, Thomas Pocklington Trust, Catholic Blind Institute, Royal Society for Blind Children, Royal Blind School, Deafblind UK, Scottish War Blinded, Sight Research UK.

[6] One exception is the RS Macdonald Charitable Trust, which funds charities in Scotland. It has a ‘visual impairment’ portfolio, which formed 6% of its grants last year.