Every experience counts: Insights from our sight loss survey
A huge thank you to everyone who completed our 2025 sight loss survey. This year we received over 600 responses. It follows similar surveys in 2019 and 2022 which led directly to the introduction of our Unlock Genetics and Discover Wellbeing resources, as well as shaping our work with the professional community who support people with inherited sight loss.
The 2025 results provide a valuable insight into the continuing challenges faced by people living with inherited sight loss. They highlight where progress is most needed and help us shape Retina UK services and priorities so that we can respond effectively to current needs within our limited resources, recognising that it may not always be possible to meet everyone’s expectations. As a relatively small team, we know that collaboration is essential and we join forces with others across the sector to strengthen our collective voice and where appropriate we will signpost to other sources of information and support. We also recognise the importance of reaching under-represented groups within our community and acknowledge that more work is needed in this area.
Genetics
Over four in 10 respondents (43%) said they have received a genetic diagnosis for their sight loss condition. A slight increase on 2022 (39%).
Since 2019 there has been a considerable increase in the proportion of respondents who were able to name their specific genetic diagnosis with 29% of respondents in 2025 able to provide the name of a gene.
Quality of life
Half of respondents (43%) say their sight loss has a severe or very severe impact on their quality of life – slightly higher than in 2022.
People who’d had contact with Retina UK were far more likely to say they knew how to manage their sight loss and had support (76% compared with 61% of those not in contact).
Diagnosis
Experiences of receiving diagnosis appear to have returned to a positive upward trend, following a dip during the pandemic. The proportion offered emotional and psychological support at diagnosis is increasing. This is very encouraging.
Almost four in 10 (38%) of those diagnosed in the past five years were told about the support available from Retina UK, compared with a low of 18% for those diagnosed 5-10 years ago. We will continue our work to encourage referrals in the future.
Technology
Respondents use a wide range of aids, in particular, in-built accessibility features of smartphones and tablets, as well as flashlights and illumination devices.
When it came to the barriers for accessing aids 38% said cost is a significant cause and 25% reported they were not confident to use it.
Research
Retina UK remains the top source of research information. As with previous surveys, awareness of research is much higher among those who have engaged with Retina UK compared with those who haven’t (49% compared with 28%).
There was a small increase in the proportion who said they had participated in research – 24%, compared with 20% in both 2022 and 2019.
Join the Retina UK Lived Experience Panel to hear about opportunities to take part in research-related activities. Visit RetinaUK.org.uk/lived-experience or call our office on 01280 821334.
Mental health
Anxiety (77%) and loss of confidence (73%) continue to be the biggest emotional or psychological impacts of sight loss, though more people reported anger than in 2022 (47%).
While half referred themselves for support, the proportion referred by a healthcare professional increased to 40% from 33% in 2022. Respondents reported shorter waiting times, with one in four receiving treatment within two weeks of referral.
Attitudes to Retina UK
Online search continues to be the main way recently diagnosed respondents find their way to Retina UK, though signposting from health professionals remains an important referral route.
- Most agree Retina UK is approachable, trustworthy and ambitious on behalf of people with sight loss.
- Retina UK’s services and support were rated as ‘good’ or ‘excellent’ overall by 83% of respondents.
- Regular newsletters, Website, Annual conference and Webinars all scored over 90% satisfaction.
The full report is available on the Retina UK website in PDF, plain text and audio formats: RetinaUK.org.uk/resource/sight-loss-survey.