Learning from your experiences

Thank you to all those who completed our recent Sight Loss Survey – almost 700 of you took the time to share your experiences.

We carried out our first Sight Loss Survey in 2019 and used what we learned to improve our support. This included the launch of our Unlock Genetics and Discover Wellbeing resources. We also shared information with the decision-makers who agreed to fund Luxturna, the first treatment for inherited sight loss, on the NHS. This helped them to understand the day-to-day impacts of inherited sight loss.


This spring we repeated the Survey, to learn what has changed since 2019 and shape our future plans. Here are some of the key findings:


Retina UK was the top source of research information for respondents, with more than two thirds (70%) of those who knew about research citing us as the source. In fact we were more than twice as likely to be mentioned as the next highest source (ophthalmologist) at 27%. We appointed Kate Arkell as our first Research Development Manager in 2019 to improve our research communication and we will continue to grow this important area of our work.

Just over half of people (54%) would like to participate in a clinical trial or some other kind of research, but haven’t yet. A further 20% have participated in research, and 26% say they do not want to. We continue to make our community aware of opportunities to get involved in research, including through our Lived Experience Panel.


Almost a third (31%) of respondents could name the gene or genetic disease type causing their sight loss – this is twice the percentage in 2019, and suggests a positive increase in the number of people who are given a genetic diagnosis. We are delighted our Unlock Genetics resource is helping people to understand their choices and is having a positive impact.

Psychological impacts

Anxiety, loss of confidence and stress are the biggest emotional or psychological impacts of inherited sight loss. Only 7% say they’ve experienced no impacts like these. This is similar to 2019, although there has been an increase in people experiencing anxiety (78% compared with 71% in 2019). Our new Discover Wellbeing course aims to enable our community to better manage emotional impacts.

On a positive note, those who have engaged with Retina UK are less likely to say they’ve experienced loneliness, isolation and depression, compared with those who have not engaged.


People diagnosed more recently were less likely to believe the person giving the diagnosis understood how they felt, or to be told about ongoing support available to them. This may be an impact of the pandemic.

We continue to strive to influence this and we are involved in conversations with sight loss sector partners to understand how we can work together to bring about positive change.

Signposting to Retina UK

As in 2019, most respondents were not told about the support available from Retina UK (74% were not told, and 29% said they would have liked this). This is disappointing.

Those diagnosed more recently are most likely to have found out about Retina UK from an internet search, while those diagnosed longer ago were signposted by a healthcare professional.

We will further grow our online presence and will launch a new website in 2023. At the same time, we will do more to encourage professionals to signpost to our charity.

About Retina UK

83% rate Retina UK’s services as ‘excellent’ or ‘good’. There have been increases in satisfaction and take-up among many aspects of our information and support, compared with 2019. We are delighted to hear this and regularly ask for feedback to ensure we continue to improve our services.

  • Local groups (including online communities) – usage is up from 18% to 21%, and satisfaction from 73% to 87%.
  • Talk and support service – satisfaction has increased significantly (from 73% in 2019 to 83% in 2022).
  • Our helpline – satisfaction has increased from 87% to 92%.

We couldn’t have achieved any of this without our 50 information and support volunteers and we are hugely grateful for all they do.

Retina UK’s future direction

Respondents were asked which of the charity’s three areas of work they would like to see greatest focus on in the next three years.

Just over half (56%) said the focus should be on ‘funding and promoting the search for causes and treatments for inherited sight loss’.

The remainder were split between ‘providing information and support to help people manage their inherited sight loss’ (23%), and ‘increasing society’s understanding of the needs of people with inherited sight loss’ (21%).

The full report will be available soon on our website and we are considering how this influences our future work.

We would like to thank Santen for their generous sponsorship of the survey.