Help to shape our future

Posted on: Thursday 10 March 2022

Would you like to help shape Retina UK’s future? Do you want to ensure decision-makers understand the impact of inherited sight loss? If so we’d love to hear from you.

By sharing your views and experiences in our 2022 Sight Loss Survey you can help ensure our current and future activities are relevant and that they respond to your needs.

We will also share the findings with other statutory bodies and organisations that can make a difference for people living with inherited sight loss.

In 2019 more than 900 of you completed our survey. The information you provided has been invaluable.

Members of our community have been involved in the development of the survey.

Paula McGrath, Director of Development, said: “It is vital we have an up-to-date understanding of how people experience life with inherited sight loss. This is why we repeat our survey every three years.

“The findings will enable us to set our priorities, measure our progress and impact over the coming years and support our applications to funding bodies. I would strongly encourage all of our community to take this opportunity to make their voice heard.”

Take part

The survey is open to anyone living in the UK with an inherited sight loss condition. It can take 20 minutes or longer to complete, especially if you are using accessibility software or devices. It is not possible to stop part-way and resume another time, so only start the survey now if you have time to complete it in one session. Otherwise, feel free to exit and come back when you have more time. The deadline is Tuesday 26 April.

It can be completed:

You can respond anonymously should you wish.

These are some of the actions taken following the last survey:

Information provision:

You said: You wanted to hear more from Retina UK on treatment updates, research progress and managing life with sight loss.

We did: We started new monthly webinars and podcasts on a variety of topics.

Peer to peer support:

You said: You benefit from informal meetings with others affected by sight loss.

We did: We moved our local peer support group meetings online during the pandemic and we’re setting up new ones.

Understanding genetic testing:

You said: 43% of you told us you were not aware of genetic testing or it was not available to you.

We did: We launched our innovative Unlock Genetics resource, packed with information to enable you to make informed choices.

Mental health and wellbeing:

You said: Only 8% of you said you’d experienced no emotional or psychological impacts.

We did: We created accessible wellbeing modules for our helpline volunteers, now we’re developing these for our community.

Approving treatments

You said: More than 900 of you told us how inherited sight loss impacts on your daily lives.

We did: We shared your experiences with decision-makers who agreed to the first treatment for inherited sight loss being available on the NHS.