A large group of Retina UK volunteers standing outside in the sunshine

Volunteer Impact Report

Our charity was founded by volunteers in 1975 and they have been the lifeblood of the organisation ever since. They are involved in a wide range of activities across the charity.

For some volunteering is a one off activity, others choose to make a long-term commitment. We are grateful to each and every person who gives their time to make a difference for those affected by inherited sight loss.

Our volunteers live across the UK and have a wide range of backgrounds, occupations, knowledge, life experiences and skills.

Lived experience

The vast majority of our volunteers are affected by inherited sight loss and willingly share their lived experiences with others.

In 2022 we were supported by 75 volunteers including our ambassadors, medical advisory board, trustee board, office volunteers, and information and support team volunteers.

Volunteers enable Retina UK to deliver our helplines, Talk & Support, local peer support groups and Discover Wellbeing services – we could not provide these without them.

Many in our team have volunteered with us for numerous years and their historical knowledge of the charity is invaluable, while newer volunteers always bring different perspectives.

In 2022 we welcomed 12 new volunteers into our information and support team.


We are proud of the high standard of training and support we provide to our volunteers. This includes regular online meetings for information sharing and training, and also social contact.

We were delighted to welcome 24 volunteers to our face-to-face training weekend in 2022. All volunteers are in regular contact with our staff team and those supporting our services are offered one-to-one supervision sessions to manage their own wellbeing.

In 2022 we reviewed all of our volunteer induction and training materials and in 2023 we will be re-designing our recruitment process.


In 2022, our helpline volunteer team responded to over 1,000 calls and emails, providing emotional, life-changing conversations while offering practical help ideas, support and relevant signposting. Collectively they give around 400 hours of their time to the helpline service each month. Our 11 Talk & Support volunteers supported 21 individuals via regular telephone contact and gave around 240 hours of their time.

Volunteers are critical to the success of our rapidly growing local peer support group network. In 2022 our volunteer facilitators led 59 in-person and online meetings enabling around 600 people affected by inherited sight loss to meet others with lived experience in their local area. This will increase in 2023.

Other volunteer roles include recording our charity’s newsletter, providing guiding and support at our events, helping out in our office and sorting stamps for our appeal.

Many volunteers also choose to make a further valuable contribution by raising funds to support our work.

2022 volunteer survey

We actively encourage regular feedback from volunteers and our three-yearly survey enables us take a snapshot of their experience and learn how we can develop and improve the support and training we provide.

20 volunteers completed our 2022 survey ranging from volunteers with more than 16 years’ service to under one year. Here is some of their feedback:

“There are many... whose circumstances, practically and emotionally, are far worse than mine, and I would like to give them some support, however slight.”
  • 100 %


    said Retina UK supports them ‘very well’ in their volunteering role.

    “The staff go above and beyond to support us as volunteers and are always willing to listen.”

  • 100 %

    Listened to

    said they felt actively listened to and had the opportunity to put forward their thoughts and ideas to shape our activities.

    “I have felt that my contributions have always been listened to and appreciated.”

  • 100 %


    said they were ‘very satisfied’ or ‘satisfied’ with their volunteering experience at Retina UK.

    “I genuinely feel the staff at Retina UK could not provide their volunteers with any more support. We are supported in relation to our views, mental health and peer support. They are wonderful!”

  • 100 %


    said they felt well informed about Retina UK’s activities and updates.

    “I consistently receive updates, often in advance of the public, enabling us to answer any questions if we receive a call.”

“I wish to support Retina UK as an organisation which is working towards future treatments and other improvements in quality of life for those with sight loss.”

2022 Volunteer Survey

We asked to what extent someone’s volunteering experience with Retina UK helped them to achieve the following:

90% agree

Meeting people and making friends

89% agree

Getting a sense of personal achievement

84% agree

Getting satisfaction from seeing the results of outcomes of giving your time

68% agree

Having a chance to learn new skills

37% agree

Improving my employment prospects

“…being part of a team that completely understands my condition without explanation is hugely important. It is very powerful and satisfying.”

“Working with staff and volunteers give me faith that things are moving on.”

“I have met many inspirational Retina UK volunteers, who have demonstrated to me that life can still be fulfilling and enjoyable even with retinitis pigmentosa (RP).”

Meet our volunteers

“I called the helpline when I was diagnosed and was in a very distressed state. The volunteer was so supportive and wonderful, I called a few times and I felt so much better. I volunteer because I want to provide the level of support that I received to someone who has been diagnosed and may feel overwhelmed. I’m very proud to be a volunteer and it’s one of the best things I’ve ever done.”
Khadeja, helpline volunteer, who lives with RP

“Volunteering gives me a purpose, it helps my mental health. If I can help one person in my group, then I’ve achieved something.”
Rachael lives with Bardet Biedel syndrome and is a local group facilitator.

“…at the training weekend it made such a difference to actually meet the people who were also on the shifts with me. I had a lot of fun and really enjoyed chatting and laughing with them. It made me feel part of something. The warmth and energy of the group was quite something. There’s a huge sense of solidarity and shared vision and purpose.”
Joe, a helpline volunteer, is a writer and creative writing teacher who lives with RP.

“It’s a privilege to volunteer. I’m always grateful for what the organisation has given to me and it’s logical to give back to you, so thanks.”
David lives with RP and is a long-serving helpline and wellbeing volunteer.

“I have made some great friends through volunteering with Retina UK, and learned a lot.”

Audio copy of the Volunteer Impact Report

A large group of Retina UK volunteers standing outside in the sunshine

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