Since 2024, The CJD Support Network has begun conducting an annual Support Survey to assess awareness, engagement and satisfaction with our support offer. The survey allows to to gather valuable feedback on how we might enhance what we do to better serve the needs of the UK CJD and prion disease community.
This year, 56 individuals participated in the January 2025 Annual Support Survey. The responses provide key insights into the ways people engage with our support and how we can continue to improve. We want you to know that we are actively listening to the feedback we receive. Below you will find some information about responses to the survey, and steps we are taking to action feedback.
Who completed the survey?
Respondents included a range of people affected by different forms of prion disease, with the vast majority (90%) having lost a loved one previously.
How did people find out about us?
Over half of respondents were signposted to The CJD Support Network by specialist clinicians from Edinburgh or London, demonstrating the strong relationships we have with these clinical teams. Around 30% of people found us through an online search, while others learned about us through family, friends or social media.
Overall satisfaction with our services
Respondents who had used our services were invited to rate their experience out of 5 stars. The average rating were as follows:
- Telephone support – 4.92/5
- Email support – 4.88/5
- Online peer support groups – 4.71/5
- Closed Facebook group – 4.69/5
- Fact sheets – 4.89/5
- Family Support Meeting – 4.81/5
- Care grants – 5/5
Many respondents shared positive feedback about our services, reinforcing the value of our support:
“[they] have been an invaluable support with regular calls”
“the helpline was amazing in 2006 when my dad had CJD”
“[the] Facebook group has been a comfort and source of support”
“My family and friends provide me with love and reassurance, and I know CJD Support is only a phone call away”
These comments and the other positive feedback received reaffirm the importance of information, connection and support for those in our community.
Feedback and actions – You said, we did
We are committed to acting on feedback where possible in order to provide the best support we can. Below are some of the key themes raised in the survey when we asked about barriers to accessing our support, or anything we might improved, and how we are responding:
Telephone & Email Support
You said: “Only having the helpline open on Tuesdays and Fridays can be limiting if you need urgent help or advice” / “I’m not available during the day”.
We did: While we do not currently have the resource to expand our regular opening times, we nor offer an email based call back request form where you can provide your availability for a call. We will work to accommodate and arrange calls outside of our usual opening hours. Additionally, we provide “Useful Links” and “Crisis Support” information pages on our website to direct people to support when we are unavailable and in emergencies.
Online Peer Support Groups
You said: “Some more clear, concise info about what happens at these groups and what you need to do to participate might help”
We did: We will look to gather and share testimonials from group attendees, to give new participants an insight on what to expect when joining a support group. We hope this will also support a greater number of individuals to attend.
You said: “A ‘remind me about this event’ button would be useful.”
We did: While we aren’t able to create a button like this, we are working to increase the number of email reminders and updates sent out via our social media and mailing list to help people remember upcoming sessions.
Close Facebook Group:
You said: “It would be helpful to have more information about available support”
We did: We have added wording to the Group Description encouraging people to take care of themselves when accessing the group, acknowledging that it is ok to take a step back if needed, and signposting to further support from both The CJD Support Network and other organisations. We have also introduced similar wording in a ‘New member intro’ message which will be received by all those who are new to the group.
Fact sheets and Accessibility
You said: “Maybe having videos instead of text?”
We did: We are in the process of developing audio versions of our fact sheets and will explore video formats in the future. If anyone in our community has video creation skills and would like to help, please get in touch!
Family Support Meeting (our annual in person meeting)
You said: “Distance prevents me from attending”
We did: We have explored various venues in recent years and welcome suggestions for future venues. We work to make sure the information shared in talks at the meeting is accessible by uploading videos to YouTube so that those unable to attend in person may still benefit.
You said: “Travel and associated costs made it difficult to attend.”
We did: We now offer financial assistance on a case-by-case basis to help cover travel costs for those facing financial barriers to attending. Please get in touch with us if costs are prohibitive to your attendance, we are here to help.
Care Grants
You said: “I didn’t know about the Care Grants”
We did: We are working on an article with the National CJD Nursing Service, highlighting both our Care Grants and the National CJD Care Fund, which will be featured in our next newsletter. We will continue to work on highlighting our Care Grants more frequently in newsletters and communications.
The 2025 survey results have provided us with valuable insights into how people engage with our services and what barriers exist. We are taking proactive steps to make our support more accessible, engaging, and informative.Your feedback shapes the future of The CJD Support Network—thank you for helping us improve the support we provide…look out for our 2026 Survey to have your say, or please do get in touch with any suggestions or feedback!
