Tell us about yourself and why you got involved in this project?
My name is Calum, I’m 19 and have lived with type 1 diabetes since December 2020. I first heard about the D-Stress study from one of my youth workers, through my role as a young leader with Diabetes UK’s Together Type 1 programme, which I’ve been involved with for nearly two years. I decided to get involved and apply for the Patient Forum because I’ve previously experienced both distress and burnout related to diabetes, and occasionally still do.
Before applying for this opportunity, I had never been involved in any research. Another motivation for saying yes was my interest in gaining insight into how research is carried out, as well as seeing how the outcomes could help others overcome or reduce their diabetes distress.
What have you been doing on the project?
As a member of the Patient Forum, we’ve had multiple workshops on different topics related to REDUCE, DETECT, and SUSTAIN. This has included talks from researchers from both the USA and Denmark about their interventions, how they are carried out and the tools used to deliver them. Over time during the workshops, we’ve delved deeper into these interventions and critically reviewed them. Feedback from members of the Patient Forum has then been taken into consideration when creating the UK’s D-Stress pathway.
A discussion that felt particularly meaningful was during an in-person workshop at King’s College London, where we reviewed materials created for the D-Stress programme and were able to provide feedback. I felt the discussions were impactful and that we were really heard.
One thing I’ve really enjoyed is talking with the other members about our different experiences with diabetes, from the highs to the lows. Even though we all share the same condition and have similarities, not one of us has had the exact same experience or journey.
What has it been like being one of the younger members of the Patient Forum?
When I first joined the Patient Forum and realised I was one of the younger members, it felt a bit daunting, especially when I found out I was also the most recently diagnosed with diabetes. However, the other members have been so welcoming, and I feel truly listened to and accepted. This is largely due to the way the workshops are run: we often have breakout rooms to discuss topics in smaller groups, which makes it easier to have a voice. We also have reflective sessions after each workshop, where we can talk about how future workshops could be improved. I believe younger people can bring fresh perspectives and valuable insights into how health impacts their age group.
What is one key thing that you have gained from being part of this research?
One thing I feel I’ve gained from being part of this research is a wealth of knowledge from a broad cross-section of people within the diabetes community. This has been both enlightening and thought-provoking, and I know it will be invaluable to me in the future, both in the roles I already fulfill and as I progress into mental health nursing at university.
The current D-Stress research isn’t over yet, and I’m excited to see how the project continues to evolve. Once it ends, I hope to stay involved in research projects and focus groups, sharing my perspective and insights to help improve the lives of others.
Would you encourage other young people to get involved in research?
I believe more young people should get involved in research if they have the opportunity. Every voice matters, and there’s no right or wrong answer in research; everyone has had a unique journey and brings a different perspective. Younger and less experienced voices can offer fresh insights and challenge the views of researchers and older participants.
Since becoming a member of the Patient Forum, I’ve started to view my condition and experiences in a different way. I now think about how my own journey, and everything that’s happened to me, can help shape the future and support others.
I hope that others reading this will feel inspired to speak up, get involved in research projects, help shape future outcomes and grow their own confidence and skills.