Other News // 3rd June 2022
This Volunteers’ Week we’re turning the spotlight on the patients, carers and family members selflessly giving up their time to support and champion the voice of the myeloma community, shape research and improve access to treatment. Here, 60-year-old myeloma patient Rachel Copeland, from Kent, explains why her work with the Patient and Carer Research Panel and Peer Buddy scheme has not only allowed her to make a lasting difference but to give a little something back.
Our Patient and Carer Research Panel is an ongoing partnership between myeloma patients, carers, family members and the research community while our Peer Buddy scheme provides peer support to people who have myeloma or associated conditions.
When I was first diagnosed with myeloma, I was working full-time and raising three children so I hadn’t managed to do any volunteering or fundraising for Myeloma UK. Ten years on, I am retired and have been shielding through the pandemic. When I saw the ad in the Myeloma UK newsletter, I realised now was the perfect moment.
It’s a funny story, really, because I initially applied for the Patient and Carer Research Panel. I had recently completed an MA and I thought my experience from this would be helpful; but I never got an acknowledgment, so I thought I’d done something wrong, and the online form hadn’t even gone through. When the Peer Buddy scheme came up, I thought I’d enjoy doing that instead. And then I suddenly found that I had been accepted for two roles. I love doing both for different reasons, so it’s worked out really well.
Both of these volunteer jobs are done online, via email, or telephone, and because of the pandemic, I thought, at least if I’m shielding, I’ll have something useful to do.
I’ve worked on a few tasks on the panel. I’ve helped review guidelines for panel members and see what might be missing or what might be confusing.
Sandra Quinn, who runs the panel, also needed someone to help with a literature review on patient care. She actually asked me to co-author it, which is possibly a bit of a grandiose title for what I’ve been doing, but I’ve been able to work quite closely with her, be a second pair of eyes, make suggestions and hopefully encourage her along the way so that the document she produces has a real patient’s eye-view on it.
Being part of the panel has shown me that Myeloma UK doesn’t take on research that’s divorced from patients but that we’re woven into it at all stages, so it is relevant.
I didn’t really know as much about what Myeloma UK does before I started volunteering and it has really opened my eyes to what the charity does. I’d mainly subscribed to the monthly newsletter, looked up information and participated in the Patient Forum. During my own treatment, I’d been prescribed various things that had come off trials, so I knew that somebody somewhere behind the scenes was working hard on my behalf. The more I got to understand about the work of Myeloma UK, the more I got to appreciate the incredible things that are being done to really move things forward in myeloma and to make things better for us in all kinds of aspects and in making sure that our voices are heard. Our voices are deemed important and that’s empowering and reassuring.
I’ve been surprised by the thoroughness, the professionalism and the preparation that has gone into the Patient and Carer Research Panel and the Peer Buddy scheme. I am part of the second cohort for the Peer Buddy scheme and it has been really amazing. I found the training very clear. It did exactly what it said it would and it was very interactive. Doing role play with other volunteers and seeing how other people reacted to things was very inspiring. You feel like you’re part of a community.
It did cross my mind that doing this could bring back difficult memories, which is called vicarious trauma, but the Peer Programme Coordinator, Courtney Amesbury-Cooke, gave us a thorough session on the things to watch out for within ourselves and what to do about it if it’s happening, which was very reassuring. Supervision is provided which is a very important aspect of making the role safe.
My Peer Buddy and I are very well matched – the triage process is amazing. We were laughing at the number of things we had in common. I hope I encouraged her. I personally was inspired by listening. She mentioned things I hadn’t thought about. Hearing about how other people have coped with things is probably going to enrich my own journey.
I’ve found volunteering with MUK really interesting and challenging. It fills a gap of things I miss about work: the intellectual stimulation and positive interactions with other people. It also feels sustainable with all the unknowns around the coronavirus situation as I can now contribute something meaningful from the safety of my home.
It’s about giving something back or contributing in some way. I’ve gained so much from what other people have done, people I’ll never meet, so it’s a lovely chance to put a little something back.
About the Patient and Carer Research Panel
By sharing their experience of and providing valuable insights into myeloma and other related conditions, panel members help to ensure that our research truly reflects and focuses on what really matters to patients, carers and families.
The panel is an informal group that operates by email, and members you can get involved in many different aspects of the research that we fund and support including:
• Help with survey design and completion
• Reviewing documents for patients in a study
• Take part in research studies through questionnaires, interviews, or group discussions
• Join advisory groups for specific research projects or clinical trials
Find out more about our Patient and Carer Research Panel.
The Patient and Carer Research Panel is especially interested in recruiting members from Black, Asian and minority ethnic backgrounds.
To sign up email email@example.com
About the Peer Buddy scheme
The Peer Buddy programme facilitates one-on-one support as a complement to our well-established Support Groups.
Trained Peer Buddies offer up to six sessions of support over a maximum of six weeks either over the phone or on Zoom. Support is available for both patients and their carers/family members, with patients supporting patients and carers/family members supporting carers/family members.
Peer volunteers now also respond to posts on the Myeloma UK Discussion Forum, sharing their experiences with fellow patients and carers.
Please note that the Peer Buddy service is not a counselling or mental-health service.