Patient stories // 1st June 2022
Patient stories // 1st June 2022
This Volunteers’ Week we’re turning the spotlight on the patients, carers and family members selflessly giving up their time and toiling away behind the scenes to support and champion the voice of the myeloma community, shape research and improve access to treatment. Here, 56-year-old Scott Meech, from Bristol, tells us why his sister’s delayed diagnosis and his own journey from MGUS to active myeloma inspired him to join the ranks of the Myeloma UK Advocacy Partner Panel (APP) and the Peer Buddy support scheme.
The APP helps shape our advocacy work with politicians, Government and senior figures in the NHS, drug approval bodies and industry. Our Peer Buddy support scheme provides peer support to people who have myeloma or associated conditions.
My sister was diagnosed with myeloma over 20 years ago and sadly died shortly after, having had a very late diagnosis. At the time I was tested to be a donor. I was a good match but unfortunately my sister was never well enough to have the transplant. As part of the testing, they discovered I had MGUS. I had it for about 20 years before it moved to the smouldering myeloma stage four years ago. I was diagnosed with myeloma in 2019 and I’m two- and a-bit years post-transplant. This makes me a bit unusual in the sense that I’ve seen almost all aspects of myeloma as a family member watching someone else go through it and I’ve experienced MGUS, smouldering myeloma, myeloma and full sets of treatments and issues myself.
I joined the panel pretty much at the beginning, right in the middle of COVID. I was looking for something to do to help the charity and because of my long relationship with myeloma, through my personal experience of treatment and what happened to my sister, I felt I had quite a lot to offer. It seemed an obvious thing to do.
At the start of COVID, when the list of extremely vulnerable people was announced for vaccines, Myeloma UK in conjunction with some other blood cancer charities got together to lobby for patients’ families to also be vaccinated as a priority. A parliamentary working group was set up to discuss it and myself and another member of the panel attended the meeting. Both of us spoke and managed to make some points. When the Government introduced that policy and my own family got vaccinated early, we got to see the results of what we’d achieved, which was great.
Early diagnosis is really important to me and one of the key reasons I joined the advocacy panel. I was involved in reviewing the [A Life Worth Living] delayed diagnosis report and giving feedback. It’s a fantastic report and early diagnosis is something I’m passionate about, having seen the impact of a late diagnosis firsthand in the case of my sister. Round about the time she was finally diagnosed, she was starting to get some quite serious fractures – the combination of the fact that she was really advanced and that treatment at the time, around 1998-1999, was pretty basic.
I’ve also been trying very hard to initiate some direct contact with GPs to talk about early diagnosis. It hasn’t really come to fruition yet but it’s something else that a few people on the panel have been doing.
No one has the same experience of myeloma and that’s what’s great about the panel: you’ve got such a diversity of people. There’s always somebody who knows all about a particular subject, whether it’s bone problems or a specific side-effect.
For the Peer Buddy scheme, I felt I already had a bit of experience in that role because, while I was going through my treatment, I wrote a regular blog. Initially I kept it private and sent it just to friends and family as a way to keep everyone up to date with what was going on. But I made it public in the end and I’ve had a couple of people reach out to me for advice or just to talk to about their diagnosis and what I had been through. So I had kind of been a Peer Buddy, informally. I really enjoyed it and I felt I had helped them so, when Myeloma UK came up with the idea, I felt confident it was something I could do quite well and I gave it a go.
When I was going through the treatment myself, I found that three things were really important. The first is the support from family and the team around you, your nurses and consultants. Another important thing is talking about it. These roles with the APP and the Peer Buddies give you opportunities to talk about your own experiences and I find getting it all off your chest very therapeutic. Every myeloma patient knows that even if you’re in remission you’re going to have to deal with it again but what I found very reassuring and helped me to stay positive through my treatment was learning about drugs and the disease. Through staying involved with the charity and speaking to other people as much as possible about it I was able to build some knowledge and the more I felt I knew the better I was able to deal with what came along and the side effects. And if I can now help other people along the way, even better.
The Myeloma UK Advocacy Partner Panel (APP) is a collaborative group of appointed patients, carers, family members and friends.
Anyone with personal (non-professional) experience of myeloma can become a member of the Advocacy Partner Panel, i.e. patients with a diagnosis of myeloma, smouldering myeloma or a related condition such as AL amyloidosis; carers; friends and family members. No experience in advocacy or policy is needed.
Appointments are for an initial period of three years, with members attending one to two panel meetings each year, as well as other external events.
The Advocacy Partner Panel is not currently recruiting new members.
If you have any questions, please get in touch by emailing email@example.com.
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.
Peers can also choose to support fellow patients or carers/family members on the Myeloma UK Discussion Forum.
To speak to a Peer Buddy please complete a referral form.
Please note that the Peer Buddy service is not a counselling or mental health service.