Patient stories // 3rd 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 the myeloma community, shape research and improve access to treatment. Here, 53-year-old Franko Kowalczuk, from London, tells us how fighting patients’ corner on Myeloma UK’s Patient Information, Patient and Carer Research and Advocacy Partner Panels has helped him to make sense of his diagnosis.
I was originally just part of the Patient and Carer Research Panel more than two years ago, just before everything closed down. After that I became part of the Advocacy Partner Panel and then the Patient Information Panel.
I had finished all of my treatment and I’d had my stem cell transplant and I thought, ‘What do I do with my life now that I’ve got it back?’. I wanted to use the experiences I’ve had to possibly make things better for the people that came after me. Some of my early experiences, during and before diagnosis, were not very pleasant. I wanted to see if there was some way of making use of what I’d been through to inform what came after me and that led to me getting involved in a range of things.
I was involved in a NICE appraisal for a new drug combination for the treatment of myeloma – carfilzomib in combination with lenalidomide and dexamethasone at second line – which was really interesting.
People from Myeloma UK and from NICE talked me through the process so I knew exactly what to expect on the day. At the meeting, NICE were keen to hear my perspective on why I thought it was a good thing to have a drug combination that might prolong people’s remission and give a better quality of life to people in my circumstances so it was useful from that point of view.
I’m a librarian and I’m part of the professional organization of librarians so I’ve spent a lot of my career being an advocate for librarians. Doing this for Myeloma UK didn’t really faze me. I could draw on my experiences of public speaking and public meetings.
I suppose there was a slightly selfish motive as well: if the drug combination passed it was something I might potentially be able to get in my next line of treatment.
The Patient and Carer Research Panel tends to be more ad hoc pieces of work – so contributing to reviewing research trials or drug trails or giving the patient perspective on documents sometimes. It’s been fascinating.
When I first volunteered, I thought maybe we were a small band but I realised there are probably hundreds of people like me around the country doing the same thing.
Meeting other people with myeloma and exchanging experiences and seeing how different things were for other people, or how similar things had gone for other people was really helpful.
I’ve also quite enjoyed being on the Patient Information Panel. There was a particularly memorable document which was about end-of-life care and what to expect when the end comes. It was quite intense, obviously, but it was really interesting to have some input into it and give a patient’s point of view.
Myeloma UK is very much a patient-centred organisation and everything it does is from patients’ perspective. I can relate a lot more to the things that the charity does because of it.
Being part of these panels helps me make sense of what I’ve been through and it helps me get to grips with the thing that is now a big part of my life, which it was not four years ago. My contributions may not necessarily change the world but there are hundreds of people like me and all our bits together just might change things.
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.
So sign up, please email firstname.lastname@example.org
About the Advocacy Partner Panel
The Myeloma UK Advocacy Partner Panel (APP) is a collaborative group of appointed patients, carers, family members and friends.
- Help us shape our advocacy work programme.
- Work with Myeloma UK in engaging with external stakeholders, such as parliamentary groups and drug-approval bodies.
- Share their personal experience of myeloma and services for media opportunities.
- Respond to requests for comment and feedback on consultation documents and responses.
- Participate in both Myeloma UK and external events and meetings.
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
About the Patient Information Panel
The Patient Information Panel consists of a mix of patients with myeloma or other related conditions and family members, friends and carers.
Patient Information Panel members:
- Take part in surveys and answer questionnaires
- Help us to identify gaps in our resources, improve existing patient information and produce new guides and materials
- Make sure our information is patient-friendly and accessible to the widest range of people affected by myeloma
- Road-test new digital tools and resources, such as apps
The Patient Information Panel is not currently recruiting new members.
If you have any questions, please email firstname.lastname@example.org