The value of a myeloma support group – perspectives from a patient, nurse and doctor

The myeloma team at Royal Hampshire County Hospital, and the leader of the Winchester Myeloma Support Group talked to us about their involvement with a support group and explained its value, not only for patients but also for the staff involved.

Patient perspective: Mary Mitchell
Winchester Myeloma Support Group Leader

Could you tell us about your support group and how it currently runs?

I joined the group ten years ago and took over the leadership in 2017. Our group has around 15-20 members who are either patients or partners, family members and carers. Before the pandemic, meetings were held face-to-face at the hospital, often with one of the nurses or consultants attending, and always with tea and cake. Since the pandemic, meetings mostly take place via Zoom but are more frequent than they were, usually every six weeks, and usually but not always with input from clinicians. Sometimes smaller groups of patients will meet each other at local cafés, and if someone is new to the group, I offer to meet them one-to-one first, to help reduce any anxiety they might have about coming to a meeting.

Running the group doesn’t take up much of my time and meetings can be kept simple. I try to make it a group everyone can join in and it’s important everyone has the chance to speak but I never force anyone to take part. It’s also important we get medical advice from the clinicians, and not from each other.

How do you think the group benefits patients?

For me, the value of the group is that it is just really nice to get together with other patients outside of the clinic setting. The fact that people are keen to attend means people must find it is a support and enjoyable. Without the support group you might never meet anyone else with myeloma.

Myeloma is an odd condition and other people don’t always understand the nature of the disease, for example, how it can relapse several times. Most patients want very simple explanations of things, rather than too much technical information. Topics like neuropathy, for example, may come up and people just want to know that others have similar experiences and symptoms and hear about how they manage them. The group is fun, we make each other laugh. Obviously, it is more serious at times, such as when asking consultants certain questions.

I attended my first meeting was when I was heading for my first stem cell transplant and a patient at the group who had recently had one talked about their experience, which was very helpful. Following my treatment, I sometimes felt nervous about saying I was doing fine if other people were having problems, but it can help to know others are managing well and getting on with life. Myeloma is something patients can live with, and people have a life outside myeloma and do other things – they just want to get on with their lives. Myeloma affects everyone differently.

The group also feels like a way of coming together to say thank you to the staff, and value their support. It is very helpful to have clinicians at meetings when they are able to attend. They keep us up to date with the latest treatments in myeloma, reinforce our knowledge about the disease and make sure that any advice we share is correct and safe.

Nurse perspective: Debora Francini and Catherine Tanner
Clinical Nurse Specialists, Royal Hampshire County Hospital

How do you think the group benefits patients?

When people are first diagnosed, we always offer them the support group leaflet. We let them know the group is there, if they want to talk to someone else with myeloma and feel ready to join. The group provides a great communication channel as patients can share information with each other about managing their disease and treatment and benefit from the knowledge and experience of their peers. Patients will also share general updates they’ve received from the medical and nursing team or Myeloma UK, so the group forms a reliable communications network.

The group can be particularly helpful for patients who are isolated and don’t have any family nearby. It provides extra help and support from people who share similar experiences. Some partners come to meetings too, and we’ve seen that male patients may be more likely to attend if their wife or daughter goes with them.

How does being involved with the group contribute to your role as a CNS?

The Winchester Myeloma Support Group is a good example of a support group that really involves clinicians. Initially, when we got involved, we were worried about being put on the spot if the consultant was not there, but actually we can answer most questions that come up. The patients don’t ask lots of very technical questions, as the group is more about providing support and reassurance. As nurses, the group is also a way for us to get feedback from patients on what they need, any current issues and their experience of care at the hospital.

Doctor perspective: Dr Marianna Koperdanova
Consultant Haematologist, Royal Hampshire County Hospital

How do you think the group benefits patients?

My colleagues and I feel the main benefit is in helping ensure patients are well informed and well supported. The group provides trusted, reliable information and a space where patients can get that. Patients are often overwhelmed at diagnosis and a plethora of leaflets and information can be too much. It is very different hearing from another patient and the group offers this value. It gives strength to patients as myeloma is very different to other types of cancer and other people don’t know its intricacies. Communication is an area that can come up as a weakness of the NHS so this additional human contact for patients is very, very useful. The personal experience is invaluable. You never know what it is truly like unless you’re in that situation.

The group also provides another reliable information source, and the chance to hear information rather than just looking on the internet or reading booklets. It is a means of disseminating advice, for example, around Covid-19 vaccination measures during the pandemic. The group gives patients a place to ask questions they are worried are silly or don’t want to bother their team with. It’s very important they ask questions and hear from others who might be feeling the same way. The support group is a safe place to ask questions and they have formed a community to support each other with everything else life throws at them, aside from myeloma. It’s not always a myeloma-specific discussion.

People in the group are at different stages of their myeloma journey, and on very different journeys. As consultants we are aware of the anxiety patients can feel at start of treatment, so meeting others at future stages of their journey can be reassuring (for example seeing patients who are doing well after a transplant). Seeing other patients living their lives, doing things they enjoy and not a victim of their diagnosis can help patients draw on their psychological strength and build resilience.

What value does the group bring to you in your role as a myeloma specialist?

Patients attending the group are more informed and supported, which makes our job more satisfying, knowing we work well together to achieve the best possible outcomes. Often, the constraints of our job don’t allow time to ask patients about everything, but we want to know about any issues, support them and learn. So information exchange works both ways and it is always good to hear back from patients about the meetings.

You can find more about myeloma support groups,  including information on starting up a group, on the Myeloma UK website.