2nd March 2022 // Courtney Amesbury-Cooke
My name is Courtney and I am the Peer Programme Coordinator at Myeloma UK. I am delighted to introduce Myeloma UK’s new Peer-to-Peer programme, which will facilitate one-on-one interactions between peers and people who would benefit from their support.
Put simply, peer support is when people come together to use their common experiences to help each other. It is founded on a mutual exchange of experiences, which are equally shared. Peers are what is termed ‘experts by experience.’ This term recognises that the lived experience of treatment or supporting someone through treatment equips a peer with practical knowledge that can be of great benefit to others. For newly diagnosed people and their carers and families this can be a huge relief, as they may never have met anyone with the same diagnosis.
Myeloma patient, Jane told us why peer support mattered to her:
‘Navigating the highs and lows of myeloma treatment at times feels overwhelming and lonely. Having someone to listen, someone who understands, helps you to feel better, more hopeful and less isolated.’
Something that is perhaps not widely known is that the modern concept of peer support in healthcare began as a political and social movement in the Mental Health sector. In the 1970s and 80s, as the UK moved from an institutionalised form of mental health support to ‘care in the community’, where formerly institutionalised patients came together to challenge a traditional ‘top down’ approach to mental health care where their problems were centered, rather than their abilities. The peer support movement has now evolved to embrace these concepts of strength, empowerment and resilience when faced with a variety of healthcare challenges. Peer support embraces the whole of a person, rather than solely their identity as a patient, or a carer or loved one of a patient.
Carer Kayleigh signed up to be a Peer Buddy for this reason:
‘Experience is such a powerful tool – it can only be a good thing to share with others so they know they’re not alone and everything they’re feeling and thinking is ok.’
Research has shown that peer support has many benefits, both for the peer and the person they are supporting. Whilst research has generally focused on the psycho-social benefits of peer support, arguably peer support can improve clinical outcomes, as it is widely known that maintaining psychological wellbeing throughout treatment can be of benefit to recovery. Having a support network and feeling connected is a key component of psychological wellbeing. Another important facet of peer support is the focus on empowering the individual being supported. Being equipped with the knowledge of another person’s experience can lead to greater self-advocacy and more informed decision making, which may have a positive impact on clinical outcomes.
I’ve been struck by how many of our patient Peer Buddies have said that they think the experience is harder on their carers and loved ones than it is for themselves. Myeloma UK’s Peer-to-Peer programme is available for carers and family members too, who traverse their own mental and emotional health challenges when providing that crucial support to patients.
Carer Lynette echoed this, telling us:
‘From personal experience, I know that a diagnosis of myeloma doesn’t affect just an individual, it has a huge impact on the whole family. As a Peer Buddy, I can be alongside those who, in turn, are supporting a myeloma patient.’
Peer support taps into one of our innate human qualities – our in-built drive to help one another. In this respect, it is perhaps the simplest idea in the world. However, it has been important to Myeloma UK to create a robust framework that keeps both the peer and the people they are supporting safe and well. It must not be forgotten that our Peer Buddies and Peer Discussion Forum volunteers are themselves living with either the legacy or current reality of treatment and navigating ongoing uncertainty. Supervision and support, both on an individual basis, and as a group cultivates an atmosphere where our peers are themselves supported in turn.
For me, meeting and training our Peer Buddies has been both a real pleasure and a huge inspiration. Having experienced the profound challenges that a diagnosis of myeloma or related condition presents, commonly our Peer Buddies choose to focus on the valuable life lessons that they have learned from those challenges. Many have expressed huge gratitude for NHS, for the support they received from their family and friends, and a new-found appreciation for the small things that they had taken for granted. This positivity embodies hope – hope for the future, and for the ability to live a good, meaningful and fulfilling life whilst embracing all the ups and downs that chronic illness can present.
Peer Buddy Sally told me how this kind of peer support is invaluable to patients:
‘Sometimes it’s the “little things” that you don’t want to talk with your medical team about which keep you awake at night, so to be able to talk to someone who understands what you’re going through is invaluable.’
Simon Linnett, the Chairman of the Board for Myeloma UK, expresses his gratitude to all our Peer Buddies, and sums up exactly what our new Peer to Peer Programme has to offer:
“Myeloma is a confusing multi-faceted and relatively rare disease of great significance to those affected. Those outside immediate patients or their close families can find it difficult to understand fully the range of emotions and decisions in managing the disease. In that context, peer to peer discussions and exchanges have invaluable significance and we pay immense tribute to all those who participate in this exchange; as chair, I applaud you all.”
If you would like to learn more about how to be supported by a Peer Buddy, you can find out more on our Peer-to-Peer programme page. You can also get support and answers to your questions by posting on the Myeloma Discussion Forum.