For many people living with myeloma and related conditions, it can be an isolating experience. Support groups offer an opportunity to connect to other patients and family members with shared experiences, accessing emotional support and friendship.

Myeloma UK’s existing Support Group programme has recently undergone development to better support the people that run myeloma or haematology Support Groups. In May, Myeloma UK’s Lived Experience and Clinical Practice Directorate showcased this new initiative at Myeloma Patients Europe (MPE) Annual Masterclass.

Myeloma UK’s poster entitled ‘Support Groups Partnership Programme’, which was presented at MPE’s Annual Masterclass earlier this year. Click to open larger image.

Gizelle Madurai, Head of Lived Experience, presented the poster at this educational event held in Madrid, Spain, 3–5 May 2024. The poster highlighted the development of the proposed initiative compared with the previous Support Groups programme. It also explained how it will benefit those that join, and the encouraging results of the pilot phase of the programme.

This new initiative, the Partnership Programme, has been co-produced with Support Group Leaders (SGLs) and is a way for SGLs to share best practice with one another. The programme also formalises the relationship that Support Groups have with Myeloma UK, as well as providing SGLs with all the relevant resources and templates they need to run their Support Groups successfully.

As part of the Partnership Programme, a new online space was created called the Partnership Hub. This offers a central library for training and resources relevant to running a Support Group, which SGLs can access at any time. In addition, there are numerous features that SGLs can make use of, including:

  • A forum where SGLs can ask questions of one another
  • A poster builder
  • An area for users to upload their own resources
  • A space where Myeloma UK can communicate news and updates

To date, the programme has been well received and SGLs report a positive overall experience. The results highlight that the Partnership Programme has empowered SGLs. Being endorsed by Myeloma UK has helped them to feel more connected to a community of SGLs, and less isolated.

Many Support Groups rely on the support and leadership of Healthcare Professionals. If you run a Support Group, or would like to get involved with one, find out more about how the Myeloma UK Support Groups Partnership Programme can support you. Email the Support Groups team at supportgroups@myeloma.org.uk