Peer Support
Many people who are affected by blood cancer find it helpful to connect with others who share similar experiences, whether that’s through support groups, buddy systems or online forums.
What peer support services are available?
We understand that the different types of support that are available can feel overwhelming if you’ve just received a diagnosis or if you’ve not thought about reaching out for support in this way before. That’s why we’ve put together a list of peer support services you might find helpful.
Peer Support Services
There are dozens of support groups across the UK for people living with blood cancer. Many of these are now online. Support groups are often condition specific, so if you join one, you’ll be meeting people with the same or similar diagnosis to yourself.
Myeloma UK Support Groups: “Currently, there are 117 support groups in the UK and Ireland that are listed on our website. Most of these are myeloma-specific, but there are also several general haematology groups that welcome those affected by myeloma”
Leukaemia Care Support Groups: “We run and co-ordinate many support groups for patients and their families affected by any blood cancer including leukaemia, lymphoma and myeloma, so you can share information and experiences with other people in your local area”.
Some of these groups are managed in collaboration with the CLL Support Association.
Lymphoma Action Support Groups: “We have a range of monthly general support meetings and specialised meetings for people affected by particular types or experiences of lymphoma. All our support meetings take place on Zoom. If you're aged 18 or over, resident in the UK and affected by lymphoma, you're welcome to register.”
MDS UK Patient Support Groups: "MDS UK Patient Support Group is a charity started in 2008 to raise awareness and offer support and information to patients and families affected by Myelodysplastic Syndromes & CMML".
Shine Cancer Support – “We do lots of things that can support you, both in person and online. We run workshops, retreats and an annual conference, and also have support available 24/7 via our Facebook groups.”
Buddy Services offer peer support and an opportunity to speak to someone who has been through a closely matched experience. Often these are trained volunteers.
Lymphoma Action Buddy Service – “Our Buddy Service is available to anyone, aged 18 or over, affected by lymphoma. This includes people who have or have had lymphoma, and to family, friends and carers.”
Leukaemia Care Buddy Service – “Our one-to-one buddy support service matches you with one of our trained volunteers for regular or one-off telephone calls or emails.”
MPN Voice Buddy Programme – “MPN Voice’s Peer Support Programme offers individual support to all people with MPNs. The goal of the programme’s mission is to help patients cope with the common and emotional side effects of an MPN diagnosis – feelings of fear, confusion, isolation, in short, any difficult emotion related to having a chronic illness like an MPN”.
These are often great opportunities to meet and connect with others affected by the same or similar condition and hear about the latest research in a relaxed and friendly setting. Many of these events are still held in a hybrid format, so you can choose whether to go along in person or join the event online.
CLL Support Association - Webinar and Conference Schedule - CLL Support Association
Leukaemia Care - Patient Conferences Archive - Leukaemia Care
Myeloma UK - Patient and family events - Myeloma UK
MPN Voice - Events – MPN Voice
WMUK - Giving you support for Waldenstrom's macroglobulinaemia | WMUK
MDS UK Patient Support Group - Events
Online Community Forum
Countless people find our online community a safe and welcoming space to share how they’re doing and connect with others affected by blood cancer. We have over 2,700 members, all with a lived experience of blood cancer. Whether you’ve experienced a blood cancer diagnosis yourself, or you’re a loved one or carer of someone who’s been diagnosed, why not join today and meet people who understand what you’re going through?
What are people on the Forum talking about?
What are people saying about the Forum?
“You have a place to chat to people who just get it without having to put up a brave front. Make contact with people who can offer authentic support based on real life experience or simply be an ear. The people on the forum are truly brilliant and empathetic and you very quickly feel you’ve been listened to and in a less lonely headspace. It’s amazing how quickly some in need soon becomes a pillar of strength and inspiration for someone else.”
Talk to other people affected by blood cancer
Hear from and connect with people who understand.
Have you got time to chat to us about peer support?
We’re striving to build a peer support tool that will help people affected by blood cancer find the peer support most useful to them, whether in their local area or online. However, we want to understand what is important to people when it comes to peer support, and what people would find most valuable.
If you have time to talk to us about peer support, what’s worked for you, what hasn’t, and what is important to you when it comes to connecting with others affected by blood cancer, then please get in touch with Alice Randall.
