The value of support groups was already clear when Sarcoma UK officially launched in 2011.
Eleven local groups spanned the UK from Scotland to the South West with the first online group established in 2006, and the first face-to-face group following two years later.
Today the 16 support groups are truly a key part of the sarcoma community, whether local, (12), online (three) or via email (one).
While they are often patient-led, working with local sarcoma Clinical Nurse Specialists or doctors, all are about regular contact with people who share and understand each other’s experiences.
Venues like a community hall, cancer support centre or even a pub help to keep the meetings relaxed, with a format of whatever works for members.
‘People can talk about where they are on their sarcoma journey, the football results or whatever else is topical. We don’t talk about sarcoma all the time, which is a good thing,’ says Barry Davis, who co-runs the Sheffield group with John Beedon.
‘It’s not a club we want to belong to but we are where we are and it’s there if people want it or need it.’
The groups have done their best to keep up contact, despite the pandemic inevitably pausing face-to-face meetings or resulting in virtual Zoom or WhatsApp gatherings.
Support comes in many forms, often social. Club HQ meets annually, despite being an online group, and the East Anglia support group usually enjoys a summer lunch and a Christmas dinner.
With the Tricia Moate award set up by the charity, the Bournemouth support group now invites all the award winners to their annual anniversary meeting which fosters the links to their founder.
The groups are run independently but supported by Sarcoma UK. Newer groups benefit from the experience of more established members, especially at network days, as well as sharing friendship and best practice.
‘They are all run very differently but united by a common purpose,’ says Sarah Kingsmill, Information and Support Officer at Sarcoma UK.
‘As Sarcoma UK has evolved, they have been a common thread; not only part of the team but a part of our history and future.’