If you have sustained an injury during your training, now is a great time to reflect why that could’ve happened i.e. type of trainer. If it was a muscle injury, you could use this time to strengthen the muscle as well as the surrounding muscles, but make sure you get advice from a sports therapist if possible

Join the fun at home! Host a Great British Picnic

Get together with friends and family this summer for a picnic to raise awareness and funds for Sarcoma UK.

For fundraising tips and ideas as well as more information visit sarcoma.org.uk/gbp or email

fundraising@sarcoma.org.uk

Let’s connect – the lowdown on support groups

Support groups are a key part of the sarcoma community, whether local or online. An experienced Support Group Leader in Sheffield shares tips about how they can make a difference.

Local groups are often patient led, with patients and carers working with local sarcoma Clinical Nurse Specialists (CNS) or doctors. Most groups are small and relaxed, taking place in venues like a cancer support centre, community hall or even a pub. The format of the meetings can be whatever works for members to feel welcome and comfortable. Barry Davis from Chesterfield co-runs the Sheffield group with John Beeden. Barry first got involved after he was diagnosed with a more common type of sarcoma, gastrointestinal stromal tumour (GIST) in 2010. Barry’s sarcoma was detected almost by accident as he was undergoing a scan for a different problem. He was told about the group by a CNS upon referral to a consultant oncologist. “When I was hit with this, I was a bit wary,” he says. Barry took over as Chair in 2013 and John, also a GIST patient, agreed to help run the group. Their wives have also become involved. When Barry took over, numbers were low so it was decided to consult members on the timing of meetings. A Friday night was suggested, and the group now meets six times a year, usually on the second Friday of every other month from January. The Sheffield group covers a large patch including Barnsley in the North, North and South Yorkshire, Worksop as well as North Derbyshire, and meets in Sheffield at Weston Park Hospital. One of the biggest successes is the speakers enlisted by John. These have covered a wide variety of topics from steam trains, butterflies and moths to climbing in Alaska. A Q and A session and refreshments follow before members chat in smaller groups. “This is where the real support happens, and 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. There are usually about 15–18 regular attendees from a core group of about 28 patients and carers. The group is supported by at least one Sarcoma Clinical Nurse Specialist at each meeting, so it’s not just patient/ carer to patient/carer support. However, group members cannot replace medical advice or offer second opinions on a particular sarcoma problem. The last Friday meeting of the year is an annual Fish and Chip supper in November, when the group meets informally. It also enjoys visits to local landmarks such as the Cathedral and the Cutlers’ Hall in Sheffield. The local church of one of the patient members, Jane Studd, adopted Sarcoma UK as its annual charity in 2019. The church knew some of Jane’s history of sarcoma and she was able to put them in touch with Clinical Nurse Specialists to speak at a Ladies group meeting. Barry and John also spoke about the patient perspective and the role of the support group. Fundraising for Sarcoma UK was spearheaded by members of the Ladies group throughout the year, raising over £2,200; a magnificent achievement. Sarcoma UK holds regular Group Leader days which offer an invaluable opportunity to learn new skills, meet others and share experiences. When it comes to running a group, Barry is very clear. “You have to first gauge the level of interest of patients and carers, and have a good clinical network as one challenge is to get to the people who may need us. The clinical nurse specialists help to promote the group as the Data Protection Act and patient confidentiality can be a problem in that patients have to give their permission for their contact details to be released to the group leader. “The people that make the group are the people who attend,” said Barry. “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.” Sarcoma UK has produced useful Support Group Leader guidelines written in collaboration with experienced group leaders. The publication offers ‘best practice’ advice on all aspects of organisational and key issues. Find the guidelines and other resources at

sarcoma.org.uk/resources

The website includes dates of next meetings and useful resources at sarcoma.org.uk/news-events/events. You can also sign up to the regular Support Group Bulletins or contact Laura Hart, Information and Support Officer, at laura.hart@sarcoma.org.uk Local and online support groups are run independently of Sarcoma UK. While the charity provides support and assistance, it does not take responsibility for group activities or services, such as campaigning or information and advice.