As the UK’s leading charity for heart muscle disease, Cardiomyopathy UK is constantly evolving to ensure we remain the primary source of support, advice and information for our service beneficiaries. The global COVID-19 pandemic saw our specialist helpline and community peer support services face a marked increase in demand from both existing UK based service users but also from people around the world, many of whom had not used our services prior.

Over its thirty year history, the charity has established a far reaching network of support groups offering clinical and psychological wellbeing support as well as sharing lived experience of cardiomyopathy peer to peer. Face to face and online support group meetings have, for many of our service beneficiaries, been essential in enabling them to navigate their illness from diagnosis to stabilised and improved holistic health. However, we believe that we are still not reaching those people within the wider cardiomyopathy community who might benefit physically, emotionally and psychosocially by engaging with our support groups. This has opened a discussion within the services team and wider charity around the very name, “Support Group.”

We acknowledge that support groups are not something that everyone wants to participate in for various reasons, but our question is this, are some people or parts of our community put off or even wary of the term “support group”, leading to possible misconceptions as to what engagement with said group might entail? When speaking with clients on our helpline whom we have invited to attend an issue / condition specific and / or regional support group some have told us that support groups are “not for them” and that they did not feel ready to attend a group. Upon further discussion, it became apparent that for an increasing number of people barriers to attending a support group included the following:

1.          Not sure what to expect – how they will be received, how they will feel

2.          Misconception of  exaggerated media portrayals of alcohol and substance meetings

3.          A belief that the term “support” suggests a vulnerability or inability to cope

4.          Not fully understanding the offer

There is clearly a misunderstanding of what a support group actually is which is partly due to the name itself and partly because of dramatic licence used by filmmakers. Our question is, if we look to change the term “support group” to remove a barrier, what could be implemented as a salient substitute?

We will be consulting with our service beneficiaries and fellow charities and NGO’s but would welcome hearing suggestions and ideas from others within the Charity Connect community that might have experienced similar issues.