Stephen's story

Stephen's story

Perhaps our most important attribute is empathy, addressing the loneliness of cancer by walking alongside the traveller.

I am a colorectal cancer survivor. My local hospital asked me to set up a peer support group.  We planned a launch in spring 2020, but so did COVID-19.  Suddenly my local health team were redeployed and there was no-one for me to liaise with. The project was dead.

Or was it?  I realised that COVID was not going to stop people getting cancer and the isolation of lockdown would generate an even greater demand for support.  An online element was always part of the plan, but when face-to-face meetings were out of the question, online became the most important element.

How does one do this?  I could find no guidelines or templates for support groups.  I just had to try it and see.  I took advice from other groups and set up Bowel Cancer Support Group UK on Facebook in March 2020

At first, all screening and diagnostic tests were on hold, so our membership was very small.  Then in September 2020 colonoscopies restarted and we saw an exponential rise in numbers for a couple of months. We now get 40-60 new members per week.

Online support groups are not without issues.  Doctors are often disparaging about them.  They complain of people demanding treatment for a disease that was ‘diagnosed’ by ‘someone on the internet’.

There are also potential dangers for individuals themselves.  A poorly managed group can easily increase anxiety with ‘war stories’, anti-social behaviour, and the promotion of dangerous ‘alternative’ cancer cures.

Having moderated online groups since the 1980s, I knew that active management and strong rules and guidelines would provide the basis for building a responsible community.  From the outset we have focused on providing the kind of support that we are best qualified to give. As peers we experience and feel things that the clinicians can never know first-hand, this is our unique expertise.  The group is actively managed by a team of volunteer moderators who have been mentored.

The experience of two and half year’s operation and 3000 members has enabled us to build a picture of the disease and its treatment from a patient perspective.  Our members do not give clinical or medical advice, but we do advise on how to get it.  Our growing knowledge base provides information and links.  The moderators are tuned-in to reducing anxiety and we are getting good at spotting ‘red flag’ symptoms.  We help people to self-advocate to access the most appropriate treatment.  Perhaps our most important attribute is empathy, addressing loneliness by walking alongside those travelling the cancer pathway.

With 2000 actively engaging and 20 new posts per day we see trends and topics.  One discovery is that many people have no idea about how to talk to someone with cancer.  Often, they contrive to avoid the situation altogether in case they say the wrong thing. Our members frequently comment that their friends have disappeared.  In extreme cases even contact with family members has evaporated.  This has to be addressed.

In the UK, one-in-two people will get cancer in their lifetime.  Everyone will know someone with cancer.  We need to encourage empathy and understanding across the population.  A process that should start from a young age rather than shielding children from cancer. An aspect of health education that is every bit as important as cancer symptom awareness.

Looking to the future we are working with NHS England on an accreditation scheme for trusted peer support groups.  Our goal is to be effective at providing support responsibly.  Through this initiative we may be able to develop guidelines so that clinicians can feel comfortable to refer their patients with confidence.

Bowel Cancer Support Group UK

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