The role of support groups
What does a patient support group actually do?
(This page is from a talk given by Chris Robinson, Chairman of Barrett's Wessex. It provides the Wessex model other groups are invited to copy.)
It needs to be Managed by patients for patients (with help from professionals). Some previous groups folded by ignoring the members and concentrating too much on how the group could (financially) support the charity.
A local drop-in session where patients meet to share tips etc.
The group should:
Listen to concerns.
Answer questions (when possible) at Drop-in sessions, by phone and online. (They should not attempt to provide medical advice, referring people to GPs or directing questions to their medical consultant if necessary.)
Share tips "Patients helping patients”. Saying what they found helpful.
Educate with Annual meetings (or at different time intervals as felt appropriate)
Barrett's Wessex invites top experts to provide talks at their annual meetings.
They have previously welcomed gastroenterologists, surgeons, epidemiologists, researchers, nurses, pathologists a GP and a pharmacist.
Provide Information with leaflets, publications, newsletters, websites
Just a few of the leaflets stored in the Barrett's Wessex office. *
Interpret endoscopy and biopsy reports – since most patients won’t know what the terms “z-line”, “c3m4”, “dysplasia”, “columnar lined”, “goblet cell”, “metaplasia” etc. mean.
Provide reassurance – Most people with Barrett's probably will live to see their children grow up! (Unless they get knocked down by a bus.)
Raise funds – Apply for grants, run marathons, hold coffee mornings, have stalls at fêtes, etc. for locally identified needs and/or research.
Raise awareness – be it with advertising, stalls at fêtes and supermarkets, involvement with the media and Oesophagus Awareness month.
As a founding member of Action Against Heartburn, all the charities concerned with earlier identification of oesophageal cancer, Barrett’s Wessex was instrumental in getting February recognised as Oesophagus (or oesophageal cancer) awareness month in UK in 2015 when UK had a national “Be Clear on Cancer” campaign.
* Patient support groups allied to, or part of, Barrett's Wessex benefit from their own websites, printing as required, access to the on-line forum and a telephone help line if wanted. Other charities support their patient support groups similarly or can use BW facilities.