Self help groups: the fourth estate in medicine?

Abstract

Here I suggest that we should recognise the rapidly growing contribution made by the many lay self help groups. I believe that we should add these as the fourth estate in medicine to Sir Theodore Fox's greater medical profession.1 To try to make up my own mind about the role of self help groups I saw some dozen people directly concerned with them and read some of the excellent academic analyses.2 51 looked at many of their publications and also circulated almost 70 doctors from the BMJ's list of referees with a questionnaire asking them about their knowledge of, as well as their attitudes towards, these groups. How does one define self help groups? Some of the definitions are long and intricate, some refer back to Samuel Smiles and Prince Kropotkin?two authors I haven't read and don't intend to read? and some would cover groups devoted purely to one purpose, such as the Patients' Association, the College of Health, and Action on Smoking and Health. The composite definition I've arrived at is: A self help group is a voluntary organisation, usually of peers, who have come together for mutual help and support, in satisfying a common need, overcoming a common handicap or life disrupting problem, and bringing about desired social or personal change, or both. There are now at least 1500 national self help organisations and over 25 000 regional branches. Clearly, no one is typical, but let's look at one as an example. I've chosen the National Eczema Society for several reasons: partly because its national office is just above mine in London; partly because it's middle of the road in its policies; and partly because I happen to know one of the medical advisers. The society was started in 1975, after a mother of an 8 year old had written to the Guardian.6 She suggested, among other things, Perhaps we should form a society for sufferers and their relatives.