In Eindhoven the other day I had the privilege to meet co-ordinators of an extensive self-help network, hear about some of the ways in which the groups work, and gain insight into the importance of the experience for sufferers. There are about 80 mutual support groups in the network, covering a range of shareable problems including mental health, addiction, sexuality, and so on. One of the promotional leaflets proclaims:
‘Secretly, many tea parties are self-help support groups’.
Our discussion was framed by the broad social policy context of how a society provides care for its citizens; what are the responsibilities of individual and state, what is the role of the professional, and so on.
Someone mentioned ‘primary care’. What ironic language, in the circumstances. There we sat at a focal point for several hundred people who come together semi-formally to help themselves and others as fellow-sufferers to just about function, not disparaging professional care but claiming and reserving an independent space. And we were using the language that characterises part of the problem.
I suggested a while ago that most 'primary care' is self-administered by individuals or administered within households. It was suggested that perhaps that’s ‘zero care’. Fair enough. Listening to the members of the self help network, I thought, this is primary care.
So it would be helpful if the care system were re-oriented to acknowledge, structurally and constructively, the role that people themselves play in co-producing each others' health and care and quality of life. That would also be likely to save money, though not for the insurance and drug companies.