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Expert Patients
- Chris Manning (3 December 2002)
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Chris Manning, CE PriMHE (Primary care Mental Health and Education) Twickenham. TW11 9HG
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Dear Sir In terms of placing the users of services at the heart of those services, it is still only very early days. Only a few strands of meconium have been passed to date and those first smiles have more than a hint of apprehension. Patients do not become experts overnight, any more than doctors do. I am not in favour of the term 'expert', which is lacquered with layers of meaning and more than a whiff of "knowing best" and paternalism. It has accounted for the demise of many a professional and organisation and perhaps we should not be beginning to damn service users with faint praise, just as we are abandoning the term ? Neither should we be yomping towards the new ideologies without thinking or simply because Neo Labour tell us to, whether we are labelled recidivistic or not. The service specification is changing and it is now attitudes and behaviours that matter more than buildings and equipment. If those occupying PCT positions, for example, have the same rigid mind sets they had whilst working in the Health Authorities and doctors think that managers and/or patients are still the enemy, then nothing has changed and very little, if anything, will. Increasing friction, demand, learned helplessness and illness behaviours will continue to drain the fiscal troughs unless we also help people, and especially politicians, to understand that health does not equal more hospitals. Further, perhaps it is high time to abandon the term 'patient'? As someone with experience of depression (I am NOT a depressive), I actually resent the term, since it enforces a modus operandi on those who relate to me when I am using medical or health care services; it strains everything else I am through the arse of a gnat and may well prevent those who deal with me thinking about solutions outside of their own methodological or entrained mental mindsets. You are not a doctor, that is what you do, not who you are. This paper reminds us that an absence of evidence should not be mistaken for an absence of effect. It could also go further to state that an absence of evidence may result from studies being weak or remaining unperformed because of unpopularity with funders. Absence of effect on services is also not the same as absence of effect on those involved in such exercises of involvement, where, it is usually a welcome relief and an opportunity for enablement if conducted in a non-tokenistic and proper manner. "Addressing patients' concerns about their illness may lead to a more satisfactory outcome of the consultation and improve engagement of such patients in the health services"(BMJ 2002;325:1148-1151.16 November). If people with active psychosis have a voice they wish to be heard (and perhaps some of their inner ones only become as loud as they do so that others will eventually hear them?), then there would be appear to be a very good argument for ensuring that real involvement is key to success in terms of outcomes for everyone? As a GP, the main reason for people to express their disappointment or dissatisfaction to me about services was their non-involvement in the consultation or management processes. The service user is a crucial part of determining the quality of services and ensuring that they are tuned to the right stations. Feedback to experts by experts behind closed doors and removed from the front-line is not the way to generate inclusive learning and living biofeedback loops. "Patients have many needs and when these are not voiced they can not be addressed. Some of the poor outcomes in the case studies were related to unvoiced agenda items. This suggests that when patients and their needs are more fully articulated in the consultation better health care may be effected. Steps should be taken in both daily clinical practice and research to encourage the voicing of patients' agendas (BMJ 2000;320:1246- 1250). From consultation throughout, the NHS and its staff have a duty to listen; indeed, my biggest error was to do most of the talking. This is not about moaning and whingeing either, but proper involvement, and we need to learn on both sides how to do it better. And if this is all really so difficult, then why not just imagine yourself as a potential service user or carer? Yours Faithfully Dr Chris Manning
Competing interests: None declared |
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