British general practice, it seems to me, has a regrettable tendency to self-congratulation and self-importance. We never tire of churning out the overworn description of our profession as ‘the jewel in the crown’ of the NHS; we celebrate our patient-centredness and boast of our humility; we speak proudly of our judicious gatekeeping skills and our tireless advocacy on behalf of our patients – and now some of us at least are trumpeting the new dawn when at last we shall take centre stage in controlling how the bulk of the NHS budget is spent. Because, it goes almost without saying, ‘We know best’. But do we? With the nGMS contract we have taken the devil's shilling in the form of the Quality and Outcomes Framework that has led to over-medicalisation, overtreatment, computer-centredness and the sacrifice of personalised medicine for public health tasks, and we have opted out of out-of-hours care. NHS patients from overseas are astonished that they are unable to see a specialist without the initial approval of their GP and wonder at our parochial outlook. And the public remains sceptical of our motives, and capabilities, when it comes to commissioning care on their behalf.
Charlotte Williamson's book makes little mention of general practice, but her main thesis is of relevance to the foregoing. She maintains that patients remain oppressed, and their interests repressed, by both health professionals and by what she calls ‘corporate rationalisers’ (managers, commissioners, and health economists), and that there is a long way to go before they can be regarded as emancipated. In her analysis, the interests of clinicians remain dominant, and those of patients remain repressed, while the corporate rationalisers have a somewhat ambivalent role, sometimes mediating between the other two parties, sometimes challenging one and supporting the other, while of course having interests of their own which may or may not be in conflict with those of the other groups.
While speaking at times of ‘the patient movement’ in broad terms, the author is at pains to point out the contrast between radical and non-radical patient activists: the former are ready to challenge the interests, values and behaviours of health professionals, while the latter, as typified perhaps in many primary care Patient Participation Groups, tend to be more supportive. As with any emanicipation movement, it is the radicals that tend to bring about significant change.
As examples of radical movements, the Association for Improvements in Maternity Services (AIMS), The National Association for Welfare of Children in Hospital (NAWCH – now Action for Sick Children) and several other groups are put under the spotlight, and their origins, activities, membership, methods and achievements explored. It is sobering to read that it took almost 30 years of campaigning for unrestricted visiting to become universal in paediatric wards; and while such pointless practices as pudendal shaving and pre-labour enemas were quite soon abandoned under pressure from groups such as AIMS (and sympathetic professionals, to be sure), there is still plenty of scope for improving the choice and quality of experience on offer to those undergoing childbirth.
The author identifies what she calls ‘the ten core principles that patient activists believe should guide healthcare’: respect, equity, access, information, safety, choice, shared decision making, support, representation and redress. Perhaps these should be saved as an aide-memoire screensaver on all commissioners' laptops.
Other chapters explore conflicts and schisms within the patient movement, inter alia demonstrating how widely the now-disbanded Community Health Councils were distributed along the radical-conservative spectrum; allies and antagonists among health professionals (Sir Donald Irvine is described as a ‘well-known radical doctor’, along with Mrs Wendy Savage); and achievements and failures of the movement. In conclusion is a plea that justice and equality – of moral agency, of voice, and of respect and esteem – should be made more explicit principles of the patient movement, and that recognising it as an ‘emancipation movement’ might be of value in itself and lead towards our shared aim of improving the quality of care in the NHS.
Dr Williamson, with a background in both natural and social sciences and as vice-chair of York Health Authority and Trust, writes with the assurance and authority of someone with both academic and practical experience, and the book is tightly argued, scholarly and clearly written. I found it stimulating, and it has made me think again about my own comfortable assumptions about my own concerns for patients' interests. I remain unconvinced that there really is a coherent ‘patient movement’ rather than a large number of patient interest groups of varying degrees of inclusivity and efficacy. I would like to have seen some acknowledgement that at least some of the profession's mistrust of patient activists stems from the dubious activities of certain radical groups with particular axes to grind (JABS and its involvement with Dr Andrew Wakefield springs to mind).
Essentially this book is one of theoretical analysis rather than a primer on the practicalities of patient involvement, but I would strongly recommend it to anyone who is contemplating even a part-time career in GP commissioning: it may just remind those doctors who think that they know what's best for their patients to check with the latter first.
- © British Journal of General Practice, January 2011