Final Report > Chapter 28: Public Involvement Through Empowerment > The issue > Past experience

Past experience

3 There has been no shortage of efforts and initiatives aimed at involving patients and the public in the NHS. But we detected a widely felt unease that too much of this effort has been of token value and has not succeeded in empowering patients. Indeed, `The NHS Plan' states clearly: `Patients are the most important people in the health service. It doesn't always appear that way. Too many patients feel talked at, rather than listened to. This has to change.' [2]

4 Over the years, institutions, such as community health councils, have been created; `lay' [3] people have been taken onto regulatory bodies (e.g. the General Medical Council and the United Kingdom Central Council) and onto hospital management committees and then trust boards as non-executive directors; and procedures have been adopted to consult the public, in such cases as the proposed closure of a hospital.

5 The result, however, has not been a sense of growing empowerment, such that the public, as patients or as taxpayers, after all these years of supposed involvement, feel truly in partnership with the professionals who run and provide our healthcare service. Indeed, the evidence from Bristol is the opposite: a sense, among many parents, of disempowerment, of inability to get the healthcare service to address their needs, and of bewilderment about where or to whom they could turn for help.

6 The reasons for this state of affairs are complex. To the extent that they can be identified, they allow us to suggest alternative approaches. A principal reason must be the lack of real power enjoyed by the bodies set up within the NHS to give the public their voice. Without power, such bodies swiftly become `talking shops', attractive to those who like to talk but ineffective in terms of translating talk into action. The involvement of the public and patients - if it is always heavily outweighed by that of professionals on, for example, regulatory bodies, or if the role which the public are expected to play is not clear, for example on trust boards - gives the appearance of public involvement without any real substance. Public `consultation', whereby the public are presented with a `fait accompli', or their views are ignored, leads to disengagement and cynicism. The net effect is frustration, loss of trust and an increasing lack of interest amongst the public in the bodies and structures that are supposed to promote their interest.

7 At the same time, healthcare professionals in the NHS have increasingly tended to regard public involvement as at best a token, not to be taken too seriously, and at worst troublesome, challenging well-laid plans, and raising what are perceived to be awkward questions. The barriers to effective public involvement were mentioned by many participants at a Seminar on this topic (see Box A) and were summed up well by the NHS Primary Care Group Alliance in its paper to the Inquiry. We agree with the Alliance's view on the need for a shift in culture towards the involvement of patients and the public. It wrote: `Being sincere about involving patients and the public in making decisions about their own care or about local health services involves a shift of power. Until individuals working in the NHS are ready for that, any user or public involvement in decision making will be a token event.' [4] We believe that the time is overdue for that `shift of power'.

Footnotes

[2] `The NHS Plan'. London: Department of Health, 2000. Para 10.1

[3] In this chapter we do not use the term `lay' to describe members of the public, since the term itself sets up a barrier between the `professional' and the so-called `lay' person. This, in turn, serves to exclude members of the public from making an effective contribution

[4] Seminar 7. The NHS Primary Care Group Alliance. Position Paper