• patient views
• public opinion
• National Health Service

At the heart of the issue of lay involvement in the British NHS lies a contradiction—the enthusiastic rhetoric advocating it at all levels is not matched by significant and meaningful user involvement in practice. Since increased participation of patients and the public in health care is recognised internationally to be desirable, an examination of the implementation of the policy in the NHS will be of benefit to policy makers, managers, and clinicians struggling with this issue more widely.

Publications such as “The new NHS: modern, dependable”¹ produced shortly after the Labour government came to power in the UK and subsequent policy statements such as “The NHS Plan”² certainly demonstrate a rhetorical commitment to lay involvement backed up by the introduction of particular models, including the patient advocacy service and patients’ forums. However, evidence so far indicates that, despite these professions of intent, there is little lay involvement taking place on the ground. Findings from two successive cycles of the annual national tracker survey of Primary Care Groups and Trusts (PCGs/PCTs),³ the main purchasers of health care in the new primary care led system within the NHS, found the role of lay members in decision making to be peripheral. It also found the effectiveness of attempts by the PCGs/PCTs either to inform or consult users to be poor, with little evidence that such consultations had had any major impact on decision making.⁴ A study which looked at user involvement in clinical governance found a similar lack of lay influence on quality activities,⁵ and an ongoing study examining the impact of differing PCT organisational and governance models on user involvement is also reporting a low level of user responsiveness across all models.⁶

There seem to be two main reasons for this. Firstly, where the systems are in place—with non-executive directors established on the board and the patient advocacy service and patients’ forums up and running—in practice, user responsiveness comes low down the list of PCT priorities. Secondly, even with particular models in place, PCTs themselves have found that sincere user involvement is hard to effect in a meaningful way.

PCTs state that their priorities are those passed down from the Department of Health, with waiting lists, access, and national service frameworks all taking up the lion’s share of their time. Certainly, they take precedence over more locally generated priorities and over user involvement (which often overlaps with local priorities). The cursory attention paid to user involvement means that PCTs often express uncertainty as to how to do it (despite the excellent guidance produced by the NHS Consumers in Research Support Unit).⁷ The role of non-executive directors on the board and their relationship to other mechanisms for channelling user involvement is characterised by a lack of clarity, with a similar ambiguity in practice concerning the place of the board in relation to the Professional Executive Committee (PEC). At the same time it is ironical that, despite the abundant monitoring processes set up to evaluate the performance of various healthcare providers, this sort of information may not be telling the user anything he or she would actually wish to know (such as whether a GP has good interpersonal skills or what the patient recognises to be a “good doctor”).⁸

It may therefore be that, despite the impressive array of mechanisms in place, a focus on governance arrangements in terms of policy implementation is misplaced. Instead, the focus should be shifted much further down to the level where patients interact with healthcare processionals. As Coulter points out: “Instead of beginning at the rarefied level of formal involvement in organisations and official committees, implementation of the policy to promote patient centred care should have started much nearer the ground at the point where patients and professionals interact”.⁹ It is therefore of crucial importance to develop and disseminate effective methodology which will pick up and act on patients’ perceptions of the quality of such encounters, such as that described in the paper by Entwistle and colleagues in this issue of QSHC. Their paper will certainly be of interest to all those working to develop similar methodology in other healthcare systems internationally. There is no doubt that the “new NHS” is struggling to be user responsive; only by thoughtful improvements to the methodology and approach used in primary care will it be possible to rectify the situation.