Feature

Who wants a say in the NHS?

It’s time to end paternalism in the health service and take practical steps towards involving
individuals and citizens in their health care, say Marion Barnes and Martin Evans

The NHS Confederation, Institute of Health Service Managers and NHS Executive jointly commissioned a group of health service professionals and community health council officers to consider the current state of public participation in the NHS and to make recommendations for its development. Their report was launched at the 50th anniversary conference for the NHS in July.¹

One of the overarching aims of the Labour government is to rebuild confidence in public services. Action is being taken to open up decision-making processes and find new ways of including citizens in the planning and provision of public services. Within the NHS, public participation in decision-making is on the agenda in a way unprecedented since its establishment 50 years ago. There are various reasons for this:

• many people are no longer prepared to accept that the view of ‘experts’ should go unquestioned;
• information about health, illness and treatment options is more widely available than ever before;
• developments in health technologies and in scientific knowledge generate questions which, ironically, cannot be resolved by reference to science or technology alone: they raise ethical, moral and political issues that need public debate;
• the NHS must continually adapt to meet the changing health needs of an ageing and increasingly diverse population, yet people feel comfortable with familiarity — change in the pattern of health services is sometimes seen as a threat to the existence of health care itself. So the public needs to be involved in the direction of change if they are to feel confident about those changes;
• there are still health inequalities and these inequalities have widened, as society itself has become more unequal in terms of earnings and opportunities. Successful action to reduce inequalities and to promote health can only be taken with the active participation of the communities and individuals that have been excluded from the benefits available to more affluent members of society.

Public participation in the NHS has historically been weak for at least two reasons. First, the language of public participation has never been clear and never been agreed: ‘consumer’, ‘customer’, ‘user’, ‘public’, ‘patient’, ‘citizen’, ‘involvement’, ‘consultation’, ‘participation’ are all words that have been joined together in a myriad of pairings to create confusion and a lack of focus. The working group acknowledged that this confusion probably reflected the multi-faceted nature of the NHS and the varying relationships it has with those for whom it provides.

Second, many of the innovations in public participation have involved one-off ‘projects’ — initiatives which have depended on the enthusiasm of particular individuals and have been difficult or impossible to sustain because they are not seen as integral to the way in which the service works.

The group felt that if public participation was to develop in any meaningful way there was a need for a strategic approach including different models of participation, reflecting the different purposes for which groups might become involved.

Four models of participation emerged from the discussions as worthy of development (see box). Each has a definite focus but together are intended to contribute to a strategy capable of ensuring that public participation becomes integral to the way in which the NHS works.

Through these models, the NHS is challenged to form a new, more open and more consistent relationship with the public as users of the service, and to play its part in contributing to democratic renewal and social cohesion.

The architects of the Patient Partnership Strategy have recognised that public participation should not be seen as an additional task for already stretched health service workers. Rather it should be a means for achieving the objectives of the service. We can illustrate this by taking two of the report’s recommendations which demonstrate how the different models might play a part in achieving two key purposes set out in the White Paper and Green Papers.

Public Health and Health Improvement Programmes. Community development seeks to achieve the community participation necessary to build social capital and create a healthy social environment — in one sense community development is public participation in public health.

When communities identify the factors that affect their health they immediately start to make links between factors such as crime, transport, housing, and employment. It may be easier to see these links from the community perspective than from within the bureaucracy of the health service. This is why community development is a key method to be adopted within Health Action Zones. It seeks to engage with communities at the sharp end of health inequalities and should include exploring issues of access to quality health services, as well as health improvement.

The group is recommending that: community development methods should be used to engage excluded and marginalised groups in the Health Improvement Programme (HIP) process. All health authorities should ensure that a community-based health needs assessment is part of the HIP because it enables people to make an important contribution to defining local priorities and targets and in proposing alternative solutions to health problems.

Primary Care Groups. The principle underpinning direct user participation in health services must be that there should be opportunities for user input in all decisions affecting them — at both an individual and collective level. So, for example, if PCGs are discussing the commissioning of maternity services, representatives from local women’s health groups should be active participants in those deliberations. When PCGs are making their contributions to the HIP, they should be seeking input from all relevant user/patient groups to ensure that they can reflect patients’ actual experience, rather than health professionals’ perceptions of that experience. To fulfill their responsibilities of assuring quality, PCGs should be involving users and representatives of user groups in service evaluation, including defining evaluation criteria.

In order to ensure that user views are reflected in overall decision-making, consideration should be given to user representation on PCG boards. Any working groups established to focus on particular clinical or service issues should have relevant user representation within those groups.

In all, the report contains 35 specific recommendations of ways in which the different models of participation can contribute to the objectives of the new policy initiatives.

The NHS is not alone in needing to improve its relationship with the people it serves. Throughout the public sector, there are examples of innovations in working with service users and in increasing accountability to local people. The government is prioritising new approaches to policy that reflect the inter-agency or ‘cross-cutting’ nature of many of the major policy problems that need to be addressed. Solutions cannot be found within the confines of one government department or one public service.

The same is true in developing strategies for public participation. There have been cases of people experiencing ‘consultation overload’. User organisations have complained of lack of co-ordination between, for example, health authorities and social services in seeking their views. More cynically, some have been aware of different parts of the service ‘playing the user card’ in competition with each other. There is considerable experience of working with the public in contexts as diverse as regeneration, community safety, community care and education. It makes sense, both practically and in terms of addressing issues that cut across the responsibilities of other agencies, for the NHS to work in partnership in developing public participation.

Many health service workers feel unprepared to work with patients, communities and local citizens: their professional training has encouraged them to regard themselves as the ‘experts’ and not to engage in a dialogue that draws out the expertise of patients and lay people. The cost of public participation is seen as competing with investment in direct patient care.

Local action to encourage innovation has not always been encouraged in a service in which guidance is issued from the centre and performance is required to meet centrally defined objectives. Central commitment is essential and the Patient Partnership Strategy is a start but it is also important for NHS staff to recognise that public participation is not something for which menus can be provided and tasks ticked off. It will involve changes in the way in which clinicians and managers are trained, support to individuals and communities to enable their participation, more and better health information and appropriate research to support learning and the dissemination of good practice.

Fifty years on, a paternalistic structure is no longer sustainable for the NHS, nor can it help the service achieve the mission with which it was charged. We need a new paradigm if we are to restore public confidence and that confidence will come from participation, individually, in communities and at national level.