Feature

What do people want?

Gaining ‘consumer’ views in the new NHS is not simply a technical issue, says Safder Mohammed

The reform of the health service has engendered a series of critical debates not only on how to run a health service but, and perhaps more importantly, also why and for whom the health service exists. Within each of the debates there are many and varied levels of reflecting the diversity of the NHS and new principles are being created and adopted. For some the discussion centres on the new roles, or rather the new definitions that have been introduced as a consequence of the 1990 NHS and Community Care Act. For others there is concern over the already well-documented failings of the health service.

That the reforms failed to address the need to challenge the fundamental issue of health care finance cuts across the debates taking place. It would be impossible to discuss the future of any health care system without some discussion of money.

The fact such issues preoccupy health care professionals is in itself a matter for concern, particularly for those faced with difficult decisions as to who receives which treatment. For the ‘health care purchaser’ the dilemmas are endless and go beyond questions of economics. Professional, ethical and moral dilemmas abound.

There are also dilemmas facing the community. It is difficult to escape the political debate surrounding the NHS. It affects us all in some way. For many people it is more than a political debate, it is deeply personal. For others it is a debate about the inadequacy of services, and the promotion of new ideas to overcome those inadequacies. It is here that health service professionals and the community must seek a common ground. With reform has come a whole new set of imperatives, the need to improve quality of services, to make services more responsive to users’ needs, and more explicitly than ever before the need to contain costs and, as a result, to ration health care.

In the recent past we have seen a plethora of experiments, from Oregon to Ealing, involving users in decision making. The common theme in all these experiments has been to try to determine ways of rationing health services and providing what people want. These, often mutually exclusive, aims have been conflated in an attempt to absolve those with responsibility for health and welfare of that responsibility, or at least some of it. The concept of the ‘active citizen’ is taking shape. Charters of all kinds are set to dominate our lives. We have rights that we must express; merely defending our rights is not enough. If we want appropriate, accessible and sensitive care we must involve ourselves in the quest to achieve it. Within the parameters prescribed by the government, we have a right to become participants in the shaping of the health service.

The extremities and absurdities of Oregon and other experiments are becoming apparent. It is no easy task to set limits and priorities in health care provision but it has to be done. Those who have traditionally been the motivators of health service planning and development are being urged to open their eyes and their minds to new influences. Planning health care is not a pure science, nor is it an econometric equation with clear answers. The determination of investment and disinvestment, the interpretation of wants and needs into services is also a sociological exercise, the limits of which are unclear.

New rules have to emerge, the relationship between user and professional has to change, those with ‘power’ have to loosen their grip but at the same time users and communities have to recognise the limits that are placed on their own empowerment. There has been no revolution, decision making is still and probably always will be in the hands of politicians, professionals and managers, paid to exercise delegated responsibility on our behalf. This does not mean that a more active and participatory role by users is unnecessary, but rather that the rules of engagement need to be made more explicit.

It is not enough to establish a new relationship without being clear about the part each actor has to play. Expectations on all sides are high, they are not simple and will not be easily reconciled. The assessment of need is evolutionary and changes in needs, both individual and collective, can be rapid. If need is to be satisfied then the development of services and the priorities that govern them must also be evolutionary. But the evolution must be more reflective and humane than technical and economic otherwise the user is disabled rather than empowered.

The growth of technologies and the distance this has created between people and the care they receive is such that it is no longer possible to fully understand how or why a particular course of action is taken. If the user is to become empowered, the professional has to bring the art of health care and medicine back to a reality that ordinary people can relate to. Only then can we become active participants in the decisions that affect our lives.