Feature

Looking for a common interest

Professions, pharmaceutical companies and government are courting user groups as never before. But this may weaken the user movement rather than strengthen it, warns Christine Hogg

The new ‘modern and dependable’ NHS seems to be founded on partnerships: private-public partnerships, patient-doctor partnerships, pharmaceutical partnerships, and so on. The idea of partnership – co-operation in achieving shared goals – has immediate attractions. But look it up in the dictionary and you will find partnership requires equality and sharing risks. This may sometimes describe co-operation between health and local authorities or even between commercial and statutory sectors. But can it apply to partnerships with patients?

Partnerships between users and professionals, drug companies or government are a myth. Patients do not share the same risks as the professionals who care for them, nor the same access to information. Voluntary organisations have neither the financial resources nor the power of professions or the pharmaceutical industry.

Describing these relationships as partnerships is not just wrong, but dangerous. It ignores the unequal power and the possibility of conflict. It is based on an assumption that all those working in health care are working in the best interests of patients. For partnerships to exist health service users need power and there are many reasons why this remains out of reach. These include the way government is organised, the strength of other interest groups and the nature of the voluntary sector in health.

How government works

To campaign effectively at a national level you have to know whom to lobby and where to target your campaign, but there is no overall national health policy. Different government departments are concerned with health but have inherent conflicts of interest. The Department of Health, for example, has responsibility for promoting the pharmaceutical industry while also getting the best deal for the NHS. The National Consumer Council has argued that responsibility should be transferred to the Department of Trade to avoid this conflict. And government departments are traditionally secretive. If you do not know who is making decisions, how can you influence them? It does not look as if the Freedom of Information Act is going to make very much difference here.

The government also decides where to get advice and who is considered an ‘expert’ – but how experts are defined may determine the outcome. For example, the Calman Hine report on cancer services included no user representatives and did not make recommendations on wider issues of living with cancer, like psychological and social support, which are so important to users. Changing Childbirth, by contrast, included only one obstetrician – four of nine members were ‘lay’ and seven were women. The recommendations that resulted were those that user groups had been campaigning for and would have been very different in a committee dominated by obstetricians.

Nor is there any forum for debates about key issues, such as rationing and ethics of research or treatment. The government prefers rationing decisions to be made by health authorities and local authorities – as far as possible from itself – while the traditional response to ethical issues, such as cloning or genetic research, is to set up yet another committee and so leave the debate to ‘experts’ who are out of the public arena.

Powerful lobbies

Government needs the co-operation of powerful groups – professional organisations and drug companies – to make policies workable. But it does not see the voluntary sector or users in the same way.

These powerful groups also have common interests. In many areas professional and commercial interests are shared. The pharmaceutical industry funds research and also champions clinical freedom for doctors. The relationships can be so close that the National Consumer Council has observed that it is impossible to find professional members without links with the industry to appoint to the Committee on the Safety of Medicines. All the more reason, you would think, to have a few lay people with no conflict of interest – but they are excluded.

Disorganised user voices

The user movement in Britain is disorganised, disparate and dismally funded. Funding for the voluntary sector generally depends on its allies. Most voluntary organisations involve users, concerned citizens and professionals, but the balance is crucial. The most powerful have been the professionally-led groups. The richest are research charities set up when the urgent need was for medical research, and the interests of professionals and users seemed identical. Examples include the Imperial Cancer Campaign, the British Heart Foundation or the British Diabetic Association.

Professionals tend to be heavily involved in these organisations, which help them to raise funds and promote their specialty. This can lead to splits if members feel that the organisation no longer represents them. The Insulin Dependent Diabetes Trust was formed when some members felt that the BDA was ignoring the problems and serious side effects of a newer form of insulin.

Other groups are based on a balance of professionals and users, such as ASH, MIND, or MENCAP. Often they campaign to promote government policies which are not being implemented locally. They are less financially secure and more likely to depend on government funds to survive.

Some consumer organisations, such as the Consumers Association and the National Consumer Council, also make forays into health policy. Their contribution is particularly important because they come from the perspective of retail consumers, rather than from the health world where we seem to believe that everyone acts in the patient’s interests until proved to the contrary.

Perhaps the most significant trend is the growth in ‘partnership’ between commercial companies and the voluntary sector. Drug companies have been quick to see the benefits of such alliances. As a minimum they obtain good public relations and advertising, but they may also be able to stimulate consumer demand for their drugs, creating pressure to fast-track a drug through the licensing procedures or bypass medical professionals, who may be more sceptical of the benefits and more conscious of the costs. We have seen this with HIV drugs, beta interferon and drugs for some skin conditions. Those organisation that accept such alliances are likely to be increasingly influential in the future.

A final group are user-led organisations. For these legitimacy comes from users’ own experiences. Examples include the Association for Improvements in Maternity Services, Survivors Speak Out, People First, or RAGE (Radiotherapy Action Exposure). They lack funding and may not be viable in the long term, depending strongly on the commitment of key individuals.

An independent user lobby

Most people who become involved in the voluntary sector do so out of concern for a particular condition, such as mental health or asthma. Generic organisations, such as the College of Health and the Patients Association, do not have a large grass roots membership. People also get involved locally through community health councils, but these have not been able to promote user involvement nationally. Recently, umbrella groups and alliances such as the Long-Term Medical Conditions Alliance, the Patients Forum and the Disability Network have been set up, but they represent such disparate interests that they are more likely to lobby for voluntary sector interests than provide the independent co-ordinated lobby for users that is needed.

If the voluntary sector is not to be caught up in unequal partnerships there has to be investment in a national forum. This should be a place where funds are not tied to supporting the activities of government, professions or the pharmaceutical industry; where diversity and conflict between user groups, between professionals and users and government is accepted as a part of democracy; and where the term ‘expert’ is redefined to include people who represent the public, as users as well as citizens.

There are countries which have taken such an initiative. In the Netherlands, for example, there is a national federation of patient and consumer organisations. This coalition provides information, identifies needs through research, and co-ordinates the strategies of interest groups, integrating both citizens’ and users’ views.

The need for a lobby like this at a national level is increasingly important in the light of the globalisation of health care and public health issues. As citizens and users, it is no longer enough to lobby governments: representation is needed at international level. In public health this is already clear. The BSE crisis concentrated European minds on public health policy, and at some point health concerns may become part of the debate on the Common Agricultural Policy.

There is also an international health care market, with patients travelling abroad for treatment. Drug companies are marketing across borders and via the Internet, and prefer to do their research in countries where regulation and ethical monitoring is weak, such as Eastern Europe or the Third World.

Vigorous consumer and user groups at international level will be more and more important in the future. And who will fund such groups? International patient organisations are being set up, but often with funding from the pharmaceutical industry. And this brings us back to the illusory ‘partnerships’ which disguise the real interests behind these unequal alliances.