Feature

Strengthening service users

How should the interests and views of the users of the health service be represented at national level? Christine Hogg examines the issues

In 1975, the then Labour government first proposed a statutory body to promote the interests of patients and the public at national level. The minister of health announced his vision of a body that would give patients a voice in national decision-making with other stakeholders. It would be able to do nationally what community health councils were doing at local level.

But the newly formed community health councils opposed the proposal. They were suspicious of the government and wanted their own organisation. As a result, the Association of Community Health Councils (ACHCEW) was set up in 1977 as a statutory body with a more limited remit, no secure funding and no right to information or to be consulted. I worked in a CHC at the time and those were heady days – but it felt like a missed opportunity. Had we had a strong national body, CHCs would have been reformed long ago, rather than ignored as the NHS changed around them.

Since 1975 the voluntary health sector has developed and there are many organisations and umbrella groups bringing together smaller, mainly disease-specific, groups. But the voluntary health sector is diverse and often unable to provide a strong voice for patients or the public. The price of access to power for many is to make alliances with more powerful interests – professional or commercial. And voluntary groups are competing with each other for funding and for survival, which is not conducive to working together.

It took another 25 years for the opportunity for getting a strong national voice for users in health to come again. The NHS Plan announced new arrangements for patient and public involvement in the NHS to replace CHCs.¹ These proposals were set out without consultation. Whether or not you think CHCs were effective, this was not a good start and proved to be the most controversial part of the Health and Social Care Bill – and was dropped at the last minute to save it.

In announcing the proposals, health minister John Denham said: ‘As many patients’ organisations have argued, at national level there is still a need for a single coordinating function to give patients a collective voice based on the issues and experiences that emerge at local level. There is also a need for a body to provide support, guidance, training and development to patient, carer and public representatives.’

At the end of January the government announced that it had given funding to three organisations – the College of Health, the Long-Term Medical Conditions Alliance and the Patients Forum – to commission a scoping study on what was needed at national level. Mr Denham had stated in the House of Commons that he did not think the body needed to be statutory. However, if the study concluded that there should be a statutory body, by the time the report was finished the opportunity would be lost. Yet another consultant’s report that would sit on the shelf.

The case for a statutory body is complex. For CHCs, the issue was simple: they wanted a statutory body, but not like ACHCEW. Instead, one with real powers and rights to be consulted by government, that could talk on an equal footing with national public bodies and government departments.

Organisations in the voluntary sector were more concerned. Most wanted a strong independent voice for patients and the public at national level, secure public funding, and statutory rights to be consulted and be given information. But they were concerned that a statutory body would not be independent of government, would be inflexible and stifle innovation.

The government, in funding the study, wanted two things of the statutory body:

• For it to represent the national user voice, to be the equal partner with professional and other interests at national level – and also the access point for patient and public views for government and public bodies.
• To provide support, training and guidance for patient, carer and public representatives in the health service.

A strong independent voice does not need a statutory body (see box). Such representation could be achieved through a wider federation of voluntary organisations and the Consumers’ Health Forum of Australia is one example.² It is a membership organisation funded by government. It appoints patient representatives to national committees and comments on government consultations as part of its activities.

This is one possible model. But would it work in the UK? Maybe government would fund such a body initially, but might it not soon end up competing for public funding with its own members? Why should the government take any notice of a body that does not have statutory rights?

This is what, in fact, has happened in Australia. In practice, there was also a feeling among voluntary organisations that many of them lacked the will to cooperate. The larger established organisations, particularly those in partnership with professional and commercial interests, did not want a new body that might reduce their power. Smaller groups felt that whatever happened they would remain marginalised.

Perhaps the most important difference is that Australia did not have a well-established and highly organised local and regional arrangements for public involvement (like CHCs). A voluntary sector federation could not help the government achieve its objectives for patient and public representation by setting standards, providing training and guidance for patient councils and forums. This body would have to be statutory.

During the study, the government accepted the case for a national non-departmental public body, such as the Commission for Health Improvement, and proposed an amendment to the Health and Social Care Bill when it reached the House of Lords. The exact functions and structure were to be subject to wider consultation.

Such a body was envisaged as enabling better understanding of what the public wanted from participation and as a vehicle for promoting good practice. However, there is a need not only for basic research into patients’, carers’ and citizens’ experiences of participation, but also into which forms of participation are effective in helping services become more patient-centred. It is also necessary to consider the issue of how lay representatives can put forward a wider range of experiences than their own, and how they can be accountable to a wider constituency. A national body could help answer such questions and promote good practice throughout the NHS.

Further issues, however, are yet to be resolved, which include the following questions:

• How will the body be structured? We have argued that the traditional quango model of appointments of the great and good is outmoded. The council needs to be elected from a constituency of people involved locally and nationally to represent users. Why not follow the example of the General Medical Council, which has proposed that its new governing board might be elected from a wider council?
• Can patient/public representatives in the statutory and voluntary sectors work together? In many areas CHCs have worked closely with the voluntary sector and been a resource for them. We need to replicate this at national level. We need to find innovative ways of working. The separation of CHCs – and their own body ACHCEW – and the voluntary health sector is divisive and weakens the health user movement.
• Will it stifle real user voices? A national body could easily become a gatekeeper, preventing other voices being heard at national level. Again, overseas experiences illustrate the importance of not looking for simple answers and of recognising the diversity of the user movement.

The issues are complex, but the proposal for a national body is an exciting opportunity to bring together the user movement and give people who are not part of traditional networks a voice. It would provide a securely funded organisation able to speak as an equal with other public bodies. It would not compete with voluntary sector organisations and could, in fact, strengthen them. If we do not seize this opportunity it could be another 25 years before we get another chance.

Voluntary organisations concerned about what this new body would mean for them should take heart from experiences in the Netherlands.³ Prompted by a government initiative, a national federation of patient and consumer organisations was set up as a coalition of consumer organisations, patients’ organisations and organisations of elderly people in 1992. With public funding, it provides a platform for many organisations and interest groups whose voice would not normally be heard at the highest political level.

Before the coalition was set up, the user lobby was scattered and ineffective in the Netherlands. The federation does not try to speak for all patients but enables different groups to speak for them. Like the proposal for England, the Dutch initiative crosses the divide between government and the voluntary sector to create a strong collective voice. One difference is that the patient/public participation system is based on legislation that clearly defines the rights and powers of patients – the federation found that goodwill was not enough. The most likely way that we will get a stronger framework for patients’ rights in the UK is through a strong national lobby.

Although the amendment was lost, the government is still committed to setting up a national body. It is up to us to use the time available for consultation and reflection to get it right

Patient and Public Involvement: what is needed at national level? by Christine Hogg and Lindsey Graham is available from the Patients Forum, 11 St John Street, London WC1N 2EB.thepatientsforum.org.uk