Citizens, Consumers and the NHS

Capturing Voices

Christine Hogg

• Publisher: Bloomsbury Academic
• Year: 2008
• ISBN:
  9781350310650
• Edition: 1
• Topic: Medicine
• Subtopic: Nursing

Exploring the story of user involvement in the NHS over the last 30 years, this fascinating new book provides an analysis of the conceptual terrain that underlies debates about public and patient involvement. It is essential reading for students in all health related disciplines for whom the user experience is key.

Introduction

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‘The ambiguity attached to participation has helped to foster its own cause. Because so many different hopes have been linked with it, so many different expectations about what it will achieve, it has been embraced by spokesmen of highly varying political hues. Consumers have advocated participation in order to achieve their particular ends and the service providers have similarly welcomed it in order to serve theirs. The very uncertainty of its impact has enabled a common rallying call’. Ann Richardson, 1983: 99.

Patient and public involvement has become a rallying call in the political arena, seen as part of the solution to the problems facing health services in the industrialised world. The demand for and costs of medical treatments are increasing. People are living longer, but often with chronic conditions. The expectations of affluent people are greater and they expect public services to be designed to meet their individual needs. All Western health systems are realising that there are not the economic resources to meet these demands indefinitely. Meanwhile inequalities both within and between countries are increasing.

The need to take account of the views of users and citizens is a consistent theme of healthcare reform throughout wealthy developed countries, but there is limited insight or evidence about how people should be involved or how it actually improves health outcomes (WHO, 2006). While everyone agrees that involving lay people in healthcare decisions is ‘good’, there are different underlying philosophies about the relationship of citizens to the state (see Box 1.1). The enthusiasm for user involvement is based on political views rather than evidence of impact (Box 1.2).

There is more support for the theory of user involvement than for its implementation. Over the last 30 years different approaches to participation have been pursued and dropped as the perceived needs of governments and the National Health Service (NHS) have changed. Policy changes are outlined in the chronology at the end of the chapter. Throughout there has been a persistent confusion about whether government wants to involve people in order to provide better health services or to involve them as citizens as part of the democratic process. Is it in order to promote democratic accountability? To challenge social inequalities? To promote active citizenship? To improve patients’ experiences? To promote the market through consumerism and choice? To encourage self-reliance and personal responsibility? To legitimate decisions about priorities and rationing of treatment and healthcare? This confusion may have contributed to the failure of policies to involve patients and the public and limited the influence that people, as patients and citizens have on the development of health and social care.

Box 1.1 What is in a name?

The words we choose to use to describe the lay person – citizen, customer, consumer, patient, service user or client represents a particular viewpoint and has good and bad connotations.

People themselves when receiving healthcare tend to see themselves as patients, but the term can be seen as demeaning, implying a passive role.

The term ‘consumer’ or ‘customer’ focuses on the individual as a more active player but no one sees themselves as consumers or customers, and it does not accurately reflect the experience of receiving healthcare, which is not just another product or service in the market.

Most people do not see themselves as ‘users’ and the term can be confused with problem drug and alcohol users.

Some people who have experienced mental health services prefer to describe themselves as ‘survivors’ of the system.

In looking at collective involvement there are also different terms. ‘Lay’ people are defined in relation to professionals and the expertise that they do not have. The term ‘citizen’ implies rights, which the more diffuse word ‘public’ does not, but excludes migrants.

Bearing in mind these difficulties, the terms used in this book may vary with the context.

Box 1.2 Evidence for effectiveness

There is an extraordinary dearth of evidence about the outcomes of involvement and commentators rely on the writer’s view of what worked and what did not.

In 2002 a systematic review identified 337 studies about involving patients in planning and developing healthcare, but only 12 percent described the effects and changes resulting from involvement and none examined the impact these changes might have had for other users. None used comparative or experimental research methods. The evidence that there was, supported the view that patients had contributed to changes across a wide range of different settings. Perhaps the greatest impact of user involvement is in a change of culture, which is hard to measure.

Source: Crawford et al., 2002.

This book explores changing policies on user involvement over the last 30 years in the UK. It examines the life and death of community health councils (CHCs) and subsequent attempts to put structures in place to enable user voices in health and social care.

Origins in social rights

Many different concerns came together in the 1960s and early 1970s to lead governments to believe that increased lay involvement, in the form of community health councils, might help solve many of the problems facing the NHS. Governments were frustrated by the failure of the NHS to implement national policies at local level and address inequalities in the distribution of resources between geographical areas or between acute and long-term care. More local involvement might help reduce these inequalities, address the democratic deficit in the NHS, increase the involvement of volunteers in the NHS and improve the co-ordination of services and planning between the NHS and local authorities.

Improving access and reaching all parts of the community was one of the expectations of community health councils when they were established in 1974. It was recognised that those most in need were not benefiting from the new welfare state. The NHS was based on every citizen having social rights, and citizens were entitled to benefits, such as free healthcare, which were not charity. Among the many expectations of CHCs, it was hoped that they would strengthen the voices of the public in the NHS, particularly those who were seen as benefiting least from their social rights. Early verdicts were that CHCs were a qualified success but needed strengthening. CHCs continued until 2003 but were increasingly struggling with the changes in the NHS and limited resources (Chapters 2, 3 and 4).

Another objective of introducing more lay involvement in 1974 was to achieve greater accountability and address the democratic deficit in the NHS. In the 1980s and 1990s CHCs lost their monopoly and many different consultation methods were used by the NHS and local authorities. In 2001 all NHS bodies were given a duty to consult and local government given powers of scrutiny of the NHS. Overview and scrutiny committees were set up, taking over some of the functions of CHCs. However, it was increasingly clear that there were more fundamental problems in representative democracy that these approaches did not address (Chapter 5).

The rise of consumer rights

The world changed with the development of management approaches in the 1980s and the market in the 1990s and governments wanted different things from user involvement. In 1979 the Labour Government of James Callaghan was replaced by a Conservative Government. The new Prime Minister, Margaret Thatcher, had very different ideas about how to tackle the problems of the NHS and the relationship of citizens to the state. Social rights on which the welfare state was based were questioned. The New Right considered that promoting social rights had undermined good citizenship by weakening personal responsibility.

With the introduction of general management in the 1980s and the internal market in the 1990s, governments saw the possibilities of using individual consumers as levers for change. It was assumed that the consumer can make choices and help to promote the market and improve the efficiency of pu...

Table of contents

• Cover
• Title
• Copyright
• Contents
• List of Boxes
• Acknowledgements
• List of Abbreviations
• Personal Note
• The Research
• 1 Introduction
• 2 The Story Begins
• 3 Community Health Councils – The Rise 1974–1979
• 4 Community Health Councils – The Decline 1979–1997
• 5 Tackling the Democratic Deficit
• 6 The Rise of Consumer Rights
• 7 Promoting Health
• 8 Past Imperfect… Abolishing CHCs
• 9 The Second Coming – The Commission and Patients’ Forums
• 10 Renewing Democracy
• 11 Conclusions
• Notes
• Further Reading
• References
• Index