Realising Participation

Elderly People as Active Users of Health and Social Care

Kathryn Roberts, Tom Chapman

• Publisher: Routledge
• Year: 2017
• eBook ISBN: 9781351787796
• Edition: 1
• Topic: Social Sciences
• Subtopic: Sociology
• Index: Social Sciences

This title was first published in 2001: During the last twenty years government rhetoric in the UK has increasingly advocated that statutory health and social care services should regard and treat recipients as 'consumers' in the same way as companies and organizations in the private sector. This involves a considerable cultural change on the part of both service providers and their clients, and this timely study explores the extent to which such a cultural change is actually taking place in British society. The utilization of welfare services by a sample of people aged 70 and above on discharge from inpatient care and in a short period afterwards is examined as a critical testbed for key components of consumerism, including participation, representation, access, choice, information and redress. The book explores not only the extent to which opportunities are being provided for users to play an active role in their care, but also their degree of willingness to assume such a role. By investigating the experiences of clients from a generation which might be considered relatively resistant to a more active participation in health and social care, the study offers an important insight into the extent to which a real social transformation is indeed taking place in the British welfare services.

1  Introduction

Rationale

The far-reaching changes to the delivery of welfare underpinned by the rhetoric and underlying philosophy of successive Conservative administrations between 1979 and 1997, and the New Labour government from May 1997, provide the rationale for this research. Policy implemented prior to 1997 introduced private sector mechanisms and values into the welfare services and indeed the wider public sector (McCarthy, 1989; Farnham and Horton, 1993; Kirkpatrick and Lucio, 1995) with the twin aims of reducing the role of the state and increasing efficiency. Emphasis was given to the introduction of competition into the provision of services along with other market-oriented principles with the ostensible aims of improving quality and ‘getting closer to the service user’. In terms of welfare provision, this was particularly apparent in the post-1989 period when, prominent amongst the rhetoric, were references to how the position of the service user would be enhanced (for example, Department of Health, 1989a; Department of Health, 1989b; Department of Health, 1991; NHS Management Executive, 1992; Department of Health, 1994b). This was both in terms of service provision becoming more responsive to users and in the provision of opportunities for service users to assume an active role. It is against this policy framework (analysed in Chapter 3) that the present study took place.

Whilst the new Labour government aims to eliminate market-oriented bureaucracy in the provision of welfare, the principles that services should be responsive and accessible to those who seek to use them remain of paramount importance (Department of Health, 1997a; NHS Executive, 1997; The Labour Party, 1997).

Indeed, it is very evident in official policy documents published since New Labour assumed power in May 1997 that patient empowerment and patient participation have become important principles designed, amongst others, to foster a radical change in the relationship between service users and health and social care professionals. Following the publication of the NHS National Plan (July 2000) Julian Neuberger, the Chief Executive of the King’s Fund, claimed that ‘For the first time in its 52 year history, patients have been put at the heart of the NHS … The NHS now has a clear statement of values for the 21st Century to reinforce its 1948 founding values. By bringing patients into all parts of the NHS, the National Plan should ensure that they have a much greater say in how the service is run, and in how care is provided’ (King’s Fund press release, 27 July 2000).

In December 2000 The Health and Social Care Bill reinforced the message that ‘patients are a the heart of a modern NHS’. For the first time, the NHS has a duty to consult with and involve the public on the planning and delivery of local health services, with mechanisms placing patients and public in the driving seat.

This study took place between 1996 and 1998. It’s findings provide evidence of the extent to which one segment of the public are ready to respond to the government’s invitation to place themselves in the driving seat. It is also a critical test of the extent to which the Conservative ‘reforms’ in the 1990’s which claimed to introduce ‘consumerism’ into welfare have changed perceptions and practices on the part of both the providers and usersof services. The study is a search for hard evidence.

Scope of Investigation

This research investigates the utilisation of health and social care services by a defined sector of the population, with particular reference to how active users are in this process. The concept of participation which is central to this investigation; is a fairly wide-ranging term that can incorporate a number of activities (see Chapter 2). A number of associated concepts are also explored.

The criteria upon which this study is based are participation, representation, access, choice, information and redress. These are derived from the work of Potter (1988), Barnes, Prior and Thomas (1990) and Deakin and Wright (1990). In relation to the public sector, these authors respectively perceive these criteria as necessary to shift the balance of power towards users (as relating to user control) and as necessary for the position of the user to be fully recognised and strengthened. The criteria were all addressed in official policy documents and guidance issued throughout the 1989–1997 period (see chapter 3). These criteria are used in the empirical part of this study to analyse how far services are oriented towards users and the extent to which users are able and willing to assume an active role in the process of using health and social care.

The service users selected are a sample of people aged 70 years and above on discharge from inpatient care. The particular age group is defined as a ‘critical case’ (see below and Chapter 4) for this exploration of service utilisation and participation. The discharge process and the short period after is selected for investigation due to the possibility of (elderly) service users utilising both health and social care. Policy documentation during the period studied referred quite separately to the provision of care provided by the NHS and that provided by Local Authority Social Services but due to the increasingly indistinct boundaries between ‘health care’ and ‘social care’ it was necessary to consider both sectors. In addition, the possibility of respondents using care from both sectors would provide an element of comparison.

There is a diverse range of literature analysing and evaluating the reforms to the welfare state during this period, particularly focusing on specific initiatives and their implementation. This literature is drawn upon as appropriate in both formulating the analytical background to the study and in discussing the findings. The present study however is more in-depth and focused than any of this previous work as it explores a range of criteria relating to the use of both health and social care by the individual service user during and in the short period after hospital discharge. In addition, it seeks to explore both the experience and behaviour of elderly service users during this period from the perspective of both users themselves and also service providers.

Aims

Within the broad aim of exploring service utilisation and participation during and in the short period after hospital discharge among a sample of people aged 70 years and above, the specific aims of this research are:

1.  to explore the experience and behaviour of elderly users of health and social care services with regard to criteria indicating user influence or control (namely, participation, representation, access, choice, information and redress);
1.1 to compare the experience of elderly service users with regard to stipulated policies for service delivery;
1.2 to explore the ability and willingness of service users to assume an active role in the use of health and social care;

2.  to determine the experience of health and social care professionals (managers and front-line workers) regarding the introduction of user-oriented services, including the ability and willingness of elderly service users to assume an active role;

3.  to explore perceived barriers to the introduction of user-oriented health and social care services from the experience of elderly service users and health and social care professionals.

A ‘Critical’ Case

It is hypothesised here that elderly people (defined as 70 years and over) are the most ‘critical’ age group for testing whether user-oriented policies have a real and consequential role in the delivery of welfare. It is argued that elderly people are least likely to expect to ‘make a difference’ in their own care. They belong to a generation conditioned to being the passive recipients of decisions made on their behalf within the public services (Chapman and Johnson, 1995).

The idea of a ‘critical case’ was first used by Goldthorpe et al. (1971) in their study considering the embourgeoisement of the working class. They concentrated their resources on a single-case study – a critical case – and researched a population whose characteristics appeared most conducive to the shifts in values and norms being studied. This was to allow a relatively intense inquiry to take place. The rationale was to provide an opportunity to either study the phenomenon first hand or to confirm in as decisive a manner as possible doubts about its existence. If the process under study was not found to be in evidence, assumptions could then be made as to it being unlikely to occur anywhere else in society.

This study works on the opposite assumption in that the population group being studied is presumed the least likely to assume an active role; that is, the least likely group amongst which to witness the phenomena under investigation. The analysis in Chapter 4 of the social and economic circumstances of the elderly population of the United Kingdom provides a further rationale for this assumption. On this basis, if evidence is apparent of users in this age group assuming an active role, it can feasibly be extrapolated to the wider population.

Whilst the population studied are considered as a group for the purposes of sampling, every effort is taken to demonstrate the diversity of the elderly population included in this research. The analysis and discussion of the findings use various demographic, social and economic characteristics namely, gender, age group, household composition, socio-economic grouping and self-reported health status to demonstrate the heterogeneous nature of the sample. Whilst this limits the ability to draw definite conclusions, it ensures that the analysis is thorough and that no unfounded generalisations are made.

Structure of the Study

Following this Introduction, Chapter 2 traces the origins of ‘participation’ by users of public services up to 1979 to provide a historical context. It considers various definitions of ‘participation’, arguing this to be the most central and prominent of the six criteria explored by this study, in addition to considering ways in which increasing participation may be beneficial or advantageous. A basic overview of mechanisms for political participation is provided to acknowledge some of the most widespread general mechanisms in existence by which people can play a role in the policy process. The rest of Chapter 2 is then devoted to exploring ways in which users of public services have, since the 1960s, increasingly played an active role. This has been as a result of the changing nature and context of welfare delivery in addition to demands made by (groups of) users themselves and the implementation of official policy.

chapter 3 is an exploration of policy documentation and guidance issued by the Department of Health under the Conservative administrations between 1979 and 1997, with an emphasis on the post-1989 period. Expressed intentions to make the delivery of health and social care user-oriented and to encourage users to play an active role in aspects of their care are presented with particular reference to the six criteria outlined above. Specific guidance relating to the hospital discharge process is also examined in order to provide a focused context for the empirical study.

Chapter 4 is a review and summary of the literature relating to the social and economic position of elderly people in the United Kingdom insofar as it is relevant to this study. Such literature, coupled with statistics relating to demographic change and use of welfare services, show the prominence of the age group under study and strengthens the case for applying the ‘critical case’ concept to this particular sample. Incorporated within this is a review of empirical studies exploring similar issues as those considered by this study. This serves to highlight how the present study builds on existing work but also demonstrates how it is more comprehensive.

The methodology employed in the data collection phase of this study is discussed in Chapter 5, demonstrating the rationale for the research approach in terms of meeting the aims of the study and the contribution made to the validity and reliability of the findings. Ethical considerations are given particular prominence in this chapter with specific reference to the age group under study. Details of the method of analysis employed are also included in Chapter 5. The ‘Findings’ are reported in Chapter 6.

Chapters 7 and 8 comprise a discussion and interpretation of the findings of the empirical study in terms of the key themes to emerge. These themes incorporate the relationship between users and providers of care and the divide between health and social care along with differences in user experience and behaviour associated with various inter-related socio-economic and health-related variables. These chapters also provide links to existing research and theory and to the analytical background in Chapters 2 to 4. Chapter 9 contains a summary and evaluation of the research undertaken, together with a conclusion and a reconsideration of the aims of the study along with areas for further study stemming from this research.

For ease of reading and continuity, each chapter begins with an ‘introduction’ and ends with a ‘summary’ to locate it within the wider progression of the argument.

2 User Participation in the Welfare State

Introduction

The evolution of the welfare state in the United Kingdom between 1942 and 1948 marked a major shift from individual responsibility for welfare via private, informal or charitable provision to a more comprehensive publicly funded and publicly provided system. In terms of health and personal social care, resources would in the main, be distributed on the basis of professionally assessed need – ‘enlightened paternalism’ (Klein, 1984). As such, there would be little opportunity for service users to play an active role in decisions about their use of statutory care although there was still to be a role for private, informal and voluntary provision.

From the standpoint of official discourse, the provision of health and personal social care in the 1990s is quite different. Contemporary welfare provision advocates an active role for service users regarding their care in addition to the provision of services being more responsive to those who seek to use them. This quite dramatic policy shift can be directly traced to the ideology of Conservative governments in power between 1979 and 1997 (see chapter 3). Indeed it was during this period that service provision oriented towards users and an active role for service users were explicitly promoted in policy initiatives. However, preceding this significant change in government rhetoric, widespread examples of users seeking to play a role in the formulation and implementation of public services policy can in fact be traced from the 1960s through various social and political movements (Pateman, 1970; Croft and Beresford, 1990). There were also examples of government legislation during the 1960s and 1970s which aimed to increase the role and influence of users in how public services were run (Boaden et al., 1982; Deakin and Wright, 1990).

This chapter analyses the origins of user participation in the public services, specifically, the provision of health and personal social care. ‘Participation’ is an important concept in the investigation of whether users play an active role when utilising public services. Other concepts however are also relevant. The criteria of participation, representation, access, choice, information and redress are explored as important concepts in assessing whether users are assuming an active role and indeed as being indicative of any shifts in power or influence between providers and users. They have been identified as necessary to shift the balance of power towards use...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Table of Contents
• List of Figures
• List of Tables
• Preface
• Abstract
• Acknowledgements
• 1 Introduction
• 2 User Participation in the Welfare State
• 3 The Policy Concept
• 4 The Position of Elderly People in UK Society
• 5 Research Design and Methodology
• 6 Findings
• 7 Discussion I: Barriers and Enablers in the Use of Health and Social Care
• 8 Discussion II: Social Differentiation and the Use of Health and Social Care
• 9 Summary and Evaluation
• Bibliography