We start this collection with contributions that take different approaches to understanding the nature and significance of collective action among service users themselves, independently of any action to encourage or invite their contribution by public officials and service deliverers. As we suggested in the Introduction, it has sometimes been hard to draw a clear line between autonomous action by service users and official involvement initiatives because official initiatives have led to ‘organised’ users being invited to take part. Indeed, it has often been the case that involvement has been made possible because service users have developed confidence by taking part...

Survivors History Group is run by mental health service users/survivors who value the history of the survivor movement. Membership is open to anyone, survivor or not, who shares our interest. Historians in our sense are people who write or tell history, for whatever reason, not just people who are experts at doing so. We welcome all histories of the movement. This chapter is an introduction to some of the stories about the United Kingdom (UK) movement that have already been told. Several of the authors discussed are members of the group. The group started in 2005 and much of our...

The Nottingham Advocacy Group (NAG) was one of the first mental health service user groups to be established in England. It emerged during the mid-1980s, well before user involvement in mental health services became accepted by professionals or policy makers. In this chapter we tell the story of NAG’s development and consider the significance of the group for those who have taken part in it and for the development of the mental health service user movement more broadly.¹

In 1985, Wouter van der Graaf spoke at the World Mental Health Conference in Brighton about the development of Patients’ Councils in...

The focus of this chapter is the relationship of solidarity and diversity in user involvement and service user organisations and movements. There is a much wider discussion that has suggested that the move to seek more inclusive and diverse action and organisation has weakened solidarity and distracted from people’s efforts to work together effectively collectively (Todd and Taylor, 2004a). There has also been a discussion related to service users and service user involvement, which has highlighted the limitations of such developments to address diversity adequately, resulting sometimes in narrow and hierarchical involvement that can actually exclude many people and groups,...

As the contributions throughout this collection highlight in different ways, the user involvement movement has scored many successes over the last few decades. In its transition from ‘margin to mainstream’ (see Introduction, this volume), it has secured increasing influence in the delivery of mental and physical healthcare, social services and other fields of public service provision. However, as many of the contributions also indicate, in many cases this influence has come at a cost. The mainstreaming of user involvement is seen by some as a deradicalisation, and even a co-optation to dominant managerial, professional and, indeed, academic ways of thinking...

In this chapter we will explore experiential knowledge, including claims for such knowledge, and where it exists, evidence of impact. Additionally, we will consider the major challenges that service users and professionals may face when accessing or working with this knowledge. We have two main aims: to explore some of the thinking behind experiential knowledge and to consider how experiential knowledge is embodied in service design and research. For the first aim we draw on work from four distinct settings. This is only a brief introduction to these issues, but we hope it will be helpful to see where such...

The contributions in Part One have explored different ways in which service users have come together in their own organisations and sought to make changes in policy, services and the way in which issues relating to disability, mental health problems and illness are understood. Rather than offer any conclusions, we suggest that the contributions in Part One raise the following questions, which could usefully be a focus for discussion among students and activists, and which might be used to guide further research into collective action among service users. These questions are not exhaustive and may be approached in different ways....

Part Two is concerned with user involvement in the context of service delivery. The development of user involvement within the United Kingdom (UK) was briefly described in the Introduction to this book and specific examples of user involvement in practice are explored in the chapters that follow. Here we discuss some of the key issues affecting the way in which this has developed. As a starting point we need to recognise that user involvement, as both a concept and as a practice, can have multiple meanings. As we have already seen, what user involvement is, what it aims to achieve...

Developing alliances between service users and workers can be an important way to advance liberatory reform within social welfare services (Beresford and Croft, 2004). External to public service institutions, campaigns have sometimes brought together service users, workers and trades unions where there are shared interests, illustrated through recent examples of protests against public service cuts (BBC, 2010). Organisations such as the Social Work Action Network (SWAN) draw together practitioners, social welfare users, academics and students, united through addressing social and structural inequalities. SWAN’s manifesto states that ‘progressive change must involve users and all front line workers’ (Jones et al, 2004)....

This chapter tracks the changing pattern of service user involvement in social policy development between 1990 and 2010. Social policy has itself developed in line with current societal and political priorities of personal choice and control and in response to learning from service users. Drawing on our experience locally and nationally, at times shared and at others separate, we seek to demonstrate these developments and the interaction between them. We speak from our very different perspectives – one as a director of social services, and the other as both a director of a county user-controlled organisation, Wiltshire and Swindon Users’...

This chapter discusses how policy changes and practices occurred as a result of a research study in Northern Ireland where service user and carer researchers worked collaboratively with academic researchers to recommend strategic and operational ways in which larger health and social care organisations could more meaningfully engage with service users and carers. The study, ‘Looking out from the Middle’ (Duffy, 2008), was commissioned by the Social Care Institute for Excellence (SCIE) in partnership with the Northern Ireland Social Care Council (NISCC)¹ and the Regulation and Quality Improvement Authority (RQIA).² The key objectives of this research were as follows:

to...

In this chapter we describe and critique a leadership programme to develop and equip people who use mental health services to deliver mental health awareness training. The programme was called Changing Minds. Initially, however, we briefly review the context for the development of the programme.

Over the past 10 years, service user involvement has finally become enshrined in policy. The government has made it a requirement that people who use mental health services should be at the heart of them in terms of design, delivery, commissioning and operations. It is a‘must do’for the mental health system and an...

Health and social care services across the United Kingdom (UK) are now committed to involving users in the planning, development and evaluation of their services, reinforced by policy and legislation (Staniszewska et al, 2008). The importance of patient and public involvement (PPI) has also been emphasised in the coalition government’s White Paper,Equity and excellence: Liberating the NHS(DH, 2010a). However, the translation of these policy commitments into practice and the impact that they have remain open to question, for example a paper from the Local Government Information Unit (LGIU, 2008) highlights the top-down nature of many of these initiatives....

Contributions in Part Two focused on issues that emerge from initiatives that aim to enable service users to work with service providers in achieving change. Again, we offer the following questions to stimulate further reflection and research:

Can collaborative working between service users and professionals ever be understood as a partnership? Is co-production effectively the same as partnership?

How well embedded is user involvement in service-providing organisations, and what are the factors that support effective mainstreaming of user involvement initiatives?

Why might service users decide not to continue to devote their energies to involvement activities that are embedded within services?...

Alongside demands for greater involvement of service users in policy making, planning and delivery of services, service users have also sought greater involvement in research that affects their lives. Many of the papers submitted to the conference that this collection is based on were orientated towards user involvement in research. This suggests that this is now a significant site for user involvement and user-led activity and that the co-production of knowledge is seen as an important way of achieving change. The concept of ‘co-production’ can be applied both to service delivery (Bovaird, 2007; Needham, 2007) and to the production of...

As a research team, and over a number of years, we have undertaken a range of research studies that have explored experiences of teenage pregnancy and young parenthood. Our experience of undertaking research in this area has uncovered inherent tensions when thinking about service user involvement and participatory methods. Academic researchers can be reluctant to reveal such tensions or limitations in their research, but we believe that a focus on theprocessof research with service users, as well as on any findings or recommendations, is essential to gaining a clearer understanding of what is meant when referring to service...

In this chapter we discuss the legislative and policy context for children and young people’s participation in the United Kingdom (UK), and how this relates to the evidence base for their involvement in research. We then examine a specific project developed by the NCB (National Children’s Bureau) Research Centre, called ‘PEAR (Public health, Education, Awareness, Research): our voices, our health’, which supported young people to contribute to public health research. We consider the lessons from this project for the involvement of children and young people (CYP) in research and policy, with contributions from four young people who are members of...

This chapter describes my development and facilitation of a participatory action research project engaging young people with varying levels of hearing loss. The project description serves as a helpful platform from which to critically reflect on issues of power and position when collaborating with young people (Fraser et al, 2004); social and cultural identities in relation to deafness and disability (Bauman, 2008); and the specific tensions I have encountered when seeking to develop a practice that fosters genuine partnerships and participatory values throughout the research process.

Within this context, the notion of ‘partnership’ represents both relationships between individuals or groups...

Over recent years the drive to give older people ‘a voice’ has gained momentum. Involving older people in the design, delivery, commissioning and monitoring of services has become part of United Kingdom (UK) government policy (DH, 2001a, 2009a; DWP, 2005, 2009). In part this can be understood as a response to demographic change as more people are living longer and healthier lives and assumptions about old age have been increasingly challenged. However, the framework of involvement has generally been located within a consumerist approach, with a focus on older people as ‘customers’.¹ Although there has been some recognition of the...

Service user involvement in mental health research in the United Kingdom (UK) has moved on from the pioneering research that characterised the turn of the millennium: surveys of service provision environments supported by the Sainsbury Centre’s User Focused Monitoring initiative (Rose, 2001); emancipatory user- and survivor-led research typified by the Strategies for Living project supported by the Mental Health Foundation (MHF, 2000); the Service User Research Enterprise’s bold work on electroconvulsive therapy, challenging ideas about who decides what should be measured, and how, as research outcomes (Rose et al, 2003). More recently, policy changes are promoting individualised mental health and...

Leading my own research into women’s alcohol use and its treatment, funded by a local National Health Service (NHS) mental health trust, was both exciting and demanding. It helped me to understand better the relationship between service user and service provider, to develop different ways of seeing and to challenge the conventional and medical standpoints on ‘alcoholism’. Unfortunately, this publicly funded research may not influence practice, since few alcohol treatment specialists will hear about it. Medical journals remain uninterested in small-scale, qualitative work, which, no matter how rigorous the ethical procedures, may be described as ‘grey’, or not scientifically proven....

The issue of how to measure the success or impact of involving service users, patients, carers and the public within health and social care is a live and active debate within the public and voluntary sectors. Currently there is no agreed measure of success and, presumably as a consequence, no coherent evaluation of impact (see Barber et al, Chapter Eighteen). It is indeed reasonable to suggest that as public monies are spent on the activities of involvement then there needs to be some validation of both the individual initiatives and the wider policy context that has been the impetus for...

There has been a substantial increase in public involvement in research both in the UK and internationally during the past decade (Caron-Flinterman et al, 2006; National Health and Medical Research Council, 2002; National Institutes of Health Director’s Council of Public Representatives, 2010; UKCRC, 2011). The public is now involved in many different types of research activities in a variety of ways, including identifying and prioritising research topics, carrying out research, analysing data and interpreting and disseminating the findings (Hanley et al, 2003). Yet, surprisingly, there have been few attempts to assess the impact of public involvement in a systematic way...

Part Three had the most contributions in this volume – perhaps because of the origin of the chapters in a conference organised and hosted by a university. But it does indicate that research has become an important focus for user involvement and this raises important issues about the way knowledge is produced and what sort of knowledge is valued. We suggest that the following questions will help us to reflect on both the current situation and how both service users and researchers might want to develop this area of activity:

How different is research conducted with or by service users...