Survivor research is a relatively new form of service user activism. It formalises the desire of psychiatric system users and survivors to generate our own knowledge about our experiences. In its short history – little more than 20 years – survivor research has had a number of watershed moments. These include the publication of the directly challengingHave we got views for you(Beeforth et al, 1994) and the development of the first national survivor-controlled research programmes, User Focused Monitoring (Rose, 2001) and Strategies for Living (Faulkner and Layzell, 1999), in the late 1990s. More recently, the publication of the...

This chapter offers a perspective of mental health service users’ experiences of research from one who is not a mental health service user. Some 20 years as a consultant psychiatrist in the UK NHS have provided their own rich and intimate familiarity with mental health services and the experiences of those who use them. I am convinced that much can be gained for all concerned by respecting those experiences in much more detail. I know that I am not alone in this. However, this collection and related publications are testimony to widespread frustration that it is not happening quickly enough....

This chapter explores some key issues in doing service user-led research as well as you possibly think you can do it. It is about applying research theory. We aim to set out the methodological and practical details of a particular project we developed with a group of service users. In so doing, we explore how service user-led ideals can be translated into real-world research action, moving from theory to practice and from practice to theory. We aim to contribute to existing writing about the realities of collaboration in service user-led research, setting out how we pieced together a working method...

There has been a growing momentum concerning patient and public involvement (PPI) in research over the last decade in the UK, with the concomitant establishment of appropriate infrastructure, in particular, the development of INVOLVE (Hanley et al, 2004), which is supported by the Department of Health (DH) expressly to promote PPI in research. In 2005, the DH explicitly stated that members of the public, including service users (patients) and carers, should be actively involved in ‘design, conduct, analysis and reporting of research’ (DH, 2005), while the National Institute for Health Research (NIHR) increasingly requires evidence of active public involvement when...

A strong tradition of involving people with lived experiences of using mental health services as active members of research teams has emerged over the last two decades. This has focused on adding the voice of personal experience to the research process and on introducing the idea of ‘service user- or survivor-produced knowledge’ (Sweeney et al, 2009). However, the epistemological value of these new means of knowledge production continues to be evaluated alongside the ‘gold standard’ of university-produced clinical-academic research about mental health (Staley, 2009). Parallel developments in the philosophy of science have introduced the concept of ‘co-produced’ knowledge, where the...

The focus of this chapter is the ‘experiential knowledge’ of mental health service users and the part it has played and can play in shaping mental health thinking, policy, practice, research, education and services. Our aim is to explore service users’ experiential knowledge – or perhaps we should say knowledges, since there is no one homogeneous service user knowledge – in more depth, and to situate this discussion within broader sociological understandings of knowledge production. The chapter draws on feminist and disability movement critiques of traditional social research to examine academic and professional understandings of knowledge and their role in...

The active participation of the public and service users in shaping public services has been a cornerstone of UK social policy since the 1980s. In the health and social care sector, this ‘user involvement’ has been promoted across all levels of service interaction, from individual service encounters to service management and planning, with influences from both consumerist and democratisation agendas. Within mental health services, organised groups of service users/survivors¹ have had an important role. The forums and mechanisms that enable user involvement in these services therefore encompass local and national service user/survivor groups and networks (both independent and service-led) as...

Service user involvement in research is by its nature political, in that it is aiming to effect change and improvement (McLaughlin, 2011). This is even more the case when service users disagree with established views as to what constitutes ‘health’ and ‘normality’ as regards their particular condition. Survivors of mental health treatment testify in this volume and elsewhere (Sweeney et al, 2009) to the fallibility and inadequacy of medical diagnoses and solutions (Rose, 2001). Survivors of alcohol and drug treatment have yet to develop their critical and political voice. This chapter considers some of the issues involved.

Faced with the...

Engaging people who use mental health services in developing those services, a process generally known as ‘user involvement’, has developed over the years to become part of policy (DH, 1999, 2005; NIMHE, 2003). Involvement and participation initiatives came on the agenda of most mental health trusts. The National Institute for Mental Health in England (NIMHE) developed a programme and guidelines for user involvementMaking a real difference(MARD), based on the recommendations from a report on strengthening user and carer involvement in NIMHE (HASCAS, 2005). MARD guidelines and tools for developing and evaluating involvement were expected to enable a systematic...

This chapter explores the idea of capturing individual testimony to contribute to collective knowledge on lesbian, gay and bisexual (LGB) experiences of mental distress and mental health service use. The exploration draws upon some of my own reflections about the methodologies I have used in some of my own research, where I use personal experience both as a starting point and as a form of inquiry and then locate individual accounts as part of collective user and survivor knowledge. I attempt to situate this within the wider tradition of the use of experiential knowledge, narrative and testimony in user and...

This chapter will seek to raise the reader’s awareness of the often taken-for-granted assumptions about the future for service user researchers. In particular, it is not assumed that there is only one potential future, but many, all of which have their own implications for both service user researchers and non-service user researchers. The chapter will begin by identifying what we mean by a service user, identifying some of the strengths and limitations of this concept, and the notion of participatory research, before highlighting the way service users have been involved in research, the differing claims made for types of service...

For me, the most important aspect of this book is that it contextualises service user research, experiential knowledge and autoethnography. It also moves the narrative of service user experience and involvement forward, interrogating how identity shapes knowledge production. This knowledge may be used sensitively and with moral intent, promoting greater understanding, fairer distribution of resources and service user empowerment (Beresford and Evans, 1999). Silencing and social exclusion are addressed by several of the writers – by Middleton (Chapter Two) and Carr (Chapter Ten), in particular – leading to an impoverishment of knowledge (Beresford and Boxall, Chapter Six; Lewis, Chapter Seven;...