Ussher, J. (1991) Women’s madness: misogyny or mental illness?. London: Harverster Wheatsheaf.
Walker, N. (1968) Crime and insanity in England. Volume 1: The historical perspective. Edinburgh: Edinburgh University Press.
Chapter 2 The service-user movement
Jo Lomani
Contents
Introduction 47
1 The development of the service-user movement 501.1 Improving services or assimilating threat? 52
2 The service-user movement today 552.1 The service-user movement in the digital age 58
3 Nothing about us without us: research practice and the service-user movement 603.1 Coproduction and patient participation and involvement 613.2 Service user-led research: a voice of our own? 63
Conclusion 66
Further reading 67
References 68
Introduction
‘Held back’ by Rosie Cook
There’s really no such thing as the ‘voiceless’. There are only the deliberately silenced, or the preferably unheard.
(Roy, 2004)
This chapter introduces the significance of the service-user movement in the field of mental health. It begins by considering the term ‘service user’ and moves on to exploring some of the history of the service-user/survivor movement. The chapter then looks at issues in mental health survivor activism, including an examination of some of the ethical dilemmas and pitfalls. The second part of the chapter will take a close look at service-user involvement and coproduction in mental health research.
As this chapter progresses, it will become clear that the phrase ‘service-user movement’ is a misnomer. This is because mental health patients have diverse perspectives, experiences and identities. We call ourselves many different things: patients, peers, service users, clients, survivors, consumers, people with lived experience, experts by experience, people with a psychosocial disability, and some of us self-identify as ‘mad’. These terms can reflect some very different and contested perspectives (Christmas and Sweeney, 2016). The chapter will use a number of these expressions, but for the sake of consistency it will tend to use ‘service user’ as a shorthand for a diverse range of terms.
If you aspire to work in the field of mental health, it is crucial that you recognise the immense power you will have over your clients. If you become a therapist, you will decide how long the sessions are; you will say when time is up; you will write notes about your client. You may discuss and interpret your client with a supervisor. Those of you who end up working within the formal mental health system may have even more power over service users, perhaps making decisions about the liberty and treatment of patients (as discussed further in Chapter 18).
Why is power so important? Because it is the abuse of power that provided the foundational context in which the survivor movement flourished. It was called the survivor movement because many patients have had to survive something terrible – something connected to power (or more specifically, to a lack of power). Historically, mental health patients have been silenced. The truth about their experiences of barbaric treatments and psychiatric interventions was kept locked behind the closed doors of early asylums. Yet even in those oppressive and restrictive contexts, patients found creative ways for their narratives to be heard. In her book Agnes’s jacket, psychologist Gail Hornstein offered useful insights into these narratives:
Despite every attempt to silence them, hundreds of other patients have managed to get their stories out, at least in disguised form. Today, in a vibrant underground network of “psychiatric survivor groups” all over the world, patients work together to unravel the mysteries of madness and help one another recover.
(Hornstein, 2017)
This chapter aims to:
summarise some of the key historical changes that have occurred within the service-user movement
explore current issues and debates in the service-user movement, such as the impact of government policies and digital technologies
outline the requirement of patient participation and involvement in mental health policy construction, and the inconsistent ways in which it is applied in practice
explore the challenges faced by service-user researchers, such as the dynamics that exist between them and traditional researchers.
1 The development of the service-user movement
Most of us struggle with our mental health at some point in our lives. Most people’s journeys to find support contain a mix of helpful and unhelpful experiences. Some people may see a mental health worker for a brief time, while others remain in services for many years. The service-user movement is a rather nebulous term. What exactly does it mean? Why has there been, and why does there continue to be, such prolific activism around mental health?
In order to answer these questions, it is important to explore the oppressive context within which the service-user movement emerged. As you read in Chapter 1, conditions in the early asylums were often brutal. Asylum practices, even in relatively modern times, have included the use of chemical castration, prolonged seclusion and psychosurgery (Harrington, 2019). It was the brutality of historical psychiatry that forced patients into collective action and resistance. Years later they were joined by prominent, radical psychiatrists who were dissatisfied with conventional psychiatry. They began what is now referred to as the ‘anti-psychiatry movement’, which gained popularity in the 1960s. Academics and psychiatrists such as Ronald Laing, Thomas Szasz and Erving Goffman publicly challenged and undermined the legitimacy of psychiatry. More specifically, they highlighted the subjective nature of psychiatric diagnosis. These challenges were validating for patient activists, who themselves were trying to challenge damaging psychiatric narratives and win the right for people to maintain their own beliefs about their mental health experiences.
Service-user movement A term used to describe the broad coalition of groups and individuals who speak out, individually and collectively, for their own rights and to draw attention to the difficulties experienced by those who have cause to use or receive mental health services.
Missing from the works of these prominent anti-psychiatrists, however, is a record of the influence that their patients had on them – none of their writings or lectures were coproduced with service users (Section 3.1 looks at coproduction). Thus it is not the patient activists’ names that are associated with the radical changes that took place during and after the formation of the anti-psychiatry movement. This is a significant point because a continuing aim of the survivor movement is to have its own independent voice.
The service-user movement is not one unified group of activists. It is a collective name for a multitude of groups and individuals
