someone has stopped using mental health services, can they still identify as a service user?3 Are there any differences between a service user who has been sectioned and a service user who has undergone counselling?
4 How distressed does someone have to be to be able to say they have ‘lived experience’? Should they have to declare this experience?
5 Should carers or family members who have supported loved ones with their mental health problems have as much say in the future development of mental health services as those who have directly used these services?
Discussion
These questions represent some of the fierce debates currently taking place in the service-user movement. There are no easy answers to them. To demonstrate the complexity of these debates, consider the following case:
I once attended a meeting that brought together therapists and service users. During the meeting I challenged a senior psychologist by pointing out that, if the meeting was intended for service users, then the language ought to be jargon free. The practitioner explained that, as part of his training, he had been required to undergo private therapy for several years. He therefore identified as a service user and used the language he felt most comfortable with.
These kinds of scenarios raise questions about who is given the ‘service user’ label. Should it be reserved for those who have gone through the mental health system in some way due to suffering, or can someone be considered a service user when they have not sought those services purely out of need? What ultimately makes someone a service user?
Many people are drawn to work within helping professions as a result of their own various experiences of mental health problems. Like many people, I work in the mental health sector because I want to use my lived experience of mental health services to bring about positive change. The introduction of lived-experience roles within the western mental health system has, for the first time in history, created a degree of transparency around the dual identity of service provider and service user. While many people consider this to be a step in the right direction with regards to breaking down an unhelpful ‘them versus us’ narrative, there are many service users who are wary of this. Although normalising the experience of mental health difficulties in this way may break down stigma associated with the label of being ‘mentally ill’, there is a downside. Those of us who have endured the more abusive aspects of the mental health system can have our experiences somewhat erased. We are lumped together under a single identity, making service-user activism more difficult.
The service-user movement today is vast – thriving in some areas, struggling in others. The many groups and individuals that make up the movement are positioned somewhere on a very diverse continuum of belief about how to effect change. Some groups are fully integrated and funded by organisations within the mental health system. At the opposite end, there are groups who seek to operate not only outside of the mental health system but outside of capitalist structures altogether.
In recent years, many service users have refocused efforts to tackle socio-political oppression. A fellow service user recently said to me that we used to fight against oppressive treatment in the mental health system but nowadays we are far more likely to die from neglect than from bad treatment. This idea sums up the stark reality that many people with mental health problems now face. It is obvious to state that, in order to identify as a service user, services need to exist. In response to the fiscal crisis in 2008, the UK Conservative and Liberal Democrat coalition government implemented crushing austerity policies that disproportionately impacted people with mental health problems. UK National Health Service (NHS) mental health trusts have suffered budget cuts of eight per cent per year since 2011 (Griffiths, 2019). In the past ten years, almost a third of mental health beds have disappeared, along with 6800 mental health nurses (Griffiths, 2019).
Financial support for many people with mental health problems was withdrawn after they were assessed using stringent criteria designed to shift people away from disability benefits. Many service users were thrown into financial despair. A report found that disability assessments led to an additional 590 suicides, 279,000 extra cases of self-reported mental health problems and an additional 725,000 prescriptions for antidepressants between 2010 and 2013 (Barr et al., 2016).
Austerity and the resulting neglect of mental health services generated new unities and divisions within the service-user movement. For example, those of us who had previously rejected psychiatric diagnoses as unscientific and invalid were suddenly required to prove our mental health impairments by emphasising our diagnoses. Those of us who had focused our activism on improving or dismantling psychiatry were suddenly propelled to join other disability activists in fighting against governmental and economic persecution because we were fighting the same battles.
This chapter has explored how the service-user movement began in opposition to the visibly oppressive treatment of patients within a medico-psychiatric system. Stories of harm by psychiatric survivors centre on diagnosis, forced treatment, electroconvulsive therapy, detainment, coercion and restraint, drug treatment, chronic neglect and other overt abuses of power. However, there are many other disciplines operating within the current western mental health system, each capable of causing harm to service users. Multidisciplinary teams often include psychotherapists, psychologists, counsellors, occupational therapists, social workers and other support staff.
It is important to note that patients can also be harmed by various interventions including psychological and psychotherapeutic ones (Jarrett, 2008). In my experience as a service user, the psychologist who wrote an incorrect and non-collaborative formulation of my problems was as harmful as the psychiatric nurse who forcibly injected and traumatised me as a non-consenting patient.
Furthermore, allied mental health professionals, such as psychologists, therapists and counsellors, may hold problematic beliefs that negatively impact on mental health service users. For example, Bartlett, Smith and King (2009) conducted a survey of over 1300 mental health professionals and found that more than 200 had offered some form of LGBTQ+ conversion therapy (an oppressive practice whereby a mental health professional believes that sexual orientation or gender identity is something that can be ‘cured’ and attempts to provide therapy toward meeting that aim). In fact, there remains a widespread (incorrect) belief among healthcare staff that identifying as LGBTQ+ is a mental disorder (Stonewall, 2015).
2.1 The service-user movement in the digital age
Before digital media, the service-user movement maintained momentum by producing user-created printed materials, such as magazines, newsletters and books. An example of this was a Canadian survivor-led magazine called Phoenix Rising founded in 1980 (activist artwork from the magazine is shown in Figure 2.1). Asylum magazine was established in the UK in 1986 and is still active at the time of writing in 2020. With the rise of digital media, service users can now interact with fellow survivors at the click of a button. This has led to an explosion of new writings and campaigns. The different approaches taken by a diverse range of survivor groups are now instantly visible and most groups are open for anyone to engage with.
Figure 2.1 An example of activist art, by Rudy Loewe
More recently, the rise of mental health ‘zines’ as a counter-culture to academia/published knowledge has enabled more radical sections of society to express their views on issues around mental health. They are often a form of DIY press that includes politically motivated cartoons and articles. Zines have enabled a modern form of peer support by exposing the lesser-known realities of many oppressed survivors (Bedei, 2016).
3 Nothing about us without us:
