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: research practice and the service-user movement
‘Nothing about us without us’ is a phrase that originated within the disability rights movement. The phrase grew in popularity after it was used in an influential book by James Charlton (Charlton, 2000). The service-user movement has always drawn on the exceptional activism and thinking initiated by disability campaigners. Although many of us with mental health difficulties do not identify with a disability, we recognise the benefits of using a human rights-based approach in our activism. The phrase ‘nothing about us without us’ has been used by mental health survivors to highlight that many decisions and discussions happened about ‘us’, without any consultation or attempt at collaboration. In 2017, National Survivor User Network (NSUN) members created a manifesto that intended to ‘pressure mental health services to make the principal of “nothing about us without us” a reality at all levels, through meaningful involvement in decisions about our own individual care and genuine co-production to develop services’ (NSUN, 2017, p. 3).
Arguably, obtaining the right to share our experiences and opinions with policymakers, researchers and service providers has been one of the greatest achievements of the service-user movement. Service-user involvement is now, at a policy level, required throughout all mental health service developments and research. Most mental health research will not receive funding unless researchers provide a clear strategy for mental health patient engagement. However, despite this policy requirement, collaboration is ‘patchy and slow and often concentrated at the lowest levels of involvement’ (Ocloo and Matthews, 2016). The patient involvement that does happen has brought with it an array of difficulties and criticisms, to which this chapter now turns.
3.1 Coproduction and patient participation and involvement
Figure 2.2 Another example of activist art, by Rachel Rowan Olive
Formal structures to enable coproduction within healthcare settings began around 1996. The National Institute for Health Research established a government-funded patient participation and involvement group aptly named INVOLVE (INVOLVE, 2012). Patient participation and involvement (PPI) in mental health settings began informally. Service providers would, for example, garner the opinions of patients about a new service parameter or some aspect of their care. PPI has now developed into a formal policy requirement (Department of Health, 2005).
Coproduction A deliberative process that requires service-user members and ‘professionals’ to be involved on an equal footing throughout every stage of the design and delivery of research.
Patient participation and involvement Usually refers to a process in which patients (service users) are consulted about some aspect(s) of a predetermined research process.
The involvement and consultation of service users in mental health service environments has brought an array of difficulties. Despite the requirement to involve service users, there is no standardised way of doing this. Thus, the various services and organisations have very different ways of implementing their PPI requirements. In recognition of this, the National Survivor User Network developed the 4Pi National Involvement Standards report, which offers best practice guidelines around PPI (Faulkner et al., 2015).
Moreover, PPI and consultation are troubled by cultural differences and power differentials between professionals and service users. These differences can make involvement in PPI groups quite challenging. Non-service-user mental health leaders, commissioners and researchers have their own professionalised cultures and norms around acceptable ways to act, speak and share opinions (Kortteisto, Laitila and Pitkänen, 2018). Sometimes these are directly in contrast to the ways that service users express themselves. Misunderstandings are common, and what service users say during involvement meetings can be dismissed if said in the ‘wrong way’ or if it does not align with a predetermined agenda (e.g. Church, 1996).
Methodology: Selecting participants for PPI
Another issue in PPI concerns the selection of group members. Those with the power to select participants for PPI will have their own prejudices and biases. This can lead to the exclusion of important perspectives, as Ocloo and Matthews explain: ‘PPI often involves a narrow group of individuals, with the handpicking of just one or two “appropriate” or “acquiescent” patient representatives to be involved in committees or projects. Patient representatives are less commonly drawn from black and minority ethnic groups and are often middle class’ (Ocloo and Matthews, 2016, p. 629).
The rise of psychiatry, psychology and psychotherapy is correlated with the wealth of a country (Kalathil, 2011), so the service-user movement has tended to be more prevalent in the global West. This is problematic because it has led to overwhelmingly Eurocentric, white narratives within PPI and service-user research, while black, Asian and minority ethnic (BAME) service users are already disproportionately marginalised within mental health settings (Kalathil, 2008; Kalathil, 2011).
The requirement to involve service users in mental health service delivery, research and design has brought with it a large degree of tokenism and a culture of tokenistic involvement. Only a superficial effort is made to represent service users, and only to show that rules or expectations are being met, rather than because it is right or fair (Beresford, 2013). Tokenistic service-user involvement has led many service users to experience ‘consultation fatigue’ (Beresford, 2003, p. 102). Tokenism in service-user involvement is demeaning, silencing and ultimately counterproductive. It can be extremely re-traumatising for those who take part (Rose, 2018, p. 158). Thus, the perspectives and experiences gathered through such selection will not always reflect the range of views among service users. This will cast doubt on the capacity of the research to generalise any research findings.
3.2 Service user-led research: a voice of our own?
Being a service-user researcher is challenging. Many such researchers, like myself, favour experiential knowledge and novel ‘mad epistemologies’. Note that ‘mad studies’ and ‘mad