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The timescales provided relate to the UK and can vary with different countries. [...]Working for universal suffrage in representative democracy and the achievement of social rights, like the right to decent housing, education and health, from the late nineteenth to mid twentieth century; * Provisions for participatory democracy and community development, associated with the 1960s and 70s * Specific provisions for participation in health and social care, from the1980s through to the first decade of the twenty first century * State reaction and service user-led renewal as conflicts and competing agendas develop, from 2010 onwards [6]. The third stage identified approximates to UK developments like the setting up of the National Institute for Health Research INVOLVE and increasing requirements for PPI in research and provision. [...]one critique dismisses PPI as a ‘zombie’ policy, unproductive for change and improvement [17]. What this also means crucially is that if an individual has direct, lived experience of problems like disability or poverty, or of oppression and discrimination, of cuts and ‘austerity’, of racism and sexism, when such traditional positivist research values are accepted, what they say – their accounts and narratives - will be seen as having less legitimacy and authority. Because people experiencing hardship will be seen as ‘close to the problem’, they cannot claim they are ‘neutral’, ‘objective’ or ‘distant’ from it.

This article begins by locating Patient and Public involvement ((PPI) historically and argues that ‘mental health’ was a special case. This movement held promise for service users in repositioning them as researchers as opposed to ‘subjects’. We argue, however, that ultimately it failed and was reduced to involved publics ‘tinkering at the edges’. In respect to this we reference institutions, hierarchies, organisations and the overall political climate. Ultimately, however, it failed at the level of knowledge itself in that t he underlying assumptions of conventional researchers, their aims and goals, clashed with those of the assumptions and aims of survivors. However, we argue that all is not lost, the mainstream itself is imploding and beneath the surface forms of distinctly survivor-led knowledge are emerging.

In recent years, there has been a growing and high-profile movement for ‘global mental health’. This has been framed in ‘psych system’ terms and had a particular focus on what has come to be called the ‘Global South’ or ‘low and middle-income countries’. However, an emerging ‘Mad Studies’ new social movement has also developed as a key challenge to such globalising pressures. This development, however, has itself both being impeded by some of the disempowering foundations of a global mental health approach, as well as coming in for criticism for itself perpetuating some of the same problems as the latter. At the same time, we are also beginning to see it and related concepts like the UNCRPD being given new life and meaning by Global South activists as well as Global North activists. Given such contradictions and complexities, the aim of this paper is to offer an analysis and explore ways forward consistent with decolonizing global mental health and addressing madness and distress more helpfully globally, through a Mad Studies lens.

This article is a response to Oliver et al.’s Commentary ‘The dark side of coproduction: do the costs outweigh the benefits for health research?’ recently published in Health Research Policy and Systems (2019, 17:33). The original commentary raises some important questions about how and when to co-produce health research, including highlighting various professional costs to those involved. However, we identify four related limitations in their inquiry, as follows: (1) the adoption of a problematically expansive definition of co-production that fails to acknowledge key features that distinguish co-production from broader collaboration; (2) a strong focus on technocratic rationales for co-producing research and a relative neglect of democratic rationales; (3) the transposition of legitimate concerns relating to collaboration between researchers and practitioners onto work with patients, service users and marginalised citizens; and (4) the presentation of bad practice as an inherent flaw, or indeed ‘dark side’, of co-production without attending to the corrupting influence of contextual factors within academic research that facilitate and even promote such malpractice. The Commentary’s limitations can be seen to reflect the contemporary use of the term ‘co-production’ more broadly. We describe this phenomenon as ‘cobiquity’ – an apparent appetite for participatory research practice and increased emphasis on partnership working, in combination with the related emergence of a plethora of ‘co’ words, promoting a conflation of meanings and practices from different collaborative traditions. This phenomenon commonly leads to a misappropriation of the term ‘co-production’. Our main motivation is to address this imprecision and the detrimental impact it has on efforts to enable co-production with marginalised and disadvantaged groups. We conclude that Oliver et al. stray too close to ‘the problem’ of ‘co-production’ seeing only the dark side rather than what is casting the shadows. We warn against such a restricted view and argue for greater scrutiny of the structural factors that largely explain academia’s failure to accommodate and promote the egalitarian and utilitarian potential of co-produced research.

In 2022, the National Institute of Health and Care Excellence (NICE) introduced “patient choice” as a major new principle in the guideline “Depression in adults: treatment and management.” In 2024, NICE launched a “patient decision aid” to provide practical support for this principle. We explore data on the treatment of depression from the United Kingdom's National Health Service before and after the guideline was published to consider whether patient choice has been enabled by these developments. The types of treatment most commonly delivered prior to the new guideline (Guided Self-Help books, Counseling for Depression, Cognitive Behavior Therapy, and antidepressant prescriptions) are now more common than before. This suggests that the inclusion of patient choice in the guidelines has not yet translated into patients making a wider range of choices. We consider how patient choice came to be prioritized over patient experience in the guideline development process; whether the patient decision aid is likely to support patient choice and shared decision making; and whether there may be underlying ideological barriers which mean a more straightforward emphasis on patient experience would be a more logical route to enhancing patient choice. In the United Kingdom, the National Institute for Health and Care Excellence (NICE) provides guidelines for different conditions. In 2022, NICE published a new guideline for depression in adults. Between 2017 and 2022, professional and patient organisations engaged with NICE around how the guideline was being developed. They expressed concerns that patient experience was not being properly included. To address this, NICE included a review of research on patient choice . The patient choice review mainly summarised perspectives of healthcare professionals as well as identified some barriers to patient choice. The 2022 guideline subsequently emphasised the importance of offering patient choice. In 2024, an accompanying ‘patient decision aid’ was published to support patients to make informed choices about treatment. We consider published data from England's Talking Therapies services and antidepressant prescriptions. We discuss whether there is evidence of increased patient choice since the guideline was released. The most common therapies delivered before and after the 2022 guideline were guided self-help books, counselling and cognitive behavioural therapy. Furthermore, the frequency of delivery of these therapies increased in comparison to other treatment types. Antidepressant prescriptions also increased over the same time period. It therefore seems that choice decreased rather than increased. It could be that patients prefer these treatments. It seems more likely that these treatments are more available and that professionals guide patients to accept these limited options. We discuss how the decision to review patient choice instead of patient experience when developing the guideline may have a role in preventing patient choice being implemented. We argue that patient experience remains a crucial element that needs to be better incorporated into guideline development.

Worldwide, there has been a growth in service user involvement in education and research in recent years. This handbook is the first book which identifies what is happening in different regions of the world to provide different countries and client groups with the opportunity to learn from each other. The book is divided into five sections: Section One examines service user involvement in context exploring theoretical issues which underpin service user involvement. In Section Two we focus on the state of service user involvement in human services education and research across the globe including examples of innovative practice, but also identifying examples of where it is not happening and why. Section Three offers more detailed examination of such involvement in a wide range of professional education learning settings. Section Four focuses on the involvement of service users in research involving a wide range of service user groups and situations. Lastly, Section Five explores future challenges for education and research to ensure involvement remains meaningful. The book includes forty-eight chapters, including seventeen case-studies, from all regions of the world, this is the first book to both highlight the subject’s methodological and theoretical issues and give practical examples in education and research for those wishing to engage in this field. It will be of interest to all service users, scholars and students of social work, nursing, occupational therapy, and other human service subjects.

Background Some research has been undertaken into the mechanisms that shape successful participatory approaches in the context of efforts to improve health and social care. However, greater attention needs to be directed to how partnerships between researchers and user-led organisations (ULOs) might best be formed, practiced, managed, and assessed. We explored whether political economist Elinor Ostrom’s Nobel prize winning analysis of common pool resource management—specifically eight principles to enhance collaborative group working as derived from her empirical research—could be usefully applied within a user-led project aiming to co-design new services to support more inclusive involvement of Disabled people in decision-making processes in policy and practice. Methods Participant observation and participatory methods over a 16-month period comprising observational notes of online user-led meetings (26 h), online study team meetings (20 h), online Joint Interpretive Forum meetings (8 h), and semi-structured one-to-one interviews with project participants (44 h) at two time points (months 6 and 10). Results Initially it proved difficult to establish working practices informed by Ostrom’s principles for collaborative group working within the user-led project. Several attempts were made to put a structure in place that met the needs of both the research study and the aims of the user-led project, but this was not straightforward. An important shift saw a move away from directly applying the principles to the working practices of the group and instead applying them to specific tasks the group were undertaking. This was a helpful realisation which enabled the principles to become—for most but not all participants—a useful facilitation device in the latter stages of the project. Eventually we applied the principles in a way that was useful and enabled collaboration between researchers and a ULO (albeit in unexpected ways). Conclusions Our joint reflections emphasise the importance of being reflexive and responsive when seeking to apply theories of collaboration (the principles) within user-led work. At an early stage, it is important to agree shared definitions and understanding of what ‘user-led’ means in practice. It is crucial to actively adapt and translate the principles in ways that make them more accessible and applicable within groups where prior knowledge of their origins is both unlikely and unnecessary. Plain English summary Academic researchers and members of Shaping Our Lives—a national network and user-led organisation of Disabled people and service users—came together to explore whether Elinor Ostrom’s Nobel Prize winning work on collaborative group working could usefully inform efforts to co-design new services to promote the inclusive involvement of Disabled people in decision-making processes. We wanted to see if Ostrom’s ‘principles for collaborative group working’ were relevant to and could perhaps facilitate a co-design process led by a user led organisation. At first, we struggled to decide how Ostrom’s principles might inform the user-led project. We tried different ways to achieve this and eventually found an approach that most but not all of us found helpful. An important change we made was to stop focusing on how the members of the user-led group were collaborating together and instead to apply the principles to specific aspects of the co-design project that were complex and could be responded to in multiple ways. By the end of the 16-month study we had found a way of using the principles to better enable collaboration between academic researchers and a user-led organisation (although not in the way we had initially anticipated). We learned how Ostrom’s principles could be used to facilitate discussion of aspects of project work that are complex and the pros and cons of different plans of action. This project has demonstrated that collaboration between researchers and user-led organisations can be challenging but also has great potential for shared learning.

Doreen Tembo and colleagues argue that small changes as well as larger system-wide changes can strengthen citizens’ contribution to knowledge in health research

We now have a new kind of psycho-politics; a brutal and destructive alliance between neoliberalism and an expanding psychiatric empire. This article will explore how mental health service users/survivors and other mental health campaigners can connect with the critical analysis and action embodied in the work and values of Peter Sedgwick at a time of crisis and reaction. They have seen ideas like 'user involvement' and 'recovery' co-opted and undermined, and both their experiences and aspirations individualised and devalued. Emerging interest in mad studies, it is suggested, offers a way forward that challenges both the marketisation and medicalisation of people's distress. This discussion will explore the continuities and discontinuities with Peter Sedgwick's pioneering work and highlight, as he did, the importance of making explicit the political and ideological relations of survivors' struggles within and against the psychiatric system.

IntroductionThe clinical effectiveness of a ‘rule-out’ acute coronary syndrome (ACS) strategy for emergency department patients with chest pain, incorporating a single undetectable high-sensitivity cardiac troponin (hs-cTn) taken at presentation, together with a non-ischaemic ECG, remains unknown.MethodsA randomised controlled trial, across eight hospitals in the UK, aimed to establish the clinical effectiveness of an undetectable hs-cTn and ECG (limit of detection and ECG discharge (LoDED)) discharge strategy. Eligible adult patients presented with chest pain; the treating clinician intended to perform investigations to rule out an ACS; the initial ECG was non-ischaemic; and peak symptoms occurred <6 hours previously. Participants were randomised 1:1 to either the LoDED strategy or the usual rule-out strategy. The primary outcome was discharge from the hospital within 4 hours of arrival, without a major adverse cardiac event (MACE) within 30 days.ResultsBetween June 2018 and March 2019, 632 patients were randomised; 3 were later withdrawn. Of 629 patients (age 53.8 (SD 16.1) years, 41% women), 7% had a MACE within 30 days. For the LoDED strategy, 141 of 309 (46%) patients were discharged within 4 hours, without MACE within 30 days, and for usual care, 114 of 311 (37%); pooled adjusted OR 1.58 (95% CI 0.84 to 2.98). No patient with an initial undetectable hs-cTn had a MACE within 30 days.ConclusionThe LoDED strategy facilitates safe early discharge in >40% of patients with chest pain. Clinical effectiveness is variable when compared with existing rule-out strategies and influenced by wider system factors.Trial registration number ISRCTN86184521.