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This article draws on the first-known review of user-controlled research, to explore the potential contribution of service user knowledge and service user research to the development of evidence-based policy and practice in health and social care. It locates this discussion in the context of competing research ideologies and the broader history of user involvement and user-controlled research. The concept of ‘valid’ knowledge remains contested and the article suggests, drawing on the views of service users, that their research and experiential knowledge is likely to have a helpful and particular role to play in the generation of useful knowledge as part of a wider spectrum of research approaches and knowledge production, and that the position of such research should be safeguarded to enable this to happen.

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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.

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We have a system that increasingly taxes work and subsidizes nonwork.

(Milton Friedman)

… the welfare state has caused millions to live deprived and even depraved lives …

(James Bartholomew, 2013)

If you are not careful, the newspapers will have you hating the people who are being oppressed, and loving the people who are oppressing them.

(Malcolm X)

The UK welfare state has long had a poor press, but this probably reached its nadir in 2013. It was then that it was accused of colluding in mass murder. Occupying the lofty moral high ground was the Daily Mail, the tabloid newspaper which has the second highest sales, as well as being one of the most influential political institutions in Britain. Its front page headline described Mick Philpott, who killed six of his children by starting a house fire, as the ‘vile product of welfare UK’ (Dolan and Bentley, 2013). This was then picked up by right-wing blogger Guido Fawkes, who called the welfare state ‘Philpott’s evil accomplice’ (Guido Fawkes, 2013). We should remember that this is the same Daily Mail whose proprietor and editorials supported Adolf Hitler and Sir Oswald Mosley, leader of the British Union of Fascists before the war, and which more recently had to pay damages to a Tamil hunger striker for falsely claiming that he secretly ate burgers during his 23 days without food (Jones, 2010) and invaded a memorial service being held for the uncle of the then Leader of the Labour Party, Ed Miliband.

This certainly was not always the way the welfare state was presented in the press.

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Caring for the feeble, and allowing them to breed, would lead to the degeneration of humanity.

(Charles Darwin, Descent of Man, cited in Wise, 2009, 216)

Laws provide, as much as is possible, that the Goods and Health of Subjects be not injured by the Fraud and Violence of others; they do not guard them from the Negligence or Ill-husbandry of the Possessors themselves.

(John Locke)

The long-term history of UK social policy is the history of the Poor Law. The two are inextricably linked. It is difficult to understand the creation of the welfare state and its subsequent development without recognising this. Nearly three quarters of a century after its demise, the Poor Law still intimidates. Only very old people can have any direct experience or real remembrance of it. But its shadow still looms over us. It has long been the symbol of all that is awful about needing official help. We can still get some sense of its brutality from Dickens’ Oliver Twist or David Lean’s film version of the novel. We can get an echo of the cruelty of its ideology from the thinking and behaviour of Scrooge in Dickens’ A Christmas Carol. He is much better seen as a symbol of Poor Law philosophy, than the miser we have largely come to understand him to be (Spufford, 2014). But the Poor Law is more than an anachronistic folk memory. It was the basis for collective intervention where people couldn’t maintain themselves for perhaps a millennium. Its origins are most often associated with the great Elizabethan Acts of 1597 and 1601.

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One thing is certain – service users have asserted themselves. They have made it known that they are, like Eliot’s Magi, ‘no longer at ease here, in the old dispensation’, where they were expected to take what was offered. Concepts of citizenship and rights have replaced old ideas of benevolence and good intentions.

(Foreword, A challenge to change: Practical experiences of building user led services, Beresford and Harding, 1993)

Patient-controlled services: a real alternative to the institutions that destroy the confident independence of so many.

(Judi Chamberlin, 1988)

Social policy has to be directed not only to maximising GNP [gross national product] but to securing the wellbeing of individuals in a secure society.

(A.H. Halsey, sociologist, Guardian obituary, 17 October 2014)

When we look at public services in the UK, despite the massive technological and other changes that have taken place in modern times, it is difficult to see any matching pattern of improvement over the years. If anything, essential services, such as street cleaning, road repairs and rubbish collection, seem to have deteriorated in quality, with less well maintained roads and pavements, fewer collections and more demands made on householders. Utilities are still subject to failure and breakdown and massively increased in cost. Public transport, such as local bus, coach and train services, while sometimes more truly public services in the sense of being more accessible to disabled people, are much reduced in scale, reach and flexibility. They are generally much more expensive than their European counterparts, particularly rail, in spite of continuing large-scale public subsidy.

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The welfare state is not about dependency: it is about opportunity

(Mary O’Hara, 2014b)

Beggars do not work, it is said; but, then, what is WORK? A navvy works by swinging a pick. An accountant works by adding up figures. A beggar works by standing out of doors in all weathers and getting varicose veins, chronic bronchitis, etc. It is a trade like any other; quite useless, of course – but, then, many reputable trades are quite useless. And as a social type a beggar compares well with scores of others. He is honest compared with the sellers of most patent medicines, high-minded compared with a Sunday newspaper proprietor.

(George Orwell, 1933, 206)

The academic discipline of social policy has had a particular concern with categorising existing systems of welfare. In this chapter, the aim instead is to begin to explore what a welfare state might look like – if it both took on the ideas of its users and advocates and addressed the weaknesses identified by its critics. In earlier chapters, we explored the principles and structures of existing welfare systems, as well as exploring pioneering alternatives. In this chapter the aim is to look more closely at the latter, while offering the former as a yardstick to set them against. Here we will focus at a policy level, in the next chapter we will explore the detail of support for people’s welfare and well-being.

In his influential book The three worlds of welfare capitalism, the Danish sociologist Gøsta Esping-Andersen identified three sub-types of welfare state models.

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Any change must come from the bottom up.

(Tony Benn, quoted in Dore, 2003)

If there is hope it lies in the proles.

(George Orwell, Nineteen Eighty-Four)

The philosophers have only interpreted the world …The point, however, is to change it.

(Karl Marx)

The creation of the welfare state represents one of the most radical changes that have taken place in recent UK society. As we documented in the first three chapters of this book, it took enormous pressures and seismic shifts in politics, ideology, economics and international relations for it to happen. If the aim is to return to a similar commitment to improving people’s well-being, then a massive process of change will again be needed. This time, there aren’t the same spurs for action. There has been no successful ending of a global conflict, even if economic uncertainty and division are increasing.

Calls for reform, proposals for change, tend to be weakest when it comes to spelling out how they are to be achieved. Often this issue is left unstated and unexplored as though the mere strength of the argument and the evidence offered will create its own force for change. Sadly such hopes almost invariably seem to be disappointed. The sense that ‘something must be done’ about horrors reported, injustices highlighted and appalling policy identified, ignores the real world of power, politics and policy. We know from the world of international ‘realpolitik’ that the most terrible conflicts tend to continue until one side wins or resources are exhausted. Yet when it comes to domestic policy, a sense lingers that somehow morality or ethics will triumph.

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We should not be surprised if the issue of personalisation and personal budgets has come to be seen as controversial and contentious. What perhaps would be more concerning would be if it were treated as straightforward and without complexity. Indeed, that has been one of the significant features of political approaches to personalisation. It has gained support from all three main political parties and tended to be treated as unproblematic. However, as soon as we consider the context of this idea and development, it becomes possible to see some of the serious traps lying in wait for it, and also to begin to explore ways of overcoming them.

First, a point about my position on this issue. Historically, there has been some polarisation of discussion, with some people and constituencies strongly for or strongly against personalisation and personal budgets. This has at times been a fraught and disturbing situation, with some commentators who have been critical of this development marginalised and excluded (Boxall et al, 2009). My background as a long-term health and social care service user has put me in a different position. Over the years since the 1970s, a number of different developments have taken place in social care (extending in some cases to health). These include the establishment of social services departments, the introduction of community social work and then community care, care management, the ‘purchaser–provider split’ and now ‘personalisation’. Each of these innovations has been heralded as offering more cost-effective and responsive services and systems of support. In some cases, the rhetoric of increased choice and control that has come to be associated with personalisation has also been emphasized – notably in the case of community care.

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Discussion and developments relating to ‘the public service consumer’ have been constants of growing significance since the late 1970s. This chapter focuses on this issue from the perspectives of people as long-term users of health and social care services. This large group–which includes older and disabled people, mental health service users, people with learning difficulties, and others–is one for whom the discourse about the consumer in public services has major ramifications. Yet this discourse is not one in which they can be said to have played a central part. The chapter aims to explore both this group’s responses to public service consumerism and the frameworks that they have employed in developing both their own individual and collective identities and actions in relation to public policy and services.

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This chapter explores some of the key concerns arising from service users and service-user organisations in association with research and evaluation. It discusses the ideological basis of participation, the ownership discourse, the purpose of research and evaluation and the nature of research values. It describes the future of participatory research as particularly dependent on non-service users being prepared to offer support without taking control, to enable rather than lead, and to and support service users to find space and resources rather than take control of themselves.

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