In the last twenty years, the voice of the psychiatric patient has become more evident in academic studies of mental health, policy statements and in local service documentation. This chapter explores a tension between the patient perspective as an expression of protest and as a management resource. This tension is both evident and predictable. The notion that the personal accounts of people with mental health problems should be valued collectively has two different sources, with distinct interests and ideologies. On the one hand ‘experts by experience’ have been part of a new social movement of disaffected patients attacking psychiatric theory and practice. On the other hand, the oxymoron of a ‘lay expert’ has found its time. Modern health and welfare bureaucracies now emphasise consumerism as a source of quality improvement.

What both of these sources have in common is that they place a value on the reported experience of those who have been in contact with specialist services. The mental health service users’ movement and user involvement in service improvement initiatives overwhelmingly have represented people, who variously might be described as having ‘serious and enduring mental health problems’, ‘severe mental illness’ or simply as being ‘mad’. However, the great bulk of people who are acknowledged to have mental health problems are treated in primary care. The voices of these, who have never entered an inpatient facility or even seen a specialist mental health worker, are barely represented in the discourse of either the users’ movement or of users’ views of services.

Mental health service users can be framed as patients, survivors, consumers or providers (Rogers and Pilgrim, 2001). In this chapter, only two of these are explored (survivors and consumers). Also, there is no space here to disentangle the confusing but common managerial amalgam of the ‘views-of-users-and-carers’. When consulted, users and their significant others share some common concerns but they also disagree with one another on priorities and some fundamentals.

The growth in the mental health service users’ movement since the 1970s has been recorded by a number of commentators (Haafkens et al. 1986; Burstow and Weitz 1988; Chamberlin 1977; Rogers and Pilgrim 1991; Crossley and Crossley 2001). During the 1970s, the Dutch and US survivors’ movements gained national and State recognition. By 1977, 35 organizations were represented in the Netherlands. Organized mental patient pressure in the USA resulted in funding for research and for mental health services to be run exclusively by patients (Campbell and Schraiber 1989). From the 1980’s onwards similar developments took place in the UK.

The mental health service survivors’ movement fits broadly within this new pattern of political radicalism. It is characterized by opposition to expert medical knowledge and a form of politics based on an identity derived from mental health problems and contact with specialist services. Survivors’ groups have shared several concerns highlighted previously by critical professionals during the 1960s (‘anti-psychiatry’). Whereas that critique was highly intellectual and came from professionals themselves, the more recent one has come from service users directly and is less theoretically oriented and more concerned with direct action.

The survivors’ literature emphasises the oppression suffered by psychiatric patients, though the source of this is ambiguous. The person has ‘survived’ their mental health problems, their experience of psychiatric services and their general social exclusion.

Sometimes the survivors’ movement is also described as an ‘opposition movement’ (Haafkens et al, 1986). Although they make demands about citizenship, much of the anger and debates of disaffected patients focus on disappointments or frustrations about the psychiatric profession and mental health services. This is exemplified in the title, Shrink Resistant: the Struggle Against Psychiatry in Canada (Burstow and Weitz, 1988).

Given this disaffection about psychiatry and mental health services, the term ‘user’ is problematic, because patients do not necessarily view services as being ‘of use’, especially given the common scenario of involuntary contact. How can the notion of ‘service’ be justified when it is imposed- a ‘service’ to whom? In what sense do people who have contact with the mental health system against their will ‘use’ that system? Can a person validly use something that is forced upon them?

Turning to the content of the mental health service users’ movement, a number of themes can be identified from the narratives offered by patients and ex-patients:

• The opposition to coercion The focus here is on the way in which mental health problems are segregated forcibly from society.

• The opposition to compulsory treatment As well as the issue of compulsory detention, compulsory treatment is also opposed. Indeed the notion of medical treatment is inherently problematic if it is imposed. Assaults on resistant bodies are cast as ‘treatment’ because the State delegates lawful powers to professionals. Similarly what is solitary confinement in prison becomes ‘seclusion’ in mental health services. The users’ movement seeks to expose the mystification of these oppressive practices carried out under the cloak of medical paternalism.

• The opposition to psychiatric diagnosis This varies in its salience in the movement but many patients resent the application of a medical diagnosis to a problem they prefer to frame in biographical, social or spiritual terms.

• The demand for greater treatment choice This relates to the dominant use of physical treatments in psychiatry. Users demand a greater choice of treatment responses than are on offer. Common demands are for psychosurgery and electroconvulsive therapy to be outlawed and for psychological therapies to be more available.

• The demand for greater citizenship This feature is shared with the physical disability movement. It is the one area of demand that lies outside complaints about psychiatry and specialist services, though the latter may still be criticised for not promoting social inclusion.

As was noted in the introduction, both the users’ movement and the concern of those developing mental health services emphasised the view of one band of patients (those in episodic contact with specialist services). This has meant that the above list of messages from the users’ movement and the list recurring from consultation exercises with service users are remarkably similar. Much of the focus is on disappointment with specialist services, especially inpatient regimes.

Mental health services have always been, and have remained, associated with coercion and are dominated by forms of physical treatment. Indeed, over time this tendency has increased. What patients generally want is non-coercive, holistic care. The latter term can sometimes be described as a ‘psycho-social’ or a ‘biopsychosocial’ approach to care. At present psychiatry and its adjacent group of mental health professions are found lacking in this regard.

According to users they do not regularly receive this type of holistic, patient-centred form of care in inpatient settings. What patients actually get are over-crowded holding centres with no time or space for individualised care plans or therapeutic interventions, save medication reviews. Inpatient services are noted for their ‘non-therapeutic’ character (Sainsbury Centre, 1998) and for their habitual capacity to make patients feel worse rather than better in the wake of their admission (MIND, 2004).

The structure of mental health care in the last 20 years has amplified this tendency. With the closure of large mental hospitals, acute inpatient facilities have virtually abandoned their aspiration to be treatment facilities. They are now largely the recipients of coercively controlled patients, many of whom have concurrent problems (‘co-morbidity’, ‘dual diagnosis’). The proportion of patients now detained involuntarily in these units is very high, as is bed occupancy. Twenty years ago, formal patients were in a minority. It remains a moot point though whether, even in those days of more bed capacity, before the large hospitals closed, ‘informal’ patients, were truly voluntary (Rogers, 1993).

Proposals in the recent ‘Draft Mental Health Bill’ to cast inpatient facilities in the role of assessment centres for the coercively detained may simply be formalising what they have now inevitably become. For this reason the draft Bill is a misnomer. More accurately it should be called the ‘Draft Coercive Control of Mental Disorder Bill’.

In the early 1990s, I worked with Anne Rogers and Ron Lacey on a large survey of patients’ views of services, conducted on behalf of national MIND (Rogers, Pilgrim and Lacey, 1993). That snapshot occurred in a context of the large Victorian hospitals closing. The accounts given to us reflected a cohort of patients’ experiences in both the old asylums and the District General Hospital acute units, which had emerged during the 1970s. The methodology was relatively unusual. A thousand patients collaborated with the survey but the extensive questionnaire was not completed individually. Instead it was done with the help of volunteers who elicited responses in a dialogue, ensuring that each section of the questionnaire (if applicable to the respondent) was completed.

We pooled the results from sites throughout England and Wales and analysed and interpreted them. Most of the patients were accessed by the voluntary sector, though there were no discernible differences in responses between these and the patients we accessed directly from services. A few salient findings from the survey were as follows:

• Mental health care was dominated by biological interventions. Nearly half of our sample had received ECT during their service contact, despite it ostensibly being a treatment of last resort.

• Only 60% received some form of psychological intervention during service contact, whereas 98% received drugs. Moreover, 85% had been taking psychiatric drugs for more than one year and nearly 40% of them for more than ten years.

• Over 60% of patients described the adverse effects of medication to be either ‘severe’ or ‘very severe’.

• Only 10% of the patients interviewed actually saw their mental health problems in terms of mental illness. The rest gave a range of accounts for their difficulties. This highlights the tension between psychiatric codifications of mental abnormality and those provided by patients themselves.

• Patients preferred to be supported in non-hospital settings.

• Patients valued day care but not because of the service claims made by managers about treatment provision. Instead they emphasised the value placed upon social contact.

• This point was further emphasised by views about sources of personal support. Those least favoured were psychiatrists and the most favoured were other patients.

• Patients preferred voluntary service contact to that with statutory services.

The consequences of being labelled ‘ill’ are serious for a person who is given a psychiatric diagnosis. Since the diagnosis of a person as ‘mentally ill’ is done primarily on the basis of a judgment about a person’s conduct, there is always a risk of invalidating their whole identity or sense of self. Those labelled as mentally ill are discriminated against by present and prospective employers and, as a result, are often subjected to a life of poverty. Educational opportunities are curtailed, family and intimate relationships affected and making social contact with people is fraught with difficulties.

Against this background of social exclusion (Sayce, 2000), the satisfaction research about mental health services has commonly adopted a needs assessment approach, which has been less than sensitive to the patient’s wider social context and total experience of life. It has usually assessed patient satisfaction according to ‘normative need’ (defined by current societal norms) or ‘defined need’ (what professionals consider the patient needs). When defining need and casting expressed need about the patient’s total life experience into doubt, professionals (maybe with a wry smile) distinguish between what patients ‘want’ and what they ‘need’. ‘Wants’ are readily connoted as irrational or even frivolous. Paternalism is thus reproduced in a new guise. The assessment of ‘insight’ is central to this distinction between the patient’s view and that of others (Carter, 2003).

There is a small amount of research conducted which does not presume that the professional view of need is self-evidently superior. Rather than ‘normative’ or ‘defined’ need’ this research has focused on ‘felt’ or ‘expressed’ need. ‘Felt need’ is unexpressed experiential state of wanting something. If articulated it is ‘expressed need’. ‘Felt need’ can be elicited during research or audit exercises. An early example of this was Mayer and Timms’ (1970) work in which social workers were encouraged to take seriously the views expressed by clients. The work of Beresford and Croft (1986) also highlights the views of users of social services and emphasises the need for genuine participation by users in research about services.

Whilst professionally defined needs tend to focus on behaviour and the effectiveness of prescribed treatments, ‘felt need’ evaluations tend to emphasise the material and social aspects of people’s everyday lives. Kay and Legg (1986) found that the need to have a job was a high priority for those recently discharged from hospital. Another example is a survey which examined the expressed needs of patients, vis-à-vis their living arrangements and material and social support (Hatfield et al. 1992). A sizeable minority of patients expressed dissatisfaction with their living arrangements. Those living in staffed accommodation were particularly critical and did not view their living situations as a result of their own positive choice.

Another survey of discharged patients revealed a number of aspects about their quality of life in the community. These included their sense of vulnerability, the benefits of community care, an appreciation of the support of others, an awareness of the impact of scarce resources and disappointment about poor co-ordination between health and social services (MacDonald and Sheldon 1997). Similarly the vulnerable identity of psychiatric patients living in the community has been documented by Barham and Haywood (1991).

The quality assurance literature reflects the way in which the psychiatric patient’s voice has been co-opted. However, there are logical and political problems in simply utilizing this voice as ‘consumer feedback’, analogous to a hotel guests completing satisfaction with service questionnaires. The two greatest impediments to this sort of aspiration (held by optimistic politicians and service managers) are the enduring social control role of mental health services and the powerful inertia of a bio-medical approach to care. Together they lead to de-humanising outcomes and at are odds with the current policy rhetoric of consumerism and ‘patient-centredness’.

A confluence of interests reproduces these impediments. The anxieties of the sane (voting) majority and the prejudice this creates in their minds are important. Politicians and the mass media reflect and reinforce this bias in the public mentality. In the public domain, there remains a preoccupation with the need to control madness. For its part, the psychiatric profession is still dominated by a bio-medical viewpoint, reflected in its retention of the importance of diagnosis and its preference for pharmacological fixes to madness and misery.

These two pillars of orthodoxy- the imperative to control mentally disordered conduct and its treatment within a bio-medical paradigm- may have been moderately shaken by user involvement but they have certainly not been removed. When the users’ movement and user involvement were enlarging, simultaneously there was the ‘decade of the brain’ and the triumphalism it spawned in biological psychiatrists (Guze, 1989).

The user’s movement, like that of other new social movements, has asserted a collective voice based upon a shared experience (of mental health problems and mental health services). It has been shouted on the streets and rehearsed in small, smoky settings. It has been driven primarily by anger and frustration, not the desire to aid the smooth running and credibility of local mental health services.

Arguably this hostility has been overly focused on the psychiatric profession. A more even-handed analysis reveals a much wider devaluation of the mad experience in society.

Indeed, the psychiatric profession has increasingly been at pains to encourage public tolerance about mental abnormality. The recent campaign of the Royal College of Psychiatrists emphasises the random affliction of mental illness- one in four people affected during the life span. It could be me. It could be you. The logic goes that this roulette randomness demands that we de-stigmatise mental illness and accept and treat it like any other.

A critical response to this campaign might point out that it may be one in four but not any one in four; some social groups are much more prone to mental health problems than others (Rogers and Pilgrim, 2003). Also mental illness is not like physical illness (no matter how much many psychiatrists and some others would like it to be). Its conceptual validity and aetiology are constantly contested and queried. Patients often do not embrace the diagnosis offered to them because it adds to their demoralisation and stigma. Other illnesses do not regularly warrant the legal deprivation of liberty without trial.

This recent campaign to de-stigmatise mental illness is implicitly bound up with a long term professionalising strategy to make psychiatry a medical specialty like any other. In the 19^th century this began with medicine asserting (with no evidence) that madness was a brain disease. In the 1970s the strategy was linked to the shift from the asylum to the District General Hospital, where psychiatry became another proper medical department among many (Baruch and Treacher, 1977). Today the strategy extends to making mental illness one like any other. But the dominant threads of oppression identified by the users’ movement remain. The biomedical model in psychiatry still predominates. The assertion that madness is a brain disease (with little more evidence) is still a professional orthodoxy. The right to diagnose and treat are still privileged over the patient’s right to be left alone.

Within the users’ movement, all voices are listened to because the libertarianism typical of new social movements tolerates and encourages difference. One wing of this range has eschewed services and cooption, emphasising instead an oppositional agenda including: of the abolition of psychiatry; an emphasis on self-help and user led services; and the end of coercion. On the other wing, the reformist position, with the support of ‘professional allies’, has offered itself up for cooption under the terms and conditions of user involvement in local services. The offer has been encouraged by the national and local State.

Whereas the voice of protest has been asserted, the voice of consumerism has been elicited. The British State, under all governments since 1979, has encouraged consumerism in its health and welfare reforms. What we have witnessed in the last twenty years is a limit-testing exercise in user involvement, prompted by this political philosophy (Bowl, 1996; Barnes and Shardlow, 1997; Bhui, Aubin and Strathdee, 1998; Pilgrim and Waldron, 1998; Truman and Raine, 2002; Diamond et al, 2003; Rose, 2003; Rutter et al, 2004).

User involvement endorses the voice of the patient. It is entreated and attended to, but on terms strictly circumscribed by those controlling the service status quo: managers and professionals. It is in the gift of the latter powerful groups to issue this invitation more or less enthusiastically and with more or less good faith. The existence of mental health services, mental health professionals and their preferred methods of interventions are taken as givens. Professionals and managers may listen to all viewpoints. They may concede feedback and genuinely seek to change services. But they always do so from a position of power. Whereas the users’ movement could countenance a world without mental health services, user involvement assumes that the latter are here to stay. They are only reformable in a way which potentially suits all parties, including those currently at their helm.

The role being demanded of professionals and services from central government, with a mandate from the sane majority, has shifted towards a greater emphasis on risk minimisation and thus on conservative decision making, which encourages greater levels of coercive control. This shift was reinforced by large hospital closure, leaving smaller over-stretched acute units prioritising the most risky cases. User involvement and other State-encouraged initiatives (such as advocacy) are retained as mitigating policies, in the midst of this larger shift towards a widening State apparatus to suppress deviance (e.g. proposals in the current Draft Mental Health Bill). This shift has inevitably constrained the achievable aspirations of user involvement.

Finally, there is another position which should be flagged for completeness. Prior to the users’ movement, with its identity politics, and managerialism, with its sweeping bow to consumerism, there was an extensive piece of mental health work, which continues to exist: psychotherapy. From the point when asylum doctors with their eugenic and bio-deterministic position for a short while fell out of favour with government after the First World War (Stone, 1987), to the present, psychotherapists have claimed special expertise in eliciting and formulating the meaning of personal accounts. It has not left us with a clear steer though about the collective or aggregate meaning of the patient’s perspective.

Psychotherapy has certainly offered itself as a more humane alternative to drugs, electricity and the scalpel but it has retained an individualistic ideology, co-constructing atomized individual case studies with its clients. Occasionally it has extended this range of case studies of individuals to work on small and large groups. Very occasionally, it has made claims of social insight. In the latter regard, radicalized forms of psychoanalysis, such as the Frankfurt School of social researchers have predominated.

However, this confluence of psychoanalysis and social radicalism has been riven with controversy, with psychoanalysts being reluctant to endorse revisionism and political excess in their ranks. Despite this factionalism within psychoanalysis, its resonances have been evident in the users’ movement. For example, anti-psychiatric spurs for confidence in the users’ movement have included the work of Ronald Laing and Thomas Szasz (both psychiatrists and psychoanalysts).

The great bulk of psychodynamic psychotherapy has joined the mental health industry in an adaptive rather than challenging way- particularly in the USA. One of the weaknesses, even of socially radical psychoanalysis, is its’ overwhelmingly focus on neurotic functioning- a reflection of Freud’s pessimism about the psychoanalytical treatment of madness. Only a few, such as Laing, took the risk of exploring the latter experience and they were kept firmly on the professional margins or even cast beyond the pale. The reclamation of meaning from madness, which Laing championed, has strong resonances now in the Hearing Voices Network (itself prompted by another psychiatrist, Marius Romme (Romme and Escher, 1993).

For some, psychoanalysis and other forms of psychotherapeutic expertise may retain a mandate to represent the collective voice of mental abnormality. But, in recent times, between them the service users’ movement and consumerism in social policy have underpinned the legitimacy of the patient perspective. For now, they have pushed the psychotherapeutic claim into third place.

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