User involvement and mental health: critical reflections on critical issues

December 15, 2002.

Mark Bertram, occupational therapist and vocational service manager with the South London and Maudsley NHS Trust (Lambeth), argues that while professionals remain resistant to new ways of working, the mental health service user movement will remain powerless. Contact: Mark.Bertram@slam.nhs.uk.

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Abstract

This article analyses the influence of anti-psychiatry, consumerist ideology and service user involvement on the emergence of the user movement.The wider achievements of the user movement are critically analysed with reference to the extent of power sharing, research evidence, local changes and the growth of user initiatives.

A range of practical achievements are then analysed and include employment services, survivor workers and user led research. The obstacles facing the user movement are also critically examined in the form of the conflicting interests that emerge to create a paradoxical situation.

I offer personal experience of working in services as a way of highlighting anxiety reduction as the key psychodynamic defence from staff that appears to hinder power sharing. In conclusion, I suggest that despite the achievements of the user movement in diverse areas of action, very little power sharing has occurred and there is a long way to go before partnerships based on equality can be achieved.

Introductory Context: Problems and Reflections

A comprehensive account detailing the emergence of the diverse user/survivor movement does not exist (Campbell, 1999). However, there is a long-established protest from "mad persons at their negative designation in the eyes of society and at the systems societies have set up to deal with them" (Campbell, 1996, p218). Consequently, a major driving force for user action is rooted in challenging the perceived status of those diagnosed mentally ill and condemning the damage inflicted through treatment (Campbell, 1996).

According to Campbell (1996) many users and separatist survivors in the 80`s supported some of the propositions based on the radical innovation and discipline coined by Cooper (1968) as "Anti-psychiatry"(p7). Although the concept was attributed to Ronnie Laing his specific position was, "I have never called myself an anti-psychiatrist and have disclaimed the term…However, I agree with the anti-psychiatric thesis that by and large psychiatry functions to exclude and repress those elements society wants excluded and repressed" (1985, p9).

R.D Laing's (1959, 1964, 1967, 1969, 1982) vast ontological, epistemological, existential and phenomenological theses included extensive clinical studies of intolerable inter-subjective experiences. These experiences were described and analysed within contextual, interpersonal and psychodynamic structures and processes. Laing made madness controversially plausible and easily understandable (Burston, 1996).

The influence on many user/survivor-activists was partly drawn from this psychiatric critique and arguably amounted to a quest for validation, acceptance and greater sensitivity to the experience of mental distress. Campbell (1996) claims this influence was uncertain but confirms this position, to some extent: " The possible intelligibility of mad persons, the possible value of their insights and agonies…are among the respectful declarations that users and survivors warmly welcomed and frequently seek to build upon" (p221).

This re-humanisation process formed a part of consciousness-raising and helped highlight service users' experiences of `treatment` through exposing the methods and role of psychiatry into wider socio-political contexts: "the personal became political and people wanted to use collective action to bring about change" (Barker and Peck, 1996, p5). During this era, as in the USA, the user movement constituted an "attempt to give voice to individuals who have been assumed to be irrational" (Chamberlin, 1990, p323).

However, Campbell (1999) points out that getting mental health debates labelled anti-psychiatric now guarantees marginalisation. He locates the beginning of the more pragmatically oriented user movement to 1985 (From Patients to People conference) and cites the growth of the civil rights movement and the introduction of consumerist ideology as important factors that "undoubtedly added to current willingness for service providers and purchasers to consider the views of people with a mental illness diagnosis" (p220).

The emergence of a new conservatism and its associated consumerist discourse also created tensions between the reality of choices for psychiatric patients and campaigning based on consciousness-raising (Barker and Peck, 1996). These authors cite an early survivor to highlight the polarised position: " Consumerism? I consume psychiatric services in the same way that cockroaches consume rentokil"(p6). The point to be discerned is that consumerism and psychiatric services are incompatible. Mental health services are not tailored to an authentic concern for others because wider questions dominate. Financial issues and the market seem to take precedence.

User Involvement and Mental Health

Service user involvement "really took off" in the 1990`s (MIND, 2000, p3). Campbell (1999) states that it is a blessing and a curse that user action over the last fifteen years was "engulfed so quickly in service-led enthusiasm for user involvement…activists seem to see themselves as service users rather than citizens"(p207). He claims that it is an irony that the position of people diagnosed has improved within services but not their position in society as potential citizens.

Currently, the forces determining the level of participation stem from political and professional mandates but there are no specific mandates on how the processes or procedures should be facilitated. This leaves a wide gap for local interpretation and any impact (Bowl, 1996). These mandates have also been criticized as partial and ineffective, generally reflecting the ideologies of welfare marketisation and consumerist models of participation where knowledge, power and resources remain with providers (Kemshall and Littlechild, 2000).

A spectrum of possible involvement between service users and providers has emerged and has been described as a ladder of power sharing (Kemshall and Little child, 2000). However, current decision-making structures are generally geared in favour of full-time professionals with an outstanding need for greater understanding about what can be gained from user involvement (Barnes and Bowl, 2001). Linnett (2000) has argued that that the purpose of user involvement should be to change the balance of power in an organisation. He points out that genuine user involvement is rare because it leads to fundamental change that is revolutionary, requiring staff to give up some of their power and " if clients do gain genuine official power, they are no longer solely clients or service users" (p2).

Questions of Achievement

A number of writers report that despite years of action by the user movement there is very little evidence of power sharing with providers. There is a restricted commitment to the resources needed to further participation, and there are wide local variations ranging from a virtual absence of a user voice in some areas to user led services in others (Bowl, 1996, Barker and Peck, 1996, Pilgrim and Waldron, 1998). There is also evidence that services generally fail to involve black people and ethnic minority groups effectively in planning or delivery. These groups remain subject to the most coercive forms of psychiatric treatment (Beresford and Campbell, 1994, Sassoon and Lindow, 1995).

There is little evidence about the specific effectiveness of the diverse but mainly white user movement. This has not been fully researched, although small local changes in response to user agendas have been reported (Snow, 2002). The size of the user movement has expanded significantly; the Sainsbury Centre (2002) identified 318 user groups representing 9000 users but a danger of fragmentation through duplication, diversity and a lack of overall direction still exists (Campbell, 1999).

The rapid intensification, range and quality of service user initiatives demonstrate the energy and willingness of the movement to continue developing, but mainly "as actors outside of the mental health system" (Barnes and Bowl, 2001, 152). These authors also argue that user initiatives show "competence in analysis, deliberation and action …a challenge to the association between madness, irrationality and incompetence" (p152).

However, despite the achievements of many diverse initiatives, Snow (2002) makes a depressing claim: "no matter what progress is made in making staff aware of our issues, at the end of the day not much changes"(p9). The position of those diagnosed mentally ill remains precarious and uncertain, and it is difficult to argue that the user movement has had any chance to impact on the mainstays of psychiatric treatment such as the mental health act, compulsory admission and the use of drugs and E.C.T. (Campbell, 1999).

Employment and Mental Health

According to Barnes and Bowl (2001) the user movement has not addressed areas of "poverty and structural exclusion from the labour market" (p152). People using mental health services still face the most difficulty getting back to work with unemployment rates ranging from 60% to nearly 100% (Parkes, 2001, O Flynn, 2001). However, it could be argued whether users are in a position to bring about change, as they do not have the power. They also face a significant range of obstacles and possible exploitation in segregated work projects (Bertram and Linnett, 2002).

The health and social care response has been termed vocational rehabilitation but there is little agreement on the terms or concepts, who should be providing it, how or what works best and who for. The urgent development work needed should be guided by the experiential insights of service users (Bertram, in press). Most vocational services are not user run although some social enterprises report goals of recruiting 10% of its staff from user participants (Lockett et al, 2001).

"Survivor" Workers

There is now some recognition of expertise through personal experience in the provision of mental health care (Perkins, 1997, Relton, 1999). The survivor worker industry has increased significantly but numbers remain small (approx 1000), stress levels are epidemic, and many survivor-workers report bullying, discrimination and a lack of appropriate management and support (Snow, 2002). However, there are exceptions. Relton (1999) a survivor and service user development worker with the Bradford Home Treatment Team states: " I've been here 5 years, and I've got to say I think it has made a difference"(p23).

Significantly, he attributes this success to progressive professionals in power who want to challenge the existing differentials in the mental health system and work with users on a partnership or equal basis.

The actual numbers of existing survivor workers is likely to remain unknown "given the high level of terror of disclosure…the reason…stigma and discrimination by their employers" (Snow, 2002, p13). The survivor psychologist Dr Rufus May (2000) reported waiting a long time before he could find a sufficient power base to declare his diagnosis. He claims his " stance does undermine traditional definitions of boundaries and the implicit assumption that the professionals are walking demonstrations of how to live life in an ordered and rational way" (p5).

Currently, most professional training organisations are profoundly ambivalent about recruiting service users (Barker et al, 1999). The reluctance of mental health professions to recruit, train and employ more survivors could be explained by the possibility that " service users pose a radical challenge to widely held assumptions about the causes of human distress…and the help people need" (Williams and Lindley, 1996, p11).

A New Emancipatory Approach? User-led research

The recent development of service users researching mental health services has been described as a ground-breaking achievement (Rose et al, 1998).

My involvement in a participant action research project with the South London User Research Project (S.L.U.R.P.) has yielded important developments that have implications for a range of professional staff groups. Participants wrote an advert and identified the qualities of a new vocational project co-ordinator as personality based rather than professional e.g. friendliness, willingness to learn and possible experience of mental distress as a form of expertise. Participants also changed the assessment procedure, refusing to be assessed functionally and are now in the process of developing their own self-assessment framework (Bertram,
2002).

Many excellent examples of user led qualitative research exist which reflect relevant aspects of users lives and could be used to improve ecological validity e.g. Strategies for living (Faulkner, 2000). However, the precedence given to positivist methods such as randomised controlled trials (R.C.T.) is made explicit in the National Service Framework (D.o.H, 1999). The policy grades the evidence for determining the shape and function of future services as R.C.T., expert knowledge= type 1 and service user views/expert opinion= type 5.

A possible collaborative way forward and challenge for the research agenda was recently suggested by Faulkner and Thomas (2002, p3): " A marriage of two types of expertise is the essential ingredient of the best mental health care: expertise by experience and expertise by profession".

Reflections from the field

My experience is based on being a former resident of a therapeutic community; as a therapist and analysand working in mental health services; as an active management member of a local MIND group and a member of the critical mental health forum.

In my experience the primary defence used to prevent power sharing and authentic communication stems from professionally constructed judgements about the validity and meaning of the users experience of mental distress and their perceived competence. Many professionals really believe they know what is best for their patients. I have observed consistently the professionals defensive need to separate and maintain a secure base of identity, status and power. This defence appears to activate because of anxiety and fear when facing emotional distress or pain. Many staff seem unprepared emotionally to engage on a deep level that resonates with the users experience of being in the world and are conditioned to split off and rely on professional constructions of what is happening. For example, a psychologist said that they allow patients to talk for 10 minutes then they get on with the cognitive behavioural treatment.

Heginbotham (1999) identifies "serious and worrying splits which often lead to unhelpful or damaging projections e.g. demonising others" (p254). These occur between policy ideals and actual operational activity, professions and agencies and between professionals and service users. It appears that assumptions and myths about others produce anxiety, prejudice and psychosocial distance that hinder any real possibilities of power sharing.

This defensive construction of users as irrational and the current systems of care delivery also creates a divide that seriously hinders efforts to shift power and responsibility to users in a range of areas such as controlling projects, strategic planning and decision making or working alongside professionals. However, possibilities for user empowerment have begun to improve in my area but have required support from powerful champions such as the rare progressive senior manager brave enough to take this agenda up. Getting staff on board by talking developments through with them to reduce their anxiety helps but it remains difficult and challenging.

Obstacles to change

Currently, the user movement faces other formidable obstacles (Barker et al, 1999). Constraints include the increasing power of the illness model and resistance from professionals to embrace new ways of working based on insights gained from personal experiences of mental distress (Pilgrim and Waldron, 1998, Barnes and Bowl, 2001). This situation has been described as paradoxical (Barker and Peck, 1996). Government policy continues to recommend user empowerment strategies and involvement of service users in the planning, delivery and monitoring of services (Barnes et al, 1999). Yet, service users are facing increased stigma and discrimination through distorted media portrayals, coercive practices such as community treatment orders and the new "mental health act from hell" (Critical Mental Health Forum, 2002, Mad Pride, 2000, p5)

Two studies by Bowl (1996) also revealed confusion around the meaning of user involvement and a lack of resource to enable participation. According to Rappaport (1981) who coined the term empowerment, underpinning the conflicts in social policy are contradictory antinomies which create true paradox if the mediating power structure ends up one sided. He argues for divergent and dialectical process solutions through attention being paid to "two different and apparently opposed poles of thought"(p3). This argument is central to what Barker et al, (1999) describe as the single most important possible development that could improve the quality of life of service users " a more sensitive appreciation of the total reality of the madness experience…the interior perceptions, feelings, thoughts and experiences and the exterior reactions based on them"( p18).

However, there is no professional or societal appreciation of madness, distress becomes an "experiential problematic" based on the construction of difference between people, not people who are different (Laing, 1982, p37). This position is arguably demonstrated through the exterior discriminating reactions of society toward people with different interior experiences and the psychiatric treatments repressing them (Rogers and Pilgrim, 2001). The current situation appears one sided and in favour of professional interests. Consequently the "dilemma for the user movement is whether it can progress as a force for change without the more active support of sympathetic professionals who have access to resources and power" (Pilgrim and Waldron, 1998, p103).

Williams and Lindley (1996) have also highlighted that changing mental health services poses very real difficulties that " are rooted in the structural inequalities in our society and in the gross inequalities between those who provide and those who use services" (p11). They argue that it is unrealistic to expect people with least power (service users) to change services and we must establish "better ways of struggling for change together" while acknowledging the effects of race, gender, class, age and sexuality on mental health (p11).

Conclusion

The user movement has a long history of struggle and has emerged from a separatist anti-psychiatric position to function competently in diverse arenas of action. However, while service user involvement continues to appear in the policy and practice landscape, genuine involvement as described by Linnett (2000) remains rare as the processes could lead to fundamental change through shifting the balance of power. This is revolutionary. Consequently, the evidence suggests that the capacity to shape the limits of what is possible through participation is blocked by professional control mechanisms.

Although the specific effectiveness of the user movement remains unknown and unresearched, the evidence of user achievements analysed here strongly suggests competence as researchers and providers with potential for further funding and expansion. However, as Barnes and Bowl (2001) state, the depth of transformation warrants caution as " a fundamental shift in the balance of power remains to be achieved" (p156).

The user movement generally has to rely on mental health care organisations for legitimisation. This relationship while presenting opportunities for change also creates formidable obstacles and paradoxical situations such as increasingly coercive treatment and policy measures in the face of calls for collaboration with professionals. Partnerships generally appear to be set in a context of gross inequalities with attention and action needed to shift the balance.

Despite growing calls and examples of new ways of working based on users experiential insights of distress, professionals and policy makers remain extremely resistant. It is this resistance based on the desire to retain power, status and security that needs addressing in depth if there is to be an equality based partnership that could lead to fundamental transformations in services. Without these fundamental changes the user movement remains comparatively powerless and "Innovation without change will continue" (Brandon, 1991, p172).

Acknowledgements

Thanks to Peter Linnett, Jennie Williams, Tessa Parkes and Jason Powell for insightful and helpful comments.

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