Consumer Participation in Mental Health: We Want It! Cath Roper. Often what stands out most when reading another person's work is what is not there - the gaps ...
Consumer Participation in Mental Health: We Want It! Cath Roper Often what stands out most when reading another person’s work is what is not there the gaps, assumptions and prejudices of which the writer appears unaware, that are so obvious to someone viewing the work from ‘the other side of the fence’. It is ironic that consumer participation, which holds involvement of consumers at its heart, is almost always written about, researched, run and controlled by providers, academics and researchers, and not by consumers. This article examines a published research paper to highlight the inherent dangers in excluding consumers’ perspectives from the research agenda. In 2002, an article entitled, ‘Consumer Participation in Mental Health: Who Wants It and Why?’ was published in the Australian Health Review. It was based on a qualitative study the authors had conducted to examine issues regarding consumer participation prompted by providers at South East Health, in metropolitan Sydney: “Some service providers have questioned the value of introducing such initiatives, requesting evidence that they are an effective means of encouraging broader consumer participation or have a positive impact on the health of individuals or groups” (Tobin et al 2002, p. 92). Difficulties arise when research is provider-prompted: What did providers mean by ‘value’? Was encouraging ‘broad consumer participation’ the intended purpose of each of the initiatives in the first place, or were some of them originally set up for other purposes, such as providing advocacy for consumers? The research was not interested in exploring any differences between provider and consumer definitions of good examples of consumer participation, so essential in this area. It is important that any research investigates concepts such as ‘value’, ‘evidence’ and ‘effective’ from a consumer standpoint. It needs to ask: valuable to whom, and why? Do consumers think that ‘encouraging broad participation’ is as important as having good complaints processes which enable people to assert their rights easily? Is it possible or even relevant to put a ‘price’ on consumer participation? Unlike consumer participation in the general health system, the existence of separate legislation gives consumer participation in mental health a special and particular significance in counteracting the reduction of civil rights experienced by those being treated involuntarily either in an acute facility or on Community Treatment Orders. Systemic and individual advocacy understood in this light could be seen as necessary, whether regarded as ‘valuable’ or not. What would happen if the profession and work of psychiatrists was put under a similar microscope, and consumers were asking these questions: “Some consumers have questioned the value of psychiatry, requesting evidence that it is an effective means of encouraging broader consumer participation or has a positive impact on their health”. That this suggestion looks absurd only highlights the dynamics of authority and power that makes it right for providers to define consumer participation, question the activities of consumers, and define what successful consumer participation would look like. Consumer Participation in Treatment and Reform The research reported in the article makes little attempt to consistently delineate between two fundamental definitions of consumer participation - participating in your own treatment, and ‘service reform’ activities. Consumer participation activities directed at service reform include Area-based Consumer Consultancy with its focus on systemic advocacy, independent consumer perspective activities (such as the education and training of the mental health practitioner workforce), advising on quality of services received, contributing to how services should be evaluated, and influencing policy at program and political levels.
Health Issues, 2003, Number 74, pp. 19-22.
Consumer participation in treatment can also include advocacy or self-advocacy. Here, making a complaint, for example, can be viewed as a form of participation. Participation in the treatment of mental health cannot be spoken of in the same way as treatment in the general health system. For example, after being deemed legally incompetent to make decisions about one’s own health, and therefore unable to refuse treatments, the concept of participating in one’s own care, and how to maximise it becomes even more critical. This illustrates the difference between the consumer’s and the service provider’s vantage points. The issue for consumers might not be whether or not consumer participation is good for people’s health. Their aim may not be ‘to improve health outcomes’. The reasons why consumers participate might be to uphold rights, or to improve a service, or to strengthen a consumer movement. It can be argued that these are the primary reasons why people engage in service reform activities, why so many spend energy and time advocating for consumers’ rights to be involved in treatment and why people work so hard to become central to decisions about their own health care, including their ‘mental’ health care. Within this context, it is conceivable that what might be defined as self-determination (a better health outcome) provider perspective might define as a symptom of illness (a worse health outcome). The question in this context is not whether it is possible to quantify better ‘health outcomes’, but what needs to be done to maximise consumer choice and preference, as a fundamental right. Defining Effectiveness and Recognising Barriers The research is clearly framed in economic rationalist terms: “Given that costs of such initiatives are not insignificant, there is a responsibility to ensure that the resources are being directed to appropriate means and are achieving worthwhile results” (Tobin et al 2002, p. 91) and, “What are the demonstrable outcomes of the political rhetoric supporting consumer participation?” (Tobin et al 2002, p. 92). It has been said that: “the production of evidence changes the context of the debate, and changes the context in which decisions are made. The terms of the debate are changed and what is possible or desirable is changed as well” (Hill 2001). This points to the usefulness and potential of research and ‘evidence’ to open up opportunities for doing things better. However, equally, when research is overtly linked to economics, this ‘production of evidence’ has to be able to withstand careful scrutiny. In the network where the research was conducted, the authors give the figure of approximately 1% of a $50 million budget being spent on consumer participation. What they do not overtly state, was that this amounts to most $500,000 -while the total population served by the mental health program numbers 750,000 people across four geographic areas (applying the figure of one in five being directly affected by mental illness). Another way to address the concerns of ‘some providers’ regarding the effectiveness of consumer participation would have been to talk to consumer workers about how they characterise their experience of consumer consultancies, including those involving Area Mental Health Services. Research questions could include: What are the content priorities of their work? What do they see as achievements? How do they characterise the workplace, their own roles? What do they see as the necessary ingredients to being ‘effective’ in their roles? What barriers do they encounter? Without accurate and detailed knowledge of what consumer workers are facing, and without these workers being instrumental in driving policy, the effectiveness of consumer participation will be judged in terms of its ‘costs’ only and will not necessarily illuminate on the true barriers to effectiveness. Some of these barriers have not even been described by consumers yet, let alone understood by others such as providers. For instance, how is the ‘effectiveness’ of having a consumer on a staff selection panel to be measured when the consumer has no power of veto and is the only person present holding a consumer perspective? How is Health Issues, 2003, Number 74, pp. 19-22.
‘effectiveness’ to be measured in the context of structural inequity, with a potentially ‘pathologised’ speaking position, and where a consumer employee role is often conducted on an average of twelve hours a week? The article’s researchers ask: “How do we canvass the views of consumers broadly and reduce the risk of sectional interests of consumers being the only contributors to the debate?” (Tobin et al 2002, p. 98). This is an old chestnut. The researchers make no attempt to define what those ‘sectional’ contributions might be, and similar comments are often made to silence activists in any endeavour. Does it say something about a need to paint the ‘loudmouth consumer’ (someone obviously no longer in need of protection) as an oppressor of the ‘real consumers’ (who must still need provider protection)? Many of those loud/sectional voices are calling for long overdue action on behalf of their brethren. Many people want to walk as far away from contact with mental health services as they possibly can, and that has to be respected. Consumers are not the ‘captive feedback’ property of mental health services. Equally, many want to change what they can, in whatever ways they can so that it is better for those who follow. Methodology and Consumer Involvement The article’s research team formed a reference group including consumers, which devised the qualitative semi-structured interview used in the study, administered by trained consumer interviewers to current service users over a two-week period. It appears that although trained consumer researchers were used to find out what current service users know about consumer participation, the authors of the article are all non-consumers. Interestingly, advertising for the recruitment of consumer researchers yielded an overwhelming 65 written applications, though nothing is made of this extraordinarily high number of people - presumably interested and knowledgeable enough regarding consumer participation - applying for the research positions. In contrast, the final number of consumer interview subjects totalled only 36, (although 122 were approached to participate). Because the researchers regarded their own approach as being an embodiment of consumer participative principles, it is important to make the point that forming a reference group which includes consumers is not as potentially effective as taking direction from a consumer only reference group. There is strong tradition in Victoria (Epstein & Wadsworth 1996, p. 16) of the need to form such a mechanism, when collaborating with consumers. If given the opportunity, such a group may well have developed a different set of methodologies, processes, a agenda, and even a different research aim. For example, consumer researchers are often aware that there is an inherent danger in being guided by what interviewers are specifically asking rather than beginning with what respondents choose to tell. None of the four prompt questions used explicitly examines each respondent’s own perceptions regarding service uptake of consumer participation, despite this being the stated aim of the interviews. Rather, each respondent is asked to reveal whether or not they have each ‘had a say’ in three areas: treatment/ service, delivery/planning/evaluation, and ‘consumer driven’ activities (Tobin et al 2002, p. 96). The first prompt question is the only one with an open-ended component: “Consumer participation or ‘having a say’, have you heard of it and what does it mean to you?” Interpreting Findings Sadly, as with much qualitative research, the participant responses often get reduced into themes, or bracketed according to the desired aims of the research. However even through it is clear how the data is being ‘reworked’ to fit the enquiry, the participant’s voice still holds much power. For example, the researcher’s first comment: “Another consumer indicated an aspect of learned helplessness” is followed by the actual voice of the subject: “if treatment wasn’t right I would say something, but it is up to the doctor. I can only suggest. I basically tell them what I want but it ends up going their way” (Tobin et al 2002, p. 97). If nothing else, this is a striking, powerful, and salutary reminder of the reasons why consumers often do not participate. Health Issues, 2003, Number 74, pp. 19-22.
If ever there was a voice asking to be given credence, this is it. This is not ‘learned helplessness’. This is what happens when a person’s efforts to have their personal opinions and preferences facilitated are thwarted. Another way of hearing this is as a correct summation of the reality of being a mental health consumer. There is something irksome in how a person is summarily dismissed with a pathological behavioural description, which gives no currency to the fact that someone has realised that there’s no point in arguing with the professional. Even these days, to challenge the domain of the professional is a little like hearing a frog talk – unexpected, and something to be dismissed as a momentary quirk - it did not happen because it cannot happen. Moreover, this one piece of feedback alone could have been seen by researchers as a valuable performance indicator of two things: first, a need for advocacy, and second, a need for training of mental health practitioners on placing the person at the centre of treatment. It is a clear indicator of the ineffectiveness of self-advocacy in the context of mental health, and the reasons why. Vigilance is needed when determining who is defining ‘effectiveness’ and who is setting the criteria for it. Could it be that as consumer participation in mental health moves ever closer to the domain of treatment that is traditionally the unquestioned province of the health professional, and starts to re theorise competence, that the concentric shock waves of a backlash may begin to be felt? Are consumers now getting too close for comfort, having to some extent become part of service provision settings, and now insisting that they be at the centre of all decisions relating to them, rather than being on the periphery? Conclusion There is resistance to consumer participation in mental health, and so vigilance must be practised in critically analysing associated research for its methodology, motivation and ‘results’. Historically, with consumer competence being challenged and with provisions enacted in mental health legislation to override consumer decision-making capacities, it has been reasonably easy to argue that competent health professionals must make decisions for consumers. Of course, concepts of consumer participation in relation to treatment are almost meaningless if “it ends up going their way”. But it seems that before these most basic and urgent of issues can be explored, attention is diverted from them. Why? Where to? Why try to demonstrate that the work that consumers are doing within services has negligible results and is not cost effective? Sizeable numbers of clinicians and service receivers agree that the current mental health system is imperfect. The question remains: who is going to change it, and how? Cath Roper is a Consumer Academic with the Centre for Psychiatric Nursing Research and Practice. She was one of the first four Area Based Consumer Consultants in Victoria. She has a particular interest in complaints handling and processes, and is dedicated to consumer perspective education and training of the mental health workforce, as well as consumer-led service reform. References Epstein, M. & Wadsworth, Y. 1996, Orientation and Job Manual, Staff-Consumer Consultants in Mental Health Services, Victorian Mental Illness Awareness Council. Tobin, M., Chen, L., & Leathley, C. 2002, ‘Consumer Participation in mental health services: who wants it and why?’, Australian Health Review, Vol. 25, No. 3, pp. 91-100. Hill, S. 2001, ‘Why it works: the evidence for consumer participation’, Conference Proceedings, Improving Health Services through Consumer Participation, Consumer Focus Collaboration Publication.
Health Issues, 2003, Number 74, pp. 19-22.