Mental Health Legal Centre Inc.
Lacking Insight - Introduction
Lacking Insight
Involuntary Patient Experience of the Mental Health Review Board
Vivienne Topp, Martin Thomas and Mim Ingvarson - October 2008
Introduction
It is timely to launch this report in the year that Victoria’s Charter of Human Rights and Responsibilities came into full effect. Timely also as Victoria leads Australia, and indeed the world, in terms of the number of people involuntarily treated on community treatment orders[1]. As Tina Minkowitz so powerfully argues in the Foreword to this report, the processes for reviewing and challenging involuntary treatment are but part of the larger question – when, if at all, is it legitimate to detain or treat people against their will? While involuntary status continues, however, those processes and how they work are crucial considerations as to the extent to which people’s human rights are realized.
Crucial to addressing and supporting the role of the Board ‘as protectors of the civil rights of patients’ (Lesser, 2004: 243) is a consideration and understanding of the hearing process from the perspective of people appearing before it.
This report articulates the findings of a qualitative study undertaken by the Mental Health Legal Centre (‘the Centre’). The study was initiated in response to concerns and frustrations expressed by patients and legal advocates that some experiences for individuals appearing before the Board were not positive or productive.
For more than 20 years a key tenet of the Mental Health Legal Centre’s work has been the centrality of the wishes, views and experiences of those with lived experience of psychiatric disability – or that label. For more than 20 years the most significant area of the Centre’s legal, policy and community legal education work has been with people seeking to obtain their rights through the Mental Health Review Board. Consistently, over this time, people have expressed dissatisfaction with the processes of the Board and frustration that their views and experiences are not considered, including in relation to Board processes and legislative reform. These anecdotal accounts reported feelings of humiliation from the perspective of the patient and it was felt further research was required.
The late Jim Tempany, a former Legal Officer at the Board and a person living with mental illness, also identified the benefits of research to inform Board members and other stakeholders of the experiences of those subject to involuntary treatment – essential to improve people’s experience of the process. Jim was aware of the trauma experienced by consumers[2] appearing before the Board and keen to ensure that their views and experiences were heard and acted upon.
Amanda Noseda, a courageous and inspiring inaugural guest speaker, presented at the first Stakeholder Steering Group meeting in 2003, as a consumer who had experienced public mental health services and as a Consumer Consultant working in a Victorian mental health service. She spoke of her experience of the Board, of 6 hearings over 14 years. Making the point that she was relatively “high functioning”[3], she described that experience as “overwhelming, daunting” and one where she felt “absolutely powerless”. She continued to describe her Board appearances as the most dehumanizing, degrading experience apart from seclusion. Amanda Noseda is now deceased. Her account of specific problems with the process[4], however, remains with us. Her experience is consistent not only with the views of consumers interviewed for this research, but with the experiences and views of clients and others with whom Centre staff have had contact.
Our hope is that this research and report will lead to improved experiences for all appellants and reviewees, and contribute to moving the broader framework of involuntary detention and treatment much closer to full recognition of people’s human rights.
We are enormously grateful for the funding support and ongoing encouragement for this research from the Reichstein Foundation. Thanks also go to the Involuntary Patient Advisory Group, Steering Group (in particular to Professor Terry Carney and Dr David Tait for their guidance and supervision in the development of the project methodology) and the Centre staff and volunteers who worked on the Project. We are also grateful to the Board, whose staff and members were generous with their support and time, and Sue May and the typists from Maddocks, who transcribed the many lengthy interviews on a pro bono basis. We acknowledge the tireless efforts of the researchers and authors of this important report.
Our greatest indebtedness, though, is to the consumers who were interviewed and otherwise shared their experiences and expertise. Those participants were magnanimous in providing input to the study, and so positive and optimistic that the issues raised by them will be seriously considered. This report is dedicated to them, to Amanda Noseda and Jim Tempany, and to all people who experience the mental health and legal systems, in the determination that improvements come out of this research.
Mental Health Legal Centre October 2008
Copyright © 2008 Mental Health Legal Centre Inc
[1] John Lesser, President of the Board, stated that Victoria had a higher use of CTOs than any other jurisdiction, Mental Health Review Board Consumer and Carer Forum, 22 October 2008.
[2] The word 'consumer' is used throughout the report. This is the terminology chosen by the Advisory Group. It has been chosen to describe people who:
- self identify as users of mental health services
- have been diagnosed with mental illness or psychiatric disorder, or
- have been active within a mental health service user movement that is aiming to bring change - both radical and incremental - to the way people labelled with mental illness are treated by services and society.
Many people diagnosed with 'mental illness' or 'mental disorders' are seeking a way of positioning themselves within national debates about the efficacy of their own treatment, recovery and related law and policy. In doing so, they feel disadvantaged by both the language of 'patient' and the language of 'client'. There is a perception that the language of 'patient' has been colonised by doctors and that psychologists and social workers have laid claim to the term, 'client' (Our consumer place, Ourcommunity (2008)). It needs to be recognized, though, that the word ‘consumer’ is not the preferred terminology of all people who experience psychiatric disability.
[3] This is the kind of language that consumers experience, language which contributes to the alienation that people described to us throughout the research project.
[4] Amanda Noseda, reported her experience and that of other consumers: they are only aware of a hearing when seven days notice of a hearing is presented, no one tells them they can access to their files, the medical report is often available only half an hour before the hearing and this is insufficient time to prepare, no independent second opinion is available, no discussion of treatment/side effects of medication, no understanding of decision or appeal rights. She told the meeting that it is the view of most consumers that a decision was already made. She described the Board as unfriendly, no smiles, black suited and formal and the layout of the room as being very adversarial. She said the hearing process is bewildering: the roles of members are not clear ; the five criteria are not explained and the less restrictive options not explored. She was concerned that consumers leave the hearing with their views not being considered and having been discouraged from expressing them, that all the legislation and guidelines in the world meant nothing in practice, Involuntary Patient Experience of Mental Health Review Board - Steering Group Meeting April 3 2003 Minutes
