The Reforms to Mental Health and their impact on the empowerment of consumers and carers. Arthur John Lammers Submitted in total fulfilment of the requirements of the degree of Doctor of Philosophy February, 2002 School of Post Graduate Nursing Faculty of Medicine, Dentistry and Health Sciences The University of Melbourne I Abstract. The intention of this thesis is to explore and discuss the experiences of consumers and carers with psychiatric disability support services. In particular their participation in service development and delivery and the degree to which their relationship with services and providers has influenced this participation, is explored and discussed. These relationships are particularly relevant in the context of the dynamics that determine power and the strategies that consumers have adopted so that they become more empowered and have control over their own lives. Consumers and their carers are placing greater demands on the mental health service system within Victoria. Reforms to mental health and psychiatric disability support service delivery and practice have resulted in deinstitutionalisation, recognition of fundamental human rights and changes to mental health legislation. Participation by consumers and carers in service development and delivery has been viewed by governments as necessary and important in contributing to care, treatment and support systems. The National Mental Health Policy developed by the Australian Health Ministers paid substantial attention to the need to include consumers and carers in decisions that shape mental health services. These are underpinned by the World Health Organisation’s doctrine that people have the right and duty to participate individually and collectively in the planning and implementation of their health care. (WHO 1990, p. 14). In Victoria, the National Mental Health Policy lead to the development of a framework for mental health services that reinforced consumer and carer participation in service development and delivery. A qualitative methodology was used for this investigation. In-depth interviews were conducted with consumers and carers to gain a thorough understanding of their experiences and perceptions of the current mental health system. A review of available II literature on the developing mental health consumer movement and on the concepts and practices of empowering strategies was undertaken. The opportunities for participation in the design, development and delivery of services in the context of actual experiences, are discussed with consumers and carers with particular emphasis on consumers’ perceptions of power and empowerment. The transition from institution to community, known as deinstitutionalisation, has not been an easy one to accept by consumers and carers alike. The changes to service design and delivery with a greater focus on community and out reach services, and the necessary changes in attitudes by providers toward consumers as a result of these changes, have established major challenges for the mental health and psychiatric disability support services sector. Consumers and carers argue that the rhetoric inherent in the decision to implement deinstitutionalisation policies and practices that have lead to a shift to services primarily delivered outside of institutions, needs to be taken to another level. They want to ensure that they are recognised and accepted as bringing essential knowledge and experience to a service system that should be designed to support consumers and carers who face life altering circumstances as a result of a mental illness. The information provided by consumer participants suggests that the reforms to some degree have provided them with more opportunities to take control over their own lives particularly in relation to their involvement in community based psychiatric disability support services. However, they describe the attitudes of providers as remaining the greatest barrier to advancing consumer participation. Carers on the other hand describe their experiences with psychiatric disability support services as disempowering. Their disillusionment with the mental health system is attributed to the lack of support and their perceived lack of recognition in their role as carers. III Statement of Authorship. This is to certify that: (i) the thesis comprises only my original work towards the Ph.D. except where indicated in the Preface, (ii) due acknowledgment has been made in the text to all other material used, (iii) the thesis is less than 100,000 words in length, exclusive of tables, maps, bibliographies and appendices. Arthur John Lammers IV Acknowledgments. I would like to acknowledge a number of people who made this research possible and who supported me throughout my candidature: Firstly, thanks are extended to all those participants who gave of their time to contribute to a better understanding of mental health and psychiatric disability support services through sharing their experiences. In particular members of the reference group who shared their knowledge and wisdom in guiding this research. Secondly, I owe a debt of gratitude to my supervisor Dr. Brenda Happell for her wisdom, knowledge and tolerance in supervising my studies. Brenda shared my enthusiasm for this research and our regular meetings held almost monthly for the past 4 years provided me with a great deal of support and mentorship. To the ‘Gang’ with whom I shared valuable time and who’s friendship and company helped me to refocus on the task at hand. Most importantly to my wife Kira and children Evangeline and Annika who have sacrificed their time and given me so much support and encouragement in every way. *** V Table of Contents THE REFORMS TO MENTAL HEALTH AND THEIR IMPACT ON THE EMPOWERMENT OF CONSUMERS AND CARERS. I ABSTRACT. II STATEMENT OF AUTHORSHIP. IV ACKNOWLEDGMENTS. V TABLE OF CONTENTS VI CHAPTER 1: BACKGROUND TO THE STUDY. 1 Introduction. 1 Aims of the study. 13 Summary of the research focus. 13 A brief definition of the terms consumer and carer. 14 Organisation of the thesis. 15 Summary. 18 CHAPTER 2: RECENT CHANGES TO THE MENTAL HEALTH SYSTEM AND PSYCHIATRIC DISABILITY SUPPORT SERVICES IN VICTORIA. 20 Introduction. 20 Recent developments and reforms to the mental health system in Victoria. 21 Government initiatives in mental health reform. 22 National policy initiatives within Australia. 22 Deinstitutionalisation and its implications. 25 VI Ethical considerations of deinstitutionalisation. 26 Royal Commissions and Inquiries. 28 Fiscal benefits. 30 Shifting the burden of care. 31 Mainstreaming and integration of services. 33 Consumer and community consultation. 34 Institution to community. 35 The paradox. 36 Quality of life issues. 37 Consumer choice. 37 A clarification of mental illness and psychiatric disability support services. 38 Summary. 40 CHAPTER 3: THE CONSUMER MOVEMENT. 42 Introduction. 42 Consumers and consumerism – a definition and explanation. 44 The origins of consumer movements. 49 Consumer champions. 51 The consumer health movement. 54 Mental health consumer movement. 55 The various terms used to describe mental health consumer movements – do they all mean the same thing. 60 How the mental health consumer has been mobilised to action in Victoria, Australia. 63 Consumer Consultants. 63 VII Summary. 66 CHAPTER 4: POWER AND EMPOWERMENT. 71 Introduction. 71 Definitions of empowerment: understanding the concept. 72 Perceptions of empowerment – understanding the practice. 73 Perceptions of empowerment: Do consumers and carers want to be empowered? 77 Empowerment in response to deinstitutionalisation. 78 The meaning of empowerment – A shared concept and practice. 79 Attitudes of health professionals on empowerment and treatment. 82 The relationship between consumer and professional - traditional practice. 84 The relationship between consumer and professional – alternative practice. 87 Literature related to consumer and carer participation. 90 Summary. 92 CHAPTER 5: METHODOLOGY. 94 Introduction. 94 Research design. 95 Sources of data. 100 Respondents. 102 The Reference Group 102 Consumers. 103 Carers. 105 Structure of interviews with carers. 107 Other respondents. 107 VIII The process of interview. 108 Data analysis and representation. 109 Thematic analysis. 110 Audit trail. 111 Trustworthiness. 112 Credibility. 112 Persistent observation. 113 Triangulation of data. 113 Peer review. 114 Member Checks 115 Transferability 115 Summary. 116 CHAPTER 6: THE REFERENCE GROUP. 117 Background. 117 Introduction. 117 The concept of a reference group. 123 Formation of the reference group. 123 Consumer Consultants. 125 Remuneration for consultancy. 127 Opportunity for professional development. 127 Carers. 128 Objectives of the reference group in guiding the research. 129 Presentation of the research proposal to the reference group. 130 Summary. 133 IX CHAPTER 7: EXPERIENCES AND OPINIONS OF REFERENCE GROUP PARTICIPANTS. 136 Introduction. 136 The role of carers. 137 The role of consumer consultants in relation to support for consumers. 142 The role and Attitudes of policy makers and service providers. 151 The reference groups opinions of deinstitutionalisation and its consequences. 154 Education and training. 157 Empowerment and the progression of the mental health consumer movement. 166 Summary. 172 CHAPTER 8: EXPERIENCES AND OPINIONS OF CONSUMERS. 181 Introduction. 181 Consumer experiences in acquiring information about psychiatric disability support services and mental health services. 182 Consumer understanding of