The reforms to mental health and their impact on the empowerment of consumers and carers

Deposited with permission of the author. © 2002 Dr. Arthur John LammersThe 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 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