Community treatment orders: the lived experience of consumers and carers in NSW

Abstract

There is limited research examining the lived experiences of consumers and carers subject to community treatment orders (CTOs). Between 2009 and 2012, the Centre for Values Ethics and the Law in Medicine (VELiM) at the University of Sydney conducted a research program examining this area, on behalf of the Mental Health, Drug and Alcohol Office (MHDAO) of NSW Health. (The research was part of a larger project examining CTO decision-making, in which clinicians and Mental Health Review Tribunal members were also interviewed.) Eleven participants - five consumers and six carers - participated in the research project by taking part in in-depth interviews about their experiences. This interview data set was analysed using qualitative methodologies. The lived experience of consumers and carers of CTOs in NSW had five themes: `access', 'isolation', 'loss and trauma', 'resistance and resignation' and `vulnerability and distress'. These spoke to the experiential components of the losses and trauma associated with a severe mental illness, the compromises associated with the assumption of the sick role, and the challenges of managing the relationships and engagements necessitated by these processes. According to the theory that emerges from our analysis of the data, the experience of living under a CTO in NSW is a mixture of distress and of acknowledgement of the value of the process. This generalised across both the consumer and the carer participant groups. In a number of the narratives provided, there were both direct and indirect experiences of sub-optimal care, usually the result of excessive demands on particular health services and the overall deprivation or social injustice faced by many suffering from severe mental illness. The distress, isolation, grief and loss experienced by those affected by CTOs appeared to be a part of the experience of a severe mental illness. Putting aside instances where CTOs were implemented poorly, the kind of illness and level of disability experienced by those who needed such treatment interventions was an intrinsic source of distress. The need for a CTO emerged from that illness and, by extension, that distress. In essence, the experience of distress around a CTO seemed to be indistinguishable from the distress of the severe illness that necessitated it. All of the consumer participants and many of the carer participants described the experience of CTOs as being characterised by problems with communication and understanding. The model of the lived experience of CTOs for consumer and career participants can be distilled as one of profound ambivalence. As a part of the tragic journey taken by consumers and their carers in the course of a severe mental illness, CTOs are associated with distress and a sense of loss, isolation and disempowerment. From these data the study proposed a model of experience of being subject to a CTO in NSW is one of a core distress, emerging from the distress of the illness, communication gaps, difficultly accessing services, and the perceived benefits of CTOs. The findings of this research are in general agreement with other studies in that the loss of autonomy and constraints associated with a CTO are balanced with their clear benefits. These findings build on existing research in the field. From this research, it is evident that the distress arising from being subject to a CTO can be assuaged by those tasked with their implementation by focusing upon clearer communication about the order (including strategies to ensure consumers and their carers are aware of the specifics of the order), strategies to improve access to services for mental and physical services and other social institutions, and acknowledging that the CTO is a part of the overall distress of a severe mental illness.