The 1996 TheMHS Conference, Brisbane: A Reflection on Consumer Involvement in Mental Health and the Birth of the Australian National Consumer Network Melanie Schuth (née Scott) (bio), Helen Glover (bio), and V. Kalyansundarum (bio) As compared to the rest of Australia, deinstitutionalisation and the development of community mental health services commenced relatively late in Queensland. Yet, once it started in the mid-1990s, there was a time of exceptional innovation and change in the state’s mental health sector. After the publication of the influential Burdekin report (1993) and with the momentum of the first National Mental Health Strategy, there was an openness among government officials and policymakers to explore new ideas and explore new ways of working.1 Consumer voices were being heard—many dared not only to speak, but to speak loudly. Many people are able to ignore the history of the Australian consumer movement until it is told boldly and loudly. During the early 1990s, the involvement of lived experience in mental health was still novel in Australia. In 1994, The Mental Health Services conference (TheMHS; one of the most progressive organisations in Australia and New Zealand in mental health), responding to then prominent consumer advocacy voices, advanced consumer involvement by dedicating a day to consumers.2 This spearheaded opportunities that would not have occurred as early, organically, or as genuinely as they did during this period. The organisers were convinced that consumer involvement should not be merely tokenistic: if lived experience voices were to be incorporated in the planning and running of mental health services, they had to be incorporated in an authentic and genuine way. We, the authors of this paper—Dr Kalyansandarum (Kaly in everyday life), Helen Glover, and Melanie Scott—were involved in the planning of the 1996 TheMHS conference and in various initiatives in mental health afterwards. We came together nearly thirty years later to reflect on what transpired during that time. We realised that much time had passed since the mid-1990s and that our memories were somewhat patchy as to the finer details of how the three of us joined forces and how both lived and learned experiences participated to co-create the 1996 TheMHS [End Page 135] conference and attempted to advance the ‘consumer’ movement. To this end, we recorded interviews about our recollections with each other about the conference and what emerged afterwards. Three key themes emerged from the discussions about our recollections. These themes, we think, remain pertinent today: 1. A strong desire to do things differently 2. Thinking big and well outside the box 3. An openness to experimentation A note on language: In the 1990s, the term ‘consumer’ indicated a radical shift from the term ‘patient’ or ‘ex-patient’. We acknowledge that we use the term in the context of the time it originated, noting that a broader range of person-first language is currently widely accepted in the sector’s linguistic lexicon and preferred by individuals who access services. 1. A Strong Desire to do Things Differently In our conversations with Dr Kaly, we inquired about his motivation to engage and include people with a lived experience of mental ill-health in the work he did in mental health. As this was during the post-Burdekin era, we anticipated that he would emphasise the importance of upholding people’s human rights, and their right to be heard and taken seriously in matters of service delivery. Whilst this was important to him, it was not his main motivation: Dr. Kaly: I was not so much interested in lived experience involvement in itself, but much more interested in the notion of personal recovery and learning from that to improve both my own practice and how we delivered services. Involvement and participation was the method we utilised. Instead of reading books about it I wanted to hear from their hearts. I wanted to learn from people who knew, based on their experiences. I firmly believed in the potential that people with serious mental illness and institutionalisation can lead good and fulfilling lives. Dr Kaly’s ethos about being led, informed, and, very often, challenged by lived experience wisdom extended well beyond mere consultation. His genuine desire...
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Mar 15, 2022
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