Queensland Reflections — Re;minding Histories

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), Helen Glover, and V. Kalyansundarum

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.

Logo of the 1996 TheMHS conference held in Brisbane.

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 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:

A strong desire to do things differently
Thinking big and well outside the box
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 to establish new ways in which mental health services could be designed and delivered required the full-time participation of individuals with lived experience as full team members. It required employing people with a lived experience to design new service models and deliver services, while bringing a critical eye to service improvements, and come on board as co-investigators in mainstream research projects. Whilst this stance seems commonplace in 2022, it was novel and even somewhat controversial in Queensland in 1995. Dr Kaly was a true pioneer; his vision resulted in extraordinary innovations in Queensland at the time.

The 1996 The Mental Health Services conference held in Brisbane constituted yet another pivotal opportunity to change the status quo in mental health, by inviting people with a wisdom based on the lived experience of recovery to shape and lead the conference.

Dr Kaly: It had to be lived-experience voices at the forefront, especially to run and shape the conference program, because if the conference was to bring genuine and meaningful change, then it could not be done by professionals alone.

The 1996 Brisbane TheMHS organising committee caught Dr Kaly’s vision: those with lived experience were not merely consulted around the edges; the committee collaborated fully with as many lived experience people as possible, especially in designing the conference program. The selection of the TheMHS 1996 keynote speakers set the stage for a unique and transformative conference program. They included Dr Patricia Deegan, a prominent ‘consumer’ leader and founder of the National Empowerment Centre in the USA; Dr Charles Rapp, who had developed the Strengths Model, a recovery-orientated alternative to traditional service approaches; and Professor John Strauss, a pioneer in improvement models of working.3 The theme chosen for the 1996 conference, There’s a Person in There, was applicable to each and every delegate and highlighted the importance of collaboration and inclusion.

Dr Kaly’s advocacy for lived experience and lived knowledge went further than merely simple consultation. He wanted a conference co-convener who could draw on their lived experience of overcoming the impacts of mental ill-health as well as a strong advocating voice that could indicate how things could be done differently. Melanie Scott was nominated by her peers in the consumer movement to co-convene the conference along with Dr Kaly. The ‘Kaly and Melanie’ tag team, as the co-conveners of the 1996 conference, became a true collaborative team, working in partnership while bringing complimentary skill sets to all aspects of conference organisation.

Dr Kaly: I didn’t make decisions by myself. Melanie initiated many of the ideas for the conference. She brought ideas that were outside the normal expectation of what professionals normally envisage.

Melanie: Kaly challenged me to organise a conference that I would like to attend. If I was excited to attend, then it stood to reason that others would [be] too. Kaly never told me what to do or how to do it.

Despite the fact that many people in the wider mental health field thought that it was a great idea to share the convenor role to include both lived and professional experience bases and that this new way of leading was innovative and very successful, it has not been replicated at any subsequent TheMHS conference as of yet.

2. Thinking Big and Well Outside the Box

The 1996 TheMHS conference, which was informed and led by lived experience, provided a unique opportunity to develop even bolder visions. It became the forum for establishing the inaugural Australian National Consumer Network. Although there had been no previous attempts to do this, there were high hopes that a dedicated national body could raise important issues relevant to those accessing mental health services and bring much needed person-centred systemic change to both mental health research and mental health services.

During the eighteen months prior to the conference, prominent consumer advocates across Australia worked together to contemplate new possibilities and what was require to ensure the birth of the National Consumer Network at the pre-conference consumer days of the TheMHS conference.

In developing the National Consumer Network, there were several imperatives to consider. Co-opting the principal leaders within the movement was essential to realise our vision. Hours were spent talking, visioning, and deliberating on how everyone’s viewpoints could be included best and to construct a process that was inclusive rather than exclusive. For the network to be genuine, it was essential that every state was represented, that key consumer advocates were included, and that the outcome would not be one single unified ‘consumer voice’ but instead a platform where all voices could be heard.

Melanie: It was the early days of tele-conferencing, and we worked out a way out with Telecom to organise a phone hook-up with everyone involved. … This was so important in creating a shared vision for the future of the network.

Setting up a National Consumer Network was neither a straightforward nor an easy process, as it required navigating many challenging roadblocks. Despite many sleepless nights, we always faced these obstacles with an underlying determination of finding a way forward. Early on, it became apparent that TheMHS itself was not able or willing to fund the pre-conference consumer days required to set up the network. Often the most effective way of dealing with roadblocks was to find a way around them! As a committed group of people united by a common vision for the future of the consumer movement in Australia, we successfully negotiated funding from other supportive organisations, which allowed the consumer days to be held. To form and establish the network, it was essential to have people with a lived experience of accessing services from across the country attend, even though many of them were not able to afford to travel to Brisbane and stay in hotels. Fortunately, we were able to support over two hundred consumers to attend the conference and the pre-conference consumer days. Unfortunately, the feat to have a strong and representative social movement gather in one place has not been repeated since, thereby minimising the likelihood that systemic change will occur in meaningful ways.

3. An Openness to Experimentation

There was no template for organising the conference; experimentation therefore was a necessity. Developing a genuine inclusive process was essential in order for the workshop to found the Consumer Network, as was finding a skilled, impartial, and external facilitator for the day itself. Another crucial ingredient was for each participant to bring a willingness to learn with and from each other. Many advocates and consumers had long been motivated by anger and were used to working confrontationally. Helen soon realised that ‘transformative advocacy’ had to rise above ‘angry advocacy’ to create something collaborative and positive. Learning to ‘play the ball rather than the person’ and reacting to issues rather than to those who were obstructive enabled the team to make progress towards realising the larger vision. Without a team approach, it was obvious that there could be no National Network and no meaningful collaboration and co-production of the TheMHS conference itself.

A collaborative attitude spread to all aspects of the 1996 TheMHS conference. People who were or who had been using psychiatric services participated in all aspects of the conference organisation including program design, program selection, cultural events, and venue booking, as well as introducing keynote speakers and moderating sessions. This at times caused tensions, for example when some lived experience individuals rejected papers based on their contents rather than summarily accepting abstracts by renowned authors. This at times made for awkward and uncomfortable discussions which highlighted the difference in priorities, but it also reinforced the importance of the conference theme There is a Person in Here. The participation of consumer voices also led to conflicts in unexpected areas such as the TheMHS Awards Ceremony. Because the federal Health minister was unavailable to present the awards, the organisational team had assigned that role to a local news reporter. Lived experience advocates argued that we had to give the occasion greater gravitas; we therefore brought in the governor general for the event. Our eagerness to identify and initiate new ways of doing things and embrace new approaches became inherent to the process we followed, which was markedly different from the tick-box approach that is often used when incorporating lived experience today.

Beyond TheMHS 1996

Queensland has always had the reputation of being conservative, slightly authoritarian, and at times even backward. It was one of the last states to deinstitutionalise, and to develop community mental health services. Yet, after 1996, its approach to mental health was remarkably progressive and included lived experience voices in many of its initiatives.

Project 300 (P300), initiated in 1996, supported three hundred people leaving long-stay institutional care to take up their rightful place in their community of choice.4 They were not just supported with mental health treatment but also with permanent housing and intentional support to meet their psychosocial needs within their local communities. The mental health professionals supporting this process had a strong desire to understand the challenges posed by mental illness in the lives of individuals as best as they could to provide the best possible support to these people. Melanie and Helen formed a consultancy and became sought-out lived experienced facilitators for universities, businesses, NGOs (non-government organisations), and government departments. The Queensland government, for example, awarded them the contract to provide experiential training to all Project 300 workers.

Helen: Designing the week-long experiential training for workers in a somewhat institutional setting challenged many of the P300 workers. They were used to being accommodated in hotel rooms, provided with hotel meals, and sitting in conference rooms. We wanted them to have an ‘experience near’ the conditions of so many of the individuals they would be supporting: shared rooms, shared bathrooms, and set menu. We provided experiential learning following the example of Pat Deegan’s simulated Hearing Voices workshop, requiring participants to complete daily living and community access tasks whilst hearing voices. ... In subsequent years, many participants have shared how this training has shaped their on-going professional practice.

The lived experience movement in Queensland became stronger in many areas following TheMHS 1996. Many professionals and policy makers involved in the planning of TheMHS continued to engage with people with a lived experience in their day-to-day work. At this stage, there was no strong policy framework to guide this, but there was an emerging willingness to include rather than exclude lived experience voices. Helen continued to work with Kaly in Caboolture (around fifty kilometres north of Brisbane) to build a lived experience network and peer-to-peer provider team.

Helen: Kaly asked me to build a consumer network in Caboolture. He said that he needed it to complement the services provide by the clinical team as it was not available 24 hours a day. He also believed that peers had something different and valuable to offer to fellow peers. I was excited by his vision but was also challenged as to how to realise it.

Many peer-to-peer initiatives were developed by the Caboolture peer network aiming to ensure that people could access a peer connection no matter what time of day or night. This work, in some way, provided an example for many other health services. Many wanted a formula and guidelines for how to do this but, unfortunately, this work is more of an art form rather than science.

Helen: The secret to successful engagement initiatives is always to go back to the people who have the need, to ask, to design together, to build it together, to discard what doesn’t work, and then build it again until we get it right. It is very important to emphasise the process and not the outcome.

Conclusion: Lessons from the Past to Take to the Future

The inclusion of lived experience in each aspect of organising the conference, including the program and the cultural events, created a buzz of innovation and optimism, indicating a genuine sense that change was happening and that the conference would be a pivotal moment in the positive reform of the mental health sector. The ripple effect on Queensland’s mental health sector included a wide range of new government services, the establishment of several NGOs, and a willingness of service providers to consult people with a lived experience of using psychiatric services in service design, policy formation, service delivery, and service evaluation.

When we reflected on these heady days, we concluded that the most important factors during this remarkable period were the genuine desire to work differently and being comfortable in experimenting with new approaches. Without policies and templates to follow we had no alternative other than to find new ways of collaborating. We learned that we had to invite and embrace different perspectives and to work through conflicting objectives and mindsets to find new ways forward. We had to be willing to risk going off-road to overcome roadblocks.

Sometimes we have to look back in order to move forward. From the TheMHS 1996 experience, we derive several key elements to hold onto when engaging with people who are willing to share their lived experience:

A strong desire for different ways

Being humble without knowing

Without status

Without policy

With the freedom to experiment and make mistakes together.

These were and continue to remain the ingredients essential for meaningful engagements with each other.

Helen Glover is a lived experience activist and consultant. She is currently director of Enlightened Consultants. She became active in the 1990s in her native Queensland. She was a senior project offi cer at Queensland Health from 1995 to 2002. She was actively involved in Project 300, which started in 1996. Helen now specialises in working with organisational clients who want to redesign better ways of delivering recovery oriented services for those who access them.

Vaidyanathan Kalysundarum (Kaly) is a physician who moved from his native India to Australia in 1972, where he specialised in psychiatry. He was the coconvenor of the 1996 TheMHS conference, which was held in Brisbane. He has been involved in several pioneering mental health initiatives, all of which involved peer workers, among them the community mental health centre in Caboolture. Kaly recently retired from his professional work at age 82.

MELANIE SCHUTH (NEE SCOTT) is a lived-experience mental health activist who became active in the 1990s in her native Queensland. She was the co-convenor of the 1996 TheMHS conference, which was held in Brisbane. She currently lives in Dusseldorf where she is the head of the International library.

This reflection first appeared in Health and History 24, no. 2 (2022): 135-143.

1. Human Rights and Equal Opportunity Commission (chair: Brian Burdekin), Human Rights and Mental Illness: Report of the National Inquiry into the Human Rights of People with Mental Illness [Burdekin Report], 2 vols (Canberra, ACT: Australian Government Publishing Service, 1993); Australian Health Ministers, National Mental Health Policy (Canberra: Australian Government Publishing Service, 1992). The first national mental health plan was developed in response to the Burdekin Report to address severe shortcomings in Australia’s mental health services. The report had been available in draft form for some time before its publication.

2. For TheMHS see https://www.themhs.org/ (accessed 29 Dec 2022).

3. For representative publications see, for example, Patricia Deegan, “Recovery as a Journey of the Heart”, Psychiatric Rehabilitation Journal 19, no. 3 (1996): 91–7; Charles A. Rapp and Richard J. Goscha, The Strengths Model: A Recovery-Oriented Approach to Mental Health Services, 3rd ed. (New York: Oxford University Press, 2011); and John Strauss, “Reconceptualizing Schizophrenia”, Schizophrenia Bulletin 40, Suppl. 2 (2013): S97–S100.

4. See, for example, Tom Meehan, Terry Stedman, Samantha Robertson, Suzanne Drake, and Robert King, “Does Supported Accommodation Improve the Clinical and Social Outcomes for People with Severe Psychiatric Disability? The Project 300 Experience”, Australian and New Zealand Journal of Psychiatry 45, no. 7 (2011): 586–92.