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Welcome announcement puts people with lived experience in the driver’s seat

Introduction by Croakey: At the Mental Health and Equity and Access Forum in Canberra this week the Albanese Government announced they were investing $8.5 million to support people with lived experience of mental ill-health in driving mental healthcare reform.

Most of the funding – $7.5 million – will be spent on establishing and operating two independent mental health lived experience peak bodies. One of the peak bodies will represent consumers, and the other will represent carers and families.

Minister for Health and Aged Care Mark Butler said in a statement that:

…hearing from those with lived experience is incredibly important to making improvements in mental health. Progress will come from putting consumers and carers first. These two independent national bodies will amplify the voices of consumers and carers to drive equitable reform in mental health.”

For many consumers, carers and people with lived experience, this is a welcome announcement that advocates have been urging, for many years.

Croakey will publish more on the announcement in weeks to come – below are some of the initial responses, which also raise important questions about how the bodies will be established and governed.


Voices of lived experience

Kerry Hawkins, vice-president of Mental Health Carers Australia, a Director of Emerging Minds, a Trustee of Psychosis Australia, President of the Western Australian Association for Mental Health and a 2022 Churchill Fellowship award recipient. She works from a family lived experience perspective at a system reform level.

The importance of this historic announcement, and what it has unlocked, cannot be overstated. The establishment of lived experience peak bodies will finally give us the solid ground on which to build real reform work. It’s what the World Health Organization has been calling for, it’s what the United Nations had been calling for, and most importantly it’s what Australian consumers and carers have been calling for now, for decades.

It signals a shift away from wheel-spinning rhetoric; it signals that government is serious about mental health reform, and it gives much-needed hope to people with lived experience (including youth and children) that it will be their voices, lives and needs, finally, that shape mental health commissioning, policy and services, rather than service provider opinions about what people need. This realignment of resources and services around people’s needs, whoever they are and wherever they live, is the key to effective reform and will propel us out of the quagmire we currently find ourselves in, including the NDIS.

Governance matters

Simon Katterl, consumer workforce member who has worked in community development, advocacy, regulation, and law reform. Simon’s work is grounded in his lived experience of mental health issues, as well as his studies in law, politics, psychology and regulation.

The announcement of separate peaks is huge. It gets us to the starting-line for real mental health reform in this country. So many longstanding consumers and advocates, such as Tim Heffernan, Fay Jackson, Vrinda Edan, and more have pushed for a specific consumer peak for decades.

To ensure credibility and impact of the body, the governance of the body should include both state and territory peaks as well as non-peak body members.

The national peak needs to be constituted by the deep wisdom of these peak bodies and their connections to consumers and the system, but also be challenged by the views of others independent of the peak bodies, particularly those from backgrounds or communities that might be less often heard.

See Katterl’s reflection on the announcement here

Historic

Craig Wallace, Chief Executive Officer at Victorian Mental Illness Awareness Council (VMIAC), a committed and determined advocate for consumer rights for years.

VMIAC welcomes this decision from the Commonwealth. It is a historic acknowledgement of our wisdom and expertise on matters that affect us, one that is the result of decades of unfunded advocacy and activism from people like us.

We do look forward to more detail on the announcement, such as how funding of $7.5 million over four years will be used to establish and operate two peak bodies, how the national peak bodies will be constituted and governed, and, crucially, what role peak bodies in the states and territories will play in this process.

VMIAC believes the state and territory peaks need to co-design the governance for, and steer the establishment of, the national peaks which, in effect, should be an alliance of voices from the state and territory peaks.

This is vital because national reforms will flow on to affect people in each state or territory, likely in different ways, and these people will come to their respective state or territory peak for advocacy and support. This reality also needs to be factored into the implementation funding.

Independence and reporting

Dr Sebastian Rosenberg, Senior Lecturer, Brain and Mind Centre, University of Sydney

The establishment of peak consumer and carer bodies in mental health is both welcome and overdue.

One often overlooked element of Australia’s innovative first National Mental Health Strategy back in 1993 was the establishment of a National Community Advisory Group (NCAG). This body reported directly to the Minister and was supported with its own secretariat. It aimed to understand and present the views of consumers and carers as part of the mental health reforms underway. So we have done this before. You can read something of the colourful but shortlived history of the NCAG here.

One key challenge for this kind of advocacy is to move from the individual stories, about what happened to me, to the provision of more systemic advice. The development of this kind of professional and systemic advocacy takes time, skill and resources.

The new consumer and carer bodies will also need to have strong roots or connections to what is happening on the ground locally and regionally – to really know what is going on. The new national bodies will need state and more local consumer and carer structures to gather this intel and make sense of it. It will be important for the new peaks to operate with independence and avoid being ‘managed’ or muzzled even by well-intentioned Commissions or departments.

One of the key problems facing mental health reform in Australia is the almost complete reliance on health professionals to collect and report data for accountability. The launch of the peaks represents a tremendous opportunity to establish new direct reporting from mental health system users not just about the cost of services or access issues, but about their quality and impact on people’s lives.

As was recently said in relation to the Aboriginal Voice, it is one thing having a voice, it is another being listened to. This is a challenge for mental health policy makers.

There are new low cost, personalised, digital mechanisms by which to engage Australian consumers and carers in the process of systemic quality improvement in mental health. Was the service you received delivered in the way you wanted it? Did it help you go back to work, go back to school, rejoin your life? This could be gamechanging. Let’s play!

Rosenberg wrote more about the primary mental healthcare roundtable here.

Genuine inclusion

Gill Callister, CEO, and Katie Larsen, Senior Manager Inclusion and Participation of MIND Australia

Mind Australia welcomes the Federal Government’s commitment to establish two national peak bodies to support people with a lived experience of mental health to shape the policies and programs that affect them.

“An increased role for people with lived experience of mental ill-health is a game changer in mental health reform. Consumers and carers are the best placed people to inform the change that is required to reform the mental health system,” Callister said.

Larsen said “The recent announcement by the federal government to establish two national peak bodies to support people with a lived experience of mental ill-health shows us that Australia is moving in the right direction.

This is about consumers, families and carers having a voice at the table in decisions and governance that directly affect their lives.

People with lived experience need to be genuinely part of the decision making process at every level of our mental health system.

When you put lived experience in the centre of the decision making process it challenges and pushes against the status quo of how decisions have been made in the past and drastically changes the way we collectively think about what’s most important.

We have lived experience leaders across the country who can guide us in how to move from talking about having a lived experience-led mental health system to actually creating one, and now we are seeing acknowledgement and investment to make it happen.

A peer-led system, which this will hopefully lead us towards, will have a heart and wholeness to it in a way the existing mental health system has not always been able to demonstrate or maintain.

We are at an exciting moment of transition from talking the talk about having a lived experience-led mental health system to walking the walk by actually creating one.”

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