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People with lived experience must be central to mental healthcare reform

Introduction by Croakey: For the newly announced mental health lived experience peak bodies to work, it is critical they are legitimately independent from government and involve people with lived experience, according to VMIAC CEO Craig Wallace.

The role of state and territory peak bodies is also of concern, with Wallace arguing below that the national peak body should include representatives from states and territories – their “community-centred traditions and deep connections to our consumer base” will guarantee independence.

While the peak bodies are welcome, Wallace raises questions about governance, implementation, representation, diversity and funding.

“For this reform to endure, it must be vested in the people who need it most, who are closest to the problems – us, the consumers of the system, and their carers,” Wallace writes.


Craig Wallace writes:

When Federal Health and Aged Care Minister Mark Butler announced $7.5 million to set up and run two independent national peak bodies – including one representing consumers – it felt like a watershed moment.

Firstly, the pledge honours the tenet that those closest to the problems are closest to their solutions.

It affirms the Government’s intent to locate those with lived experience at the heart of its reform of the national mental health system so our voices shape the policies and programs that affect us.

Secondly, the commitment is historic, hard fought and won over decades of unfunded advocacy and activism by many organisations and individuals spread across the states and territories.

It is historic also because this is unfinished business for Butler. He first mooted a national consumer voice in 2012, months before the last Labor government was sent to Opposition for a decade.

Elation gave way to measured optimism, and VMIAC started looking for more detail.

Our central concern is the role the state and territory peak bodies will play in this reform.

VMIAC contends that any national consumer peak must include representatives from the state and territory peaks at its core to help to co-design its governance and guide its establishment.

There are sound reasons for this.

Representing diversity

In Victoria alone, consumers are a patchwork of diverse communities.

When VMIAC consulted on our Declaration, we surfaced more than 180 themes to articulate the disparate needs and aspirations of our members.

Taken to a national level, this diversity multiplies, and the mechanisms to engage hard-to-reach consumers become significantly more complex.

Many of VMIAC’s members have found government consultation methods inaccessible, requiring technological and policy skills outside the experience of everyday consumers. People with disabilities, or facing digital, cultural or language barriers have been excluded. They turn to us for advocacy and support.

Acutely aware of the on-the-ground impacts consumers face due to the funding mix for mental health services in Australia, VMIAC deals with issues unique to how Victoria intersects with the Commonwealth on mental health and adjunct services (like the NDIS), and the advocacy and complaints bodies.

VMIAC knows our consumers. Through a variety of channels, we listen to them regularly. We understand the diversity of issues they face. For years, we have been synthesising intelligence gathered from ground-up and providing systemic advice to governments.

Even though our membership has yet to encompass the full diversity of consumers, as far as having a finger on the pulse, we understand the issues faced by those who use Victoria’s mental health system better than any other body. And we can stand for their needs best.

VMIAC believe the same can be said for our counterparts in other states and territories.

As organisations built by and for consumers, we have played vital connecting roles and forged close relationships and trust with our members over decades. And as national reforms flow on to affect people in each state and territory in different ways, these connections will be critical.

Collectively, we are the people closest to the problems, and we must be integral to designing their solutions.

Legitimate independence

Butler has also assured us that the national peak will be independent. While welcome in principle, we have questions on what this will look like in practice.

For one, from decades of experience in the field, we’ve seen that, just like in any other sector, consumer organisations come in shades, and differ in missions and ethos.

More recently, practitioners from mental health services have taken up leadership roles at a few of these bodies, shaping those organisations’ agendas and orientations accordingly.

Given that the practitioner-consumer relationship is often oppositional, this is a crucial development.

When compared to other fields of medicine, ‘expert’ practitioners in mental health hold disproportionate power over their patients’ lives.

Practitioners are also often predisposed to concerns around pharmacology, fees and rebates, session numbers and beds. They lobby for these interests: more hospital beds, more clinical jobs, more funding.

We do not look to invalidate these concerns, but to acknowledge that with advances in these interests come many things that consumers do not want, including forced treatments and restrictive practices.

It is VMIAC’s expectation and hope that the governance of any national consumer organisation is sensitive to these tensions and imbalances between service providers and practitioners, and consumers.

To date, governments have principally listened to practitioners on how to ‘fix’ mental health and legislated based on their advice of what is in the consumer’s ‘best interests.’

As consumers, we do not need others to determine our ‘best interests.’ We can speak for ourselves, and we know what we want and need, provided we have the right representation at the table.

To give the new national peak legitimacy among consumer communities, we, as experts through our own lived experiences, are crucial to the co-design process.

Against this complex backdrop, questions on where the board, leadership and staff of the national peak will be drawn from and how its continued independence will be ensured become pertinent.

Community-centred

Naturally, we argue that the national body must include representatives from the state and territory peaks, with our community-centred traditions and deep connections to our consumer base, to guarantee independence.

Secondly, we are concerned whether $7.5 million over four years is adequate to set up and run two peak bodies. Even if all this funding went into staffing, it would employ roughly 15 people across the two peaks to represent millions of Australians in need, creating another David and Goliath scenario.

Finally, and fundamentally, we question whether a consumer body situated within the corridors of bureaucracy can be genuinely independent and drive positive change amid incredible pressure to fall in line with departmental or government agendas and talking points.

We implicitly trust the Albanese Government’s mission to “change the nation for the better,” but will this peak be able to resist and hold future governments to account?

We consumers learn from history.

As our mental health systems buckle, we who use these critical services simply cannot afford to wait another ten years for reform, or to bear the risk of hard-won reforms getting wound back in three years.

We need Minister Butler’s pledge to stick.

For this reform to endure, it must be vested in the people who need it most, who are closest to the problems – us, the consumers of the system, and their carers.

The state and territory peaks know this well. We look forward to working on the solutions with the Federal Government, together.

Watch Wallace’s discussion on the national peaks here.

About the author

Craig Wallace is the Chief Executive Officer of VMIAC. With a background in community psychology, Wallace has been a committed and determined advocate for consumer rights for years and has a depth of understanding of the mental health sector change agenda.

As CEO of VMIAC, Wallace brings to the role his personal experience of the mental health system in Victoria and the consumer perspective which informs his passionate approach to advocacy.


See Croakey’s extensive archive of articles on mental health reform.

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