Lived experience in mental health reform: Valued voice or hollow gesture?
Today Maria Katsonis, a mental health advocate with lived experience of mental health issues, discusses the complexity of including lived experience in mental health reform, warning that organisations and policymakers must be willing to share power if the promise of lived experience is to be realised.
While thought of as a recent development, lived experience in mental health reform has been around since the 1970s with the advent of the consumer movement which fought for the rights of people with mental ill health. This was soon followed by the advocacy of family, carers and supporters who sought better treatment, care and support for people with mental health challenges.
The 2019 Royal Commission into Victoria’s Mental Health System brought the role of lived experience to the forefront of reform. As the Royal Commission said, “People with lived experience of mental illness or psychological distress, families, carers and supporters have an authentic and valued role in the ongoing development of the system and the delivery of services.”
The cry for lived experience has since echoed through the corridors of bureaucracy and decision making, wending its way into advisory groups, expressions of interest and participation registers. The demands on mental health advocates, both individual and peak groups, has never been greater.
What’s sometimes not recognised is that integrating lived experience into mental health reform comes with significant challenges. Power imbalances and structural barriers can limit the ability to effect real change. People with lived experience are often invited into deliberations with good intentions but are not treated as equal decision-makers. It is a form of tokenism and many of us have sat in rooms where our perspectives are heard but not listened to. It is demoralising to share experiences and insights only to see them dismissed or diluted by bureaucratic processes and decision making.
My most recent tokenistic experience was on the Steering Committee for the National Mental Health Commission’s Stigma and Discrimination Reduction Strategy. I served on the Committee for two years alongside eleven fellow consumers and carers. We were all bound by an inalienable sense of hope that we could contribute to an Australia where stigma and discrimination based on mental ill-health are no longer barriers to people living long and fulfilling lives.
The Strategy involved extensive consultation around Australia and collaboration with people with lived experience and their families, carers and supporters. We delivered the draft Strategy to government in 2023. We heard nothing for a year until we received a bland email that provided “a quick update on the status of the Strategy” and “a sincere thank you for all your contributions”.
The upshot was that the Federal Minister for Mental Health and Ageing had asked the Department of Health to “consider actions from the Strategy and share the Strategy with senior officials across governments to inform joint action in the reduction of stigma and discrimination.” As a former bureaucrat, I know what weasel words look like and “consider” means absolutely nothing in terms of implementation or commitment to public release. The response was woefully inadequate and dismissive of the collective lived experience that infused the Strategy.
True inclusion of lived experience requires shifting and sharing power, not just being invited to the table. It means ceding decision-making authority and embedding lived experience perspectives into the core of policy and service reform. Lived experience must be valued as an essential form of expertise, not just as an advisory perspective.
Illuminating Lived Experience from Sydney University’s Policy Lab provides an excellent starting point when its asks policymakers to consider these questions when engaging with lived experience:
How are we ensuring our relationship practices with persons and communities are reciprocal and not extractive?
How are we including people from diverse communities, at their discretion, as active and equal members of our teams in ways that allow them to exercise agency and autonomy?
How are we collaboratively identifying and evaluating tangible evidence our collaborators benefit from their involvement and the outcomes?
There is also a need for policymakers to understand the nuances of lived experience rather than using it as a singular and uniform term. There are those with lived experience who reject the use of mental illness or ill health as they are phrases rooted in a biomedical model that pathologises and stigmatises. Some will call themselves survivors or consumers while others have proudly reclaimed mad as a movement. Even the phrase “lived experience” is being re-thought with a move to “lived and living experience” which recognises both past and current experiences.
It is incumbent upon those who are inviting lived experience into the policy and service delivery domains to understand these complexities. There can be no singular lived experience voice that can speak on behalf of the collective as experiences are personal and unique. They are shaped by access to (and the quality of) care and treatment as well as by a person’s culture, identity, geography, sexuality and gender.
Policymakers need to listen to a wide range of experiences and perspectives for policy and service delivery reform to be inclusive. They also need to commit to shifting power and dismantling structural barriers. Without this, the promise of lived experience in reform risks becoming an empty gesture rather than a force for change.
Maria Katsonis is a mental health advocate and has lived experience of mental health issues as a consumer. She is the Deputy Chair of the Victorian Collaborative Centre for Mental Health and Wellbeing and an Industry Fellow, Public Policy at the University of Melbourne.