Lived experience

Acknowledgement of lived experience

We acknowledge people with lived experience of mental ill-health, psychological distress, substance use, addiction, and the experiences of people who have been carers, families, or supporters.

Some of the most powerful evidence to the Royal Commission into Victoria's Mental Health System came from the personal experience of people living with mental ill-health, their families, carers and supporters.

There has been extraordinary determination and courage as people have revisited painful memories in the hope of shaping a better future for themselves and others. We and other Victorians are deeply appreciative for this.

This website uses language to describe and discuss themes and concepts relating to mental health and wellbeing. We acknowledge others might use different words to communicate their experience, which are also valid.

What is ‘lived experience'?

People with lived experience can identify either:

• as someone with personal experience of mental health challenges, psychological distress, substance use and/or addiction
• as a family member, friend, supporter, and/or carer who has experience in supporting a person living with mental ill-health, psychological distress, substance use and/or addiction.

This means someone who has personally navigated these challenges or who has firsthand experience supporting someone in these contexts. These profound experiences have transformed an individual’s life trajectory and shaped their perspectives, identities, and overall outlook on life

Within the mental health and wellbeing system, people with lived experience are sometimes referred to as ‘consumers' or ‘carers’.

The Royal Commission acknowledged that the experiences of consumers and carers are different from each other. However, it is also acknowledged that one person may hold both consumer and carer experiences.

What is lived and living experience (LLE) leadership?

Lived and living experience leaders have the unique ability to translate their personal experiences into expertise, which is in turn mobilised for systems change.

Embedding lived and living experience leadership means:

• creating formal, positional leadership roles held by individuals with lived and living experience at the government and organisational level; and
• intentionally embedding LLE expertise in a way that advances lived experience perspectives and contributes to system and organisational reform.

Why is lived experience important?

The Royal Commission heard evidence of the positive impacts of services designed and delivered by people with lived experience. Guiding principle 6 of the Royal Commission states;

People with lived experience of mental illness or psychological distress, family members, carers and supporters, as well as local communities are central to the planning and delivery of mental health treatment, care and support services. (page 76, Volume 1 of the Royal Commission’s Final Report)

Research shows improved consumer outcomes and experiences when a service is developed and operated by the people who use it (page 498 of the Royal Commission's Interim Report).

Peer-led services have better consumer experience and outcomes across areas of quality of life, increased involvement in employment and education, and improved relationships, as well as reduced hospital readmissions, reduced levels of distress, and lower service costs, compared to mainstream clinical services.

How have people with lived experience already shaped our work?

We will involve people with lived experience in planning, design, delivery and evaluation of our work. At all levels of the mental health and wellbeing system.

We are expanding lived experience workforces across area mental health services, including within leadership and governance roles. This has been supported through ongoing initiatives to develop and support the LE workforce.

Local communities and lived experience has been central to the design and delivery of Mental Health and Wellbeing Locals.

Within the Department of Health, this includes the creation of a Lived Experience Branch within the Mental Health and Wellbeing Division.

The Mental Health and Wellbeing Commission has been established, with Lived Experience Commissioners, to oversee the mental health and wellbeing system and protect the rights of consumers, families, supporters and carers.

People with lived experience have been engaged, including as members of governance groups (committees) in the design of 144 acute mental health beds. Consumers, carers and the peer workforce have been working with the architects to design the new beds. This included the building of a bedroom and ensuite prototype, where people with lived experience could visit and provide feedback to the architects.

Engagement is taking place through working groups, focus groups, regular discussions and consultation on models of care. This is to ensure models of care reflect the experience of consumers and carers, are innovative and are aligned to the Royal Commission's intent.

Across all our work, there will be further opportunities to have people with lived experience involved at different levels and stages. If you would like to be informed of opportunities for involvement, please visit;

What guides us in working with people with lived experience?

We have committed to placing the expertise of people with lived experience at the centre of the work we do.

The Department of Health and Human Services Mental Health Lived Experience Engagement Framework guides us when we engage with people who use our mental health services - shifting from the traditional methods of ‘deliver and inform' to better collaborating with consumers and carers through co-design, co-production and LE led approaches.

The following principles inform the way we engage with people with a lived experience of mental ill-health and recovery.

• Be purposeful - we want to make sure the roles for consumer and carer participants are defined. This is so people understand what is expected of them and what they can expect from the process.
• Be prepared - this means engagement should occur early and be informed by an understanding of the historical context that people with lived experience bring.
• Be genuine - this involves actively seeking input and collaborating with consumers and carers and making a commitment to maintain trust and strengthen these relationships over time.
• Be inclusive - this principle values the experiences and opinions of all involved, including those who are traditionally excluded from the conversation.
• Communicate regularly - this recognises that communication should occur throughout the engagement process to keep those involved updated and provide feedback on how input has been used.

Lived and Living Experience Leadership Strategy

• The Lived Experience Branch is working with lived and living experience sector partners to develop a Lived and Living Experience Leadership Strategy.
• The 10-year strategy will set out the Victorian Government’s policy and strategic approach to the LLE workforce and leadership development in state-funded mental health and wellbeing and alcohol and other drugs (AOD) systems, including harm reduction and suicide prevention and response.
• The purpose of the strategy is to enable and embed system-wide leadership and involvement of people with lived and living experience.