Lived experience

Acknowledgement of lived experience

We acknowledge people with lived experience of mental ill-health and recovery and the experience 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, and carers.

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, but 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 ill-health and recovery
• as a family member and/or carer who have experience in supporting a person living with mental ill-health and recovery (a carer might be from a person's chosen family, rather than their family of origin).

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 to each other.

Why is lived experience important?

The Royal Commission heard evidence of the positive impacts of services designed and delivered by people with lived experience.

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

How have people with lived experience already shaped our work?

Our work is only just getting started. We will involve people with lived experience in both the design and delivery of our work.

We have a way to go but for example, in the design of the 144 acute mental health beds, people with lived experience have already been engaged in several ways.

They have been members of governance groups (committees), and the decisions they make.

Consumers and carers with lived experience, and the peer workforce have been working with the architects to design the new beds. This has included the building of a bedroom and en suite prototype. Having a prototype built for this project means that people with lived experience were able to visit the bedroom, and en suite, 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 with lived experience, are innovative and are aligned to the Royal Commission's intent.

On another project - the Child and Youth HOPE (Hospital Outreach Post-suicidal Engagement) services - young people with lived experience have been engaged for workshops to help plan and design the expansion of the services.

Across all our work, there will be further opportunities to have people with lived experience involved at different levels and stages.

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 and co-production.

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 harder to reach or 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.

The Mental Health and Wellbeing Division has specific roles dedicated to people with lived experience.