“Nothing about us without us is for us” remains our catchcry.
Recovery oriented approaches recognise and respect the experience, expertise and strengths that people with lived experience contribute.
Engagement and participation includes consumers, and significant others, in:
Many organisations, including Wellways Victoria, refer to a “ladder of participation” as illustrated in our version below:
The NMHCCF recognised one area of importance for lived experience leadership roles as being that of mental health research.
As noted by the Mental Health Commission of NSW:
‘Evidence shows that when consumers are partners or leaders of mental health research projects, more meaningful connections are made with participants – who find it easier to open up to someone who has experienced what they’re going through – which ultimately improves research results.
‘Consumer researchers also create more effective research tools, such as surveys, since they have greater insight into the challenges facing participants, and they report personal and professional benefits of conducting research.’
Although there has been a continuing increase in the inclusion of consumers and families/ carers in decision-making about services, policies and programs, there is not yet a consistent and non-tokenistic response across services. Across Australia, mental health inquiries, guidelines, reports and mental health plans recommend increased consumer and family/ carer participation. This participation should be across all aspects of mental health planning/evaluation, design/conduct of research, peer support services and representative roles. There is still work to be done to ensure that this eventuates.