Transforming mental health care through lived experience

Thinking back to life before lockdown, it can be tempting to do so through rose-tinted glasses.

Some things, like travel, may have indeed been easier, but many major issues like affordable housing, secure employment, loneliness, violence and access to mental health care were in need of urgent attention before pandemic – and still are.

For decades Australia has been facing a mental health crisis and, of course, the effects of the pandemic mean our response now is even more critical.

The good news is that inquiries like the Productivity Commission report into mental health, handed to the government in June 2020 and released in November, have already identified what has been going wrong – so the focus now must be on how to mend the cracks we already know about.

Broadly, the issue in Australia is that although we do have an existing mental health system, the report found that it often fails because it is too difficult to navigate.

For the one in five people who experience mental illness in Australia each year – currently almost half of all Australians will be diagnosed with a mental health condition during their life – they also experience a fragmented system with multiple entry and exit points.

Despite calls for a “whole-of-system reform”, there has typically been an underlying perception that responsibilities for different levels of mental health need sit in different parts of the system.

A recent article on positive steps to mental health reform describes two systems for mental health care in Australia: one for people living with depression and anxiety who go to primary care, access a general practitioner and other psychological services; the other for people living with severe mental illness who access acute, hospital and community-based care.

If there is a beginning point to system change it must be here; it is essential that those parts currently viewed in isolation are brought together.

It’s simply no longer acceptable that people who live with severe mental illness face potentially 25 years less of life due to things that can be changed. Or that Aboriginal and Torres Strait Islander people face stigma, discrimination and inequities in health contributing to a further reduction in life years.

By recognising that many people share experiences of a mental health care system that has multiple entry and exit points across the whole system, we can use this knowledge to design a better system for those people using it.

This is why our approach to re-designing the mental health care system is what is known as co-design.

The term has gained prominence in research, practice and policy in the last two decades, but there have been plenty of critics of co-design over a lack of clarity and tokenism.

But at its heart, co-design is about the importance of story, participatory design approaches and working collaboratively through creative and facilitated models to achieve change.

Over the next five years, the National Health and Medical Research Council (NHMRC) will support the co-design of the next era of mental health care in ALIVE – the first Australian national research translation centre to implement mental health care at scale.

To do this, the centre will provide the infrastructure, networks and strategies for moving pockets of innovation in research, and models of care that have made a difference to people’s health and wellbeing into services.

It will reach more people in the community, in the places where they live and work as well as providing a bridge between primary care, community and the whole system.

The national centre has been established to catalyse the collaboration and whole-system change nationally, and across Australia’s states and territories.

It will enable a whole-of-system change in mental health care and represents a generational shift in mental health research, where the lived experience of people with mental health conditions are central to the co-design of the transformation that is required across the health care system.

The centre will bring researchers, people with lived-experience, services and organisations together to embed co-design and move effective models of care into service and systems settings.

One of the founding objectives of ALIVE is to support research career pathways and lived experience-led research to drive change. The centre has an ambitious agenda for growing the next generation of mental health researchers.

It’s critical that all efforts for change are accompanied by implementation strategies and to support this.

In 2017, my team established the Co-Design Living Labs program at the University of Melbourne to embed rigorous and systematic lived-experience models in mental health research design and translation.

The Co-Design Living Labs program has more than 2000 members who have been engaged in University research studies prior to joining and, who have lived experience across mental health conditions, some of whom participate in different co-design activities for mental health research.

Jarrad, one of the Co-Design Living Lab program members says that, “it is a great way for research to hopefully really make an impact on ordinary people’s lives because sometimes research does not necessarily make that leap, so I am hopeful that research can really expand in that area of helping people.”

The Living Lab members co-designed research priorities for the centre that are at the forefront of our research program goals.

They identify accessibility of services, like providing welcoming environment, earlier identification of needs at whatever life stage and age (ensuring targeted approaches for reaching people who have those needs, in the places where they live and work beyond health care settings), use of technology where possible, and very tailored approaches – with good information sharing and monitoring and tracking of progress as essential to improve outcomes.

The two research programs that will be embedded are : (1) preventive models of care across the life course (2) priority populations such as Aboriginal and Torres Strait Islander needs and people living with severe mental illness.

Effective models and ways of working exist to address this and will require a major national effort and whole-system approach.

Co-design is essential to turn the tide on the burden of mental illness in Australian communities.

By harnessing the expertise of people who live with mental health needs, bringing services, researchers and government to work together, we can achieve change.

If you or anyone you know needs help or support, you can call Lifeline on 13 11 14.

ALIVE, will implement the Co-Design Living Labs model across the 14 university partners of the Centre.

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