Credit: Tima Miroshnichenko from Pexels
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Credit: Tima Miroshnichenko from Pexels
It is common for services and organizations to provide peer support programs for people who have been diagnosed with a physical illness such as cancer.
Such programs recognize the need for people to learn how to access all services and information from those who have already experienced the disease. They also provide important therapeutic links.
Until relatively recently, the knowledge and perspectives of people living with mental health conditions have been largely ignored or ignored.
The rise of the mental health consumer movement over the past two decades, along with the rise of a “lived experience” workforce, has given us an opportunity to rectify this problem.
What is “lived experience”?
Although the term “lived experience” is not without its criticisms, it is typically used in the mental health field to recognize the direct experience of people with lived experiences of mental illness and/or recovery. . This is sometimes referred to as the consumer perspective.
Three years ago, the six-volume final report of the Royal Commission into Victoria’s mental health system was tabled in a special chamber of the Victorian Parliament.
Volume 3, Promoting Inclusion and Addressing Inequalities, contains a vision for future mental health and welfare systems, stating that “people with lived experiences of mental illness and mental distress You will hold substantive leadership positions and collaborate with others to provide leadership, influence change, and balance power. ”
Recommendation 29 calls for new non-governmental organizations led by people with lived experience to provide accredited training and resources. Develop and provide mental health and welfare services. and foster networks of lived experience and collaboration across the organization.
In total, the Royal Commission made 74 recommendations, many of which are currently being implemented, but the European Commission said that “the experiences, preferences and expertise of people who have lived experience of mental illness and psychological distress must be reflected.” Recommendation 29 has not yet been funded. Essential to the implementation of all recommendations. ”
Reforming the mental health system is complex and the Royal Commission set out a 10-year timetable for implementing all of its recommendations.
There are now calls for the Victorian Government to prioritize funding for new agencies to ensure this momentum of change continues.
Why is lived experience important?
The movement for people with lived experience to share information and support others in making decisions about their mental health will lead to the hiring of people with lived experience in services, academia and advocacy groups. It is a driving force.
This relationship is important.
In the words of British sociologist and social theorist Nicholas Rhodes, ‘the alternative knowledge that service users have developed about the social and interpersonal underpinnings of mental distress is important to understand when experiencing a serious crisis in their lives. It has the potential to truly meet the needs of people who are
A UK study found that when people with mental health conditions actively participated in mental health services, therapeutic relationships improved and a supportive culture was fostered.
The role of peer support was also associated with significantly shorter length of stay.
At the same time, mental health professionals are working with people with lived experience to “reframe the experience of mental illness, distress, and alienation by turning it into a human challenge rather than a technical one.” It emphasizes the importance of cooperation.
challenge dominant ideas
In the mental health sector, the involvement of experienced workers in the planning, delivery and evaluation of services is increasing, but there are challenges to fully and actively participating in rebuilding collaboration.
Mental health researchers say that these “participation efforts too often involve empty promises, inadequate funding or commitment, and superficial gestures (such as membership on advisory boards), which move the agenda They have no real power to set decisions, influence decisions, or change opinions.” Regarding structural changes. ”
Part of the reason is that collaboration with people with lived experience provides an opportunity to challenge dominant ideas of knowledge and explore new ways to improve mental health and well-being.
The mental health field also has an “epistemological hierarchy of knowledge producers,” with “university-trained researchers sitting at the top.”
Additionally, experienced workers may not be perceived as “experts” in the same way that psychiatrists, psychologists, and mental health nurses are.
In fact, there is also a view that “.[c]Consumer worker is an atypical occupation. Unlike workers who are hired for their IT skills but have a mental illness, consumer workers are hired because they have a diagnosis. ”
Some may think that workers with lived experience can only provide a personal perspective, rather than representing a ‘specialty’, which is generally considered to be an area of knowledge learned in higher education. not.
lived experience as discipline
This view that workers with lived experience are not experts is now being questioned.
In fact, some universities in the UK and Canada offer a subject called ‘mad studies’ as part of an emerging field of study.
There is also a focus on work that involves lived experience as a discipline in itself.
A study by Australian researchers presents a conceptual model of diverse consumer views that aims to support collaboration across the mental health system. The message is that “engaging with just one consumer or survivor as a “representative” is merely tokenistic and wasteful.”
To achieve real change, we need to build a critical mass of an immersive workforce.
share wisdom
There are several organizations that provide advocacy and support for people with mental health conditions.
For example, the Royal Commission noted that the role of the Mental Illness Awareness Council of Victoria was essential to “advancing the Commission’s reform agenda”.
There are also peer-run programs and initiatives, such as Safe Haven and Big Feels Club, that provide ways to draw on lived experiences and communicate with others.
But gaps remain. We need independent institutions led by people with lived experience who can accelerate system-wide reform to help those who need their shared wisdom most.
