“LIVED EXPERIENCE OF MENTAL ILLNESS”

“Your mental health is just as important as your physical health.” Anonymous

For the purpose of this paper, ‘lived experience participation’ refers to the many ways people with a personal experience of mental illness, service use and recovery are participating in the design and delivery of mental health services.

Participation may occur in a broad range of ways from board and advisory group membership, systemic advocacy positions, education and one-on-one support roles. Participation includes any role, paid or voluntary that specifically requires a perspective informed by a personal experience of mental illness and healing, regardless of whether symptoms do or do not continue.

Australian mental health policy has promoted lived experience participation since 1992[2]. In the following decades, governments have insisted on more measurable participation by people with a lived experience in service delivery and planning, including an expansion of paid lived experience roles.

The National Standards for Mental Health Services provide clear directions to actively engage people with a lived experience in participatory roles. Similarly, the release of the next version of the Safety and Quality standard 2 ‘Partnering with consumers’ is anticipated to place increased emphasis on the need for meaningful collaboration with people who have a lived experience, further supporting a shift towards all health organisations incorporating lived experience perspectives in tangible ways.

Lived experience knowledge is broader than an experience of illness and encompasses understanding of marginalisation, oppression and discrimination. Underpinning lived experience perspectives include shared understanding of loss or changes to social status/inclusion; relationships; employment and concepts of self as a result of diagnosis and service use. Significantly, people with their own lived experience have also had periods of healing and wellness, regardless of whether they re-experience challenging times, and can provide practical advice on strategies for recovery.

Lived experience roles that embed the perspective of people with a lived experience in service delivery have been shown to improve outcomes for people using services in ways that can be measured from both clinical and recovery perspectives . An emerging evidence base indicates support provided by people with a lived experience can be as effective in terms of symptom reduction and service satisfaction as care provided by mental health professionals . Further, growing research suggests lived experience provides some benefits not found within traditional services .

People with their own lived experience do not have the same power imbalances commonly found in service provider/service user relationships, and can actively challenge existing power dynamics to promote the development of more equitable, collaborative therapeutic relationships. People with a personal lived experience can empathise and advocate on behalf of those currently unable to do so. Lived experience roles have also been found to reduce coercion within services and increase the human rights of consumers.

Research indicates lived experience provided services, particularly peer roles, contribute to an improved sense of hope, empowerment and social inclusion for those accessing services . Social inclusion and connectedness was found to include improved interpersonal relationships and contribute to a sense of positive culture that fostered feelings of belonging and decreased social isolation. Additionally, lived experience involvement increased social confidence and boosted self-esteem in obtaining employment. Simply meeting someone who has overcome similar experiences can provide a living example of hope to those currently facing challenges [11]. Lived experience roles not only provide hope, they understand its absolute importance. In the immortal words of lived experience pioneer Pat Deegan:

For those of us who have been diagnosed with mental illness and who have lived in the sometimes desolate wastelands of mental health programs and institutions, hope is not just a nice sounding euphemism. It is a matter of life and death [12].

In recent years lived experience roles aimed at supporting adoption of recovery oriented practice in mental health have increased. The validity of lived experience leadership in recovery education and implementation is supported by both research and industry trends, demonstrated by the appointment of lived experience Deputy Mental Health Commissioners in NSW and nationally, as well as executive level appointments to support recovery in a number of non-government and Queensland Health mental health services in Queensland.

Although significant development has occurred, currently Australia has a less developed peer workforce than some countries. In America, certified peer specialists are now available in selected states as a government subsidised service through Medicaid, a means-tested health program providing affordable health care for low income families.

Peer work in America is increasingly seen as an integral part of moving toward a recovery oriented system. The following quote demonstrates perceived value and comes from the executive director of the American National Association of State Mental Health Program Directors, Robert Glover:

Consumers and peers are invaluable to the future public mental health system. Not only do they have a role to play, but they should be at the table in all aspects of our system .

If Australia were to follow America’s lead, the ability for peers in Australia to become Medicare providers could create great opportunity for community based lived experience support to become more available. The Better Access program in Australia already facilitates access to other types of mental health care through Medicare.

The recent signing of the NDIS Bilateral Agreement for Queensland creates new potential for the uptake and expansion of peer roles. It is anticipated people with a mental illness who are eligible for the NDIS will be able to access peer support as part of an individual package, as long as they are aware that peer support is an option. The Mental Health Council of Australia has pledged to assist capacity building of the peer support workforce to assist access for NDIS participants. The NDIS website identifies the need to create additional support items to include mental health peer workers as a specific support for mental health participants, results of which are presently outstanding [17]

Lived experience or ‘consumer’ representation on forums, boards and advisory councils at local, state and national levels is common within the mental health sector. Lived experience representatives are often voting or deciding members of committees, forums or boards of government, non-government, industry or professional organisations. Lived experience representation aims to ensure the perspectives, priorities, interests and concerns of people accessing services are presented and protected. Representative roles ensure accountability and typically report back to the group they represent.

Many studies have reported the important role of people with a lived experience in challenging stigma/discrimination . The act of being ‘out and proud’ has been found to challenge the notion that there is something fundamentally ‘wrong with’ or ‘different’ about people facing mental health issues. The visibility of people with a lived experience also challenges the code of silence that typically surrounds mental health issues and lets others facing mental health issues know they are not alone.

Because of discriminatory attitudes still attached to mental health issues, many people do not talk to their usual support networks and delay seeking professional help. This leads to isolation and mental health issues becoming significantly worse by the time any assistance is sought [22]. Wide scale use of people with a lived experience being ‘out and proud’ could contribute to a dramatic change in societal attitudes towards mental health issues, potentially leading to less isolation, lower suicide rates and lower incidence of severe or persistent mental illness.

The ‘Coming Out Proud’ program supports people to make informed decisions about their readiness to come out with mental health challenges. This program is based on decades of research, facilitated by people with a lived experience, and provides a whole-of-community focus by potentially empowering many people within a range of communities to have the courage to speak about their experiences .

There is evidence to indicate the value in exploring lived experience roles beyond mental health settings, to consider education and liaison roles within emergency services, housing, employment and primary and secondary schooling. In one of the more innovative examples, people with a lived experience were employed to assist people with mental health challenges to re-enter the workforce. Within this project, people already working in peer roles were taught the core competencies of a supported employment model.

Despite ongoing training, the peers had no specialised education or background in the area of employment support. The peers were also performing in their substantive roles whilst fulfilling the role of employment specialist, creating a very high workload. Despite these barriers, research found the peers performed at average or above average levels, which was considered encouraging. The findings also indicated participants saw the peers as role models and this helping participants over- come self-stigma, consequently improving their confidence in finding and retaining employment.

It is possible that wide scale recovery education led by people with a lived experience could also empower friends, families and communities to better understand and support people with mental health challenges. Better understanding and support within communities, particularly around concepts of hope and belief, could also contribute to more people receiving support earlier, eventually taking some of the onus off service providers and ultimately reducing the incidence of acute mental illness.