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Importance of Lived Experience

Meaningful engagement of people with lived experience of suicide, mental illness and related issues is essential to achieving better mental health and wellbeing outcomes for all Australians.

People with lived experience, hold vital knowledge about what is needed from the system, both for individual care and at broader levels.

Front page of the Fifth National Mental Health and Suicide Prevention Plan

There is robust evidence to support the meaningful engagement with people with lived experience to inform the way mental health services are planned, designed, delivered and evaluated.  

This is reflected by the 32 detailed actions contained in the Fifth National Mental Health and Suicide Prevention Plan, which states

“For the first time this plan commits all governments to work together to achieve integration in planning and service delivery at a regional level. Importantly it demands that consumers and carers are central to the way in which services are planned, delivered and evaluated.”

Front Cover of report by National Mental Health Commission titled

The National Mental Health Commission provides independent evidence and advice to the Australian Government and the community, as well as monitors the implementation of the Fifth Plan.   The Commission advises that

“Engaging stakeholders and facilitating meaningful participation is essential to achieving transformational change. Diverse and genuine engagement with people with living experience, their families and other support people adds value to decision‐making by providing direct knowledge about the actual needs of the community, which results in better targeted and more responsive services and initiatives.”

not part of problem

The Indigenous Lived Experience Project Report produced by a joint project between the Centre of Best Practice in Aboriginal and Torres Strait Islander Suicide Prevention and the Black Dog Institute identified

The importance of local solutions, including capacity building within communities and organisations, being culturally informed and guided by Aboriginal and Torres Strait Islander peoples with lived experience.

Clearly, there is strong recognition and commitment from all governments to ensure that people with lived experience are central to the way in which services are planned, delivered, and evaluated. 

Indeed, the underlying philosophy is simple and sensible:

“Create a service that the community finds useful and the community will use the service.  But if you don’t ask what’s useful – you won’t know.”

History of Lived Experience in Australia

In other states and territories, mental health funding bodies have a history of supporting people with lived experience to develop and maintain networks by financing carer and consumer peak bodies, and/or integrated lived experience peak bodies.  

The peak bodies use their lived experience networks to operate in partnership with governments and funding bodies to inform policy development and how services are planned, developed, delivered, and evaluated. 

There is at least one peak body representing the interests of mental health carers in every state and territory.  

Except for the Northern Territory, all states and territories are supporting and/or have an extensive history of supporting the interests of mental health consumers through peak bodies including:

Lived Experience in the NT

The Northern Territory is the only state or territory that has no jurisdictional peak body representing the interests of mental health consumers, or history of there ever being a network.

The Northern Territory does have related networks and peak bodies, and it is important to understand their function and how they differ from the NT Lived Experience Network. 

The existing peak bodies and networks in the NT include:

  • The NT Mental Health Coalition (NTMHC) as the peak body for community managed mental health organisations in the NT.
  • National Disability Services NT (NDS NT) as the peak body for disability service providers in the NT.
  • The Association of Alcohol and Other Drug Agencies NT (AADNT) as the peak body for alcohol and other drug service providers in the NT.
  • The Aboriginal Medical Services Alliance Northern Territory (AMSANT) as the peak body for Aboriginal community-controlled health services (ACCHS) in the NT.
  • Carers NT, which is funded to provide carer respite and support to people providing unpaid care and support to family members (or friends) affected by disability, chronic illness, mental illness or who are frail aged. Carers NT are part of the National Network of Carers Associations and therefore represent the voice of NT carers.
  • Integrated Disability Action Inc (IdA) which is a support network providing individual and systems level advocacy for people living with disabilities. IdA is the peak consumer organisation for people with disabilities in the NT.  
  • Local community-based suicide prevention networks across the NT that have been established by people bereaved and affected by suicide.

Historically, a small number of individual lived experience advocates in the NT have strived (without the support of a formal network) to use their voice and experience to effect change and improvement within the NT mental health and suicide prevention system. 

However, without the support of a larger network, their individual contributions have been potentially undervalued and they have been vulnerable to the impact of sharing their personal experience in a forum that might not be safe to receive it, or value the contribution of lived experience despite the overwhelming evidence for its inclusion. 

The Northern Territory Lived Experience Network is a volunteer driven initiative instigated by local people.  Network volunteers have sought to make meaning and create purpose stemming from their individual experiences.  Volunteers and members alike share a desire to use their knowledge and experience to ‘make the system better’.  

The founding principals of the Northern Territory Lived Experience Network are:

“There should be nothing that happens about us, without us.”

     And

“When we are alone our voices are lost.  When we are together our voices are strong.”

The principals recognise the imperitive to engage people with lived experience to improve the mental health and suicide prevention services system, and advantages for people with lived experience to work as a collective.

The Northern Territory Lived Experience Network

The vision of the Northern Territory Lived Experience Network is to provide a collective and independent voice for people with lived experience of issues related to mental illness and suicide in the Northern Territory.

The Network endevours to provide members with:

  1. Opportunities to use their lived experience to inform improvements to the NT mental health and suicide prevention system.
  2. Information to navigate the NT mental health and suicide prevention system.
  3. Opportunities to build skills to support mental health and suicide prevention in the NT.

Formed in June 2020, the NT Lived Experience Network is seeking to grow its membership and working group of volunteers who are able to share their skills and time to help meet its objectives.

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