The NT Lived Experience Network emerged during 2020.  Our network was conceptualised by local peer workers who recognised there was a need to develop an advocacy mechanism to represent our collective experiences and perspectives.  Our community was missing a ‘representative voice’ that could influence the decisions that deeply affect our experiences of health, the fulfilment of our rights and ultimately, our quality of life. 

At the time of writing (September 2023), the Northern Territory has the only state or territory government in Australia that doesn’t recognise and support a lived experience representative body.  

All other governments financially support and collaborate with the respective lived experience peak bodies [1].  And at present, the Australian Government is working toward establishing two new national lived experience peak bodies – one for ‘consumers’ and one for ‘carers’. 

Each of the lived experience peaks are funded in recognition that lived experience perspectives are central to the implementation of ongoing mental health reform.  We created the NT Lived Experience Network for the purpose of establishing an equivalent lived experience advocacy body in the NT. We have done this without funding, persevering despite adversarial responses to our advocacy by NT system decision makers. 

Our advocacy approach has always been inclusive.  We seek to represent the lived and living experiences of those accessing the NT mental health and related service systems.  This includes people who experience alcohol and drug related issues, suicidality and have had interactions with the justice system.  Our network includes people with experience caring for a loved one and we acknowledge that many people may be supporting a loved one while at the same time seeking support for themselves.  

We do not box people according to their experiences, because we understand how challenging it is to navigate a fragmented and ‘siloed’ health system.

Our network aligns itself with other NT lived experience collectives, many of which have emerged through the traumatic experience of losing a loved one to suicide. For most people attached to our network, their experience is ongoing. Our key point of difference from other lived experience collectives is that we seek to provide a strong advocacy voice for people who are service users, and their family and kin.  This includes people who have been unable to access support from services and those who no longer seek support because of poor experiences.  

Our network represents the diversity of our community and our experiences intersecting with the mental health, alcohol and drug treatment and related service systems, including the justice system.

Our advocacy movement is collective. For many working within the mental health system (in alignment with psychiatric models of care and management of risk), our movement is political and subversive.  Yet our movement is entirely based on human rights, empowerment and ultimately collective healing and recovery.  Our rights are especially important when we are at our most vulnerable, during periods of mental distress and crisis.  Yet these are the occasions when our dignity and human rights are most likely to be contravened.

Our advocacy movement emerged as the result of growth and empowerment within the local peer workforce during 2020, which in itself is unique.  Historically, around the world, the peer workforce emerged from lived experience advocacy.  In the NT, the reverse occurred.  The NT Lived Experience Network was conceptualised and strengthened through activities related to two concurrent peer work pilot projects – the Darwin Peer Led Education Pilot (by the NT Mental Health Coalition) and the Promoting Peer Work project (by the Mental Health Association of Central Australia).

Between May 2019 and November 2021, the Darwin Peer Led Education Pilot created opportunities for people in the Darwin region to learn evidence-based recovery strategies that empowered us to become the leaders in our own recovery. It was (and is) the antithesis of our experience in the clinical mental health system – where ‘treatment’ is done to us and our rights are frequently dismissed at the expense of our recovery and ultimately, our quality of life.

The Darwin Peer Led Education Pilot created opportunities for our community to connect, to learn about ‘recovery’ together, to share our hard-won wisdom, to have our experiences witnessed and validated, and to reflect the strengths we saw within each other. This eased our experiences of being marginalised, stigmatised, isolated and feeling helplessness. It gave us hope. [4][5]

We didn’t just share knowledge and experiences – we shared power, and because of this, became empowered as a community. 

We fostered an environment of individual and collective community growth, and these principles continue to guide our ways of working. We also recognised within our collective stories, shared experiences of disempowerment and violations to our individual and collective rights. Feeling stronger together, we became motivated and found shared purpose. We started the NT Lived Experience Network as an advocacy movement seeking to influence more than our individual experiences accessing the mental health system. We started it for the purpose of influencing ‘the system’ itself.

As the Darwin Peer Led Education Pilot progressed, some of our members had the opportunity to access peer work skills training, provided for the first time in the NT through the Promoting Peer Work project.  As well as learning essential professional skills, we suddenly became aware of just how disempowered by ‘the system’ we were as individuals, a collective community and as an emerging workforce.  Of most significance was our understanding of our rights, and how they had been devalued by ‘the system’ from which we were seeking care and support.

We learned there were plans, strategies and policies dating back to the early 1990s that

• Predicated our role in decisions relating to our treatment and care (even when we were involuntarily treated),
• Promoted support for lived experience advocacy movements to inform system transformation, and
• Prioritised the development of the peer work workforce as key enabler for the delivery of recovery-oriented services.

We discovered that the NT lived experience advocacy movement and utilisation of the peer workforce, was years – if not decades – behind other states and territories.  

Over time we realised that NT decision makers were aware of their responsibilities within the ongoing agenda to reform ‘the system’ that were only just learning about.  We recognised there was an opportunity for our community to engage in a more meaningful way with system decision makers.   We recognised more could be done to grow the capability of lived experience advocacy and the peer workforce in the NT.

We learned that in 1993, the First Mental Health Plan called for state and territory Health Ministers to establish Consumer Advisory Groups to ensure lived experience engagement occurred and continued to inform the highest level of system decision making [6].  That this was reflected by ministerial, departmental and organisational responsibilities set out in the Mental Health Statement of Rights and Responsibilities, first published in 1998, updated in 2012 and on both occasions signed by every state and territory Health Minister [7]. 

We discovered the Mental Health Statement of Rights and Responsibilities, underpins the National Mental Health Standards (2010) and the National Framework for Recovery Oriented Practice (2013) – both benchmarks (tied to funding) for the standard of mental health treatment, care and support [8][9]. That the National Mental Health Standards in particular, is supposed to be the measure against which mental health services meet national accreditation.  And that the Mental Health Statement of Rights and Responsibilities is even referenced in the forward of the NT’s antiquated Mental Health and Related Services Act (1998) [10]. 

Over time, we came to learn that there was a NT Consumer Advisory Group established to advise NT Health Ministers in alignment with the First Mental Health Plan.  What we haven’t learned, is why it dissipated sometime thereafter, which we believe occurred in the early 2000s. And how this could happen, when in most other states and territories, the Consumer Advisory Groups were transformed into lived experience peak bodies. 

Every policy and strategy document called for the engagement of people with lived experience for co-planning, co-design, co-delivery and co-evaluation of mental health and suicide prevention services. 

This message was reiterated strongly in subsequent National Mental Health and Suicide Prevention Plans – right up to the current Fifth Plan (2017)[11], which states in the forward: 

“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.”

Every document named Health Ministers, commissioning bodies and/or organisational leaders as responsible for engaging broadly and in a meaningful way with the lived experience community – and that the lived experience community had an equal right to contribute to these processes. 

It was very clear to us that this was not the experience of the lived experience community in the NT.  Because of the growing connectedness within our community, we knew that only a few select advocates were engaged to meet quality and safety requirements of NT Government mental health services.  More importantly that only two lived experience advocates, were engaged to inform the development of the NT Regional Plan, the first priority of the Fifth Plan, the national strategy which “demands that consumers and carers are central to the way in which services are planned, delivered and evaluated.”  

The perspectives of a handful advocates could not reflect the diverse experiences of our community.  It was not possible. There was no mechanism for them to be informed by the broader experiences and perspectives within the lived experience community. We had learned enough about lived experience engagement to see tokenism at every level of ‘the system’.

When the founding members of the NT Lived Experience Network started meeting, we set about growing a collective advocacy movement and with the support of allies, we also sought to create a local peer work training pathway.

We launched the NT Lived Experience Network in July 2020 by staging a public consultation to inform our submission to the Australian Government for the establishment of the Darwin Adult Mental Health Centre (now known as Darwin Head to Health). In the spirit of reciprocity, our consultation was designed to raise the awareness and knowledge of participants, as much as it was to gather their experiences and perspectives to inform our submission. Our objective (which we achieved) was for the mutual exchange of information to inform our submission, delivered in an environment that was both psychologically safe and empowering.

Our final report generated from the consultation, was nearly 60 pages long and included 20 pages of direct quotes and attributions by the 21 people who attended [12]. 

Our report demonstrated the harms people had been exposed to while seeking and accessing support from NT mental health system. It also defined what people needed for the new service to be safe and effective.

With encouragement from our allies, we shared our report with the NT Health, Mental Health and Alcohol and Other Drugs Branch. In the response from the Branch, we were admonished for our efforts and told there was no need or support for the establishment of a NT lived experience advocacy body. 

Seeking to maintain continued involvement in the establishment of this important service, we attended the information session as the new service went to tender through the NT Primary Health Network (NTPHN). During the session, we were dismayed to learn that despite our singular efforts to inform the Australian Government consultation, our network had not been invited to participate in the co-design event intended to engage people with lived experience to inform the new centre’s establishment. When we challenged this, our network was invited but individuals among our founding members were specifically excluded from attending. 

Around the same time, we sought to meet with the then NT Health Minister. Our network representatives were told by the Minister that the NT Government would not engage with us because they had sufficient engagement already with people with lived experience. Sadly, we were then unaware of our right to meet with the Minister, as defined by the Mental Health Statement of Rights and Responsibilities (2012). It was another blow.

What ensued was a period where stakeholders sought to erode and invalidate our network. Some stakeholders sought to selectively harvest advocates from within our network to meet their own lived experience agendas. Repeated attempts were made to invalidate the purpose of our network while at the same time leveraging the capability within the network of people we were building. These actions created significant psychological harm for many of our advocates, both individually and collectively.

We persevered through this highly challenging period at the end of 2020. While painful to navigate, these experiences were critical to strengthening our resilience and commitment to establishing a NT lived experience advocacy body. And despite the way our movement was treated by stakeholders, we learned that our consultation report for the Adult Mental Health Centre was utilised heavily by service providers who tendered for the service. Further, that it has been used since by NT Health to inform capital improvements to inpatient facilities.

Our consultation and report for the Darwin Adult Mental Health Centre demonstrated that we had the ability to do lived experience engagement and capacity building, safely and in a highly effective way. 

During 2021, we were engaged by Mental Health Victoria, for a small fee to run consultations in Darwin with ‘consumers’ and ‘carers’ to inform a workforce training package for NDIS service providers. We were also engaged for a small fee by Neami National to run a second consultation to inform the establishment of the Darwin Adult Mental Health Centre (which they won at tender).

The Review of the NT Mental Health and Related Services Act (1998) during 2021, was another important opportunity for us to contribute our community’s experiences and perspectives to inform our treatment and care. In May 2021, we ran a consultation in relation to the review of the Act. We used the consultation to inform the creation of an online survey which we promoted widely across the NT using email and social media.

Through both mechanisms we sought to understand how people’s rights were upheld by NT Government mental health services in alignment with the United Nations Conventions of the Rights with Persons with Disability (CRPD) [13].  We used the survey to state our position in relation to changes in the Act and sought endorsement from a broader community of Territorians with lived experience.  We collected the experiences of Territorians through both mechanisms to demonstrate how the system needed to improve and to justify our proposed changes to the Act.

As volunteers worked around professional and family obligations, we had to take personal leave and draw heavily on personal time to create our submission.  We also used our personal finances to provide catering during the consultation and promote the survey on social media.  

Our survey yielded over 100 responses within one week.  It confirmed that our position was supported by the Territorians who completed the survey. 

Our submission for the review of the Act was over 120 pages long (including survey data) and included approximately 17000 words of direct comments by people with lived experience [14].  It demonstrated that overwhelmingly people felt their individual rights were not upheld by NT Government mental health services in alignment with the CRPD.  Foremost among their experiences were

1. The right to access mental health treatment when needed (was not upheld)
2. The right to physical and mental safety (was not upheld)
3. The right to have access to health care (was not upheld)
4. The right for others to respect my privacy (was not upheld)
5. The right to freedom and safety (was not upheld)
6. The right to not experience abuse, violence or be taken advantage of (was not upheld)
7. The right to be treated equally before the law without discrimination (was not upheld)

We used our submission to advocate strongly for the new Act to include designated lived experience roles within governance structures and the mental health workforce, consistent with modern standards for mental health treatment and care. We reiterated our position to the draft consultation report by the NT Government in relation to the review of the Act.

At the end of 2022 we promoted our online survey again, this time using it to inform a submission to the Royal Commission into the Violence, Abuse and Neglect of People with Disability.