Lauren Keys is a leader and advocate of the Lived Experience and Peer Support movements in the NT, working to ensure that people with lived experience of mental health and related challenges are involved in designing and delivering mental health services and supports – using the proven recovery and peer support models which transformed her life.
Despite growing up in Sydney with all of the advantages and resources of a middle-class home, Lauren’s experiences with her complex mental health issues became a debilitating struggle with no clear or successful path to recovery. From her earliest memory, Lauren searched for solutions, accessing an array of therapies, supports, programs, resources and self-education, but none provided her with the means she needed to get well. Lauren moved from Sydney to Darwin in 2013 and some years later when working in the mental health sector, her condition spiralled and she became so unwell that she was forced to leave her job, leaving her feeling, isolated, disillusioned, and lonely.
In 2019 Lauren by chance saw a flyer for a Peer Led Education Pilot Program, and finally discovered the help and recovery she had been searching for, through a peer support recovery group.
“Participating in a peer support program made me feel so empowered in doing recovery for myself and I discovered a whole new world where you could connect with others who were also feeling desperately isolated and powerless,” Lauren said.
Lauren explains it was through discussions and activities where participants could reflect on their experiences and their goals in life that they could begin to define themselves outside of their mental illness.
“That was transformative – we discovered growth, healing, empowerment, not through other people, but by discovering our own agency and our own power”.
It was this sense of empowerment and liberation along with the frustration that this type of program was not currently available in the NT, that fueled Lauren’s future work in the Lived Experience and Peer Support movement in the NT – work which she continues today.
Why is a lived experience and peer support approach so important?
A key factor in lived experience and peer supported recovery, Lauren explains, is that it is trauma-responsive and personal and not just about clinical and medical recovery. Focussing on strengths and looking at what else is possible is fundamental to this model. This is particularly important for those with lived experience whose role in the world, conceptions of themselves and relationships with other people have been shattered.
“We come to not know who we are except for our illness. And so peer support and lived experience really is about looking back into your identity and touching in with the things that are important to you – what does a quality of life mean to you? What are the skills and strengths that you gain through your experience? What is the wisdom that you have for yourself and also that you could share with others?”
While Lauren asserts that medication and therapy had a role to play, there was a strong underpinning message of being broken and needing to be fixed that pathologised her rather than fully connecting with and understanding her experience. The mental health system’s reliance on the prescription of medication and psychological therapies – by people with power over patients – lacked the more holistic, person-centred approach that she later found in the lived experience community.
“How can someone who hasn’t experienced (mental illness) ultimately know what it’s like and what is helpful – people in positions of power who haven’t experienced anything like it, coming up with the solutions for us? And being excluded – we are the ones best placed to know what works, and we are absolutely excluded from policies, from strategies, from program design and delivery when actually, we are the experts.”
Furthermore, Lauren explains that interactions with the mental health system often further traumatize people who are already struggling. Her own experiences eventually led her to avoid seeking help at all costs, doing everything possible to avoid going to the hospital, even though it became dangerous and risky for her not to.
“I couldn’t cope with anymore trauma,” Lauren states. “Most services are not trauma responsive. In the NT, services have historically been based in the medical model, and we know that it’s not working. The mental health system needs to get better at empowering people to lead their own recovery. Fortunately, the tides are changing, and the evidence tells us about the value of peer support and the impacts of services and programs being led by people with lived experience. It tells us that it works.”
In contrast to the medical model, the lived experience-led environment offered relationships based on breaking down those power structures and sitting with another person with compassion and unconditional positive regard, Lauren explains.
“It’s really intentional, mindful and inclusive. It’s about embracing different world views – about that thing that you all share, and whilst it’s different there’s also so many similarities. We have unique expertise to support each other’s healing and growth.”
Lauren states, if the conditions and experiences you come from are 1000 steps behind where most people start, because you’ve had sexual abuse, domestic violence, you might be of a First Nations’ background where you’re dealing with racism, oppression and poverty, then society doesn’t often recognize the many steps you need to make just to get to 0.
Building a Lived Experience community in the Territory
After completing the program, Lauren remained connected to a group of the participants who then formed the Northern Territory Lived Experience Network. This in of itself was empowering and restoring, she explains, as everyone got to use their strengths to build and become connected to a community, and to prove to themselves what they could do, given that opportunity.
“It’s gone from strength to strength with the advocacy of our community and then forming relationships and that network of people with lived experience coming out of the woodwork, wanting to get involved, volunteering their time, just getting bigger and bigger. Think about suicide – the biggest psychological indicator or risk is hopelessness and disconnection, or loss of relationships. Well, the lived experience community connects people, peer support being between people, forges relationships. I don’t know what is more powerful than that.”
While there was a movement and networks in Sydney, Lauren explains that in both Sydney and Darwin health professionals and support services never talked about any of these models, supports, resources or networks that she could tap into. Her treatment was primarily focussed on doing therapy and taking medication, and it wasn’t until living in the Territory for 6 years that she had her first experience of this kind of care and support.
The political landscape in the NT
The NT is the only state or territory without a lived experience peak body, Lauren points out. The implications are significant as that means that the NT lived experience community doesn’t have representation or the advocacy platform for systems change at a national or state level. “People make decisions about us and without us – because we don’t get a seat at the table.”
With the recent Federal Department of Health announcement of funding to establish a National Lived Experience peak body and National Carer and Kin peak body – bringing together all of the state and territory lived experience peaks – there is a risk that the unique interests and experiences of people with lived experience in the NT will continue to go unheard. Lauren states that without a representative mechanism for people with lived experience in the Territory – who are disproportionally impacted by mental health, suicide and social and emotional wellbeing challenges – the NT will not have equity of opportunity to influence federal government policy and decisions.
“It is a complex system and context in the NT. We have diverse Countries, cultures and interests here and this means that representation can be difficult. Lived experiences are different here. But this shouldn’t result in inaction – it means that we need to think and act differently and work together to ensure that we have access and opportunity. After all international, federal and state legislation, policy and guidelines give us this right.”
Lived experience leadership is about people with lived experience being involved in a meaningful way at legislation and policy levels, within program design, program delivery and evaluation, Lauren explains. By having the involvement and skillset of people with lived experience it becomes co-production, which means that programs and services that are developed are in line with the needs and preferences of the people accessing them.
On the other side there’s peer support, which is part of the lived experience workforce, which has also happened over time. There has been a growing recognition that peer support works in supporting the healing and recovery of other people, as well as their growth and transformation and engagement in community, in social activities, and in employment, Lauren explains. “Over the last 20 years, the professionalisation of the peer workforce has happened progressively over different states and territories,” Lauren says.
Where to go from here?
Currently the focus is on creating a community and lived experience collaborative – a representative group as a starting point, Lauren explains.
“The lived experience movement is about advocacy, health and social justice and change. We have a right to have a seat at every table. To be involved in decision making about anything that impacts us.”
Lauren is not actively involved with the NT Lived Experience Network currently – due to the work that she is involved in. However Lauren states that she is aware that the network is continuing to grow and is designing, delivering and evaluating locally co-created peer support programs with people with lived experience – with extremely positive participant feedback.
Today, people are seeing the transformations of those who have been involved in the movement and the programs. However, the biggest barrier is that it can’t be done without people with the specific lived experience knowledge. “The sector is saying great we want to do this but how?”
“I’ve been doing lots of education and building that lived experience literacy so that awareness about it, and what the journey could look like based on our learnings from the Territory and elsewhere, can grow. It starts with valuing lived experience, recognising lived expertise and genuinely involving people with lived experience from start to finish.”
For more information about the NT Lived Experience Network visit their website at www.livedexperiencent.net.
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