Lived experience and peer workers: transforming mental health services

Amy Coopes writes:

Employing peer workers in mental health is about much more than ensuring their voices are heard – it is a political act that re-frames the balance of power and is part of a movement towards greater equity, rights and justice.

This was a standout message from the 27^th annual TheMHS conference in Sydney, where the importance of lived experience in mental health service provision was a prominent theme.

Peer support workers, educators and those sharing their lived experience in service provision were at the centre of what keynote speaker Professor Mike Slade described as a paradigm shift in mental health, and several sessions profiled projects and perspectives from practice.

Kate Higgins, from Wellways, said a 133-strong peer workforce was at the centre of their mission – a right to belonging, connection, recognition and upholding of human rights – as well as being a powerful change agent with the potential to transform the lives of individuals, families, policy and practice and society at large.

Higgins described peer work as part of a broader movement to equality and rights, challenging the dominant paradigm and reclaiming power for those at the centre of the system.

Beyond the comfort zone

If organisations did not acknowledge that power differences existed in mental health, Higgins said it was easy for them to fall into the trap of co-opting recovery, and she called for a fundamental interrogation of the dominant model of care.

Wellways colleague Ben Matthews, who heads up the peer workforce program, said peer workers were “there to drive culture and reform”.

“We don’t learn in our comfortable spaces, we learn when we go out of our comfort zone,” he said.

The potential for peer work to challenge the often-problematic status quo was emphasised by Louisa Dent Pearce, who said power was the critical issue in successful integration into service provision – “how much is taken, given, and how this is managed.”

She mapped the rising prominence of peer work against broader shifts in the mental health space:

Seize the power

Dent Pearce, something of a peer work veteran, shared a journey from ‘invisibility’ to being essential in her workplace, something she said had required overcoming insecurity and self-doubt to actually seize the power offered to her and recognise the importance of her voice.

Letting go of the indoctrination to blindly respect hierarchy, as well as the anger and resentment that came with feeling powerless, had been important elements in her growth as a peer worker.

“If I expect a flattened hierarchy where my voice is equal, I have to feed that back to my colleagues,” said Dent Pearce, emphasising the need for diplomacy, kindness, patience, and the sense of working “with, not against”.

She said it was also vital to challenge perceptions that peer work was not something worthy of remuneration, or was something that people were happy to do for free, as well as the notion held by some clinicians that sharing lived experience was damaging.

For those planning to implement a peer work program, she urged thorough planning and preparation, and a transparent and robust structure and training for staff – both peer and professional.

Elsie Cairns, a peer worker from the Margaret Tobin Centre in SA, echoed these thoughts on the importance of peer workers in an organisation and the unique qualities they could bring:

Storytelling matters

Several organisations presented their peer work programs, including Alison Bell from One Door Mental Health, where 20 consumers and 10 carers were employed as peer educators and trained to tell their stories.

“I really believe storytelling and being heard is such a vital part of recovery,” said Bell.

“Listening to people’s stories is a different way of learning, and it does ultimately improve service outcomes and delivery.”

Peer programs were part of what she called “practice-based evidence rather than evidence-based practice” in mental health.

Focus on discharge

Three hospital discharge initiatives using a peer workforce were profiled, demonstrating positive responses.

One was a Hospital to Home pilot across three PHNs in NSW involving 10 peer workers, with support including re-connection of utilities and re-stocking of groceries after a long inpatient stay, help navigating Centrelink and ongoing social and emotional mentoring.

Peer workers would come onto the wards about two weeks before discharge to be involved in planning, and project coordinator Lesley Morrison from One Door said responses had been positive:

For the peer workers, some of the challenges identified had included maintaining their boundaries, knowing what to share and when, and using personal experiences constructively.

They were also sometimes required to return to places where they themselves had been inpatients, and to work with clinicians who had previously been their treating doctor.

Participatory approaches

Aimee Sinclair from Consumers of Mental Health WA (CoMHWA) presented a similar program, Peer2Peer, which offered post-discharge support for up to weeks, delivered and evaluated by a lived experience workforce.

Peer2Peer was peer-driven and based on a participatory framework:

Sinclair said the findings so far had demonstrated a profound need for this kind of work, with structural issues evident to peers that were invisible through a biomedical lens.

She also cautioned against “ghettoization” of the peer workforce, saying that proper remuneration, training and upskilling were a must.

The conference was also told of an extended post-discharge support program in Melbourne using 25 peer workers – two-thirds consumers and one-third carers in acknowledgement that family conflict was a major risk factor in readmission.

Michelle Swann from Melbourne’s NorthWestern Mental Health said early results of the program included a decrease in re-admissions and reduced aggression in the inpatient setting, as well as increased clinician understanding of the role of peer work.

Sam Stott, from the South Eastern Sydney Recovery College, detailed the four “wheelie bins” of doing a lived experience workforce wrong.

In no particular order, she said these were:

• The Wheelie Bin of Tokenism
• The Wheelie Bin of Inspiration Porn
• The Wheelie Bin of Purposeless Storytelling
• The Wheelie Bin of Intrusive Questions.

Intentional peer support

Lisa Archibald, from New Zealand’s Te Ara Korowai peer support program, spoke powerfully about intentional peer support – a framework she said was more than just training or a resource, but about social change and meaningful dialogue.

“Instead of illness and containment, intentional peer support is about rights, consciousness-raising and emphasising experience, not symptoms,” said Archibald.

“It doesn’t see people through a mental illness lens but asks people what they know.”

The principles of intentional peer support were moving from helping to learning, and doing ‘with’ instead of doing ‘to’; restoring reciprocity and rejecting the idea that one person had to change by replacing an encounter of individuals with a relationship; and allowing hope and possibility to take the place of fear.

Fear had been the basis of the traditional biomedical model of mental health and rested on what she said were the 4 Ps: predicting, prescriptive, prying and power imbalances.

Archibald outlined the four tasks of intentional peer support:

• Connection – being present, authentic, attentive
• Worldview – asking how do I know what I know
• Mutuality – both giving and receiving
• Moving towards – not getting stuck in the problem and moving ahead.

Intentional peer support understood and valued that there were two stories in mental health – the diagnostic story and the lived, Archibald said.

Collective narratives

Using a shared language was so important on the road to recovery, with an incompatibility sometimes seen between the personal and the academic, said Helena Roennfeldt from Griffith University and Marianne Wyder from A Place To Belong.

The pair presented a collective narrative project called Our Sunshine Place, a first person account of experiences in the mental health system drawn from the stories of more than a dozen women.

It’s powerful and personal, and worth reading in full, speaking to fear and alienation, a loss of identity and isolation from the world.

It ends thus:

I don’t talk about weird nightmares I’ve been having and how the world still feels weird and terrifying. If I would tell him that he may keep me here longer.

I just want to go home where I can start my healing.

Wrapping up

This is the final Croakey Conference New Report from #TheMHS2017, which brought together hundreds of consumers, carers, clinicians and others in contact with or working in the mental health system. Stay tuned though for an e-publication compiling all of our coverage – the stories, photos and tweets.

Warm thanks to all who helped to share the news through Twitter and other social media.

The Symplur analytics show there were more than 32 million Twitter impressions and 693 Twitter participants using the conference hashtag.

You can read the full Twitter transcript here.

Bookmark this link to see all of our #TheMHS2017 coverage.