In 2005 Jolan Tobias joined five fellow members of Orygen Youth Health’s youth participation group, Platform, at the Senate Select Committee on Mental Health, where she shared her experience as young person recovering from serious mental illness and called for more youth-specific, early intervention services such as the Early Psychosis Prevention and Intervention Centre (EPPIC).
“We recommend that all young people who need a mental health service should be able to access services that are specifically for young people, no matter where they live,” Ms Tobias told the Senate Select Committee. “All mental health services should have group programs and do more than just prescribe medicine. Social, vocational and emotional goals are crucial to psychiatric recovery.”
It had been 13 years since EPPIC and the Early Psychosis Research Centre had opened their doors, helping thousands of young people like Jolan with psychotic disorders and building evidence for the effectiveness of early intervention and the EPPIC model.
The centres had pioneered a shift in the way psychosis was treated, moving away from a model of no hope to one of recovery, sparking interest from psychosis clinicians and researchers around the world, and spearheading an international early intervention movement.
However, with EPPIC at that time resourced to help just 250 young people each year, this success had only scratched the surface of a gaping and long overdue need in Australia.
Each year, thousands of young people with psychosis were still left to the mercy of hospital emergency departments that weren’t equipped to deal with them, an adult mental health system geared towards the chronically ill, and GPs and psychiatrists, many of whom continued to communicate a lack of hope.
For Professor Pat McGorry, Dr Jane Edwards and Kerryn Pennell, the need to roll out EPPIC beyond the confines of north-west Melbourne had become starkly apparent.
They spent more than two decades pushing for early psychosis reform and the scale-up of EPPIC, weathering peer criticism and political challenges to finally implement six Youth Early Psychosis Programs across Australia in 2016.
Known as hYEPPs, these programs are embedded in headspace centres and designed to provide youth-friendly, integrated services that reduce the duration of untreated psychosis and the impact on young people and their families.
Recovery and real-world services
For Ms. Tobias, EPPIC’s group programs were an important part of her recovery, giving her the tools that would enable her to return to a life that included confidence, self-determination, work and, most importantly, a supportive peer group.
“When I first started there (EPPIC), I could not even make my breakfast. I could not watch TV for two seconds. I was really unwell. The group programs put simple structure back into your life. They are little steps that you can build on and keep building on — for instance, ‘Okay, I’ll watch telly for a minute.’ I went to a group program today,“ she told the Senate Select Committee.
“There are six people there that I remain in contact with. We are really close; we are like family. We have seen each other at our extremes, and we support each other and look out for each other.”
Ms Tobias also pointed to the stark difference between how she was treated on her first admission to EPPIC, where she was “spoken to as a human”, and her traumatising first experience in a standard mental health service.
“My first admission to an adult mental health service was while I was still under Orygen’s care, but they had no beds. I wanted to go home, and the team were happy for me to go home, but unfortunately the emergency department decided that I was under their care then. They shackled my hands and feet. I got out of that and said, ‘Look, I want to go home. The team are saying I can go home, and my mum is at home.’,” Jolan said.
“They strapped me back down on the bed, put me in a full body harness and transported me to the adult mental health service that was going to babysit me until Orygen had a spare bed. They put me straight into a high-dependency ward and stuck a needle in my bum.”
The birth of a reformer
Professor McGorry says stories such as Ms Tobias’s are examples of the human rights and social justice issues that led him into psychiatry, and which galvanise him to push for mental health reform and the scale-up of EPPIC.
“The fundamental problem is that mental health is mainstreamed within the general health system, and that was seen to be the solution to stigma: get rid of the old mental hospitals and blend it with the acute hospitals and have people come through the emergency departments. But they are treated like second-class citizens in those places, because they're designed for car accidents and heart attacks, not for distressed people,” Professor McGorry says.
“It's always been a social justice issue for me, and I think many of the people who we've worked with have had that sort of mindset or a sense of common purpose. At Orygen, I've been fortunate to work with a band of like-minded people who are also warriors and totally committed to the reforms.”
Professor McGorry’s shift from clinician-researcher to reform warrior was also inspired by the difference that EPPIC was making in patients’ lives.
“There are people like Nick Meinhold, who would have just ended up in a very bad place, and you can see the way that they're able to recover and have a much better life,” he says.
Nick had begun a downward spiral into psychosis and mania shortly before he was involuntarily admitted to EPPIC in 2003. He spent four weeks as an inpatient and received 18 months of case management and psycho-social support as an outpatient.
“My time as an outpatient was a buffer that separated acute care and the challenge of finding my feet in everyday life,” Nick writes in Early Intervention in Psychiatry: EI of Nearly Everything for Better Mental Health. “People from the outpatient program acted as a vital lifeline in times of need and, for my family, feeling we were part of a community that was equipped to deal with the situation was invaluable.”
Mr Meinhold spent the next 10 years building on his time at EPPIC by exploring and integrating other physical and psychological tools to support his recovery.
He later completed a medical degree so he could become a psychiatrist himself and then moved into IT to build mental health technology solutions. He is currently contemplating a return to medicine.
“Those of us struck down by mental ill-health have an incredible amount of potential to share with the world,” Mr Meinhold says. “If we focus on giving people everything they need in the early stages of illness, we offer them the greatest chance of a life that benefits us all.”
Kicking off the reform journey
The journey from inspiration and innovation to real-world implementation has been a long and fraught one, Professor McGorry says.
“There are threats all the way along the line for successful scaling up of reform and there are lots of ways it can go wrong: there’s the idea, there's the evidence, there's the leadership and the workforce, and then there's the implementation by the health authorities and the governments. So it is inherently difficult and can be frustrating,” he says.
Professor McGorry and his colleagues also quickly learned that they needed to become involved in the political process if they wanted to effect change.
“What we learned was that knowing how to do the thing, publish it and communicate it is important, but you then have to become more politically active to actually get the change,” Professor McGorry says.
To start the reform ball rolling, Professor McGorry, Jane Edwards and Kerryn Pennell organised two national conferences in 1994 and 1995. These conferences came on the back of EPPIC’s launch in 1992, the VicHealth-funded research at the Early Psychosis Research Centre and growing interest from other psychosis clinicians and researchers.
“People came to visit us at EPPIC and they were also writing about this idea of early intervention, so that’s when we decided to try to scale up the idea,” says Professor McGorry who, together with Dr Edwards, Ms Pennell and others, travelled to many countries during the 1990s, worked with other psychosis centres and ran workshops.
In 1996 they followed up by convening the first international conference on early psychosis intervention in Melbourne, bringing together experts from across the world, as well as clinicians and researchers who were pushing for reform in their own Australian states and territories.
“These things started to put early intervention research front and centre, and to make the early intervention services a focus,” Professor McGorry says.
Long-haul limbo and political will
But the state governments didn’t engage with the call for change, and the federal government contributed only small amounts of money from 1996 to 1998 to create piecemeal versions of EPPIC.
Many countries, notably England, Denmark and Canada, successfully scaled up early intervention services for psychosis during the 2000s. However, more than 10 years would pass before the push for early psychosis reform would gain traction or attract political will in Australia.
During this time, the Senate Committee on Mental Health would come and go, along with two revisions of the National Mental Health Strategy. An international collaborative effort also continued to build the research for early psychosis intervention and headspace was established in Australia in 2006-2009, under Orygen’s leadership.
“It was ironic because, while there was evidence of huge unmet need for youth mental health care, we had no evidence yet for headspace being the answer, and we had heaps of evidence for early psychosis, but no one was interested,” Professor McGorry says.
In 2008, Professor McGorry and colleagues convened a national summit of Australian early psychosis leaders to advocate for a national implementation strategy.
Bill Shorten and Rob Knowles opened the summit, underlining the bipartisan approach to mental health reform. The early psychosis seed was re-planted but took a little longer to germinate.
In 2011 political will finally paved the way for a national roll out of EPPIC. The new Labor Health Minister Mark Butler allocated $222.4 million to develop 16 early psychosis services. It was part of a National Partnership Agreement that would see the states and territories co-invest and implement the centres.
“That was the first time really serious funding was allocated for a fully fledged EPPIC model. In fact, it was better than the original EPPIC model because it was informed by international progress over that previous 15-year period,” Professor McGorry says.
But after two years of Professor McGorry, Ms Pennell and Mr Butler travelling around the states, trying to get them to co-invest, the Australian Government decided to go it alone. The 16 sites were decreased to nine and the decision was made to embed the Youth Early Psychosis Program into headspace centres.
Political road blocks
By the end of 2014, most of the programs were being implemented and were starting to do well. And then Sussan Ley became Health Minister.
“That's when it really started to go pear-shaped,” Professor McGorry says. “At that point, a decision was made by senior bureaucrats and supported by the Minister to wind this program up and hand over the funds to be used in a diffuse and “flexible” manner by the new and untested Primary Health Networks on completely non-evidence-based programs. Naturally, that caused huge problems for the patients that were already being treated, created serious risks and widespread distress, including for the dedicated staff that were trying to make those programs work.
“It was a completely outrageous decision, which flew in the face of arguably the best-quality evidence ever assembled for any model of mental health care. We tried everything politically to get it reversed in the lead-up to the 2016 election, but even with a fair bit of support with the coalition, we couldn’t get it reversed.”
In a last-ditch effort to save the programs, Professor McGorry addressed the National Press Club, accompanied by a young person from the program. The following Sunday, the Sunday Telegraph hit Sydney streets with the headline, “Mal, Can We Talk? Funding cuts prompt fears of youth suicide rise”, blazoned across the front.
"Within hours of that article being released, the Prime Minister was on the phone to me saying, "What do we need to do to fix this?" And within two hours, they organised a personal meeting with Sussan Ley, her adviser, Kerryn Pennell, myself — with Treasurer Scott Morrison and Malcolm Turnbull joining on the phone,” Professor McGorry remembers.
Early intervention weathers the storms
The National Press Club address and the subsequent newspaper expose became the programs’ final saviour, although Professor McGorry says they continued to receive criticism from a small group of his academic psychiatrist peers.
“There has been a backlash from a small section of the mental health profession against the focus on early intervention in youth. We've had to contend with that for 20 years,” Professor McGorry says.
“You'd never see this in cancer or heart disease; you'd never see doctors and health professionals resenting the fact that we're trying to focus on early diagnosis, but there is a small group within psychiatry that has resented that.”
He says the evidence to support early psychosis intervention has only become stronger and the critics have faded away.
Earlier this year, a group of researchers from across the globe added their voices to the growing international community of clinicians and researchers highlighting the need for early intervention in psychosis.
They published a landmark study in the journal JAMA Psychiatry, which found people with early-phase psychosis had better outcomes when they used early intervention services instead of standard treatment approaches.
These outcomes included reduced treatment discontinuation, reduced symptoms, decreased mortality rates, increased ability to function psychologically and socially in a range of day-to-day activities, reduced hospitalisation risk, shorter hospital stays, improved involvement in school and work, and better quality of life.
On the strength of these findings, the meta-analysis of 10 international studies and 2176 patients called for the widespread implementation and funding of these services across the world.
Craig Hodges, Orygen’s Director of National Programs, is tasked with supporting the implementation and scale-up of hYEPPs in Australia, which are just starting to build momentum.
Craig’s clinical career spans emergency departments, the early years of EPPIC, the Centre for Adolescent Health, beyondblue and Headstrong in Ireland, and it gives him a particular appreciation for how far Orygen has come with the EPPIC model.
“I guess I've been in a bit of a privileged position because I've been able to see what's gone on. I've worked in Ireland, I've spent time in the UK and I've worked in America. And so you get to see how we do things here, and when you see it showcased internationally, we are streets ahead really,” Mr Hodges says.
“We created this space, so we are leading the world in a lot of this work.”