More than 25 years has passed since Sir Gustav Nossal, one of Australia’s most celebrated medical scientists, awarded a VicHealth research grant to Orygen’s Early Psychosis Prevention and Intervention Centre (EPPIC). But he says the experience of seeing EPPIC first-hand, and meeting the people behind it, has left an indelible memory.
“To this day, a quarter of a century later, that initial visit remains one of the most moving experiences of my life,” says Professor Nossal, who was chairman of the Victorian Health Promotion Foundation (VicHealth) at the time.
“What was extraordinary was not just the obvious excellence of Patrick McGorry and the other psychiatrists, but it was the total commitment of the nurses, the therapists, the orderlies, everyone. McGorry had obviously inspired the whole team to reach out to those young people and to do the very best that they possibly could do,” he says.
“And that was a very sobering experience and a very delightful experience, and it made it very easy to give the grant.”
In 1991, on the back of success with the in-patient recovery unit at Royal Park Hospital and the early development of the EPPIC model, Professor Patrick McGorry and Professor Henry Jackson applied to VicHealth for a grant to study early psychosis stages, impacts, therapeutic approaches and access to services.
The VicHealth board, which was looking to integrate research into its portfolio and focus on mental health, granted them $200,000 over four years.
Nossal says: “From the very beginning, chief executive Rhonda Galbally and I were absolutely at one on this — that mental health had to figure prominently in our work because it was a really neglected field, particularly in prevention, positive health promotion, early intervention. So you could really say the soil was readily tilled for Pat when he came along.”
A catalytic period
The grant helped establish the Early Psychosis Research Centre, which Australia’s first Human Rights Commissioner Brian Burdekin opened in 1992 and sat alongside EPPIC at Parkville.
“The combination of getting research cleared for funding and other new funding to establish EPPIC was very catalytic for the success of early intervention around the world,” Professor McGorry says.
For the duration of the VicHealth grant, the Early Psychosis Research Centre focused on four strands of research: the effect of cognitive behavioural therapies; the pre-psychotic stages of psychosis known as the prodromal phase; the needs of children with parents suffering from mental illness; and how people found their way into the existing services.
This research not only helped refine the EPPIC model, but it also helped catalyse major progress in the recognition, enhanced treatment and study of first episode psychosis.
Henry Jackson says their research was also a building block for the further research and evidence-building that would drive the call for early intervention in psychosis and for more services like EPPIC.
“I think the fact that we took this challenge on is important,” Professor Jackson says. “When you looked around the hospitals, they were populated with chronically ill schizophrenia patients who were heavily sedated with lots of side effects and little chance of rehabilitation. There were also locked wards, but Royal Park Hospital was by no means the worst — in fact it was one of the most enlightened!
“When I went to Singapore in the 2000s, 20 years after starting at Royal Park, Woodbridge Hospital had over 2,500 patients and all wards save one were locked — and that was the early psychosis ward that was inspired by EPPIC! There seemed a certain futility about dealing with these patients,” he says.
Learning to COPE
Professors Jackson and McGorry as well as Jane Edwards and Carol Hulbert aimed to change such futility into hope by developing psychological strategies such as Cognitively-Orientated Psychotherapy for Early Psychosis — or, fittingly, COPE.
“With COPE, there was the concept that people could actually have some control over their present and their futures,” Professor Jackson says.
He says psychotherapies were not generally offered to psychosis patients 25 years ago, because clinicians and researchers continued to view schizophrenia as nothing more than a brain disease that would inevitably become worse.
Moreover, there was little therapy or research that focused on young people and how they felt about themselves, their lives and their condition.
COPE aimed to shore up the young patients’ sense of identity in the face of debilitating schizophrenia stereotypes and to develop their ability to cope with their condition.
“The key task in adolescence is identity formation: having separate identity from your family, having an identity that you're a person who can master tasks, and so on,” Professor Jackson says.
“It’s a time when people are typically moving away from parents to peers, to higher levels of schooling education, to trades, and so forth. So the illness comes at a bad time and stereotyping themselves was a major issue to target.”
Future selves and functional recovery
To shore up young people’s sense of self, Professor Jackson and his study colleagues would encourage the young participants to focus on their ‘future possible selves’. This aimed to move away from schizophrenia’s brutal notion of a permanently disabled possible self with no hope for recovery.
“When we talk about possible selves, we're talking about ‘myself as a person who's interested in doing law’, ‘myself as a person who is a tennis player, etc rather than identifying with being a person who has got an inevitable chronic illness, which nothing can be done about it,” Professor Jackson says.
“We were getting them to think in terms of the most fundamental idea of all, which was this idea of hope.”
He says this focus on future selves has helped inform EPPIC’s functional recovery programs, as well as many of Orygen’s current programs, which provide social, educational and vocational support for young people to return to work, study and life.
COPE was also a harbinger for the shift in clinical approach to psychosis.
“There was this idea with schizophrenia, and psychosis generally, that by allowing them to talk about their symptoms, you were reinforcing them — which of course is not the zeitgeist at all now. It's completely the opposite,“ Jackson says.
The potential of prodrome
Meanwhile, the VicHealth-funded prodromal research was also busy upending the prevailing orthodoxy on psychosis, and was set to pioneer a whole new frontier of understanding, assessment and treatment of the condition.
In 1991 initial research by Professors Jackson and McGorry revealed flaws in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and in the psychosis research literature.
The DSM is a handbook that many health care professionals use to diagnose mental disorders. But Jackson and McGorry found its definition of early warning symptoms for first episode psychosis were based on the changes heralding relapses in chronically ill patients. It did not describe the emerging symptoms of someone who had not yet experienced psychosis.
This meant that the DSM model was ineffective at identifying the early symptoms that indicated young people at risk of developing psychosis, and therefore the potential window for intervention.
Professor Jackson says contemporary psychosis research literature also reflected the DSM approach, with young people falling through the gaps of research attention and the focus on the chronically ill reinforcing the deeply pessimistic attitude surrounding the condition.
“With the help of our research, there was a realisation that nearly all our knowledge was based on chronic samples of people. When you look at the literature, it was actually inundated and typified by studies of people with years and years of illness,” Jackson says.
“And so I think that led to an idea that these people were irredeemable. The idea that they might only have a single episode or a good functional life between episodes was disregarded,” he says.
Keeping PACE with needs
In 1993 Dr Alison Yung picked up the prodromal research baton and, together with Professor McGorry, led the VicHealth-funded research into unchartered prodromal territory.
As a junior doctor on a psychiatric ward placement, Yung had witnessed a middle-aged woman with schizophrenia pour a barrel of boiling oil over herself, burning one of her arms off and sustaining horrific burns all over her body.
“I just remember thinking, ‘How do you become that psychotic that you burn your own arm off,” says Professor Yung, who transferred into psychiatry after this experience.
“I have been interested in that area ever since. Knowing that people don't start off psychotic, how do they become that psychotic and can we stop that from happening?”
And now that Professors Jackson and McGorry had proven the DSM ineffective at identifying the prodromal phase, Dr Yung and Professor McGorry investigated whether it was possible to detect young people in this phase and predict their risk of psychosis.
In 1994 they set out to answer this question by establishing the Personal Assessment and Crisis Evaluation (PACE) clinic, which integrated both clinical care and research. Based at the Centre for Adolescent Health and later a local shopping mall, the venue was stigma-free, a key strategy to prevent harm arising from intervening at the earliest stage of a need for care.
“There was this sort of feeling that we were going into the unknown: we didn't know if it was going to work, and we were copping criticism from all different parts,” Professor Yung remembers.
For the first time ever, the clinic provided clinicians and researchers with access to a group of young people potentially at risk of becoming psychotic in the near future, enabling them to study the prodrome’s biological and psychological traits and assess the transition from prodrome to psychosis.
The advent of the EPPIC mobile assessment teams had made this possible by identifying young people who were experiencing subtle mental state changes that potentially indicated the prodromal phase.
Interviews and 12-month follow-ups with the young people provided a rich source of information not only on the symptoms but also on their lives. And once this was coupled with a systematic literature review, patterns started to emerge.
“We used this qualitative data, which gave us a very rich feel for all the different types of manifestations, so not just symptoms and signs but also their feelings about them, what they thought was going on and their families’ reaction to it,” Professor Yung says.
“With our research, we showed that it was possible to identify these young people at risk, and that the symptoms and signs we thought were going to predict psychosis did indeed produce first episode psychosis.”
The research led them to develop an assessment tool called Comprehensive Assessment of At-risk Mental States (CAARMS). It also led to a surge of international interest and visits to the PACE clinic, with researchers and clinicians in the US and UK setting up their own prodromal services.
Most importantly, it helped conceptualise the prodromal phase as a window of opportunity: one in which intervention could either prevent full-blown psychosis or minimise the condition’s severity and its psychological and social impacts.
“In addition to being able to identify these young people and know that these young people did want help, we could start this agenda of working out the best interventions for them,” Professor Yung says. “And then there was this huge momentum that developed around prodromal treatment.”
Gathering momentum
But parallel research by Professor McGorry and Clare Lincoln found that young people with emerging psychosis were commonly experiencing prolonged delays in seeking treatment. Around 50 per cent also experienced psychotic symptoms before approaching a service.
It also found these delays stemmed from lack of community knowledge about mental health and available services, as well as health care workers who too easily missed the signs and symptoms of mental health issues.
International research into first-episode psychosis reflected these trends, with a seminal 1991 paper by Richard Wyatt revealing the destructive impact of treatment delay.
And so with a gathering evidence base for early psychosis intervention and working models of youth-specific early intervention services such as EPPIC and PACE, the scene was set for the next big push and impact: national reform.