Jess was eight the first time she did something ‘clumsy’. She was playing in her dad’s garage when she found a Stanley knife and cut herself on purpose. She told her parents it was an accident.
Depressed and struggling with bullies at school, Jess soon developed a reputation for clumsiness as she swapped the Stanley knife for the subterfuge of netball.
“I remember the way I used to hurt myself the most was when I would play netball, and I would fall over on purpose and graze my knees multiple times during just one game,” remembers Jess.
But this game took on a darker edge when at age 18 she started seeing and talking to cartoon characters around her.
“Then that led to things like I was seeing shadows in the corners of my eyes running at me with knives, and people were trying to convince me to commit suicide or hurt myself, and it got bad pretty quickly,” says Jess.
The now 22-year-old has recently completed Orygen’s Early Psychosis Prevention and Intervention Centre (EPPIC) program, which is one of Orygen’s key achievements over the past 25 years.
But things would become much worse before Jess found her way to EPPIC — running away to Sydney, isolating herself from friends and family, trying to kill herself on a regular basis, and finding herself in and out of hospital.
“The first few times when I was in hospital in Sydney, I had to go into adult wards, and it was really scary for me. I wouldn't even leave my room,” she says.
Jess’s story reflects the challenges that young people face when dealing with psychosis and mental ill health.
It also highlights why Orygen developed the EPPIC model in 1992 and pioneered a paradigm shift in the treatment of psychosis and other youth mental health issues, both in Australia and overseas.
Orygen’s Executive Director, Professor Patrick McGorry, has witnessed this quarter-century of change and played a central role in the development of EPPIC.
He remembers a time when health professionals treated mental illness as a terminal disease, offering no option of recovery and terrifying children as young as 15 by placing them in adult wards.
“They were being brought into a mental hospital and surrounded by people who were middle-aged and had the most severe, disabling illnesses,” Professor McGorry says.
“And there was so much pessimism around the treatment of schizophrenia and psychosis. Everyone said, ‘Well, it doesn't really matter when you diagnose it because they're not going to get better anyway’.”
It was the lack of hope that stuck with Professor McGorry.
“Hope is necessary in treating any kind of disorder. That wasn’t recognised in psychiatry and certainly wasn’t practised,” he recalls. “We decided to try and turn this around — to challenge the idea that people couldn’t get better.”
In 1984 Professor McGorry established a first episode psychosis research unit at Royal Park Hospital in Melbourne. This 11-bed in-patient unit was one of the first such facilities in Australia, and it became the incubator for some of the guiding principles and core components of EPPIC.
“The psychosis research unit helped us gain a better understanding of the particular needs of these patients and the special preventive approach required for their clinical care,” Professor McGorry says.
In the research unit’s first 12 months of operation, Professor McGorry and his colleagues were struck by the young age of the people being admitted for first-episode psychosis (FEP).
“We saw these young people coming into hospital for the first time after long delays. It was obvious they had been sick for quite a long time before they got any help,” Professor McGorry says.
“And then they were brought into this 19th century asylum sort of environment, which was very frightening and traumatising — often with the police, often in a very coercive sort of way,” he says.
“So they developed traumatic stress symptoms from all of this. They were also over-medicated, their doses were excessive and they were experiencing significant side-effects.”
Professor McGorry says they quickly recognised the need to humanise the care of these young patients and make it more therapeutic, rather than harmful.
“We also showed that reducing delays in treatment improved the outcome, and you had to do a lot more things than just medication; the medication needed to be used more carefully in much lower doses,” he says.
In 1987, on the back of this experience, Professor McGorry, Jane Edwards, Heather Stavely and Henry Jackson added a 10-bed in-patient recovery unit at Royal Park Hospital and further developed the components and principles of EPPIC.
Multidisciplinary groups were a unique part of this recovery program, which, for the first time in a public psychiatry in-patient program, included families as a key pillar of recovery.
“Families are the key support system for young people; they’re the ‘scaffolding’ for transition as young people move from childhood to adulthood. It’s an evolving relationship, and it’s put under great strain if a young person develops a mental health problem,” McGorry says.
“At the same time, supporting the family with information, emotional support and involvement in the clinical program is a vital area.”
The group programs ranged from communications skills, community involvement and psycho-education, to expressive therapies such as music and art.
“While the group program element seemed odd to some, it provided an opportunity for patients to reduce isolation, build self-esteem and provided much-needed peer support,” McGorry says.
In 1992, Professor McGorry, Jane Edwards and Henry Jackson sought to reduce treatment delays further by establishing the community-based EPPIC in Parkville. The centre incorporated what they had developed so far and also focused on identifying young people before they developed sustained or entrenched psychotic symptoms.
“Delays in receiving treatment are damaging to a young person in the critical period of adolescence, and can mean that maturation is put on hold,” Professor McGorry says. “Social and family relationships are strained or severed, and vocational prospects are derailed.”
To do this, Orygen established a case management system and a detection team that would seek out and find patients via referrals from GPs and schools, and then assess them in their own homes or schools.
They also developed community awareness and education teams to promote mental health support and raise awareness about referral pathways.
“Later, we introduced in-home treatment so we didn't have to admit every young person to hospital if they were acutely psychotic. We could treat most in a home setting, and when they were in remission or recovering, we would give them a case manager and a psychiatrist to look after them for two years, Professor McGorry says.
“We called this the ‘critical period’, when the future course of illness was established.”
Professor McGorry says over the 25 years since EPPIC began there have been a number of people who have been critical to its success: Andrew Chanen, John Cocks, Jane Edwards, Henry Jackson, Kerryn Pennell, Paddy Power, Heather Stavely, and Alison Yung.
After two years in the EPPIC program, Jess says the biggest change is finding her voice. She now wants to use it to help other young people struggling with mental illness.
“When I started seeing my case manager I didn't really know how to talk very well. So the first three or four months, my sessions were very silent and if I was talking, it was yes or no answers or one-word answers,” she says.
“It was the first time that an organisation had even bothered to try and get me to open up. After three or four sessions most people would just give up, but Orygen sat with me and they tried to get me to open up and then eventually I did.”
Most importantly, the program gave her hope — especially after meeting the youth peer support workers.
“Just seeing someone who had lived through something similar to what I had and they're living their lives now, it just really impacted me. It kind of gave me hope, says Jess, who has now become a peer support worker for Orygen.
“I always thought that that's maybe the reason that I've gone through all of this is to help others.”