14 December 2018

Leading a global movement for change

Leading a global movement for change

For Jan Olav Johannessen, chief psychiatrist at Norway’s Stavenger University Hospital, the past 25 years have been a “tremendous journey” that has included the birth of an international movement that has delivered reform in the treatment of early psychosis around the world.

“It's been a tremendous journey to be part of a development that has paved the way for a quite new understanding of what mental disorders really are: away from the ancient view that they are illnesses, over to the more dimensional view of mental health and mental illness and the staging understanding of how mental disorders develop,” says Professor Johannessen, who is also chair of the International Society for Psychological and Social Approaches to Psychosis.

“To be part of that international movement has been very rewarding from a professional and a personal view.”

This groundswell movement has been inextricably linked with the development of the Early Psychosis Prevention and Intervention Centre (EPPIC) and led by the work of Professor Pat McGorry, Dr Jane Edwards and Kerryn Pennell, who connected and empowered a constellation of like-minded clinicians and researchers across the globe.

“We have gone from one country to another and had lectures, conferences and so on. But the driving force and the wheel in this has, of course, been Melbourne and Australia,” Professor Johannessen says.

“They set up the International Early Psychosis Association (IEPA) and now they have the International Association for Youth Mental Health, so they are driving the organisations internationally.”

According to Dr Ashok Malla, Director of the Prevention and Early intervention Program for Psychoses in Montreal, Canada, Professor McGorry’s EPPIC group also provided an influential template for early psychosis services and kick-started a collaborative support system that helped him and many others to achieve reform in their countries.

“The history of early intervention is fascinating, and a lot of it has to do with how much we supported each other and how much we shared our values and ideas,” Dr Malla says.

“Pat's group was out of the gates a bit earlier, so we learned from their experience, and then after that whether it was in England or here or anywhere, whenever we needed support, we just called the other and said, “OK, can you come and tell the authorities here that it's a good idea?,” he says.

“It was a groundswell movement that started in Melbourne and then just took off with like-minded people.”

These like-minded people hailed from across the globe, with countries such as the UK, Norway, Denmark, Canada, America, Singapore and Hong Kong all inspired and emboldened by the success of EPPIC to implement their own early psychosis services and to push for national reform.

Professor McGorry says it has been great to be part of a global community pushing for the same thing and a peer group that he could call on for support, especially during the long years when his own push for national reform seemed to have stalled in Australia.

“That's partly why it has succeeded, I think, because you're part of a movement. It's scientifically based, but it's like a movement,” he says.

Think local, act global

In 1992 Professor McGorry, Dr Edwards and Ms Pennell were busy making changes in their corner of the world with the opening of EPPIC, but this local focus would shortly change.

That same year, Max Birchwood, a clinical psychologist and prominent schizophrenia researcher from Birmingham, UK, came to Melbourne on a lecture tour.

On a spontaneous visit to Royal Park Hospital, where he once worked, Professor Birchwood heard Professor McGorry talk about EPPIC.  Inspired, he returned to Melbourne in 1993 to do a sabbatical year with the service.

“After his sabbatical with EPPIC, Max went back to the UK and wanted to replicate what we had done, so we could see there was a possibility of being a worldwide sort of thing. And we thought, ‘Well, let's be the leaders of it’,” Professor McGorry recalls.

Another opportunity soon followed in 1996 when EPPIC hosted a satellite conference following a major psychiatric congress in Melbourne.

This congress made it possible to bring together 10 of the leading early psychosis researchers to attend Verging on Reality: The First International Early Psychosis Conference, which was attended by 600 participants and spawned the birth of an international association.

“We set up the International Early Psychosis Association in Melbourne and held conferences in different parts of the world to try to promote and grow the field,” Professor McGorry says.

“It was like an early psychosis international campaign. We tried to find partners and collaborators to be part of this campaign, and those IEPA meetings were very important for that too,” he says.

“I also travelled to lots of countries in Europe, such as England and Ireland, as well as Scandinavia, and the US and Canada. We worked actively with other centres and we ran training workshops in many countries as well.”

Professor McGorry says these relationships also fostered the collaborative development of ideas and evidence gathering, which helped make his own case for reform in Australia.

“We helped every single one of those international pioneers to get off the ground, but they were sometimes in a better position to produce evidence in support of what we were doing,” he says.

“They could do randomised controlled trials in settings where we no longer could. Because our service was so embedded, we couldn't withhold it from people. Whereas when they were starting off in other countries, they could set it up and they could test the model better, like in the UK and Denmark. That really then helped us when we could go back with the evidence into Australia.”

During his sabbatical year with EPPIC, Professor Birchwood also developed the concept of the “critical period”, the time after the onset of psychosis when the patient was most vulnerable and the illness most virulent.

This provided a logic for retaining patients within expert specialised early psychosis care in the community for two to five years so they could maximise recovery and limit the risk of relapse and disability.

“It helped to convey the idea that working with first episode psychosis was a needed thing, that you're dealing with people with severe problems that develop very quickly, and that if you didn't get on top of it quick, it was very difficult to reverse,” says Professor Birchwood, whose health economics modelling also helped further political conversations about investment into these services, both in the UK and Australia.

United Kingdom

Prior to his sabbatical year at EPPIC, Professor Birchwood had set up an early psychosis day centre in North Birmingham with the help of Fiona Macmillan, co-author of the seminal Northwick Park study, which identified the role of Duration of Untreated Psychosis (DUP) in first episodes. DUP is the time period between the first onset of psychotic symptoms and first appropriate treatment.

The service was based in an inner-city area where poor, migrant communities lived and rates of early psychosis were high.

Professor Birchwood also discovered that many young people did not engage with the available services prior to their first episode of psychosis, particularly African-Caribbean and Muslim young men.

“This very high rate of disengagement was disproportionate in young black men, and these young black men were therefore particularly susceptible to coming back into hospital under the Mental Health Act,” Professor Birchwood says.  

He says the first chance encounter with Professor McGorry was a “meeting of minds”, and the sabbatical with EPPIC helped him to evolve his day centre into a service that went into the community to engage these young people so they didn’t have to come to an outpatient clinic.

“I remember going back and saying, "Look guys, we've not been sure how to progress this. You know what they're doing in Melbourne? They've got dedicated specialist teams, and I think this is what we need to do. We need to expand it in that direction, but to make it relevant to our context,” Professor Birchwood says.

“It was EPPIC’s initiative to get out of a ward-based environment and to offer a completely integrated service for first episode psychosis, which influenced our own journey from inpatient and day-patient service, to community service,” he says.

Most importantly, his service, along with the LEO service at the Institute of Psychiatry in London, developed independently by Paddy Power, Tom Craig and Philippa Garety, ultimately provided the blueprint for the national scaling up of early intervention services for psychosis in the late 1990s and early 2000s.

Canada

Meanwhile, in Ontario, Canada, Dr Malla had been coming to his own realisation about early intervention for psychosis.

During his addiction work in the early 1980s, Dr Malla frequently saw patients who had been struggling with psychotic disorders for a long time.

“I would see people who had previous treatment and it dawned on me that these people could have been helped much more if we had just paid attention to things very early on and not just treated them so pessimistically from the very beginning,” Dr Malla says.

In 1989 Dr Malla, Dr Ross Norman and Ms Terry McLean set up the Community Rehabilitation Program at Victoria Hospital in London, Ontario. The community-based treatment program used assertive case management to help patients with schizophrenia spectrum psychoses but did not focus on first episode or early psychosis. 

“And as I started seeing more and more people who were being referred to me with their first onset, I became more and more convinced that if things were done right at the beginning, we would have much better outcomes,” Dr Malla says.

In 1995 he connected with Dr Jane Edwards and other EPPIC colleagues at a conference in Rotterdam, where he began talking to them about their early intervention service.

EPPIC’s packaging of evidence-based treatment would help shape the thinking of Dr Malla and Dr Norman, who launched the Prevention and Early Intervention Program for Psychoses (PEPP) in 1997.

“It's been a very interesting relationship — very parallel, very similar thinking  — and certainly the people from EPPIC had done quite a lot of work already, especially in the ultra high risk, the PACE clinic, which we didn't start until several years later,” Dr Malla says.

“I think EPPIC confirmed what for many years I had believed: that we cannot provide these single interventions. We need to package them together, and we felt that if they had done it successfully, we should be able to do it as well,” he says.

“It also made it easier for us to justify to the teaching hospital, where we were attached, that we should be running a program like that.”

Like EPPIC, the new program also integrated clinical work and research, and families played a particularly prominent role.

“One area where we were very strong was the involvement of families. The families of our patients were very influential in shaping how the program was structured and getting involved with fundraising,” says Dr Malla, who now runs the same program at Montreal’s Douglas Mental Health University Institute.

There are now 55 early intervention programs in Ontario following the success of PEPP, the Centre for Addiction and Mental Health first-episode service in Toronto led by Robert Zipursky and the Ottawa first episode program led by Paul Roy.

Norway

In southwestern Norway, Professor Johannessen and his team at Stavenger University Hospital started to develop treatment programs for early psychosis around 1985. But these programs were embedded in the hospital’s existing mental health service rather than operating as a streamed early psychosis service.

“We had a focus on early treatment but not on early detection, so we didn't know at that time that the duration of untreated psychosis was so very long, not only here, but in the world,” Professor Johannessen says.

“We published data on the duration of untreated psychosis (DUP) in the early 1990s and that was a little shock to us. The average DUP was up to two years in Norway, and that was the case in the rest of the world as well, so it was then we decided to focus on the importance of early intervention,” he says.

In 1995 Professor Johannessen met Professor McGorry and his EPPIC team at an early intervention conference in Stavenger.

“We learned a lot from EPPIC, Pat and his group on the marketing strategies, information strategies and the professionalism they had developed early in the ’90s,” Professor Johannessen says. “We also learned a lot when it came to the structure of the services and the treatment programs for first episode psychosis.”

But he says the learning also worked both ways, with Professor McGorry’s group and other international early psychosis reformers sharing ideas with each other.

“I think we learned a lot from each other and we had no restrictions on borrowing ideas from each other,” he says.

With the help of Inge Joa, Robert Jørgensen, Gerd Ragna Bloch-Thorsen, Kjetil Hustoft and TK Larsen, Professor Johannessen developed an early detection and treatment model called TIPS, as well as a multi-centre TIPS research project.

The main features of TIPS include early detection teams, which are accessible to the public without a GP referral, and a focus on assessing young people at risk of developing psychosis and those who have already experienced it.

The teams also lead information campaigns targeting the general public, high school teachers and health care professionals, but they have no treatment responsibility.

“To achieve early intervention, you have to focus on the information campaigns and you have to have the low threshold, and I think it's in Australia and in Norway that we have early, early treatment,” Professor Johannessen says.

“But in contrast to other specialised early intervention services internationally, the early detection teams that we established have no treatment responsibility,” he says.

“They give a guarantee that they will assess the patient with 24 hours and if it's a psychosis or could be a psychosis, then it's a treatment within one week. The treatment is provided by the community health centres that we now have decentralised all over the country.”

TIPS has influenced the national approach to psychosis, with the model embedded in national guidelines and Professor Johannessen the chairman of the national committee that makes recommendations for assessment, treatment and follow up for psychotic disorders.  

There are now early intervention services in every major city and in each of the four health regions, although there is still a need for still more.

Professor Johannessen says he has seen great change in the Norwegian approach to psychosis and mental disorders in the past 25 years, but that this change is just one piece of a larger mental health puzzle for both his country and the rest of the world.

“We used to have this big hospital on the other side of the fjord. It was a frightening place to come, but we closed it around 2000 and we now have modern decentralised facilities,” Professor Johannessen says.

“But we don’t have that anti-stigma focus like in Australia, and their very big achievement is the headspace model. And that's something that we are all looking to implement around Scandinavia,” he says.

“Denmark has many headspace centres now. In Norway we have only three, but we are trying to develop it so it should be more accessible for the young people and a more anti-stigmatic milieu,” he adds.

“I think what Pat and Ian Falloon and others are working on is, in a way, a model for the whole western world to implement.”