Building Lynx: A Rural Early Psychosis Intervention Program Sows the Seeds of Success
By Elizabeth Lines
Network, Winter 2007
‘I was very hyper and had too much energy. I started to become paranoid and thought there was somebody following me. Then one morning I woke up and saw a computer in my room and thought my parents had bought me one. But when I went to the bathroom, the computer was there. And when I went downstairs, the computer was there. So this computer was following me around and it started to show me images of people who were dying in the hospital. I spent a lot of time – whole days – trying to figure this out. But at the same time, I started to feel that I wasn’t in charge of my bodily movements, the computer was. Then one day I remember I was outside speaking with somebody when all of a sudden I just left in the middle of the conversation and went upstairs and went to bed, because the computer had told me to sleep. It really wanted me to be asleep all the time. So I started to get scared cause I was certain that the computer wanted me to do something to myself so that I wouldn’t wake up again. I was really, really scared.’
At 18 years of age, David Barkley was experiencing his first episode of psychosis: a physical condition of the brain that involves some loss of contact with reality. It alters a person’s thoughts, beliefs, perceptions and/or behaviours. Psychosis is not uncommon – 3 percent of the population will experience psychosis at least once in their lives.
The majority of first episodes strike people in their late teens and early twenties. Psychosis can seriously disrupt young lives and preempt the achievement of important developmental milestones, such as completing an education or getting a job. More often than not, psychosis signals the onset of a schizophrenia-related disorder. But it can also be associated with a variety of other conditions including depression, bipolar disorder and substance abuse.
In fact, at the time of the first episode of psychosis, it can be difficult to know the specific cause. But a growing body of research suggests that the eventual diagnosis is secondary to the importance of limiting the duration of untreated psychosis. By catching the signs and starting treatment early, the clinical outcome can be greatly improved. Recovery can be faster and more complete. Young people like David can get on with their lives sooner rather than later. Such is the hope and the promise of early psychosis intervention (EPI).
Lynx is a community-based, multi-agency EPI program based in Peterborough, Ontario, that serves four adjacent counties in the area. Gord Langill of the Canadian Mental Health Association, Peterborough Branch, and Lynx program coordinator, describes the days before EPI: ‘Then it was very common for psychosis to not be identified in the early stages of the illness. It might be seen as depression, or regular teenage behaviour, or suspected drug use. Something other than psychosis was used to explain the experiences young people were having. So they would have several contacts with various professionals and might end up at Emergency more than once. Sometimes they were even admitted to hospital, still not diagnosed with psychotic illness, then discharged with other diagnoses and medications.’
Since EPI is premised on the early identification of symptoms, key outreach activities of EPI programs include public education and professional development to raise awareness.
‘Our communities are coming to know that psychotic illnesses can have a devastating long-term effect on individuals and their families, and they now know that the trajectory over the lifetime can be altered by early intervention. So our focus through Lynx is to create a culture of early identification in the four counties where we work to help communities identify psychosis in its early stages because it can reduce the intensity and duration of the first episode.’
Gord continues, ‘Some of our clients have been identified, referred, are in treatment and may even be diagnosed with schizophrenia and have never spent a night in hospital.’ This is a major change from the days when schizophrenia and protracted hospital stays seemed to go hand in hand.
‘The treatment program at Lynx has three main components,’ notes Gord. ‘These are psychiatric treatment, including medication; case management; and family support services, including education and support groups for youth and for family and caregivers.’ Gord highlights the multiple gains associated with the youth group in particular: ‘The youth group does three things. On a weekly basis, it provides psycho-education, so young people can come together to learn about psychosis and learn skills for recovery. It provides peer support, so they can learn from each other. Thirdly, the group comes together for activities. We provide a bit of money, transportation, etc., so they can do things together. The isolation young people can experience with psychosis can be severe, so the group helps with reintegration.’
As for families and their needs, a first episode of psychosis can be a devastating experience for all. ‘When we took him to the hospital, he was extremely irrational – he was rhyming and rapping and making no sense – he was very manic. That was the first night he was hospitalized. And it was like a death. We were grieving. Leaving him there was the worst thing we’d ever experienced,’ explain Rosemary and Jay, the parents of Aedan, a young man who’s now doing very well with the help of the Lynx program.
‘What we’ve found most of all is the importance of assistance in the community and coming to know that there are others out there who’ve experienced similar issues – a young person with psychosis. I don’t now where we would have gone without the assistance of an organization like CMHA and a program like Lynx,’ says Jay now.
Adds Allyson Susko of the Schizophrenia Society and one of three Lynx public education and family support coordinators, ‘Within a little over a year we’re seeing families ‘graduate’ from the family group. They’re moving on already. They’re too busy for a group – they’ve got soccer and choir, etc. It’s just another sign that EPI has really changed the face of the illness.’
And certainly Lynx has been changing the face of EPI across the four counties of Haliburton, Northumberland, City of Kawartha Lakes and Peterborough. While there has been active interest in EPI in the area since 2000, the Lynx program got started in 2004 when it was funded by the Ministry of Health and Long-Term Care.
‘At that time, the current eight partner agencies really came together, but they did so with varying levels of awareness about EPI,’ explains Gord. ‘Some were very new to it. So it continues to be a very big learning experience for this multi-agency team. But since 2004, we’ve had a more standardized approach to referral and treatment, and we can see that those people in the program who are coming to the two-year mark have done better. There’s no question.’
In terms of treatment needs over time, while the optimal treatment timeframe remains an issue under study, EPI programs generally provide services for a period ranging from two to five years. At present, the Ontario EPI program policy framework suggests services and supports be consistently available for three years.
‘There was a lot of debate as to what kind of model to institute,’ continues Gord. ‘There is, in fact, a lot of debate internationally as to the best ways of implementing EPI practice outside of hospital-based, large urban settings as it moves into smaller, more remote regions. There are a number of models, such as satellite, hub-and-spoke and network models. Specifically, our model is known as a multi-agency, multi-site, network model. With the network model, what you give up is direct administrative control of the staff. But what we gain is a very real presence on the mental health teams that do employ them – so there’s a sense of purchasing influence. It’s like planting seeds in a way. And it allows for EPI to move across program boundaries more easily.’
‘As an example, CMHA Peterborough had a house that had been for older, more chronic clients and it was being closed down due to a lack of need. So we thought maybe some of our young people could use it, since housing issues are very big issues for young people with psychosis – helping them to get past either institutional care situations or family situations, or homelessness and poverty itself – moving into something stable and autonomous, but with supports as needed. So we were able to access that home, and four of our clients are sharing that home right now as a living space.’
In Aedan’s words, ‘The Lynx house has been a great opportunity to live with others who have similar issues and learn how to be self-sufficient and co-efficient.’
‘So a lot of neat opportunities arise because we’re working so closely with our partners and with their programs,’ concludes Gord. ‘Gradually that’s paying off.’
Still, as a rural service, distances are definitely a factor. ‘The communities are smaller and farther apart, so providing for them and gathering any group together is difficult, especially during winter months when travelling is more difficult,’ says Melanie Jackson of CMHA Victoria County Branch, another of the public education and family support coordinators. ‘And because we have a number of farming families, in the summer months when weather is good, this is a key time for farming activities – so again it can be difficult for them to take the time to participate.’
But the distances haven’t stopped Joni White, public education and family support coordinator with CMHA Peterborough, from taking the Open Your Mind educational program to high schools across all four counties. Says Joni, ‘We’ve adapted the Open Your Mind program to take on an EPI focus so it’s very much about getting help early. And one of its key features is that it involves a young person who has had psychosis and he tells his story. He talks about what was going on for him in high school as his illness developed and what psychosis is all about. Last year we did 45 presentations during the school year. And that’s substantial, given the distances and travel time.’
And who was the young person doing the Open Your Mind presentations? It was none other than David Barkley, who this year moves from volunteer to a paid position with Lynx.
Enthuses Joni, ‘The message of hope is what I see in every aspect of the program – the education, the families, the kids in the program. It’s just exciting. And it’s so wonderful to see that it’s not just in a few isolated sites – it’s everywhere!’
For more information about the Lynx program, visit www.lynxtracks.ca.
Elizabeth Lines is a researcher/writer in areas of health and social issues.
Percentage of the population who will experience psychosis at some point in their lives.
15 to 25
The age when the majority of first episodes occur in young people.
The most common psychotic illness.
Male vs Female
Males and females experience the same rates of psychosis. Females tend to be older than males at their first episode.
- Fraser South Early Psychosis Intervention Program,www.psychosissucks.ca
- Ontario Ministry of Health and Long Term Care, Program Policy Framework for Early Intervention in Psychosis,www.health.gov.on.ca (December 2004)
- Canadian Mental Health Association, National, ‘Psychosis’ fact sheet, www.cmha.ca
PSYCHOSIS AND EPI
Phases of Psychosis
- Prodromal Phase – The period before psychosis is evident but the person may show early signs of changing awareness and behaviours.
- Acute Phase – The typical symptoms of psychosis are most evident.
- Recovery – Some symptoms of psychosis may linger through the recovery phase, but with appropriate treatment most will recover fully from a first episode.
Symptoms of Psychosis
- Delusions – fixed false beliefs
- Hallucinations – seeing or hearing things that aren’t there
- Disorganized speech or behaviour
- Lack of emotional response or inappropriate display
- Reduced motivation
Key Components of an EPI Program
- Early identification and easy access
- Comprehensive assessment
- Intensive, individualized treatment
- Psychosocial support
- Family education and support
- Public education
For early psychosis intervention resources, see www.ontario.cmha.ca/epi.
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