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Safety net

Lucky: it isn’t a word you associate with psychosis. But for writer Philip Moscovitch and his family, his son’s diagnosis and treatment at Halifax’s innovative Early Psychosis Program was a fortunate first step to recovery—for the whole family

The call came before midnight. Sara and I had been worried about our then-21-year-old son for a while. When we’d last seen him at a farmers’ market a few weeks earlier he’d seemed distant and uncommunicative—unlike his old chatty self. Eerily thin, he seemed to almost stare through us as we sat across the table from him drinking our coffees.

Something was wrong, but we had no idea what. Was he upset? Tired? Or was there something more going on?

Then, the call: it was from an RCMP officer in Digby, a coastal town in southwestern Nova Scotia. Our son was down by the water behaving oddly, she said, and she wondered if he had any mental health issues. The officer convinced him to go with her to the nearest ER.

We got into the car and started driving, frightened and unsure about what we would find.

At the emergency room in Yarmouth, the psychiatrist on overnight duty suggested admitting our son. The hospital was a three-and-a-half hour drive from our home on St. Margaret’s Bay. We’d rather go back, we said, and see about getting care in Halifax.

Sara and I knew little about the mental health care system, but we had heard of the Nova Scotia Early Psychosis Program (EPP) through a family member with a friend who worked there. Sara called the program. Our son met their criteria: a first episode of psychosis—which, in his case, included hallucinations and hearing voices—in someone between the ages of 15 and 35. Within a couple of weeks he was an outpatient in the program, under the care of a nurse and psychiatrist.

I didn’t realize until much later—as over the next couple of years our son went through a dramatic recovery—how lucky we were that he was being seen at Early Psychosis, and how special the program was.

Jennifer (not her real name) is a professional in her mid-30s who lives in Halifax. When she first started experiencing psychotic symptoms—broadly defined as a set of experiences that involve a loss of contact with reality—in her youth, she was scared she would be “locked up in the psych ward… shuffling down the hall in bunny slippers drooling, and that would be my life.”

Instead, she eventually wound up an outpatient at the Early Psychosis Program (EPP).

The clinic is a leader in understanding psychosis as a condition that has several discrete phases, and in tailoring treatment to each one. While the EPP is part of the Nova Scotia Health Authority, it is an active teaching centre for the Dalhousie Faculty of Medicine.

I didn’t realize until much later—how lucky we were that he was being seen at Early Psychosis, and how special the program was.

For decades, schizophrenia—the diagnosis for most of the people seen at the EPP—was seen as an only minimally treatable illness. Patients could be managed, but there wasn’t much hope for recovery and a “normal” life. But advances in brain imaging, along with a new generation of anti-psychotic drugs and the development of early intervention programs like EPP have changed that view dramatically.

“I think early psychosis programs are wonderful, because they are the cutting edge of sane wraparound care,” Jennifer says. “They acknowledge the importance of having a very holistic, balanced approach—with rec therapy, nurses, psychiatrists and other programs. They have a lot going on, and that’s necessary because people need so much support in the early stages to be able to get on their feet and go forward.”

“It’s a bit of a new approach,” says Dr. Phil Tibbo, who has been director of the EPP since 2009 and holds the Dr. Paul Janssen Chair in Psychotic Disorders at Dalhousie. “The whole thing about early intervention is identifying early signs of illness. So when you’re able to define that phase, you can have phase-specific treatments as well—some of the treatments we deliver within this group might be different from what you would do with someone in their forties or fifties.”

Over the course of their lifetimes, about one percent of Canadians will experience at least one episode of psychosis. Psychotic disorders generally first become apparent in the teens and twenties—right around the time many young people are in school, moving out, developing lasting relationships. Through research-based interventions, Dr. Tibbo says, “what we are trying to do is make sure people get back to all that.”

When our son arrived at the clinic, he was in the third phase: acute untreated psychosis. (The other phases range from experiencing minor psychotic symptoms to treated psychosis, in which symptoms no longer disrupt people’s lives.) He didn’t trust Dr. Michael Teehan, his psychiatrist, “because I didn’t understand that I had psychosis or what that implied. I had no idea that I would have to spend a couple of years trying to figure that out. It took Dr. Teehan a while to convince me that I had psychosis, and then it took him another while to convince me that I could heal from psychosis. But he works really subtly. He doesn’t tell you this is what you need to do, but you start to put the pieces together.”

But putting the pieces together for individual patients isn’t the only work being done at the clinic. When I meet with Dr. Tibbo in mid-2017, he is working on a model of care that would see early psychosis services available throughout the province. He describes his goals as we sit in his office at the EPP, just past a six-foot tall poster that says, “Psychosis is treatable, the sooner the better.”

“People are recognizing the benefits of early intervention,” says Dr. Tibbo, explaining the advantages. “Greater reduction in symptoms, higher remission rates, greater retention in treatment—so patients are better engaged, they have greater rates of medication adherence, reduced rates of relapse, improvement in quality of life, and cost savings to the health system. What this really all equates to is reduced suffering for patients and families, as well as a benefit for society at large.”

Dr. Tibbo says that the Nova Scotia EPP, founded 20 years ago, is “at the leading edge of what care should be.” It was among the first early psychosis programs in Canada; today, every province but PEI has one.

Patients can remain part of the clinic for up to five years. During that time, they benefit from what Dr. Tibbo calls “integrated care”—a mix of medication, cognitive behavioural therapy and programs including gardening, cooking and basketball groups, and the services of a social worker and an occupational therapist. “Whatever the individual needs,” he says.

What the individual needs—and, in many cases, what the family needs as well. For our family, the EPP has become a part of our calendar: on the third Thursday of every month, Sara and I head down to the Abbie J. Lane Building in Halifax, where the EPP is housed, for family support group. In the waiting room of the clinic, we sit on comfortable couches and share our experiences. The clinic social worker asks us how we are doing: some better, some dealing with setbacks or, occasionally, relapse and hospitalization. We listen to each other and try to reassure the new people who have the shocked, exhausted look that we once did.

Nick Pearce photo

The EPP puts considerable energy into serving families. In addition to the monthly support group, the clinic offers programs including regular family education sessions and has a social worker available to meet with loved ones. Initial assessments for new clients include separate sessions for parents, where possible, and—with patients’ consent—family members can be included in meetings with psychiatrists, nurses and other staff. And any time we had questions or concerns, we could call our son’s nurse, Nicole Collins, and would hear back almost right away.

As we sit in his office, Dr. Tibbo shows me a slide from an upcoming talk he is giving in Saskatchewan, outlining the four critical factors predicting relapse. One of them is criticism from caregivers. It can be difficult caring for a loved one with psychosis, and sometimes family members get frustrated—particularly about what they may see as a lack of motivation. Dr. Tibbo says it’s not uncommon for family members to say things like, “All you have to do is go back to school, get out of the basement, get off the Xbox. What are you going to do with your life?” But ultimately, that’s not helpful. He says when families understand psychosis better, they can offer more support and be less critical—and that helps with recovery.

One of the challenges with psychosis is what are known as negative symptoms – decreased experiences of pleasure, loss of motivation, sometimes a drop in cognitive abilities. While they are not as dramatic as symptoms such as hallucinations, they can be far more persistent and challenging to treat. Just down the hall from Dr. Tibbo’s office, basketballs spill out of a reusable grocery bag on the floor of occupational therapist Lachlan MacDonald’s office. Behind his desk, a bookshelf is filled with pamphlets for groups supporting people with mental illness, copies of Canada’s food guide and books on healthy living. A plate showing ideal portions of vegetables, starch and protein sits above a handbook on living with mental illness. MacDonald, who is trained in cognitive behavioural therapy as well as occupational therapy and has been with the EPP just over three years, plays a key role in helping the clinic’s clients with an array of life skills and specific tasks.

It’s been nearly two years since our son’s diagnosis, and Sara and I are here with him to talk to MacDonald and find out what supports are available when he goes back to school in the fall. MacDonald goes through the process of applying for financial aid, and spends time explaining what additional funding is available to help people with mental illness.

What sets the EPP apart is “a culture of working with people as they are, focusing on the things that are important to them, doing things quickly and efficiently.” 

As well as helping with specific tasks such as how to find a job or get help with school, MacDonald also runs a recreation group (bowling, yoga, library trips, walks in the park), and a weekly basketball group. He says what sets the EPP apart is “a culture of working with people as they are, focusing on the things that are important to them, doing things quickly and efficiently—and having the resources available to be able to do that. When people encounter long wait times, what could be a more manageable problem becomes a larger problem. The whole purpose of the clinic is to see people quickly, to determine if there is something related to psychosis going on and then to treat that as quickly as possible and either get them back to what they were doing or onto their new path.”

He adds, “So if someone comes in and says I want to find a job, I just focus right in on that. Where are you on that? Do you have a resume? Do you know how to do a job search? What skills do you need to work on and what plans do we need to help you accomplish your goal? I might work with them once and do something basic, or I might work with people longer and more in-depth. It just depends.”

This kind of approach—long-term, with close attention from doctors, nurses and other staff—does not come cheap. (That’s one of the reasons Dr. Tibbo says the US lags behind in early intervention care: “It’s expensive, and sometimes the people that need the help don’t have the insurance.”) But it’s worth it, Dr. Tibbo says, pointing to research showing that the kind of care the EPP offers correlates to significant reductions in the duration of untreated psychosis (a risk factor for relapse), a lessening of symptoms, lower risk of suicide and a higher rate of compliance with medication.

Just over two years since he started in the program, my son and I are driving back from Bridgewater, where he is studying heritage carpentry at the Nova Scotia Community College. We talk about his experiences in the Early Psychosis Program, and he says, “I’ve had some really emotional appointments and Nicole listened really well, respected what I was experiencing, and was totally non-judgmental. Just providing support. I had to do the legwork. I always have to do the legwork—but they’re there to catch you. Which is great. The EPP gave me a platform to heal.”

Dr. Tibbo, who grew up in Newfoundland and Saskatchewan, hopes that platform can be extended throughout the province—not with standalone clinics like the EPP, but with teams that can recognize early psychosis and deliver appropriate care. “I don’t expect every region to have a standalone clinic like this—the numbers don’t support it. But there has to be a way to have a team there to make sure people are recognized early enough and getting the key components of care that are necessary,” he says.

“I’ve always been very passionate that we shouldn’t disadvantage a youth just because of where they live. If they want to come to Halifax, fine. But if they want to stay in Yarmouth, they should stay there. I just want to make sure they get the right care.”