School of life: How peer support workers are helping people with mental illness
Sean LeBlanc was worried about Joe*, the man who used to sleep in front of his office in Ottawa. “I thought he’d be dead by Christmas,” he says. Between homelessness and addiction, Joe had only about 120 pounds on his 6’3” frame, and a degenerative leg condition had left him “basically paralyzed.”
But he was lucky in one way: he was sleeping on the right stoop. He was outside the Drug User Advocacy League, a group created by LeBlanc that fights for harm reduction. LeBlanc also brought Joe to Ottawa Inner City Health, where LeBlanc works as a peer support worker.
“The residence he now lives at was just about to open,” says LeBlanc. Joe was hesitant, because he’d had a bad experience in city housing, but LeBlanc convinced him to apply.
He got in, and he has now put on 50 pounds. He’s helping create a newsletter and a garden at the shelter he’s staying at, and has gone back to school. “This is the reason I do this work, despite its stresses, tragedies and my frustration with how this system works,” says LeBlanc, who himself used to be homeless and addicted to opiates. “Self redemption is a beautiful thing, and I am honored to play a small part in facilitating that.”
Peer support is a growing field in mental health. The term covers a heterogeneous group, from volunteers who work in grassroots organizations to people who have formal training and work in hospitals. But what unites them is that they’ve had mental illnesses or addictions and work with patients with similar problems.
A peer support worker has “lived experience of a mental health challenge or illness, or is a family member or loved one of someone who does, is in a positive state of recovery and has developed an ability to provide peer support,” according to the Mental Health Commission of Canada. They primarily offer empathy and inspiration, but can also provide help in other ways, including offering advice on navigating the health care system and acting as an advocate to clinical teams.
They’re “the missing link,” says Karen Rebeiro Gruhl, an occupational therapist in mental health and addictions at Health Sciences North and an affiliated investigator for the Centre for Rural and Northern Health Research, who recently wrote a study on the topic. “The system is sometimes very technical, professional and distant, and people who suffer from mental illness need comfort and support.”
The history of peer support
In mental health, peer support began with the consumer movement (also known as the psychiatric survivor movement), amid the civil rights movements of the 1970s. Since then, “we’ve seen the landscape evolve from a place where peer support was very much a grassroots initiative, towards a system where peer supporters are more integrated into traditional mental health delivery, and the practice is a bit more professionalized,” says Karla Thorpe, director of prevention and promotion initiatives at the Mental Health Commission of Canada (MHCC).
However, the roles and supervision of peer support workers still varies greatly. The bulk of LeBlanc’s position is helping clients navigate their lives: getting to medical appointments, obtaining IDs and finding housing. He had a client, for example, whose doctor didn’t think he needed an electric wheelchair, but his HIV and Hep C specialist supported it. “We got his two doctors and myself together in a room with him, and we came to a resolution,” he says – and he then took the man to a wheelchair depot to find a chair.
Peer support workers might also help people create Wellness Recovery Action Plans (WRAP). They’re an evidence-backed, preventive measure that encourages people to record triggers, create a list of early warning signs of problems, and make a plan for what will happen in a crisis and how to recover afterwards.
They have roles in Assertive Community Treatment teams, community groups, and hospitals, including CAMH, St. Michael’s, Toronto East General, and in Ottawa’s Civic Hospital and Hôpital Montfort – where they’re used both in the inpatient unit and in the emergency department to support people who are waiting to be assessed or waiting for a bed.
In the Ottawa hospitals, the peer support workers are trained, supervised and paid for by the Psychiatric Survivors of Ottawa (the wages start at $23.50 an hour). Other training is offered by the Ontario Peer Development Initiative, which acts as a voice for consumer organizations in Ontario, and has created a five-day training program which leads to certification.
In 2013, the Canada-wide MHCC produced practice and training guidelines for peer support, which were then adapted by Peer Support Accreditation Certification Canada (PSACC). While it doesn’t provide education, the PSACC does test for a knowledge base that includes three aspects: the fundamental concepts of peer support, its historical and social context, and the methods of creating effective relationships between peers and clients. PSACC has just begun offering certification, and it’s also working with Nova Scotia to introduce province-wide certification.
It’s difficult to know how many peer support workers there are across the country, since many are volunteers. But a 2010 report for the MHCC estimated they made up 0.2% of Ontario’s mental health budget, and there are about 60 Consumer Survivor Initiatives in the province.
Peer support workers are more widely used internationally, including in America, Australia and New Zealand. In the US, one review estimated that peer support workers offer more than twice the amount of services traditional mental health organizations do – and their use has grown since 2007, when peer support services began to be covered in some states under Medicaid.
The growth is part of a wider movement towards thinking differently about mental health – one that’s reflected in the Mental Health Strategy of Canada and of Ontario, both of which emphasize the need for more peer support workers. “Our task has become much less about reducing psychiatric symptoms, and more about helping people reach as great a potential as they can,” says Sean Kidd, psychologist and a clinician scientist at CAMH. “It’s working against the notion that if you have a diagnosis of schizophrenia or bipolar your life is over, and engaging people in the recovery process.”
The benefits and pitfalls of having peer support workers in clinical teams
Peer support uses a wellness model – one that focuses on the ability to function effectively, on people’s positive traits, and on the potential for recovery – rather than an illness model, which often emphasizes symptoms and problems. It is ideally offered by those who have a similar background or similar illness.
One of most important things they give to patients is hope. “The inspiration provided [in peer support] by successful role models is hard to overstate,” said a 2011 literature review in the Journal of Mental Health. By nature, it also reduces isolation, with recipients reporting they feel more accepted.
That’s a sentiment LeBlanc understands. “I was in really rough shape once, and a lot of people saw me that way,” he says. “I’m easier to relate to – I’ve been there, I stayed in the same shelters. If I could change, there’s a possibility they could change, too.” The work is also helpful to the person providing the peer support work, offering employment (if the position is paid) and a sense of mission.
The evidence has largely been positive around peer support workers, with a 2013 Cochrane review emphasizing its benefits. It examined 11 studies on “consumer-provider” roles in mental health, which includes peer support workers. Much of the research they looked at was of moderate to low quality. But it concluded that “employing past or present consumers of mental health services as providers … achieved psychosocial, mental health symptom and service use outcomes that are no better or worse than those achieved by professional staff.”
Yet a 2014 systematic review in BMC Psychiatry was less positive, finding that while there was some evidence peer support affected “hope, recovery and empowerment… there was little or no evidence that peer support was associated with positive effects on hospitalisation, overall symptoms or satisfaction with services.”
It can also be difficult on the workers themselves. Though Gruhl’s review was largely positive – with good reports from both clients and peer support workers, who largely found their work very fulfilling – it did find common issues for peer support workers, including excessive workloads, lack of supervision, and lack of training. These issues seem to increase in rural areas, where peer support workers are more likely to be volunteers, to have weaker support networks and boundaries – and are more likely to suffer from burnout.
The informal relationship crucial to peer support working can also make establishing boundaries difficult. One respondent in Gruhl’s study explained, “I had to draw the line with some members. I have seen them at my door and if I’m not feeling up to it, I just won’t answer my door.”
Other problems can come into play when it comes to working with the clinical team. They include their previous negative experiences with the health care system, and being treated as lesser by clinical colleagues. There can also be concerns around peer support workers attending team meetings and maintaining client confidentiality.
On the other side of things, peer support workers worry they’ll lose their edge after working with a team for awhile. “The main thing is about sustaining your peer role, how do you sustain that peer perspective, and not just drift towards a clinical framework,” says Kidd. “Many peers talk about that at times being a challenge.”
Finally, peer support has some of the same tensions as complementary and alternative medicine. Some groups feel that it should be a replacement for the traditional health care system, while others see it as an addition to it. Susan Inman, whose daughter has schizoaffective disorder, has been outspoken about her concerns. “I see families who tell me that peer workers have negatively impacted their family members who have previously been stabilized and who then were persuaded that their meds weren’t necessary,” she says.
Grenier says he’s aware of these opinions. “In 2010, I would say two out of three peer support workers I met were people who really harboured some negative views around the system. Now I think it would be less than one in five.”
But the pros and cons of medication shouldn’t be discussed by peer support workers, according to both the MHCC and PSACC. “ We are all for self-empowerment, but to a limit. We do not endorse that anti-psychiatry, anti-medication stance,” says Stephane Grenier, president of PSACC. “If the issue of medication comes up, the peer supporter simply needs to say that’s interesting, I think you need to talk to your doctor about that.”
In general, though, teams who’ve worked with peer support workers are supportive of using them. “They can demonstrate that they have an understanding – this role where they’re half a step away from us, and they can have a different conversation with clients, is really helpful,” says Kidd.
“Clients say talking to us is like a breath of fresh air,” says George Mihalakakos, who works as a peer support worker at CAMH. “We’re able to disclose about our own stories, and to talk about the practical aspects of getting on with life.”
*Name has been changed