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
The comments section is closed.
Is there a peer support group in Edmonton ? Ann
I think that using all supports that are available, then whittling them down to the “ones that work for you”will be your best approach, what works for me may not necessarily work for you, this can be all part of the recovery process and do not forget that as tough as it is “relapse” is part of recovery, trial and error, the saying goes “take what you need and leave the rest there”. Do not become part of a siloed mentality. We all have something to offer, we need to learn to listen and listen to learn.
The wide-spread use of Peer Support, here in Canada and around the world, is ample testimony that it’s a valuable compliment to conventional mental health care methods.
Devising and implementing Standards of Practice is an important step in the growth of Peer Support and verifies its place in the mainstream. These standards were developed following extensive consultation across Canada and represent the best thinking from the available knowledge base.
The certification of individuals (who meet the standards of practice) and the accreditation of training organizations (with an aligned curriculum) is a framework that helps to safeguard against the consequence of misapplication.
It is true, however, that Peer Support has limitations and that some tension remains between peer support and clinical approaches.
Our Standards of Practice deliberately focus on select key aspects of Peer Support, which ensures it functions as a healthy compliment to clinical care. However, the absence of some specific knowledge components in our overall requirements does not mean they’re unimportant. Rather, it is simply a deliberate choice to focus on other aspects that are core to the good and healthy practice of peer support. The historical context of the peer support movement is an acknowledgement that these practices continue to evolve.
While we have and will continue to value the input from all individuals who have a stake in this work, we do not support the view that peer support is an alternative (to clinical care). While some may choose to access Peer Support on its own due to their personal situation or preference, our vision is quite clear from that perspective – specifically, that Peer Support is not intended to be an isolated practice of care.
Our vision is that Peer Support can effectively complement traditional methods of mental health care. We actively look to work with those who share this vision. As we grow and expand, we continue to employ due diligence in this field, and I expect that adjustments and enhancements will be made along the way.
Stéphane Grenier
President & Chair of the Board
PSAC Canada
I wasn’t previously aware of Healthy Debate and because some readers might want to further investigate issues raised in this article, I have some suggestions:
1. It’s troubling that as Stephane Grenier reports, so many peer support workers have negative views of the mental health system. Almost everyone I’ve met who has been through Vancouver’s Early Psychosis Intervention program has positive things to say about the help they received. It may not be as easy to hear from people like this since the peer movement is dominated by psychiatric survivors who, by definition, didn’t have a positive experience and didn’t need psychiatric help. It’s very hard to hear from people with mental illnesses who discuss being helped by psychiatry. One place to start is with Erin Hawkes and Natasha Tracy, two Canadians with serious mental illnesses who discuss how psychiatry has helped them; both of these women’s articles have been vociferously attacked by psychiatric survivors.
2. The article reports that while not recommending the inclusion of any science based information about mental illnesses in programs training peer workers, the PSACC tests for knowledge about the “historical and social context” of peer support. Can we see this test? Can we see any curriculum that is used to teach this topic? Does the historical context discuss the ways that the hundreds of peer run agencies in the US have failed people trying to live with severe psychotic disorders? Does it discuss that these agencies often refuse to include people with these disorders since they aren’t ‘taking responsibility’ for their illness? Does it discuss the impact of exposing vulnerable people who haven’t had good psycho-education about their illness to a philosophy that denies the existence of mental illnesses? The people with schizophrenia who attend groups run by the Psychiatric Survivors of Ottawa won’t find any information about their disorder on their website; in fact, I didn’t see the word ‘schizophrenia’ mentioned anywhere. It’s hard to learn to manage the illnesses with which someone has been diagnosed and the disturbing symptoms that may accompany it, when the existence of the illness isn’t even acknowledged.
3. There is a reference in the article to a concept that we often hear in the alternative movement that somehow psychiatry and approaches to treating severe mental illnesses that rely on a medical base are telling people with schizophrenia and bipolar disorder that “your life is over.” I don’t see that occurring. Nor do I see any psychiatrists working with this population who believe that people just need to be given a pill. They understand the value of good psychosocial rehabilitation services. However, we all need to ensure that these services don’t undermine the medically based treatments that many people with the most severe illnesses need in order to recover. It’s good to read in the article that it isn’t the intention of PSACC to promote anti-psychiatry. Unfortunately, the organization decided to build its guidelines on the beliefs of the anti-psychiatry psychiatric survivor movement. Forcing peers to be trained in the beliefs of this movement isn’t helpful to them or to the people they serve.
I appreciate the link in this article to my recent blog about problems with the MHCC’s guidelines for training peer support workers and problems with some presentations in the upcoming PSACC conference.
I strongly support the use of peer support workers, but am very concerned about the choices that have been made in the MHCC’s guidelines for developing and promoting programs in Canada. Although it may not have been the intention of some involved to further entrench the alternative movement in the delivery of mental health services in Canada, the current guidelines make this the very likely outcome. As I mention in my article, the training guidelines, for instance, have carefully avoided recommending that programs provide basic information about mental illnesses. Although the MHCC has recommended that the public learn basic information via the Mental Health First Aid course, this training program decided not to include this common sense addition. Many in the alternative movement, whose ideas seem to have dominated the construction of the guidelines, don’t believe that mental illnesses are actual illnesses, so they resist providing peer workers with essential knowledge about the people with whom they will work.
This article quotes a group, the Psychiatric Survivors of Ottawa, which is offering two sessions in the upcoming conference. Just to be clear, the term “psychiatric survivor” doesn’t refer to people who have survived the development of a mental illness. It refers to people who believe they have survived being exposed to psychiatry. Although their website (and their funding by a local health authority) make it seem like this organization offers help to families, I fear for any people who are trying to help a family member who has developed schizophrenia. The website doesn’t acknowledge the existence of this severe disorder and certainly doesn’t offer any education about this illness to these families. The group’s presentation at the conference will help families learn not to be “co-dependent.” There is no research demonstrating that “co-dependence” is a problem for families coping with schizophrenia or bipolar disorder. There is, however, plenty of anecdotal evidence available by looking at relevant websites that the alternative movement is dominated by “psychiatric survivors” whose problems stem from abusive parents. It’s troubling that federal and provincial funds are being used to support the claims of these groups to offer meaningful help to people who actually have psychotic disorders and the families who provide much needed assistance.
In Canada, various agencies using peer support workers have often developed their own helpful training programs and provide useful supervision. These kinds of programs can be undermined with the development of the MHCC guidelines for peer certification and the trends evident in the choice of sessions for the conference. I hope people will take time to click on the link in my article to an interview with peer leaders in the US. Instead of learning from serious mistakes that have been made elsewhere in the development of peer programs, Canada is setting itself up to make the same mistakes.
The alternative movement’s influence on care for people with the most severe mental illnesses hasn’t been benign. Its influence on policies have led to huge numbers of people with psychotic disorders remaining untreated and ending up homeless and incarcerated. In this article, I discuss the problems with over-empowering the beliefs of the alternative mental health movement:
http://www.huffingtonpost.ca/susan-inman/mental-illness-policies_b_8538144.html
From what I can see the Psychiatric Survivors of Ottawa Family Support groups are organized, facilitated and attended by family members and loved ones of those experiencing mental illness. Are you suggesting that these family members are not capable of providing support to other families? That other families shouldn’t have the right to share the relational difficulties and traumas that can sometimes result from supporting a loved one with a mental illness? Are you also suggesting that “psychiatric survivors” issues all stem from adverse childhood experiences and none of them meet the criteria for what you yourself would consider a severe mental illness?
The video you mention has two people with lived experience of mental illness discussing how dehumanizing and disempowering forced treatment can be and promoting the value of community based care including that provided by Assertive Community Treatment teams. Which parts of what they were saying do you find to be so alarming?
Are you also aware Todd about another Ottawa based group called Mental Illness Caregivers Association of Canada. This is an organization started by families which gives support to other families. Here is some information about them.
“MICA is a non-profit organization comprised of family members, caregivers and consumers, incorporated as an association in November 2008. MICA is committed to assisting caregivers and their members manage the effects of serious and persistent mental illness and/or addictions through education, guidance and support including how to navigate the mental health and/or addiction systems”
I believe this group much like the family organization that I belong ‘Home on the Hill Supportive Housing” began to address the profound need for help to families who are supporting seriously mentally ill loved ones.
Both these organizations began because currently there is little in terms of publicly funded family support programming based upon evidenced informed knowledge about these profound illnesses.
I believe there is a greatneed in the city of Sudbury for Peer Support Workers. I have “lived experience” with family members and would like to know where would I apply as a volunteer or apply as a worker?
Paul, you will find many peer workers in Sudbury at NISA, Northern Initiative for Social Action. We are now in our 18th year of operation and we have programming in wellness and recovery, creative expression and peer support, as well as occupation-based programs. We do have a family support group, and we’d be happy to talk to you about it. Here is our website: http://www.nisa.on.ca Looking forward to hearing from you!