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How Peer Workers Can Hurt People With Mental Illnesses

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A major trend in the delivery of mental health services has been to turn over more responsibility to peer support workers. These workers, living with various mental health problems, can offer support and practical assistance to others who are struggling. I am very much hoping, in fact, that my daughter can eventually do this kind of work. Having emerged from a long, devastating psychotic illness, her warm presence could bring hope to people who are much less well.

However, current trends influencing the beliefs of peer support workers are troubling. Some peer workers identify with the very influential "psychiatric survivor" movement. "Psychiatric survivors" are generally anti-psychiatry; they have "survived" psychiatry. As well, many have experienced abusive parents and this has led to the negative attitudes they too frequently have about the role of parental involvement.

Since many "psychiatric survivors" have been inappropriately prescribed anti-psychotic medications they did not need for their mental health problems, the movement tends to oppose the use of these drugs. However, I see no acknowledgement in this movement, a movement endorsed by some social scientists, of relevant science-based research; the Canadian Psychiatric Association states that 90 per cent of people with schizophrenia will have a relapse if they discontinue the use of anti-psychotic medications.

There are numerous factors that lead many people with schizophrenia to stop taking medications. Many people experiencing psychosis are simply unable to understand that they are ill. This neurobiologically based lack of awareness (or "anosognosia" in the DSM-IV-TR) easily leads to homelessness, victimization, and involvement with the criminal justice system. I have never seen this symptom acknowledged by spokespeople for the "psychiatric survivor" movement.

Currently, the Mental Health Commission of Canada (MHCC), under the leadership of Lt. Col. Stephane Grenier, is setting up a plan to guide the training of peer support workers. Col. Grenier has done excellent work in educating the public about the prevalence of post-traumatic stress disorder in military veterans and the value of peer support in treating it. However, I believe his approach to responding to people with psychotic illnesses is potentially dangerous. In a recent interview Col. Grenier revealed that his program proposes that peer support workers be trained to have a neutral stance about the value of medication.

A key issue in the hiring of an increasing number of peer support workers is that focusing on their use diverts attention from the lack of other critically important rehabilitation strategies. These missing programs need highly trained and more expensive clinicians.

One of the gaps in services is the general lack of access to cognitive behavioural therapy which can help people manage many symptoms that they continue to experience.

Another omission is the lack of programs addressing the common cognitive deficits that people with schizophrenia often develop. Since one per cent of the population has schizophrenia, a significant number of people are impacted by these deficits. The U.S. National Institute of Mental Health (NIMH) states that the cognitive losses associated with schizophrenia are the largest factor that accounts for ongoing disability. These losses include, for example, problems with concentration, working and short-term memory, sequencing of steps to complete a task, and problem-solving skills.

Research into cognitive remediation and the programs that have been developed to address it has been a major focus for NIMH in recent years. However, the topic is largely ignored in Canada. Clients and families wanting help in advocating for these kinds of programs have not found any allies in the "psychiatric survivor" movement. This movement opposes the idea that psychotic illnesses are brain disorders; meanwhile, this neurobiological approach to psychotic disorders is pervasive in contemporary neuroscience.

Unfortunately, the beliefs of the "psychiatric survivor" movement are having increasing influence on peer support workers. Last month my daughter participated in a Wellness Recovery Action Plan program offered by Vancouver's mental health services. On the final day, my daughter was told by the peer leader that they were all there because of the trauma and abuse they had experienced as children and the wounds they suffered by having parents who "were never there for them."

Fortunately, my daughter has had good education elsewhere about her schizoaffective disorder, but we wondered about the impact of this message on the other participants. Given that paranoia is a frequent symptom of psychotic disorders, this unwarranted version of "education" about their illnesses can only further erode the relationships these vulnerable people have with their families. Family involvement is linked to better outcomes for people with psychotic illnesses.

This month the MHCC will reveal its new national mental health strategy. Some of us are looking for support for better funding of the highly skilled services that people with the most severe mental illnesses deserve. And we want to know that the expanding number of peer workers will not be sending harmful messages.