By Susan Inman
 

​Having written and spoken about the negative impact of my ignorance about schizophrenia when my daughter’s illness was evolving in front of us, I continually learn that many other families have had the same experiences.  Often this ignorance led to unnecessarily longer durations of untreated psychosis (DUP) and longer DUPs lead to worse outcomes.

The easy availability of basic mental illness literacy campaigns would have also helped families adjust more easily and provide better help once the illness was identified. As well, it could help the person with the illness more quickly adjust since, except for Early Psychosis Intervention programs, there is a widespread lack of adequate psychoeducation for patients. Also, if the general public were better educated about these disorders, then friends, extended family, neighbours, teachers, employers, and policy makers would be in better positions to offer the best support.
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A major impediment to introducing mental illness literacy programs is the notion that this information creates stigma against people with schizophrenia. Some researchers believe there’s a link between the increased attribution of biology in some mental illnesses to an increase in stigma. I see this argument as resting on the assumption that the public has a solid understanding of why mainstream psychiatry thinks of schizophrenia as a brain disorder. I haven’t found this understanding to be the case. When the public does get essential information about anosognosia, as I point out in this article about responses to Marcus Gee’s accounts in the Globe and Mail describing encounters with mentally ill people, they respond with much more empathy. Gee’s article teaches the public about anosognosia, the brain-based inability of many people in psychosis to realize that they are ill. The public needs to understand that disturbing behaviour from people trapped in psychosis isn’t freely chosen. Given the quantity of time and money put into anti-stigma campaigns, it’s very troubling that key information like this hasn’t been provided to the public. I believe this is related to a core belief in the powerful efforts by those who want to stop access to involuntary treatment for psychotic disorders which is that protecting human rights means that people must always be allowed to choose if they want any psychiatric treatment.


​The most powerful argument against attributing stigma to mental illness literacy campaigns is this one from psychiatrist/researcher E. Fuller Torrey. It connects the rise in stigma with the rise in the public’s exposure to people with severe untreated mental illnesses and the increase in violence associated with lack of treatment.

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I think it would be valuable for researchers to examine the role of lack of public mental illness literacy campaigns in preventing families and others from having the best responses to the development of this illness in someone and the best evidence-based approaches to then pursue. A much-needed related topic deserving investigation is the need for clients to have access to good professionally facilitated, group-based psychoeducation about their disorders. I often hear in support groups how valuable it was for families to take the free family psychoeducation programs offered in BC by the BC Schizophrenia Society and Pathways Serious Mental Illness Society and how they wish their family member had something like this.

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Researchers could investigate what, if any, psychoeducation programs (besides in Early Psychoeducation Intervention programs) are available for clients. A related topic needing attention is the role of antipsychiatry beliefs in people not maintaining treatment with antipsychotic medications they need and how often exposure to these beliefs comes from within the mental health system or from exposure to these ideas in post-secondary education systems. This link is to a study group connected to the Hearing Voices Network funded by the local health authority. It has focused on the beliefs of people like Will Hall who specializes in getting people off of antipsychotic medications. Unfortunately, leaders of the peer support movement successfully lobbied for programs training these workers to not include any information about disorders like schizophrenia; at the same time, this training includes the idea that in order for people to recover, they must always choose if they want treatment.


I believe there is too little systemic support for people who need to take antipsychotic medications for schizophrenia. I’ve often wondered what the impact could be on them as well as on the public and service providers who haven’t had adequate education about psychotic disorders, if they were exposed to the extraordinary Scandinavian research on people diagnosed with first episode schizophrenia. This research tracked 8000 patients over 20 years and found that those who continued to take antipsychotic medications were twice as likely to still be alive.

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This information should be part of public mental illness literacy campaigns since it could reduce the high number of people with schizophrenia who don’t maintain treatment with medications that they need.
 

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