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Suppressing Schizophrenia

Schizophrenia is invisible in Canada's new mental health strategy.

Susan Inman 29 Aug

Susan Inman's memoir, After Her Brain Broke, Helping My Daughter Recover Her Sanity, has been recommended by NAMI and EUFAMI, which are the largest organizations in the world advocating for family caregivers of people with severe mental illnesses.

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Up to half of people with schizophrenia aren't aware they are ill and can be treated.

It is hard to imagine that life could get any harder for individuals living with schizophrenia (one per cent of the population) and the families who provide support to them. However, the controversial choices made by the Mental Health Commission of Canada (MHCC), in the latest draft of the new Mental Health Strategy, make it likely that their situations can actually get worse. These choices, which were not apparent in any earlier MHCC documents, are not receiving the public scrutiny that is needed because this draft is not available for the public. This draft, which was shared with a very small number of people, is currently being polished, and the Canadian public will not see it until it is unveiled in early 2012.

Through both what the strategy suggests and what it fails to support, this plan represents decisions that are dangerous to the well being of people with schizophrenia.

None of the MHCC documents have provided even the most basic information about this often misunderstood mental illness. For instance, the public has never learned that 40 to 50 per cent of psychotic people don't understand that they are ill and so have no reason to ask for or consent to treatment. Nor does any of the educational material promoted by the MHCC in its Mental Health First Aid program mention that 90 per cent of people with schizophrenia who stop taking their medications will have a relapse. A clearer understanding of this neurobiological disorder can help people understand the mental health policies that are most appropriate.

One major problem with the strategy is its approach to legal issues. The new draft strategy promises funds for court challenges to human rights abuses. The public deserves to have open access to this document to find out exactly what the MHCC intends with this action. Since the MHCC has allied itself with groups opposed to involuntary treatment of psychotic people, it is likely that federal funds could be made available to challenge involuntary treatment orders that have been made under various provincial mental health acts. Some human rights activists insist that no one should be treated for psychosis unless they choose this option; however, the notion of choice does not make sense in this context because people experiencing a profound psychosis do not have access to their rational thinking processes. They are not able to act in their own best interest, which is why mentally ill people frequently end up homeless or, increasingly, in prison.

Limits to peer support

Another major problem with the strategy is the decision to turn over more responsibility for providing mental health services to peer support organizations. Opposition to anti-psychotic medications and to psychiatry in general is a major feature of some peer-run programs. People with some kind of mental health problem who self-identify as "consumers" (of mental health services) or as "psychiatric survivors" or as "people with lived experience" have played an active role in shaping the new draft. A common belief among many of these groups is that mental illnesses are not real illnesses, and that the use of diagnostic terms is oppressive. Therefore, it becomes impossible to know if people who claim the right to represent those with schizophrenia have ever actually been diagnosed with and had to learn to live with this disorder themselves.

In reading the literature produced by some of these groups, in hearing people who identify themselves as psychiatric survivors speak, and in having conversations with them, I'm often struck by how many of these people have suffered from terrible parents. Clearly these are people who have endured intense psychological problems and some have been inappropriately prescribed anti-psychotic medications. However, there seems to be an entrenched unwillingness to examine the vast research demonstrating the benefits of medication to countless people who actually do have psychotic disorders.

A brain disorder that is treatable

Anti-psychotic medications have given my daughter back her life. People like her, who understand that they have a treatable brain disorder, are not well represented in the psychiatric survivor movement, which is somehow assumed to have the right to represent their interests. My daughter and her friends depend on their families to ensure that, in case of a relapse, they are not left to flounder in an untreated psychosis. They have a solid, science-based understanding of their disorders and have learned how best to manage them from a perspective that includes this information. This is an approach to mental illness that is antithetical to the beliefs of many of these groups. Perhaps this is the reason the strategy never mentions the necessity of or even the benefits of this kind of science-based education in peer-run programs designed to help people cope with their disorders.

In transferring increasing responsibility for delivering mental health services to these groups, the strategy accepts the rights of these groups to abide by "voluntary standards." What does this mean? And will these more inexpensively supplied services now be seen as adequate substitutes for the more expensive services of highly skilled clinicians, which remain unavailable to people with schizophrenia?

I completely support the idea that people who have schizophrenia and have learned to manage their disorder can make many valuable contributions to people who are still struggling. I deeply appreciate the work of Vancouver's Peer Support Program, which is run under the auspices of Vancouver's mental health services. The program carefully screens applicants and provides a lengthy training period which includes science-based approaches to understanding severe mental illnesses. These mental health workers offer individual support to people struggling to rebuild basic life skills like taking the bus, using services at local community centres and going for coffee. They certainly are never allowed to suggest that people should stop taking their medications. The ideas informing the creation of this program, however, are not the ones with which the MHCC is allying itself.

Besides making decisions that put the basic safety of people with schizophrenia at heightened risk, the strategy ignores their most basic unmet needs. People with schizophrenia lack adequate access to psychiatrists. Canada has too few psychiatrists and many psychiatrists restrict their practices to working with people with less severe illnesses. As well, the decreasing number of acute psychiatric beds means that even people who know they need help are unable to receive it. The MHCC is not actively lobbying for reversing the trend to reduce the number of acute psychiatric beds nor is it advocating for the training of more psychiatrists. The responsibility for caring for people with untreated or inadequately treated schizophrenia will continue to reside with families.

Blaming the families

If the new policies do lead to even more problems with untreated schizophrenia, the MHCC's new annual report, which is available to the public, provides explanations. The message from the Family Caregivers Advisory Committee, the group that was supposed to, but has failed to, represent family caregivers' perspectives, maintains that it is the families' lack of skills with communication and problem solving that leads to problems for people with these severe illnesses. This assertion, based on faulty interpretations of relevant research, completely ignores the deep systemic flaws that lead to the poor outcomes for so many people with schizophrenia. There is robust new research demonstrating that the increasing number of assertive outreach programs in 44 U.S. states, which have the authority to mandate treatment, lead to reduced hospitalization, violence, homelessness and victimization. This kind of widely recognized research should be highlighted by the MHCC in its efforts to educate the public about the policies needed to address severe mental illnesses; instead, it is ignored.

The placing of blame on families makes another choice of the MHCC clearer. Family advocates have been lobbying the MHCC to directly confront the stigma that parents of people with schizophrenia experience and to address the ways this stigma limits them in their ability to be effective caregivers. They expected this would be a logical choice for the MHCC because anti-stigma campaigns have been at the core of their work. However, instead of acknowledging this unjust and unfounded stigma, the MHCC's new annual report leads the public to assume that an increase in problems can be attributed to the lack of parental skills.

Rather than educating the public about the state of knowledge about the development of schizophrenia, which is related to an interplay of genetic and environmental factors, the environmental factors for which there is credible research are never accurately explained. Current neuroscience research continues to identify environmental factors like perinatal problems, birth complications and head injuries as contributing to the development of schizophrenia. Although the MHCC frequently uses the term "mental illness prevention," it fails to alert the public to an environmental factor about which there is now significant research; because schizophrenia is linked to mothers who have the flu during pregnancy, women contemplating pregnancy should be actively encouraged to get flu shots.

Needed: Better professional training

Besides deciding not to address the damaging stigma that family caregivers experience, there are other key ways that the MHCC fails to suggest actions that are essential. The MHCC has decided to neither report nor respond to the lack of standards in programs training a variety of mental health professionals. Many programs do not offer or require science-based curriculum on severe mental illnesses. This need for improving the standard of education for all mental health professionals has been at the forefront of campaigns by family advocates in their unsuccessful efforts to influence the direction of the MHCC. Although the MHCC mentions the need for some kind of early intervention programs, the underfunded early psychosis intervention programs that exist in Canada depend on well-educated clinicians to make the necessary referrals. Substantial research demonstrates that early intervention in psychotic disorders leads to better outcomes. This research is not referring to teaching families better problem-solving skills but, rather, ensuring that individuals receive treatment with anti-psychotic medications early on in their development of psychosis.

Improving the education of mental health professionals would also address one of the biggest obstacles that family caregivers confront. Because of out-of-date training, families who try to support ill family members are often blocked by clinicians who blame them for these disorders. Though the MHCC documents mention the marginalizing of family caregivers, the draft does not address the major factor that will continue to produce it. According to Dr. Jon Fleming, the director of Postgraduate Education at UBC's Department of Psychiatry, programs training psychiatry residents in Canada no longer teach that the development of schizophrenia has any connection to parental behaviour. However, parents still confront psychiatrists educated under earlier, now discounted paradigms. They also must deal with other clinicians trained in programs that have been allowed to avoid educating them about the science-based approach to understanding the development of schizophrenia. The MHCC could have chosen to advocate for up-to-date science-based professional development for all mental health workers; their failure to do so reveals a deep flaw in their vision of the kind of foundation that should inform Canadian mental health practices.

This flawed vision has led to another omission in the strategy and in the other MHCC documents, which is the lack of acknowledgement of the breakthroughs in neuroscience and their potential for shaping mental health policies. Dr. Thomas Insel, the head of the US National Institute of Mental Health (NIMH), the world's largest research organization devoted to researching mental illnesses, refers to schizophrenia as a brain disorder. Under his leadership, the NIMH, which in previous generations was dominated by Freudian beliefs, now funds vast numbers of research projects leading to better treatments.

Ignoring a promising approach

One of these better treatments being promoted by the NIMH is cognitive rehabilitation programs for people with schizophrenia. Cognitive losses, such as difficulties with concentration, memory, and problem solving, are a common symptom of schizophrenia and the NIMH states that it is these symptoms that cause the greatest amount of disability among people living with this brain disorder.

Despite active lobbying by family caregivers for these programs, the strategy does not acknowledge cognitive losses, promote research on it, or suggest funding the cognitive remediation programs that have already produced promising results. In fact, the MHCC's Knowledge Exchange Centre has so far refused to become the much-needed repository of information about research on cognitive remediation techniques and about the few Canadian programs that are trying to address this crucial problem. The draft strategy has dozens of references to its promotion of recovery but, disappointingly, the MHCC completely ignores the cognitive problems that constitute one of the biggest obstacles to this recovery for people with schizophrenia.

The ignoring of these neuro-biologically related problems stems from the broader philosophical foundation upon which the MHCC has decided to build its plan for the future of mental health care in Canada. Rather than educating the public about and responding to the problems associated with schizophrenia , the new strategy focuses on improving the level of mental wellness of every Canadian and combating stigma around mental health problems. This approach is predicated on a common assumption in which mental wellness is thought to be determined by various social circumstances and, if adversity caused by racism, sexism, poverty, homophobia, abusive parenting, and other social ills is addressed, then mental health problems and serious mental illnesses will be reduced or disappear. The scientific advances which make these theories not just irrelevant in relation to schizophrenia but actually destructive are ignored. Also ignored is the likelihood that the public's stigma in relation to schizophrenia will only increase as they have to confront more people with untreated mental illnesses wandering the streets.

Families shut out of strategy

Some academics like Neree St. Amand, a University of Ottawa social work professor and MHCC Family Caregivers Advisory Committee member, believe that schizophrenia is an unnecessary label and that people given this diagnosis should not be led to think that psychiatry or anti-psychotic medications can provide help. His beliefs, and the outrage of actual family caregivers for people with schizophrenia at being represented by him, were well explored last year in the National Post article "Mental Block."

Although this article led to a meeting of long-time family advocates with MHCC administrators, almost none of the suggestions made by families appear in the new strategy.

In looking over the new strategy, Dr. Bill Honer, the Jack Bell Research chair in schizophrenia at UBC, noted that the word "schizophrenia" never appears. Neither does the word "psychiatry." For family caregivers who want the public to be better educated about this disorder, these omissions are signs of a dangerous future.

The impact of the MHCC's lack of strong support for the role of science in understanding and responding to severe mental illnesses can be seen in how it is managing the access or lack of access to relevant information. Although its links site on its website encourages suggestions for useful organizations, the managers of this resource have so far refused to add a link to the National Institute of Mental Health, which supplies the most extensive and up-to-date information on these disorders. However, if confused families of people who have developed schizophrenia look for guidance in this collection of websites and select the first website listed under "Families and Friends," they are directed to the Family Outreach and Response Program. In this program, developed by an anti-psychiatrist activist, they can learn that although their family member may be experiencing "what the medical community calls 'the first episode of psychosis,'" families can learn other ways to understand what may be a "spiritual emergency" or "existential crisis."

The failure of the Mental Health Commission of Canada to thoroughly support a science-based approach for understanding and responding to schizophrenia is not just a disappointment for people who live with this catastrophic illness and their families. Given the enormous financial and social impact of this brain disorder, the positioning of the MHCC in relation to schizophrenia will have negative consequences for the rest of society as well.  [Tyee]

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