Stop Blaming Me for my Daughter's Mental Illness

An article posted on April 12th by The Huffington Post - Canada:

By Susan Inman (pictured)

As the parent of someone with a severe schizoaffective disorder, I'm used to being viewed with suspicion. Sometimes the pathologizing gaze occurs in unexpected places. Following the publication of an article I wrote for B.C. Teacher about the importance of educating staff in schools about mental disorders, a fellow teacher asked me if I knew what we'd done to cause my daughter's illness.

The unjustified suspicion of mental health professionals can be even more damaging. When we took our floundering teenage daughter to a credentialed counseling psychologist, we knew nothing about severe mental illnesses. As it turned out, neither did she. Her training included no material on psychotic disorders. Instead, it focused on psychodynamic theories, which look for the causes of current problems in people's early childhood experiences. Her misguided assumptions, fed by her training, led to chaos in the early years of our daughter's illness and to an unnecessarily long and dangerous psychotic episode.

Even with recent decades of robust research in neuroscience, parental caregivers of people with psychotic disorders soon learn that their interactions with the mental health system will be filled with blame. Many mental health clinicians in Canada, like our daughter's counselor, have had no science-based training on schizophrenia or bipolar disorder. Too often their interactions with families weaken the bonds that the illnesses have already frayed.

Psychiatry, for most of the 20th century, used the theories of Freud, which were never based on evidence-based research, to develop elaborate ways of blaming parents for schizophrenia. The Canadian Psychiatric Association now explicitly describes schizophrenia as a treatable brain disorder that is not caused by poor parenting.

Our relationship with our daughter's psychiatrist has been extraordinary. I believe it is responsible for her unexpected recovery. When the psychiatric team at Vancouver's St. Paul's Hospital first met her, she was one of the most severely psychotic teenagers they had ever seen. From the time that one member of this team, our daughter's current psychiatrist, began to work with her, he listened carefully to our input as we navigated the arduous path to her stability.

Even with this history of mutual respect, my husband and I were stunned recently when we were discussing strategies for managing any difficulties that might emerge during an upcoming trip. He stopped the discussion, looked at us, and said, "You guys are such great parents!"

I'm immersed in a community of parental caregivers in Vancouver and have been asking if anyone has ever been told anything like this. The answer is, "Never." These friends, who constantly inspire me with their energy, dedication and resourcefulness in advocating for their struggling children, find it hard to imagine hearing this kind of supportive response. Instead, my question is usually greeted with yet another account of the wounding of families by the mental health system.

Some parents do receive much-needed support from their own family physicians, who also provide primary healthcare to their often unstable sons and daughters. For many years, both my husband and I have freely vented, grieved, and tried to problem solve with the informed and compassionate help of our family doctor.

In recent years, the Canadian Psychiatric Association and the College of Family Physicians of Canada have begun an active collaboration including an annual Shared-Care conference. Much of the focus has been on helping family physicians become more knowledgeable in responding to the serious mental illnesses they are increasingly being asked to manage.

The upcoming Shared-Care conference in Vancouver offers richly informative sessions for family physicians. However, I don't see any sessions that provide family physicians opportunities to share their often considerable expertise in helping parents survive their daunting tasks. Fortunately, this kind of conference does invite informal communication on just these kinds of overlooked topics. Since family caregivers for people with severe mental illnesses save the healthcare system money, new ways of supporting them are well worth considering.

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Suppressing Schizophrenia

An article posted yesterday by TheTyee.ca:

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

By Susan Inman (pictured)

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.

To read the entire article, please click here.

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Also see:

Mental Health Strategy for Canada - DRAFT (June 3, 2011)

United front on mentally ill urged

An article published in the July 19th edition of the National Post:

By Joseph Brean

Canada needs a "dynamic, broadly based social movement" to improve its citizens' mental health, a "whole of government" approach that unites everyone from political leaders to "experts by experience," says a national strategy five years in the making.

The goal, says the Mental Health Commission of Canada (MHCC), should be a "cultural shift toward recovery," which favours real improvement over ideal cure, and is informed by "multiple sources of knowledge," including the traditions of restorative justice and the hard-won wisdom of people in recovery.

The 37-page draft strategy document, obtained by the National Post, also seeks to reduce the stigma of suicide; calls for an end to "seclusion and restraint" of psychiatric patients; and demands that, in criminal-record checks, police stop disclosing information about people they have driven to hospital in a mental health crisis.

"This practice inhibits people's ability to volunteer or get a job, and should be stopped," reads the report, Mental Health Strategy for Canada - Draft, Not For Circulation. A final version is expected to be presented to the MHCC's board in October, and released publicly next year.

The strategy acknowledges the federal government's arm's-length role in healthcare delivery, but argues that mental health is not purely a health issue, as it also involves criminal justice, housing, finance and child services. The MHCC's broad solution is to "shift upstream and across sectors" by taking a "whole of government" approach, in which actions are nationally co-ordinated, and "leadership [is] located at the highest level possible within government and the bureaucracy."

Clinically, the strategy calls for a "genuine partnership" between caregivers and people with mental illnesses, who should be offered "self-directed care-funding initiatives," so they can "directly manage part of their social service and health budgets."

"The expertise gained from lived experience should be complemented by professional expertise, not dominated by it," the report reads.

"Not only will this change in the distribution of power within the mental-health system benefit users of services, it will also create a more positive context in which mental health providers can deploy their skills, experience and knowledge."

Examples of self-directed care choices might include art or music therapy, or training in mindfulness techniques, said Howard Chodos [pictured], special advisor to the MHCC.

Finding the right balance, he said, "involves the skill and art of medicine as much as it does the science.

"Unfortunately, in mental health there are no blood tests and there are no medical tests which tell you what illness you have and what treatment to use," he said.

The strategy also calls for better training for so-called "gatekeepers" - teachers, doctors, clergy, police and prison staff - to help them recognize and react to warning signs of suicide, and to promote mental health.

This focus on prevention and health promotion is a target of early critics of the report, who say it offers little to people with serious mental illnesses, such as schizophrenia or bipolar disorder, which cannot be prevented by social policy, as they are organic diseases of the brain.

They cite New York State's Office of Mental Health as a cautionary tale of a system in which the "worried well" gained support at the expense of the truly sick.

Susan Inman, a Vancouver advocate for the families of people with serious mental illnesses, whose daughter recovered from schizophrenia, said the strategy's deference to lived experience will make things worse for people who are so mentally ill they are incapable of realizing it - a condition known as anosognosia. She fears the emphasis on personal empowerment will make involuntary treatment almost impossible.

"This plan is really about mental wellness," she said. "People with serious mental illnesses are ignored."

Mr. Chodos said research shows a range of factors can increase or decrease the risk of even the most serious mental illnesses.

"We do not yet know that there is anything more than a genetic predisposition," he said.

"Prevention [in the strategy] is not only prevention of onset, but also the debilitating consequences of it."

He gave the example of homelessness, often associated with schizophrenia and substance abuse, as an area where social policy can, in fact, prevent the worst of a mental illness.

He said another is cannabis use among youth, a known risk factor for schizophrenia.

The MHCC, which was established in 2007 by Prime Minister Stephen Harper on the recommendations of former Senator Michael Kirby, has a twin mission. Erasing stigma has always been the long-term goal, but this formalized national strategy is the immediate plan.

The strategy comes at a crucial moment for psychiatry, not just in Canada but globally, as the discipline's diagnostic manual undergoes a thorough revision.

There is also a strong climate of suspicion about the role of drug manufacturers in the proliferation of psychiatric drugs, and about the spike in diagnoses of childhood behavioural disorders.

jbrean@nationalpost.com

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Also see:

An open letter to the Mental Health Commission of Canada - A response to their draft Mental Health Strategy for Canada

Identification of a biological signature for schizophrenia in [blood] serum

A 12-Step Program For Canada

Serious Mental Illness, Care-Giver Stress and the Mental Health Commission of Canada

An article posted on June 24th by Huffpost Canada:

By Marvin Ross

Caring for a family member with a serious mental illness (mainly schizophrenia and bipolar disorder) is often extremely stressful for families; it impacts them financially, emotionally, socially and physically.

Hoping to improve the situations for the tens of thousands of families in this situation, a group of 45 B.C. families sent suggestions to the Mental Health Commission of Canada with the hope that the Commission would adopt them and help support families. Their suggestions were sent via e-mail and were widely distributed.

The Commission had previously stated they wanted to hear from stakeholders. But, Susan Inman [pictured], a Vancouver teacher, writer and parent said in an e-mail to me, "We didn't feel very reassured" that they are listening. "We are still hoping that Ms. Bradley will respond to our suggestions."

Ms. Inman is the unofficial group spokesperson and Louise Bradley is chair and CEO of the commission.

The commission defines itself as "a catalyst for transformative change" with the goal to, among other things, "improve services and support." The organization arose from the report Out of the Shadows at Last -- Transforming Mental Health, Mental Illness and Addiction Services in Canada in 2006. It received federal funding in 2007.

Ms. Inman further stated in her e-mail:

"I don't think that family caregivers for people with psychotic disorders are feeling hopeful when we see the limited agenda promoted by the Family Caregivers Advisory Committee (FCAC) on the Mental Health Commission of Canada's website. The group pointed out that the only research project the FCAC listed, a family mutual assistance strategy, has already been well researched in BC.

The group also pointed out that, by selecting this as their one project, the FCAC is communicating that "the message that what is most important is for caregivers to just learn how to take better care of each other. Meeting the needs of family caregivers involves much more careful examination of many systemic issues."

One suggestion is to research the quantity and nature of family care-giving for people with serious mental illnesses and to estimate the value of the unpaid family labour in terms of decreasing health care costs. The group also believes that the Commission should advocate to raise the standards of programs training mental health professionals to include science based approaches to understanding severe mental illnesses. Many professionals are not knowledgeable about advances in brain research and often still believe that families cause these mental illnesses. Inadequately trained mental health professionals aren't equipped to refer to early intervention programs -- a new best practice being implemented across the country. The group would like to see more collaboration between families and professionals.

One area of growing scientific understanding is of anosognosia -- the neurologically based inability of someone who is ill to understand that they are ill. Research shows that 40 to 50 per cent of people in the grip of a psychosis suffer this and it often results in treatment refusal.

Family caregivers wish to see the Commission recognize this problem and to recognize the need, at times, for involuntary treatment. Many have ill relatives who look to their families to ensure that they are not left untreated and allowed to deteriorate in case of a relapse. Families need help to gain access to legal means to be able to fulfil this responsibility.

Parents often still continue to experience the destructive impact of unjustified blame for these disorders -- a holdover from the non-research based and unscientific theories that dominated psychiatry and psychology in the past. These parents would like to see the Commission openly acknowledge and address this.

Finally, the language in Commission documents suggests that severe and persistent mental illnesses, like other mental health concerns, may be caused by adverse social circumstances. The Commission should openly support a science based understanding of these neurobiological disorders. As well, it should actively promote the brain based research that can lead to better treatments and, ultimately, cures. Currently, on the Commission's Science Advisory Committee site, there are no proposals for encouraging ongoing scientific investigation of any kind of mental illness.

The group has yet to hear from Ms. Bradley. They did receive a response from Ella Amir, Chair, Family Caregivers Advisory Committee (FCAC). She stated in her e-mail reply to the group, "One of the projects the FCAC has proposed focuses on the same concerns you describe... if approved, this proposed project will address yours (and our) concerns," Since Ms. Amir didn't describe any of the proposed projects, Ms. Inman didn't feel reassured that the FCAC is moving in the right direction.

Ms Amir did add that she was sure that Ms Bradley would also reply. When contacted, Kyle Marr, a spokesperson for the Commission, said he understood their concerns about not having any reply yet but "due to the depth of the email and the issues that it addressed, careful consideration is required".


Follow Marvin Ross on Twitter: www.twitter.com/dysdads

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