By Susan Inman author of After Her Brain Broke Helping My Daughter Recover Her Sanity
Just before BC’s Oct. 24th election, candidates from the NDP, Liberal and Green parties participated in a debate on mental health services organized by the BC CMHA. Unfortunately, for people concerned about those living with severe mental illnesses like schizophrenia, during the entire two-hour event there was only one fleeting reference to “mental illness.”
There was no mention during this debate of what advocates for the needs of people with severe mental illnesses frequently call attention to such as the shortage of acute and tertiary psychiatric beds, the need for more supported housing, implementation of cognitive remediation programs and focused efforts to improve the ability of mental health staff to cooperate with families. The current BC Freedom of Information and Protection of Privacy Act (see Guide to the Mental Health Act Appendix 13) actually allows for communication between staff and families in order to provide continuity of care; too many staff either do not know about this provision or prefer not to abide by it. Promoting improvements in this cooperation would be an excellent and inexpensive policy position for a political party.
Most of the plans that were presented focused on promotion of mental health especially among children and youth. These were discussed as ways to prevent future mental health problems. The debate’s moderator, Tyee health reporter Moira Wyton, firmly declared that “root causes” of these future problems are abuse and trauma and the evening’s discussion was shaped around these beliefs. Wyton promoted the popular but erroneous notion that mental health problems should be understood as arising from adverse social determinants of health. No-one mentioned the existence of schizophrenia or bipolar disorder or appeared to know that neither of these medical disorders, impacting about 4% of the population, can be prevented.
While there was no acknowledgement of the existence of or the needs of people with severe mental illnesses, threats to the basic safety of this population were actually omnipresent in much of the debate. These threats relate to support for the current vigorous efforts from some advocacy groups to cut off access to involuntary treatment.
Schizophrenia and bipolar disorder frequently involve episodes of psychosis accompanied by anosognosia, a brain based inability for people to understand that they are ill and need treatment. Without this treatment, people are left trapped in psychosis and frequently become homeless, victimized, addicted and, increasingly, incarcerated. Although the streets and shelters of cities and towns across the province are full of these people, no-one during the two hour debate took notice of them.
Wyton’s beliefs shaped the discussion of involuntary treatment; early in the debate Wyton declared that evidence shows that involuntary treatment doesn’t work.
This was an alarming moment for people familiar with the dangers of living with psychotic illnesses. It doesn’t take much research to find substantial evidence that involuntary treatment does very often not only get people out of psychosis, but allows them to live more stable and longer lives.
The evidence supporting the use of involuntary treatment is why in recent years the US has brought in numerous Assisted Outpatient Treatment (AOT) programs. BC’s extended leave outpatient programs are similar to these. Research on AOT programs have demonstrated dramatic reductions in homelessness, hospitalization, arrests, and incarceration.
Involuntary treatment for psychotic disorders relies on the use of medications. A recently released long and large (62,000 people) study coming from Scandinavia demonstrates that people diagnosed with schizophrenia who stayed on antipsychotic medication were twice as likely to be alive after 20 years in contrast to those who didn’t.
Wyton and the Green Party candidate advocated for a review of and changes to BC’s Mental Health Act; groups pursuing this effort want to eliminate involuntary treatment. The Green candidate also advocated for the elimination of Canada’s reservation to the UN Convention on the Rights of People with Disabilities (CRPD); he sees it as essential in ensuring human rights. Canada’s reservation to the controversial CRPD ensures that people have access to involuntary treatment when they need it.
Wyton writes that mental health advocates want to ‘overhaul” what she calls an outdated Mental Health Act. Her questions during the debate assumed that the value of the review of the Mental Health Act isn’t to be questioned. She seems unaware that advocates in my community of families of people with the most severe mental illnesses are very concerned about these efforts; we know that if the goals of the groups pushing for the review are realized, access to involuntary treatment will disappear.
Wyton references a report from the BC Ombudsperson which has led to more careful completion of necessary forms used in involuntary treatment. The Ombudsperson report relies on a document, Operating in Darkness, released by the Community Legal Assistance Society (CLAS), an organization pushing for a review of BC’s Mental Health Act; the Ombudsperson did not recommend this review or any significant changes to the Mental Health Act. Lead author Laura Johnson is representing the plaintiffs in the current attack on BC’s Mental Health Act which would eliminate access to involuntary treatment. Johnson’s perspectives on psychotic illnesses and treatments relied on the beliefs of the fringe group Mad in America (MIA), not the knowledge of contemporary psychiatry. Johnson quotes a MIA psychiatrist who believes anti-psychotic medications don’t actually get and keep people out of psychosis. This is a common belief in the influential psychiatric survivor/alternative movement made up of people who believe they were harmed by psychiatrists and medications that they didn’t need for their problems.
Wyton’s article supports Johnson’s and the BC Ombudsperson’s recommendations for “independent” rights advice. However, the core issue in this change wasn’t acknowledged. As Johnson wishes, the report suggested a change in the way legal rights are explained to involuntary patients. Currently, legal rights, including the request for a review panel, are explained by psychiatric nurses and social workers who see and work with the patients. The Ombudsperson recommended that an outside legal agency, like the Community Legal Assistance Society (CLAS) with which Johnson is affiliated, take over supplying legal advice. If this were to happen, then millions of dollars in the vastly underfunded mental health system would now be going to lawyers. And if CLAS supplies these lawyers, these lawyers will be working to get people out of the hospital, regardless of how severely ill they may be.
The debate would have been the perfect opportunity for an impartial moderator to ask the Green candidate, who called for the elimination of Canada’s CRPD reservation, to discuss the consequences of this action.
This would have allowed everyone to learn that the consequences include elimination of all involuntary inpatient and outpatient mental health treatment and eliminating the not criminally responsible on account of mental disorder defence. The effect would be that the more than 15,000 people a year in BC, whose illness is so severe that they are likely to harm themselves or others or deteriorate, would be turned away from hospitals.
Currently, people who are found to have committed their crimes because of their mental illness are sent to forensic hospitals. These hospitals allow people whose mental illnesses are understood to have caused their crimes to receive treatment and regain their freedom. Instead, if Canada’s reservation to the CRPS is removed, anyone convicted of a crime, no matter how mentally ill they were at the time, will serve their sentence in the regular prison population. People with mental illnesses in the regular prison system often cannot follow rules and end up with longer sentences. Some of us would have appreciated a moderator asking a human rights lawyer, like the Green candidate, to explain how these changes further the human rights of this population.
It’s common for human and disability rights groups to avoid acknowledging the negative consequences of their positions. In fact, these groups often actively undermine efforts by journalists and filmmakers to draw attention to the suffering of people with untreated mental illnesses.
The psychiatric survivors, whom these groups rely on to support their positions, maintain that attention should not be given to those with untreated psychotic disorders who cycle in and out of homelessness, ER’s and incarceration. They argue that this attention promotes stigma against people like them whom they say are people with mental health challenges. In fact, just the use of the term “mental illnesses” is seen as offensive and this might explain its basic absence in the recent debate.
Human and disability rights advocates must look beyond the perspectives of the psychiatric survivor movement if they want to authentically represent the rights of people with severe mental illnesses.
People like my daughter and her friends who live with schizophrenia have had access to involuntary treatment when they needed it. Although they aren’t able to participate in contentious meetings or write about their opinions, they don’t want to be left in untreated psychosis in the future.
If rights groups wanted to truly represent the people they are assumed to represent, they could easily access the perspectives of people with severe illnesses who publicly support access to involuntary treatment.
Julia Fast blogs about living with her bipolar disorder in Psychology Today. She supports involuntary treatment and writes:
“The concept of individual rights doesn’t apply to someone who is not in his or her right mind. We are not in our right minds when we are sick.”
Joseph Bowers, who has lived a long life with schizophrenia writes:
“I’m near seventy, healthy, a husband and father who is retired with enough money coming in. None of this could have happened without involuntary treatment. My civil liberties were not taken away when force medicated and treated. I was instead liberated from the tyranny of serious psychosis.”
Eric Smith, who lives with bipolar disorder, endured 15 years of chaos before he got access to involuntary Assisted Outpatient Treatment (AOT) services. He writes,
“AOT saved me from the criminal justice system and from insanity.”
Erin Hawkes, a Vancouver based peer support worker on an Assertive Community Treatment, makes clear her support for involuntary treatment in her National Post article (#19), “Forced Medication Saved My Life.”
The absence of the perspectives of people like these writers living with psychotic disorders was very evident in this debate. Alternative groups and their allies in academia want to de-medicalize all ‘mental health problems.’ They promote the notion that all people impacted by ‘mental health challenges’ object to involuntary care. They have been aided in these efforts in the unwillingness of national and provincial governments to provide adequate public mental illness literacy campaigns. Until they are exposed to essential information, the public won’t increase its support for the policies and programs that actually help, not harm, people with severe mental illnesses.
The lack of basic public mental illness literacy hurts people with psychotic disorders. This lack leads to family and friends not looking for medically based advice and this leads to prolonged duration of untreated psychosis (DUP). Long DUP is strongly linked to worse outcomes.
Now that BC has held its election, the Green Party is limited to three representatives; their perspectives won’t be receiving the same kind of attention as they did during this debate. Hopefully, journalists covering the ongoing efforts of groups like them that are fighting to stop access to involuntary treatment will become more able to inform the public of what the consequences of these changes would mean.
The lack of acknowledgement of severe mental illnesses in this debate is not unique to BC or Canada. These are problems arising from trends in the social sciences, divorced from scientific and evidence-based approaches, that got out of control. Those pushing for a review of BC’s Mental Health Act want us to see it as “outdated.” In fact, it’s a tribute to more rational voices that managed to prevail. People in other parts of Canada, whose family members have been left to flounder in untreated psychosis, look to BC as a model for a more humane response to people trapped in psychosis.
The inadequate funding of services for people with severe mental illnesses will continue to confront the newly re-elected NDP government. However, not providing these services leads to homelessness, recurring use of ambulances and ER’s, the development of concurrent disorders, and involvement in the criminal justice system. These are very expensive consequences for taxpayers.
The profound economic impact of CODID 19 may make it even more difficult to get the necessary supports for this population and the family caregivers they often rely on. Families like mine can only hope that, at least, legal decisions won’t be made that will make life even harder and more dangerous through misguided interpretations of human rights.