Category Archives: Right to treatment

Pencil Pushers and Bureaucrats Should Have No Say in Mental Illness Treatment Strategy -Part One

Marvin Ross

I don’t believe I have ever seen the CEO of an oncology facility suggest how doctors should treat those with cancer but the CEO of the Royal Ottawa Mental Health Centre just did in an op ed in the Ottawa Citizen. If the CEO was a psychiatrist I would not object but the author, Joanne Bezzubetz, has an MBA and a PhD in Applied Management and Decision Sciences from Walden University. She has a history of admin positions in mental health but no education in mental health treatment.

She begins by saying that “It is time to put clients (patients) at the centre of their own care, to let them make choices about their therapies, and to give them the resources they need to lead independent and happy lives.”

She is clearly an advocate for patient centred care whereby the health care system puts the needs of the patients first. No one can disagree with that but my question is why is that such a big deal. Without patients, health care personnel have no jobs so what did they do before someone came up with this concept? I hope the system always put the needs of the sick up there at or near the top and always provided them with the treatment and resources they needed to overcome their illnesses, pain and suffering.

None of that should be radical. Where I have a problem is to allow them to make their own choices about treatment. Imagine going to the doctor with an infection and the doctor asking what would you like to do? That doesn’t happen. What the doc does is to present the patient with possible solutions, the pros, the cons, the side effects and then decide on a course with the patient. The choices might be wait and see if it resolves on its own or start antibiotics now.

In oncology, the same process would take place and if the patient decides to not accept conventional treatment but wants to go to Tijuana for alternative therapy, I would expect the doctor to have a long talk with the patient and try to dissuade them. If the patient is adamant then there is not much the doc can do. The patient has the capacity to make that decision and does so.

Under common law, as Justice Robins of the Ontario Court of Appeal explained:

“The right to determine what shall, or shall not, be done with one’s own body, and to be free from non-consensual medical treatment, is a right deeply rooted in our common law. This right underlines the doctrine of informed consent. With very limited exceptions, every person’s body is considered inviolate, and, accordingly, every competent adult has the right to be free from unwanted medical treatment. The fact that serious risks or consequences may result from a refusal of medical treatment does not vitiate the right of medical self-determination. The doctrine of informed consent ensures the freedom of individuals to make choices about their medical care. It is the patient, not the physician, who ultimately must decide if treatment — any treatment — is to be administered.”

What Ms Bezzubetz is espousing is something that already exists and is well entrenched in the legal statutes and in case law. I did highlight With very limited exceptions because it is those exceptions that she may be talking about and those are serious mental illnesses and dementia. It is not unusual for these two groups to be unable to understand that they are ill and to be able to make rational decisions about their care. When it comes to dementia, we mostly understand this and allow a substitute decision maker to make those care decision.

Granny has advanced Alzheimer’s and does not know what day it is, how to make a cup of tea safely but refuses care that will keep her safe. With compassion and understanding, we guide her into the care she needs which may be into a long term care facility where she can be looked after. We do not allow her to wander the streets and to live in the park or at a street corner.

In contrast, a young person with untreated schizophrenia is allowed to refuse treatment because he or she insists there is nothing wrong with them. And the longer their condition is untreated the worse it gets. Their family cannot cope and they end up living on the street, getting in trouble with the law and ending up in jail or dead. Society does not care and seemingly those like Ms Bezzubetz feel that is fine because they were “at the centre of their own care” and were allowed to “make choices about their therapies”.

In Ontario and most other jurisdictions, if these individuals become dangerous to themselves or others, they can be incarcerated in psychiatric facilities. Unfortunately, in Ontario they can still decide upon their treatment which usually is to refuse treatment. As a result, we have patients locked up for years who are dangerous but refuse treatment and the chance to recover and be released. How sensible is that?

If Ms Bezzubetz had more knowledge about psychiatry she would be aware that close to half of all patients with schizophrenia and bipolar disorder do not realize they are ill which is why they refuse treatment. The term is anosognosia and it is not just denial of being ill but a symptom of being ill whereby you are not capable of understanding. The following video by Xavier Amador is a perfect example of this condition.

In addition to or as an extension of this characteristic, people with schizophrenia “experience the world differently. And many have a relatively unique set of cognitive impairments, or problems with their intellectual functioning.” Those with schizophrenia have poor memories, trouble shifting between tasks, making bad judgement calls and failing to predict consequences.

None of this bodes well for them to be able to make rational decisions about treatment or no treatment or the best treatment. At least, of course, in the acute early phase of their illness. In that circumstance, consultation should involve family or those who are closest to the patient and know them best. Once treated and stable, the ill person is capable to discuss refinements in treatment. Physicians should pay attention to potential side effects and be willing to change medications to other drugs or to rationally discuss the choice between oral versus injectable forms of drugs.

Those providing treatment have to have the knowledge and the compassion to treat their patients with the appropriate respect and to act in their best interests.

What I’ve written reflects the frustration of a family member experiencing a health system governed by what I consider the harmful ideas expressed by Ms. Bezzubetz. Part Two tomorrow reflect the experiences of a psychiatrist working within that system.

Guest Blog – Mental Illness and The Law

Last week, we featured a blog by Dr. David Laing Dawson on the need for immediate treatment which often gets derailed when lawyers become involved in the medical process. In response, Patricia Forsdyke recounted this event from her years of advocating for those with serious mental illness and their families.

I was called to a Review Board as a witness by a father who bravely took standing at his son’s first Board hearing. Ten years before, an attempt to hospitalize his son had failed in the Emergency Department, when he was not seen by a psychiatrist.

The patient who’d been trapped in a psychosis for well over a decade had landed in hospital this time, so might get much needed treatment! My testimony was to describe how he had behaved very dangerously at a traffic intersection when he was clearly hallucinating. At the end of the hearing he said, pointing at me, that I had not seen the traffic screech and hit him.

The patient took over the hearing when I was called. He first demanded to know who I was. I told him my name: “Patricia Forsdyke.” He promptly told me that I was not HER, and he demanded that I get out my ID. As I proceeded to do so, the Chair stepped in while I fumbled through my untidy handbag. I was the President of the local Chapter of Friends of Schizophrenics and was on the Provincial Board, and pretty well-known in town. The patient told me that I was not Patricia Forsdyke, because “she” had black hair and black eyebrows ( obviously the female Lucifer). After I finished as a witness, I stayed for the rest of the proceeding. It was bizarre. His father did a wonderful job. It was excruciating for his mother.

Everyone there could see how ill and trapped in a psychosis the patient was. Yet the Lawyer won. His doctor was defeated. He was not to be treated. The young female lawyer looked very concerned and almost tearfully confided in me that she knew that he was ill, but that she was JUST doing her job!

The patient remained in hospital for at least a year untreated. But after the NINTH Review Board he was given treatment. And believe it or not, despite his paranoia, he responded pretty well to treatment, and was able to live thereafter, with support and good follow up, in the community. Later he was a great help to his elderly mother, who, in a few days time will be 100! He loves her dearly as she does him. From time-to-time I come across him walking downtown and he is always very polite to me. He gives me updates on his mother.

THE LAW IS AN ASS! And it has no mercy

Guest Post – Forced Medication Saved My Life

This article by Erin Hawkes (now Erin Hawkes-Emiru) first appeared in the National Post Newspaper in 2012. Shortly before this appeared, I had published her first book called When Quietness Came A Neuroscientist’s Personal Journey with Schizophrenia which to this date has 4.09/5 stars on Goodreads from 70 ratings and 4.5/5 stars from 28 ratings on Amazon.

Had our health system listened to the UN Convention on the Rights of Disabled Persons or the World Health Organization who have followed, Erin would not have been treated and would likely not be here today. She would never have written her first book let alone he new book called When Neurons Tell Stories A layman’s Guide to the Neuroscience on Mental Illness and Health.

This is her story as told in 2012:

I once believed that thoughts of suicide were common, plans typical, and success inevitable. My schizophrenic auditory hallucinations (hearing things that aren’t there) filled my ears with voices saying things like “Die, girl, die!” I was immersed in delusions that there was a mysterious, ultimate deep meaning that required my suicide. In September of 2001, I almost succeeded in hanging myself.

Yet, I did not want to die. It was the voices and the deep meaning that drove me towards death, promising me that this was the right thing to do. On many occasions, while delusional, I believed that I had to die for a greater cause.The neuroscience research I performed when well (I have a Master’s degree in the field) would be twisted when I was ill. Most commonly, my delusional mind would think that tiny rats were eating my brain, but that my brain regenerated — a “neuroscientific” conclusion that my brain invented to explain how it could be eaten without me dying. I would, in excited cohorts with the deep meaning and voices, determine to kill myself so that other neuroscientists could research my phenomenal brain and thus cure central nervous system disease and injury. My death would give those paralyzed the ability to walk, stroke victims their language back. If my death could accomplish all this, it was surely a small price to pay, the deep meaning told me.

Whenever I came close to suicide, I was declared a danger to myself and was admitted to hospital. There, I was treated against my will. Eleven times over five years, I was involuntarily hospitalized. Also out of my control was medication with sedatives and anti-psychotics. I regularly refused to take the pills they determined I needed, believing they had rats in them. But refusal was simply met with injections. I hated it, fought back and screamed with all of my might. I felt I was a victim of a harsh and cruel mental health system. I had no hope, no wish but to end it all.

The system and its psychiatrists had the power to take that wish away from me. Despite my resistance, hospital staff kept me safe from myself when I could not do so on my own. Those whom I thought were my jailers were actually my caregivers. The insight into all of this eluded me; anosognosia — the inability to recognize one’s own disease — plagued me, as is the case for many others who suffer from schizophrenia. As I recovered, however, I could start to see that I had been protected from myself. I was still alive.

Being involuntarily hospitalized and medicated against my will saved me from my suicidal self. The voices and deep meaning were silenced with mere little pills. Once stable, I could continue in recovery with psychotherapy and metacognitive training, having learned — the hard way — the positive power of anti-psychotic medication.

I now hear people lobbying for the end of involuntary treatment for people such as myself who suffer from a severe mental illness. It is a personal journey, they say, and everyone should be free to reject hospitalization and medication. It is a right, they say, to be ill; even, that there is no such thing as being “ill.”

So should I have had the right to refuse life-saving treatment? Would I have had a better life if I had not been admitted into a safe place and medicated toward death-defying insight? I am certain beyond a doubt that had I not been treated, I would have succeeded in suicide, joining the 10% of people with schizophrenia who kill themselves.

The right to live supercedes the “right” to not be involuntarily treated for mental illness. Those who are suicidal when ill but want to live when not, should have the safety of having another person decide to give us the chance to return to our lives and be well.

Insanity as a Criminal Defence

By Marvin Ross

I had always considered that the M’Naughton Rule as developed in England in 1843 marked the first time insanity was used to absolve someone of criminal responsibility for committing a criminal act. The practice actually goes back much further in time and demonstrates that our ancestors had more sense than the United Nations does.

The UN in its Convention on the Rights of Persons with Disabilities wants signatories to abolish insanity as a defence. They are also opposed to any form of involuntary committal or treatment as they have been, as I discuss in my new book Anti-Psychiatry and the UN Assault on the Mentally Ill, been taken over by anti-psychiatry advocates.

Daniel M’Naughten was tried for the murder of Edward Drummond who he mistook for the British Prime Minister, Robert Peel. M’Naughten has been the standard under common law for the defence of insanity with minor differences between jurisdictions. When the rules are satisfied, the verdict is not guilty by reason of insanity (Not Criminally Responsible in Canada) and results in a sentence to a secure facility for an indeterminate time or at the discretion of the court. The insanity defence is recognized in England and Wales, Canada, Australia, New Zealand, India, Hong Kong, the Republic of Ireland, Norway and most US states. Only Idaho, Kansas, Montana, Utah and Vermont do not recognize this. Those states, however, still allow for a defence of not able to form intent due to a mental illness.

According to the British House of Lords at the time:

“the jurors ought to be told in all cases that every man is to be presumed to be sane, and to possess a sufficient degree of reason to be responsible for his crimes, until the contrary be proved to their satisfaction; and that to establish a defence on the ground of insanity, it must be clearly proved that, at the time of the committing of the act, the party accused was labouring under such a defect of reason, from disease of the mind, as not to know the nature and quality of the act he was doing; or, if he did know it, that he did not know he was doing what was wrong”

I was surprised to learn that insanity has been considered going back to pre-Norman times (before 1066). While there was no distinct criminal code in that period, a murderer could pay compensation to the victim’s family. If the murderer was insane, then his family paid on his behalf. During Norman times, insanity was a special circumstance in which the jury would deliver a guilty verdict and refer the defendant to the King for a pardon.

In 1800, England introduced the Criminal Lunatics Act and the reason is quite interesting. James Hadfield was a respected officer in the British Army who attempted to kill King George III at the Theatre Royal Drury Lane. Hadfield had been badly wounded in battle at Flanders in 1794. While in hospital recovering, he told another patient that he was George III. Later, he claimed to be Adam from Adam and Eve fame and then the “Supreme Being”. He recovered enough to rejoin the army but was soon discharged due to insanity. In 1800, he went to the theatre to kill King George but missed. He was tried for high treason but was acquitted on the grounds of insanity. He was the major reason for the introduction of the Act.

There was fear that Hadfield would only be kept locked up until he regained sanity and then he would deteriorate and again attempt murder or possibly even succeed. As a result, the new law stated that “If [the jury] shall find that such person was insane at the time of the committing such offence, the court before whom such trial shall be had, shall order such person to be kept in strict custody, in such place and in such manner as to the court shall seem fit, until His Majesty’s pleasure shall be known.

This act was in force in England until it was repealed in 1981 and replaced with the Mental Health Act of 1983. The new Act allowed for people to be detained and treated against their wishes. This was replaced in 2007 when various refinements were made including Community Treatment Orders. These acts were and are specific to England and Wales although other jurisdictions have acts that are similar. The point is that some people with untreated mental illness do commit horrible acts that, were they sane, they would not commit. It is for their protection and the protection of society that they be committed and treated as quickly as possible so they can return back to society.

A civilized society should not allow someone to continue in a state where they can do harm to others without taking action. And a civilized society does not invoke punishment on them for doing something they have no control over. There are, I’ve read, people with schizophrenia on death row in various US states because of what they did when ill. Many of them are still ill and I suspect are not aware of what they did. Execution is never right and it is even less right when it is someone being killed by the state for committing an act they had no control over.

But the UN endorses that. I am slightly biased but I think you will find Anti-Psychiatry and the UN Assault on the Mentally Ill an eye opener for the unscientific beliefs that have become so well entrenched.

The Origin of a Bad Mental Health Act Provision

By Marvin Ross

An obscure Zoom video presentation given to interested members of his Synagogue Congregation in Toronto reveals why Ontario has what is considered to be the worst Mental Health Act in Canada. The presentation was by the lawyer who developed the Act.

Gilbert Sharpe , according to the Faculty of Law at the University of Toronto, “has influenced some of the most important legal issues and policy matters affecting modern health care. This includes the development of legislation and policies to improve the Ontario and Canadian health care system. This context is invaluable for those who seek to impact change in healthcare.”

The stupidity of the Ontario act allows someone who has been declared mentally ill and a danger to self or others and is detained for those reasons to then refuse treatment and to remain in hospital, ill, for years.

As John Gray, one of Canada’s leading experts on Mental Health Law, said in a presentation he gave to an Ontario committee in 2009 studying this:

Treatment refusal leads to unnecessary loss of liberty, continued suffering, unnecessary health costs and harm to others (e.g. assaults on nurses).

In his talk to his fellow congregants, Sharpe explains the rationale for this. He said that the Act only talked about detention and not treatment. So, “from my perspective” he said, he thought that common law should apply. Over and above detention, he felt that consent would have to be sought from the patient because suffering from a mental disorder and posing a safety risk does not mean you aren’t capable of making a treatment decision. You will find these comments about 12 minutes in on the video.

I have to wonder if Sharpe ever talked to anyone who was mentally ill and detained. If they are in such a state as to be a potential danger, it is hard to believe that they could put that paranoia, anger, delusion, fear, etc aside and then rationally weigh the pro’s and con’s of various treatment options.

It does not make sense!

In my blog on the efforts to change the BC Act to be like Ontario’s Act, I said:

Gray pointed out that on average, people can be discharged after about a month with treatment but refusal to allow treatment can result in years and years in hospital. He and two others wrote a paper called Treatment Delayed – Liberty Denied. In one case, Professor Starson was held untreated for 5 years in an Ontario hospital while his case made its way up to the Supreme Court. And those people who appealed a Review Board finding waited 253 days until the courts dismissed their appeals and the doctors could treat. The courts uphold the Review Boards so the patients wasted 253 days.

But what is worse are the examples given in that particular study. There were people being detained for 5, 10 and even 25 years because they refused treatment and so remained a danger to themselves or others. At $600 per day, or $219,000 for 1 wasted year and 4.38 million for 20 years that is a lot of taxpayer’s money not to treat people and to also deny them their liberty. That is the Province of Ontario but that is not something that could happen in BC with its mental health act which these anti-psychiatry types want to abandon in favour of Ontario’s flawed legislation.

Sadly, Mr Sharpe is still in the game and is now helping Ontario’s Associate Minister for Mental Health and Addictions, Michael Tibollo, “improve” mental health care in Ontario. According to Tibollo’s legal practice website, Gilbert is working in his legal practice. .

Last March, before it was cancelled due to the Covid lockdowns, Home on the Hill was to put on a presentation by Dr. Thomas Ungar, chief of psychiatry at St Michael’s Hospital in Toronto, on the Mental health Act. Home on the Hill attempted to get the Health Minister or the Associate Minister to come with no luck. Dr. Ungar suggested that Gilbert Sharpe could attend, present the Act and then Dr Ungar could critique it from the point of reality. Tibollo’s chief of staff thought that was a good idea and went to discuss it with Sharpe. Nothing further was heard as I wrote in the Hamilton Spectator.

Anti-Psychiatry in British Columbia – The Need for Continual Vigilence

By Marvin Ross

Over the past few years, I’ve been writing about the attempts by what I consider an anti-psychiatry group in British Columbia to derail that provinces excellent mental health act. They are still at it. I first wrote about it in the Huffington Post back in 2016 and again later that same year when someone fled BC to Ontario claiming she was a refugee from the BC Act.

In 2019, Susan Inman did a guest blog on this site on the attempts in BC to do away with involuntary treatment for those who are hospitalized under the act. The initial challenge to the Act was tossed on a technicality but the attempts still persist as Susan wrote recently in a Vancouver newspaper. The latest assault on involuntary treatment is from a report by the Representative for Children and Youth (RCY) called Detained: Rights of Children and Youth Under the Mental Health Act.

The key to their complaints is that people who are involuntarily committed are assumed to be consenting to treatment and they are then treated even if they do not want to be treated. The RCY argues that BC is the only jurisdiction in Canada that treats involuntary patients. BC, in fact, has the best provision to enable treatment to start immediately. Ontario is the only jurisdiction that allows an involuntary patient the right to refuse treatment with dire consequences which I will get to.

In Nova Scotia and Manitoba, if a patient, while competent, instructs a substitute decision maker (SDM) to refuse treatment, the SDM must follow those requests when the patient is involuntary unless doing so will result in significant harm. If that becomes the case, the SDM must make decisions in the best interest of the patient. Nova Scotia and Saskatchewan have raised the bar for capability to fully capable in order to refuse treatment. In Alberta and the Yukon, review boards can overcome refusals to treatment. In New Brunswick, the review board can overturn a refusal to treatment if it means that no treatment will result in the patient remaining in hospital as an involuntary hold.

The purpose of involuntary treatment (or any treatment for that matter) is to help the patient get better. If they are involuntary, the point should be to get them better so they can get out of hospital. If you deny treatment for the person as the BC advocates want to, will they get out? The answer to that can be found in the stupidity of the Ontario Act which allows someone declared involuntary to then refuse treatment and to remain in hospital, ill, for years.

As John Gray said in a presentation he gave to an Ontario committee in 2009 studying this:

Treatment refusal leads to unnecessary loss of liberty, continued suffering, unnecessary health costs and harm to others (e.g. assaults on nurses)

Gray pointed out that on average, people can be discharged after about a month with treatment but refusal to allow treatment can result in years and years in hospital. He and two others wrote a paper called Treatment Delayed – Liberty Denied. In one case, Professor Starson was held untreated for 5 years in an Ontario hospital while his case made its way up to the Supreme Court. And those people who appealed a Review Board finding waited 253 days until the courts dismissed their appeals and the doctors could treat. The courts uphold the Review Boards so the patients wasted 253 days.

And one sidebar on the Professor. He was not a professor and his name was not Starson but he called himself that because he believed himself to be a son of the stars. He was always referred to as Professor Starson even by the Supreme Court of Canada so you really have to wonder who is crazy.

But what is worse are the examples given in that particular study. There were people being detained for 5, 10 and even 25 years because they refused treatment and so remained a danger to themselves or others. At $600 per day, or $219,000 for 1 wasted year and 4.38 million for 20 years that is a lot of taxpayer’s money not to treat people and to also deny them their liberty. That is the Province of Ontario but that is not something that could happen in BC with its mental health act which these anti-psychiatry types want to abandon in favour of Ontario’s flawed legislation.

Returning to the most recent BC report, it should be said that the study is not what anyone would call proper research. The conclusions the author made are invalid in my opinion.. They interviewed 14 young people about their experiences in the system – hardly a systematic evaluation. The report makes this statement:

Although the Mental Health Act features protective safeguards – including requiring the provision of information about rights, notification of a near relative, second medical opinions, re-assessments, Mental Health Review Board hearings and access to legal counsel for Review Board hearings – this report finds that young people are apparently not being informed of and certainly not being supported to exercise their rights under the Act.

And they are correct in that the Act states in its guide that:

the Act also contains protections to ensure that these provisions are applied in an appropriate and lawful manner. Safeguards for the rights of people involuntarily admitted to a psychiatric facility include rights notification, medical examinations at specified time periods, second medical opinions on proposed treatment and access to review panels and the court.

The report suggests that this is not happening or at least they say apparently and that seems to be based not on a review of the statistics kept on children and youth who go through the system but on the recollection of the young people themselves. It seems they did look for the data but found it to be inconsistent and/or missing. That is a relevant finding and they should insist that the departments involved get their acts together and ensure proper statistics. It does not mean they can come to the conclusion that these safeguards are ignored.

The one other thing that I want to mention is this comment that there is a:

lack of opportunity for young people detained under the Mental Health Act to have a say in treatment options that are more trauma-informed, relational and diverse rather than exclusively medical, and to stay connected with family and culture to help deal with underlying causes of their symptoms.”

This reflects their anti-psychiatry stance particularly with the mention of the need to get away from treatments that are “exclusively medical”. These are treatments that are evidence based and ones that have demonstrated a level of efficacy. They go even further with the suggestion that treatment staff must “Ensure First Nations, Métis, Inuit and urban Indigenous children and youth detained under the Mental Health Act receive trauma-informed, culturally safe and attuned mental health services.”

All staff in whatever system need to be culturally sensitive to the above groups and to all racialized groups to help counter systemic racism. The attitudes of staff can be discriminatory unfortunately but evidence based treatment modalities or mental illness are non discriminatory. The one caveat to that might be the problem with drug trials not having sufficient representation from a diverse enough population.

The issue of traditional treatments for Indigenous people came up in Ontario a few years ago with disastrous results. Two young Indigenous girls insisted that their cancer be treated by traditional methods and not western medicine. Maykala Sault, an 11 year old from the New Credit First Nations was being treated with conventional therapy at McMaster Children’s Hospital in Hamilton. She was given a 75 per cent chance of survival when she was diagnosed with acute lymphoblastic leukemia (ALL). Doctors stated that no one survived this form of cancer without chemo but Maykala decided to stop in order to pursue traditional Indigenous medicine. She died. So much for the efficacy of traditional healing. But then again, some of her treatments were carried out by a clinic in Florida which was actually licensed as a massage establishment and is being sued – not exactly traditional culture.

In a similar case, another Indigenous child aged 11 from the Six Nations decided to forgo traditional medical treatment for Indigenous care. Doctor’s treating her appealed to court to be allowed to continue scientific therapy but the judge ruled that she and her family had the right to decide to have other therapy. The name of the child was withheld so I have not seen what the outcome was in that case. The so called traditional therapy was also carried out at the same facility in Florida.

That treatment cost the family $18,000 and involved being taught to “heal themselves” from cancer by eating raw, organic vegetables and having a positive attitude. You can read about this clinic in this article from the CBC.

I’ve digressed a bit with this description but the intent was to show how ludicrous it is to abandon evidence based therapy whether for mental illness, cancer or any other condition.

Sadly, this BC report is nothing but another anti-psychiatry, anti-science piece of fluff which gets far too much attention from the public and politicians. If I may be allowed, if you want to read a comprehensive refutation of all that anti-psychiatry holds dear, my book, Anti-psychiatry and the UN Assault on the Mentally Ill will be available shortly.

Guest Blog Mental Illness Left Out of BC Candidates Debate on Mental Health Services

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.

The Eight Commandments for Successful Mental Illness Advocacy

By Dr David Laing Dawson

Serious mental illness requires:

  1. Treatment. That treatment is primarily pharmacological. Treatment controls symptoms and prevents relapse. But as human beings people with mental illness also need:
  2. Adequate stable housing
  3. Adequate nutrition
  4.  Regular activity that provides a sense of purpose and value
  5.  At least one relationship that approaches intimacy
  6. Membership in a group providing a sense of belonging/acceptance
  7. Currency (money, skill, knowledge, literacy…)
  8.  Meaning (a way of thinking about existence/purpose/being/self/others)

Having an untreated mental illness puts all other seven of those essential needs at risk.

Without treatment it is almost impossible to regain even one of them.

There are many good people and organizations in this world that would like to improve the lives of the mentally ill. Please stop the nonsense of opposing pharmacological treatment and replacing it with big words and false promises drawn from current new age and corporate lexicon.

Instead pick one or more on my list  and work on it, as an individual, an advocate, a service provider, a fund raiser, an organization, a politician…….

The categories in my list are not in precise order but achievement of each is generally dependent on achievement of the ones above.

(note: large artistic installations of solar spectrum light in urban malls is not on the list, apart from satisfying numbers 4,6,7 and 8 for the artist himself)

Courage to Come Back Award for Bridgeross Author

By Marvin Ross

news.Courage.Emiru_.Horiz_.2303
Photo courtesy of the Vancouver Courier

Bridgeross author, Erin Emiru (Hawkes) and the author off When Quietness Came: A Neuroscientist’s Personal Journey with Schizophrenia has just been named recipient of the Courage to Come Back Award in Mental Health in British Columbia.

Erin is the second Bridgeross author to win this award. Sandra Yuen Mackay (My Schizophrenic Life) was the first. Sandra went on to become one of the 5 faces of mental illness in Canada as well.

Erin is an amazing young woman (and all my authors are). The promo for her book describes her life up to the time the book was published as:

The true story of a young woman studying neuroscience who, in her final undergraduate year, has a psychotic break, attempts suicide and ends up in hospital. Her struggles to get well and to pursue her PhD are described in this book. Her story is geared to people from a variety of backgrounds. As a neuroscientist, Erin reaches out to the medical community who need to hear this side of the patient. As a schizophrenic, she reaches out to others struggling with this disorder, hoping to draw alongside and offer empathy and hope. Finally, she wants the general public, family and friends of people with schizophrenia to be better able to understand and sympathize with those afflicted.

9780987824448_frontcover

Since the book came out, Erin has begun work as a counsellor in the Vancouver Assertive Community Treatment and giving talks to doctors, nurses, students and families. Two of the recommendations she was given for the award were quoted in the Vancouver Courier.

Leanne Maylam, a nurse who met Erin when she was very ill said that I “met Emiru in the mid-2000s and consistently saw Emiru at her worst. Emiru was dubbed “Houdini” because of her uncanny ability to free herself from the restraints needed to prevent her from self-harming.”

The pair now work together on the ACT team and Leanne added “I admire Erin. Through her courage, strength and tenacity, she has turned her struggle with her own mental health into a symbol of hope for those with their own struggles. Erin is not a ‘schizophrenic,’ she is a wife, a daughter, a sister, an aunt, a colleague… she is my friend.” .

One of her clients said “Erin understands me like I never thought anyone ever could. She is so kind and patient and compassionate and with her help I have been able to finally learn that my best is OK and to live a useful life.”

Erin is a staunch supporter of involuntary treatment which she once wrote saved her life.

This is her talk to a family conference in BC moderated by another Bridgeross author, Susan Inman (After Her Brain Broke)

Coming in January: Mind You The Realities of Mental Illness A Compilation of Articles from the Blog Mind You

We have decided to publish a book on the best of our mental illness blogs over the past 4 and a bit years. The book will be available in print and e-book formats everywhere in early 2019.

Below is the introduction:

We began this blog in October 2014 in order to provide commentary on the state of mental illness and its treatment for the lay public. What we provide is a viewpoint from that of a psychiatrist with many years of experience (David Laing Dawson) and a family member of someone who does have schizophrenia (Marvin Ross). Aside from his personal experience (or lived experience as it is commonly referred to), he is also a medical writer, advocate and publisher of books that take a unique look at mental illness.

To date, we have had close to 75,000 views and have been read in 151 different countries since 2014.

We also write on other topics but these are the ones on mental illness covering topics like recovery, treatments, suicide, addictions, and alternative treatments (or pseudo science).

When we began, we had this to say of our purpose:

 Welcome to the launch of Mind You. While we intend to post on mental illness,mental health and life, we decided on the name Mind You to reflect that not everything is black and white. There are ideas and opinions but then mind you, on the other hand, one can say…….

And that is what we would like to reflect. Ideas about mental illness,health and life that can be debated and discussed so that we can come to a higher understanding of the issues. And, we have separated out mental illness from mental health because, despite their often interchangeability, they are distinct.

The National Alliance on Mental Illness defines mental illness as a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are medical conditions that often result in a  diminished capacity for coping with the ordinary demands of life. Serious mental illnesses include major depression, schizophrenia, bipolar disorder, obsessive compulsive disorder (OCD), panic disorder, post traumatic stress disorder (PTSD) and borderline personality disorder.

On the other hand, the World Health Organization defines mental health as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community. That is quite different from mental illness.

Unfortunately there is a tendency to confuse these and organizations like the Mental Health Commission of Canada have a tendency to talk about mental health issues and problems which are not the same as mental illnesses.

 Both Dr David Laing Dawson and I (Marvin Ross) will be posting on a regular basis on a variety of topics.

The posts we have selected for this volume are the most widely read over the past 4 years.

Mind You, ISBN 978-1-927637-31-9, 193 pages distributed by Ingram