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Cutting for Stone

Presentation to the Select Committee on Mental Health, Legislature of Ontario, Sept 8, 2009

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The Ontario Government set up a committee of legislators to investigate the state of mental health services in the Province. As part of their deliberations, they invited submissions from organizations and interested parties. The previous evaluation of mental health services, referred to in the presentation below, consisted of 11 separate reports which was very critical of  services and made many recommendations. To the best of my knowledge, those reports and their recommendations were never acted upon.

Below is the presentation by Marvin Ross

Thank you for the opportunity to present to you today. I will focus on schizophrenia, a topic that I am far too familiar with as a parent. In addition, as a medical writer, I have used my expertise to research the disease and wrote the book Schizophrenia: Medicine's Mystery  Society's Shame. The book has received excellent reviews in North America and Europe and is recommended by the World Fellowship for Schizophrenia and Allied Disorders. I will leave you a copy at the end of my presentation.

The subtitle of my book says society's shame and it is if we look at some facts about our treatment of the victims of this disease.

The World Health Organization states that 44-70% of people with schizophrenia receive no care at all.

Dr. David Dawson, a former professor of psychiatry at McMaster and chief psychiatrist at what was the Hamilton Psychiatric Hospital stated in the preface to my book that “the mentally ill of many western countries are not faring as well as they might have in 1960 or 1970 despite our advances in knowledge, treatment, and our nations' wealth.

Michael Wilson, the present Canadian ambassador to the US and the father of a son whose own mental illness led him to commit suicide, stated that only about 25% of those who need treatment actually get proper treatment. There would be a public outrage if these same statistics applied to those with heart disease or cancer.

Wilson also stated that the system in Ontario is based on 30 years of neglect that had led to staff shortages and little evidence based treatment.

By the way, Wilson co-chaired a series of 11 reports on mental health in this province commissioned by the former Conservative Government that was presented just before the McGuinty Government took office. I would suggest that you take a look at them, if you haven't already, as part of your deliberations.

A 2005 report by Canada's Correctional investigator found that between 1998 and 2004, the number of prisoners with psychiatric illnesses doubled. It went up 50% while the total number of prisoners declined by 12%. This does not mean the criminals are developing mental illnesses, it means the mentally ill are being criminalized. Instead of spending weeks and sometimes months in an underfunded, neglected but otherwise humane treatment facility (e.g. a mental hospital) they are being cycled through the courts to jails, hostels, and street corners, and back through the courts at far greater expense to than good treatment facilities would cost.

A Canadian Mental Health Association official, Penny Marret said “our prisons have become warehouses for the mentally ill due to funding cuts and closures”

A 2005-06 report by the Canadian Institute for Health Information found that there are significant numbers of homeless people with psychiatric disorders. Many of the people that you see sleeping on sidewalk grates and begging for change not far from this legislature have untreated psychiatric disorders. They deserve to be treated.Some estimates go as high as 70% of long term homelessness is caused by mental illness.

A study reported in the Archives of General Psychiatry in 2007 that combined data from 37 other studies in numerous countries found that people with schizophrenia have a death rate 2.5 times that of the general population.

Another study in the Journal of the American Medical Association found that people with Serious Mental Illness lose 25 years of life expectancy compared to the general population.

The conclusion from these studies by one of the authors is that “this is a tragic reflection on how sub-optimal our current treatments are”

BUT NONE OF THIS HAS TO BE!

These problems do not exist in the Netherlands or Norway. Yale psychiatry professor, Thomas McGlashan, said of Norway that any mentally ill person found on the streets would be connected with an outpatient clinic and provided with a doctor and a nurse to ensure his or her well being.

I would strongly suggest that this committee look at what is being done in those two countries.

My friend, Ian Chovil, who I have written about is a case in point. He spent over ten years living on the streets with undiagnosed schizophrenia, addicted to drugs and alcohol.

In 1985, he was living in his car in Toronto when he was arrested. The courts sentenced him to 3 years probation and required him to see a psychiatrist. This he did in Guelph. He improved sufficiently that he was able to eventually get a job at the Homewood, a world famous psychiatric facility in Guelph and set up and maintain a very good informative website on schizophrenia. He is now retired. His website is chovil.com

He commented to me that “it is only too self evident to me that I have permanent damage that I must live with because I was not treated in the first six months. It is something that I think about everyday, something that I have to re-accept every morning.”

The longer that schizophrenia goes untreated, the more brain damage there is. The more frequently one has severe relapses, the longer it takes to recover and that recovery is not back to the same state the person was in before the relapse.

One of the reasons for this state of affairs is that many in society still do not recognize psychiatric illnesses as real diseases. Look at the recent report from the Ontario Ministry of Health called “Every Door is the Right Door”. A commendable attempt to improve conditions but they talk about prevention.

If they truly recognized psychiatric illnesses as diseases, they would not talk about prevention. After all, how can you prevent something when you don't know what causes it. We can prevent a lot of heart disease, skin cancer and type II diabetes through life style changes because research has uncovered some of the factors causing those diseases.

Medicine cannot prevent diseases like Alzheimer's, MS or ALS because it does not know the cause. Similarly, medicine cannot prevent schizophrenia or bipolar or depression because no one knows what causes them. We have theories and ideas but as of now, we do not have any understanding that could lead to primary prevention. And secondary prevention is just what I talked about a few minutes ago: early diagnosis, early and adequate treatment, rehabilitation, and health maintenance.

Schizophrenia is a disease of the brain that just happens. It is not a “mental health issue” a term that is often used. We don't talk about people with insulin dependent diabetes as people with pancreas issues. They have a disease. Schizophrenia is a disease that causes or is caused by significant changes in the brain. There are well documented structural abnormalities, neurological abnormalities, neuropsychological abnormalities, electrophysiological abnormalities, and cerebral metabolic abnormalities.

And these changes have even been documented in people who have never been treated although the opponents of drug treatment would argue that the changes are the result of prescribed medicines and nothing else.

Imaging studies of the brains of untreated people with schizophrenia have shown that there are significant differences when compared to the brains of matched healthy people. The effect of antipsychotic drug treatment on these sick patients results in their brains gradually starting to resemble the brains of the normal healthy controls.

The people you see pushing a shopping cart with all their worldly possessions in it while mumbling incoherently to themselves, or shouting rhetoric on the street corner, or living in a cardboard carton are sick. They deserve humane care, humane consideration, and treatment.

SO WHY AREN'T THEY?

A large part of the reason is that we allow them to make their own treatment decisions – something they do not have the capacity to do. Part of their illness is their inability to understand. This is a condition called anosognosia. They are so sick and delusional that they do not know they are sick and refuse treatment.

And our society thinks that is OK. Most opponents of compulsory treatment cite John Stuart Mill's On Liberty. Mill said that “the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others.”

When Mill wrote that, there were very few medical treatments for anything, let alone psychiatric disorders.

But, Dr. Richard O'Reilly, a psychiatrist in London, Ont and the former president of the Ontario Psychiatric Association points out that Mill also said in the very next paragraph, “those who are still in a state to require being taken care of by others must be protected against their own actions as well as against personal injury”

We do that for the elderly with serious dementia and Alzheimer's. We do not allow granny to refuse treatment for her dementia and to live in a refrigerator box outside so why do we do that for young people with schizophrenia? It is cruel and inhumane for any caring society such as ours to allow people who are sick to remain sick.

In fact, the most effective anti stigma strategy is not to try to educate the public but to provide treatment for those who need it. Tragedies like the Virginia Tech shooting or the Greyhound Bus beheading only fuel negative views about mental illness. Preventing these events by providing treatment for those who commit them or who are likely to commit them do much better.

Psychiatrist Dr. Sally Satel, said in the New York Times that “no matter how sympathetic the public may be, attitudes about people with mental illness will inevitably rest upon how much or how little their symptoms set them apart.”

In the western world, with growing affluence, increasing attention to civil liberties, in the 1970’s mental health laws changed. They were re-written to protect individual rights. I am told that the authors of Ontario’s mental health act did not expect the result that has become so obvious over the past twenty years.

They thought the mentally ill would still get good treatment but within that right to receive treatment, their other rights would be protected. At the time cynical psychiatrists often joked about the mentally ill now being allowed to die in back alleys with their rights intact. The laws created due process, caused a careful examination of forced treatment, but were ultimately based on a fantasy that those without insight into their illness could make sound treatment decisions..

And the result has been that many seriously mentally ill have lost their right to treatment.

In several European countries, the same countries that have excellent social welfare systems, excellent systems for the care of the mentally handicapped, and countries that are renowned for their approach to civil liberties, it has been recognized that we threw away the right to treatment when our laws over-emphasized the civil rights of the mentally ill. And in these countries the laws have been modified to correct this. And it is the attitudes, resources, rules, practices and laws of these countries that we should study and emulate.

In conclusion, I would like to pass on some comments from my family. My wife suggests that if our health system cannot do a better job of providing treatment for people with schizophrenia, then we (the families) should all be given free antidepressants.

My son works for a psychiatric rehabilitation program in Hamilton as a peer counsellor. Both he and the agency are in Ms Horvath's constituency. The government has just cut off their funding. As a result, the clients will lose their support and the peer support workers, for whom this job helps with their self esteem and feelings of self worth, will be unemployed.

Thank you for your time today and, as promised, I will leave you with a copy of my book. Please don't feel any pressure as there will be no test if you do read it. I am also leaving you with the DVD of the feature film Cutting For Stone which is going into general release in the US in October. The film was shot in Hamilton, Ontario, written by a psychiatrist and is one of the most realistic depictions of schizophrenia that you will find. The bonus scenes added to the DVD are very educational.

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