Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 16 - Evidence for May 28, 2003
OTTAWA, Wednesday, May 28, 2003
The Standing Senate Committee on Social Affairs, Science and Technology, met this day at 4 p.m. to study issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October 2002. In particular, the Committee shall be authorized to examine issues concerning mental health and mental illness.
Senator Michael Kirby (Chairman) in the Chair.
[English]
The Chairman: Honourable senators, we will begin.
We have four witnesses. We will hear briefly from all of them with a short opening statement. Their longer written statements are available to committee members.
Mr. Arnett is head of the Department of Clinical Health Psychology in the Faculty of Medicine, University of Manitoba. I am curious, Mr. Arnett, that your title says "psychology" and not "psychiatry." You can tell me about that in a minute.
We have Ms. Bronwyn Shoush, who is based in Edmonton; Ms. Nancy Hall, a mental health consultant from the West Coast, formerly from Winnipeg; and Ms. Rena Scheffer of the former Clark Institute, now called the Centre for Addiction and Mental Health.
As many of you will recall, Dr. David Goldbloom, who was until recently the chief medical officer for the Centre for Addition and Mental Health, is the special adviser to this committee.
Thank you all for coming from all parts of the country.
Mr. John Arnett, Head, Department of Clinical Health Psychology, Faculty of Medicine, University of Manitoba: Brevity is not one of the vices to which I have been subject, but I will try to be as brief as I can.
This committee will recognize that 20 per cent of Canadians will experience a mental health disorder at some time in their lives; therefore it is a "big deal." The economic cost of mental health disorders was estimated to be about $7.3 billion in 1993. Four per cent of all general hospital admissions in 1999 were for mental health disorders.
I will not go over the prevalence of all the disorders, other than to say that 2 per cent of all deaths in Canada annually are due to suicide. Two per cent may not sound like a lot, until you see that 16 per cent of all deaths in those aged 25 to 44 are from suicide; 25 per cent of all deaths of those aged 15 to 24 are from suicide. No one in this room would be concerned about it, but males aged 65 and older are also at significantly increased risk of suicide.
A comprehensive study by the World Health Organization, the World Bank and Harvard University revealed that mental health disorders ranked second only to cardiovascular disorders in terms of the burden of illness that they place on people. Mental health problems also caused a greater number of years lost to premature death and years of life lived with disability than did all cancers. This brief run of statistics suggests that mental health is a significant problem that impacts on all Canadians, their families and their communities as a whole.
When we start to talk about stigmatization, we can start to talk about the partitioning of mental and physical health. This flows from René Descartes' philosophy of dualism — there is a mind and there is a body and they are separate and distinct. However, the point is that the development of mental hospitals, which ultimately came into being as distinct from general hospitals, probably contributed to the stigmatization of those with mental health disorders, in that mental hospitals were often located in the very remote parts of our country. That served to reinforce the notion that those with mental illnesses must be dangerous and somehow kept apart from those with other health disorders.
I will not go into the theories of causation with regard to mental health disorders, other than to say this: Dramatic developments in biology, genetics and imaging techniques sometimes so captivate our imagination that we are led to biological reductionism and an oversimplification of mental health problems by focusing only on biological aspects and brain images, forgetting that these disorders also occur within the context of a social environment and a psychological state of affairs. If you want to understand mental health disorders, you have to understand not only their biology, but also their sociology and psychology. Those must be integrated into one format if anything is going to make any sense.
It is clear that stigmatization has existed with regard to mental health problems since the recording of history. However, there are indications that stigmatization may be increasing rather than diminishing. That is a significant issue for us. We know that it prevents individuals from acknowledging to themselves their mental health problems, let alone to anyone else. People hide in the closet with these difficulties and do not seek appropriate treatment, in spite of the fact that appropriate treatment is available.
The U.S. Surgeon General issued the first-ever report on mental health in December 1999. It estimated that nearly half of all Americans who had a severe mental health disorder, and nearly two-thirds of those with a diagnosable mental health problem, did not seek treatment because of the fear of stigmatization.
Many in this room remember the 1972 U.S. presidential election, when U.S. Senator Thomas Eagleton was chosen as a vice-presidential running mate to George McGovern. Senator Eagleton had to withdraw because he acknowledged that he had had nervous exhaustion and had received electric shock therapy for depression. This points to a stigmatization of mental disorders that crosses all occupational, social, cultural and economic boundaries. It is not restricted to just one segment of our society.
We know that stigmatization is characterized by bias, distrust, stereotyping and so on. It frequently reduces an individual's access to resources and opportunities for housing and jobs and ultimately leads to low self-esteem, isolation and hopelessness. There is no question that this occurs in many cases independently of the limitations that may be imposed by the mental health disorders themselves. In other words, stigmatization seems to have an independent capacity to do this.
We know that sensationalized media coverage of people like Andrea Yates, who drowned her children in a bathtub, contributes significantly to stigmatization. We also know that deinstitutionalization without proper community supports created ahead of time has caused many street people with many mental health problems to crop up in our cities, a situation which frightens and upsets the public. These sorts of events also contribute significantly to the stigmatization of those with mental health problems.
I mentioned before that stigmatization may be increasing rather than decreasing. Phelan and his colleagues in a 1997 report compared the public perceptions of mental health disorders in 1950 with those in 1996 and found that the social stigma of mental illness was stronger in 1996. The single most important factor contributing to this increase in stigmatization was the public's perception that people with mental health disorders are dangerous. In order words, they constitute a risk to their health and well-being.
Thirty-one per cent of those questioned in 1996 mentioned violence in their statements about those with mental illness, compared to only 13 per cent in 1950. In other words, stigmatization along the lines of violence has increased rather than decreased.
There is no simple solution to this problem, no simple way to make stigmatization disappear. The Phelan studies suggest that simple increased knowledge about mental health conditions is not enough. In fact, increased knowledge alone may make things worse. However, it is possible that articulating the risk associated with specific mental health disorders and under specific circumstances may be part of the solution to reducing stigmatization.
Clearly, finding more effective treatments for mental health disorders would also serve to reduce stigmatization. However, since stigmatization appears to be so strongly related to the public's perception of risk of violence from people with mental health problems, I tried to summarize the literature. As you can imagine, in any complex literature, there is no uniformity of agreement. Some studies conflict with others, but there are some important conclusions to be drawn.
Researcher John Monahan estimated in 1996 that in the United States, approximately 3 per cent of violence is attributable to those with mental health problems.
What he concluded, therefore, is that if you could cure all of the mental maladies tomorrow, 97 per cent of the violence would remain. In other words, the risk of violence to the general public from those with mental health disorders is quite small and does not correspond to the public's apparent perception of the risk, which leads to an increase in stigmatization.
Although this statement is true, there does appear to be some increased risk of violence from those with mental illnesses. It is wise to acknowledge that. This occurs particularly with those with severe mental illness and is magnified significantly when the individuals are also substance abusers. Monahan found that there was no increased risk of violence in schizophrenics when compared to the base rate of the community unless they were experiencing active psychotic symptoms, and particularly if they were also abusing drugs.
Swanson identified certain symptoms that increased the risk that people with mental illness would act in a violent manner toward others. These psychotic symptoms included delusional beliefs that others were controlling how they moved or thought, against their will; that others were plotting against them, or trying to hurt or poison them; that others were able to insert thoughts directly into their minds or steal their thoughts; and that they were being followed. Those were the psychotic symptoms that increased the risk, and in combination with major mental illness and substance abuse, are the factors that likely lead to an increase in violence, which is what people are afraid of and which leads to stigmatization in significant measure.
Those with anxiety disorders showed no increase in any risk factor with respect to public well-being. Those with affective disorders or depression showed only a very mild increase in risk.
I will not go into all the conditions that might create risk. However, psychotic symptoms of the kind that I have mentioned, substance abuse and major mental health disorders are risk factors.
The position paper by the American Psychiatric Association in 1998 reiterated the point that the vast majority of violent behaviour is caused by people without mental illness. Those most at risk when there is violence are family members. The general public has a relatively low risk. It also points out that people with mental illnesses are themselves at significantly increased risk from harm from others who may fear them and, therefore, react toward them in inappropriate ways, and also from self-harm.
In terms of reducing stigma, public information campaigns that seek to identify those risk factors that do increase violent potential or risk may be useful.
The last point, which will take some time to develop, is that, in part, stigmatization results as a function of the system of mental health care that has developed in Canada over the years. The present system is largely based on the biomedical illness model of mental health disorders, which we know is increasingly focused around pharmaceutical treatments.
My issue is not with the biomedical model, which has been very useful. My issue is more with that model as it relates to these particular conditions. We see drug costs now that exceed physician billings, and we know that there has been an increase in pharmaceuticals. I have seen the same people come in the door, get into a bed, get out of a bed, go out of the door and then come back. We have a revolving door system. I am not sure that employing the sickness model has worked particularly well, or that overly medicalizing some of these problems has worked very well either.
Internist and physician Dr. George Engel first proposed another model, which he called the bio-psycho-social model, with respect to mental health disorders, and maybe health disorders more generally, in 1977 in an article in Science. This is powerful because, in contrast to the biomedical model, which focuses almost exclusively on biology, Engel's model focuses on biology, sociology and the psychology of health. This is a powerful model for moving forward with advances in mental health, and will fit in with the testimony of some of the other presenters.
The biomedical model in mental health has focused a great deal of our resources on hospital-based care, which is expensive because it needs to be provided 24/7 and in shifts. Often, too little money has been left available for community services. The biomedical model is well entrenched. It has many influential and powerful special interests and a paradigm shift to anything that approached the bio-psycho-social model would not be easy.
On the other hand, I think our present situation is a significant one that distorts the breadth of clinical services that are available to individuals with mental health disorders. We need a rebalancing of the relative distribution of resources between services based on the biomedical model, which is useful, particularly in acute psychotic conditions, and the bio-psycho-social model.
The importance underlying these models is more than theoretical. The model that you implicitly use to examine a patient significantly influences both what you see and what you do. It is not just a theoretical model in some academic's mind that does not make any difference. It does make a difference.
The Chairman: We will have lots of questions. Next we have Bronwyn Shoush, a board member with the Institute of Aboriginal Peoples' Health based in Edmonton.
Ms. Bronwyn Shoush, Board Member, Institute of Aboriginal Peoples' Health, Canadian Institutes of Health Research: I think that the subject of mental health, and stigma in particular, which you are addressing today, is a very important one. I was introduced as a member of the board of the Institute of Aboriginal Peoples' Health. That is one of the Canadian Institutes of Health Research's boards. Our scientific director, Dr. Reading, who is located at the University of Toronto, will be submitting a paper to you on behalf of the institute in due course, I believe by the end of the month.
I would like to say I am here as a layperson. I am a lawyer and the Director of Aboriginal Justice Initiatives for the Alberta Department of Justice and Solicitor General. I have a very good job. It takes me to Aboriginal communities throughout the province, both First Nations and Metis communities.
We know that in these communities, and the same is true throughout Canada, mental health issues are a serious concern. The ways in which they have been addressed on behalf of Aboriginal people have not worked well.
One of the results is that Aboriginal people are significantly over-represented in the criminal justice system and in the child welfare system.
Aboriginal people have a significantly worse well-being and health status than other Canadians.
We have heard from community members that that status will not change until we are able to focus on those communities rather than on individuals.
That speaks to Mr. Arnett's comment on the medical model, which tends to look at the physical person who needs to have something done to turn his or her health around.
In Aboriginal communities, we have heard that we need a holistic approach to health, including mental health. You will not help the person if you are not able to address the four components of health.
I refer to the physical, psychological, mental and spiritual aspects. If any one of those is out of focus, the person will not be well. At least for Aboriginal communities, the focus only on the physical has left many people in some trouble as far as stigmatization is concerned.
I have read the paper that identifies stigma. I would like to add that stigma might be seen as a veil over a person that prevents others from focusing on that person. There needs to be a way to lift that veil and take a look at the person and not see only things that are different about him or her. This is true whether a person looks different because of race, a mental condition or some other disability. When you only see that, you do not see what contributions the person could make to the community.
I have some personal experience in my own family with my daughter. Many people would think that she has mental disabilities. However, I know she does not feel she has. She has spastic cerebral palsy and has been identified as having about a grade-3 school status. She has been able to live and function very well for 25 years with that condition. She also has diabetes. She does not look upon herself as a person with a disability or a person with diabetes. She feels that she is ordinary in every way. In looking at my family, I have to say that her health status is the best of anyone among us. She seems to be well, despite the conditions with which she has to live.
In terms of stigma, the community might look at her and think that there are limits to how she can contribute to or participate in society, because the first thing you might notice about her are the conditions that I have just mentioned.
Those are some of the myths and the realities.
We have heard about a bio-psycho-social model. I would like to stretch that a little further to say that a holistic approach to mental illness, for Aboriginal people, at least — and it might work well for other people — would be to take a look at the social determinants that might assist them to live better lives. If homelessness were an issue, then it would need to be addressed. Perhaps appropriate schooling or recreational opportunities would be helpful, instead of always focusing on a person's single issue.
Aboriginal people like to take traditional approaches to wellness in communities. Historically, Aboriginal people did not look at persons with mental illnesses or conditions as something detrimental, but rather as a gift to the community. They were seen as people with extraordinary skills and gifts who were closer to the creator. In that regard, I wish to refer to a book that received a Nobel Prize. It is by an author from Japan who wrote about personal matters concerning his son, who had a disability. He was encouraged to leave well enough alone and not think that the child would go on to accomplish anything. In fact, this young man is a savant and now a renowned conductor of music.
You can see that Aboriginal people and others have different "world views" on mental conditions, and what can be seen as gifts as opposed to challenges or illnesses.
I wish to speak briefly about a legal model of which I understand you have heard something. I am lawyer. However, I would not suggest to you that a legal model or legislation is the best way to put in place support systems for persons dealing with stigma. We should not look to promote litigation or that kind of activity because it does not work well. We need to find ways to get people in communities to know each other and to identify each other as part of the same community. They should be seen as people who have something to add to the community rather than adopting an us- and-them litigation model. That would look to problem-solving methods in Aboriginal communities and others. It would include mediation, Aboriginal peacemaking and talking and wellness circles. People would have a way to be part of the community.
I wish to identify one area of law that I think has had a significantly negative impact in the mental health area and on stigma in particular. I refer to privacy legislation. Privacy legislation is seen, at least in Aboriginal communities, and I believe it is true elsewhere, to be a detriment and to promote secrecy concerning health matters. It is seen as not allowing people to discuss matters and feel that they are a normal part of the human condition. It does not allow people who might be able to offer supports to do that in a timely way. I see this as true in the work that I am doing, where people are facing a mental health challenge episode and the first person of contact might be from the RCMP or other police force. Health care providers have no right to share information that might alert the police to the fact that this person has a certain condition, and if approached in a certain way there might be a better result.
I consider privacy legislation to be an ethics issue that should be on the table. I would be interested in providing you with further information on it if you would like. This would also look at the forensic side of mental health.
I would like to close with a suggestion that the medical model has not worked well insofar as it has left the primary care of persons off the table. Rather than being proactive, we have taken a reactive approach by bringing persons into care in hospitals. One of the ways we might be able to improve the health care system would be to have public population health approaches in mental health, as well as in other areas of health. I know it is a serious issue now with SARS. We know that public health and population-based health needs some attention. It would probably work well in the mental health area as well.
The Chairman: Three years ago, this committee dealt with Bill C-6, which was a privacy legislation bill, although not related to health. We reached the conclusion that the bill would cause all kinds of problems in the health care sector. Over the objections of the government, we amended the bill. That amendment stuck. I am intrigued by your comment. It is counter to the views of the privacy zealots, and therefore an interesting observation.
Next, we will hear from Ms. Nancy Hall from Vancouver.
Ms. Nancy Hall, Mental Health Consultant, As an individual: I speak to you as a sister of a man who lives with serious and persistent mental illness, as well as a health policy consultant. My lived experience will no doubt surface in what I have to say to you today.
Currently, I am working as a consultant with the Interim Authority for Community Living in British Columbia. As such, I work with people who have developmental disabilities, taking into account their mental health needs. I am also working with the Department of Psychiatry at the University of British Columbia.
The ideas that I present here today are coloured by having been the first Mental Health Advocate in British Columbia from 1998 to 2001. I held that position until the Liberal government closed that office.
I understand that the committee is very interested in the subject of discrimination. I followed the testimony of others given here.
I come from the school that calls it what it is, which is discrimination. In any of the other disability organizations in which I am involved, they do not use the word "stigma." It is a polite term. They use the word "discrimination." To me, discrimination is when someone with a mental illness is systematically treated differently from someone who does not have a mental illness.
As the Mental Health Advocate, I wrote reports to government, including one entitled "Pump Up The Volume," in which I said that things are in chaos, but I am trying to be positive. The second report was entitled "Growing The Problem," because, I told them, it is still chaos and you had better start doing something else.
In those reports I described the problems of discrimination reported to me by over 2,000 British Columbians. I heard discrimination stories about living with their families and the diagnosis of mental illness. The perspective was always from those living with the experience. I would be pleased to submit those documents to the committee as evidence.
In analyzing people's experiences and giving advice to government about how to address issues, I divided the experiences of discrimination into challenges to people's rights in the areas of legal, therapeutic and social issues.
I will talk briefly about discrimination in legal rights. People with mental illness regularly have their rights as citizens taken away. Many health care administrators, when I speak about the need for a bill of rights for patients in the mental health system, do not understand that mental health patients are the only people who come into the health care system who can be treated against their will. Indeed, the Supreme Court is currently hearing a case on this particular issue.
While I am not here today to discuss this issue, I will say that people with mental illness who have rights taken away are treated poorly in parts of the country. Currently, New Brunswick, Quebec, Alberta and Ontario, although it is changing with the devolution of the provincial psychiatric hospitals, are the only provinces that provide advocates to people who are involuntarily detained under the mental health acts. Not only are people badly treated, but due process is not often followed.
In British Columbia, as in many provinces, there is a Mental Health Act that sets aside the rights of patients and due process. In 1998, 150 people in our province detained under the act had to go to a review panel to address the fact that their rights were not represented, despite the fact that the Mental Health Act says that you are supposed to have someone along to help you.
This is just the tip of the iceberg. The committee might want to know how many people are detained. When I tried to find that out, 40 per cent of the hospitals in our province were not reporting those statistics.
I hope things are better, but since the closure of the advocate's office there has been no reporting of outcome on these critical issues. There is no public or mandatory reporting on other restrictive procedures such as electroshock therapy or the use of restraints, as in other jurisdictions.
The disturbing thing in the legal area was that so many people with mental illness are untreated. They run into trouble with the law and end up in the criminal justice system. In our province, the former director of corrections and mental health services said that 15 per cent of the people in British Columbia correctional institutions have a diagnosis of a serious mental disorder. Another 27 per cent met the criteria of the diagnosis.
By failing our people in the sick care system, we are transiting them to the justice system. While they are there, they are horribly discriminated against. It is simply not fair or right.
People are held in pre-trial situations twice as long because they are not considered fit to stand trial. Once people have heard and received their charge, they are frequently so disordered that they are unable to follow through with conditions of parole. They may have had two or three breaches of parole. They not only need to see physicians, nurses or support workers, but also a parole officer.
People with mental health disabilities are treated systematically differently. They are discriminated against in the justice system because of their disability.
We need therapeutic approaches to treating people with disability who fall into trouble with the law. Public order and public safety would be served by a different approach. Many U.S. jurisdictions have developed mental health courts. In New Brunswick and Toronto, they have developed a new approach. The person receives treatment rather than jail time.
I want to move on to discrimination against people's rights to health care. It is important for honourable senators to understand that just as individuals experience discrimination in the day-to-day process of care by being slighted and told unkind things, so is there an organizational discrimination within the health care system.
Governments at all levels respond systematically differently to the needs of people with mental illness. People respond systematically differently to the needs of people with mental illness compared to the needs of people with physical health disabilities.
Let me explain. Someone with chest pains comes to emergency. Trained staff members examine him. Should he have a cardiac arrest, a "code red" is called. Individuals who have annual certification in cardiopulmonary resuscitation are called to attend. People are supported while recovering in whatever intensity of care they require.
Someone with a mental illness comes to emergency in a psychotic crisis. More often than not, the person who brings the individual to emergency is a police officer who has no training.
I have done much work with the RCMP and other police in order that they might better and more sensitively respond so that the crisis is not escalated. I agree with some of the issues that Ms. Shoush raised in relation to exchange of information.
I return to my person in emergency. It is rare that anyone is trained to work with this person in an appropriate way because emergency is staffed with medical/surgical nurses. That which is done usually elicits a flight-or-fight response. The person may lash out, and a "code white" is called.
That does not mean "a person with mental health issues." It means "problem patient." The code white team is not composed of people with training in non-violent crisis intervention. That team is usually the security guards or the kitchen staff. In most cases, their job is to wrestle the person to the ground.
If considered a danger to self or others, the person is locked up and isolated. In many rural areas, people may be restrained in this way for 48 hours in areas without washrooms or facilities of any dignity.
This is Canada. Therefore, we see discriminatory actions within the health care system at every level. The lack of dignity afforded to people in this country is terribly troubling to me.
I read today in The Globe and Mail that parents in Ontario with children with autism have been successful in getting the courts to provide treatment for children over six years of age. It is telling that families of people with psychiatric disabilities have to go to court to get treatment that other people with other kinds of illnesses simply receive. This discriminatory experience of systematically proceeding with different quality health care is replicated throughout the process.
Consider these figures from B.C. and ask yourself if they would be allowed in any other health care model. One in seven people —
The Chairman: You are reading the entire report and it will cut into our question time. Could you hit the highlights?
Ms. Hall: If one in seven people are re-hospitalized within 30 days, there is something wrong with the system. You would not be in business if one in seven customers came back.
People often present with more than one disability. People with a mental illness may have an addiction or developmental disability. They may be from a different ethnic group. The more differences they come with, the less likely they are to be received and given proper care.
I want to conclude by talking about discrimination against people's rights as members of communities. People have rights enshrined in the law of the land, but they also have rights as citizens in communities where there are shared values of participation and coming together. However, as Mental Health Advocate, nine out of ten people told me that once their diagnosis was acknowledged, once they were open about their diagnosis, people treated them systematically differently.
In most cases, the root cause of that is fear of violence, and the sad thing is that actually people with mental illness are more at risk of self-harm. In my province, a person a day commits suicide. Even though the reality is that they are more at risk of doing harm to themselves, the public perception is that they are indeed a danger to others, which simply is not the normative truth, as Dr. Arnett explained.
One of the biggest areas of discrimination is access to education and employment. In many cases, people are getting a quarter of the dose that we think is effective treatment. We know that severity of illness is no barrier to employment, but lack of support and employment strategies as part of comprehensive community care are largely lacking in all provinces of Canada. Pockets of best practices exist, but our health care system is not systematically delivering what we know works to enable people with serious and persistent mental illness to be productive members of society.
Further, at least in British Columbia, it is becoming even less likely that people will get employment support because as we have cutbacks in budgets at the regional level, the criterion of medical necessity is being used, so social health supports related to housing and employment are being eliminated in order to meet budget targets. In taking away these supports, we condemn people to a live of poverty and dependence.
We are moving away from an institutional model, but in that model we provided people with care, shelter, nurture and sustenance — food. As we have moved people out of the institutions, we simply have not provided the housing. My brother has waited six-and-a-half years to get supportive housing in Vancouver. The right to shelter is a significant issue, and I do not think we need to talk about it in terms of homeless. These people have a right to a place to live. Two years ago, in my report to government, I identified 70,000 people with serious and persistent mental illness in British Columbia, and only 5,500 supported housing spaces. We add 200 here, 300 there, 500 there, but we are not really addressing the problem with the size of response required. I want to emphasize that to honourable senators.
You are focused on solutions, so I want to say a couple of things in closing. Everything must be done to ensure that people with mental illness and their families are the subject of the enterprise, not the object. They need to be at the planning tables. I am really impressed with and respectful of the fact that you began your sessions hearing from people with mental illness and their families. Without that, we get talk about "the mentally ill." We do not talk about "the cancers." We talk about "decanting patients from hospital," instead of "finding people a place to live." I think we have to address the language, because it speaks about a relationship between the system and the people that simply is not going to take things forward.
Certainly the federal government would not plan programs with regards to HIV/AIDS or breast cancer without having people with experience at the table, but this has happened regularly with mental health. In the United States, as a policy response and by federal legislation, states do not get money for mental health care unless consumers and families sign off on the plan. That is a policy response that could be used here.
The next point is that the treatment of people with mental illness cannot be made a political issue. It is something we must do simply because it is the right thing to do for some of the most vulnerable people in our society. Strategies to ensure accountability have to put in place outside the political arena. That is why the national health council idea is so important. It is also important that there be people at the table who know mental health and mental illness. It is the "orphan child," to use your language, in the health care system, and people in the health sector do not understand the mental health sector, really have not made it their business to do so and are not often measuring the right thing.
I noticed yesterday that Minister McLellan, at the urging of the Auditor General, is going to now suggest annual reports to the House under the National Drug Strategy. Many other jurisdictions have annual reports on a strategic initiative to the legislature, and this should be followed in this area.
I want to emphasize again that a person a day is committing suicide. There is an elevated standard mortality ratio in terms of how people with mental illness are doing. Not only are they committing suicide, they are also not getting the regular primary care they might need because they simply are not well enough to follow through. These things reflect the fact that mentally ill people get lost in the system and are treated systematically differently.
Finally, I want to suggest a different model. Most of Canada is engaged in a deinstitutionalization process. I looked with a great deal of interest at the model in Italy. It is most often cited as one that can achieve community living with positive gains for people. They changed the relationship between the patients and the providers to one of citizens and providers. Coercive treatment such as restraints and involuntary ECT was stopped, and psychiatrists and nurses realized that their culture of command and control had to change to one of enabling people with disabilities to be well and be citizens, which is very much what my colleagues have said here.
The second part of this model is to support people to work and reconstruct long-term patients as people. I think this is really important in terms of establishing social co-ops and ways that people with mental health disabilities can be employed in the system in providing care. In Italy, 70 or 80 per cent of the care in the social field is provided in a social co-op model that employs people with mental health disabilities.
A much better emergency crisis response system is also critical. We need to interrupt the cycle of chronicity with rapid and effective crisis intervention and stop separating people from their community, their family and support systems the way we do.
In terms of monitoring, again on the theme of consumer and family involvement, there are strong volunteer family and self-help associations that work to fight against social exclusion and for the affirmation of rights as citizens.
Ms. Rena Scheffer, Director, Public Education and Information Services, Centre for Addiction and Mental Health: Thank you for the opportunity to be here today. Mental illness is characterized by shame and silence, and you cannot change what you do not discuss. I for one am delighted with this opportunity, and I applaud you for taking leadership in asking us to talk about mental illness.
The stigma of mental illness is a serious impediment to the well-being of those who experience it. It affects people while they are ill, in treatment, and even when it is a distant memory. It affects people in all areas of their lives.
On a systemic level, stigma as a social phenomenon affects the very policies that govern us. It affects the nature of access to funding for services. It affects policies that govern eligibility for social assistance or the right to refuse treatment. At the level of the community, stigma often affects how organizations provide services to people and their families. Employers, schools, social services and health care providers have been shown to have stigmatizing attitudes toward people who receive mental health services. At the individual level, for people who have a mental illness, stigma prohibits them from seeking help, affects their self-esteem and creates profound changes in identity.
There is no doubt that changing the way we deal with people with mental illness is a daunting challenge, but there is hope. In this presentation, I will talk about effective strategies that have been proven to change attitudes. Before I do that, I want to underline that the challenge is not only about compelling people to increase their understanding of the experience of mental illness, but also about moving people to recognize and acknowledge their own mental health problems and those of their family members.
It is no wonder that negative attitudes toward mental illness remain. Estimates are that two-thirds of people who require treatment for a mental illness do not seek help, largely because they are either unaware of the symptoms or because of the stigma associated with the illness or its treatment. If people do not acknowledge their own mental health problems, how can we expect them to be supportive and accepting of others who do?
As I said, there is reason for optimism.
If we look to other groups who have suffered the effects of social stigma, like the gay and lesbian community or those with AIDS or cancer, they have successfully ended or minimized stigma by creating widespread change in attitudes. They have come at the issue strategically in a variety of ways, and I will speak to that in a couple of minutes.
First, I would like to address some of the issues that characterize the stigmatization of people with mental illness and their families. Stigma leads others to avoid living with, socializing with, working with, renting to or employing people with mental disorders. It prohibits people from seeking help, as Mr. Arnett noted.
People who have had a mental illness report pervasive discrimination in the workplace, and many feel they must lie on job applications. On an individual level, stigma not only leads to low self-esteem, isolation and hopelessness, but all of those characteristics also have been found to be predictors of poor social adjustment, so people end up in an endless cycle of poorer quality of life.
Stigma affects not only people with mental illness, but it has also been found and reported to affect their families as well.
For members of ethno-racial and ethno-cultural communities, the experience of mental illness and the related stigma is increased exponentially. It has been suggested that the effect of stigma may be even more detrimental for these communities than for the general population.
Unfortunately, for those communities, there is an almost complete lack of services. Therefore, they find themselves stigmatized and unable to access help. In many cases, there are myths and inaccurate knowledge in these communities on the causes of mental illness and their treatments. In some communities, stigma associated with mental illness brings shame to the family, such that it is felt that it will affect the marriage potential of other relatives. As a result, families tend to keep the mental illness private and are most reluctant to seek professional help.
In some communities, religious and spiritual beliefs are linked to causes of mental illness and, in some cases, may influence the treatment. For many of these communities, the stigma of mental illness is layered upon racism and other forms of discrimination, leaving individuals and their families in a complex, highly vulnerable and often helpless and hopeless situation.
You cannot talk about the stigma of mental illness without talking about violence. I would just like to add a few items to that. While it is true that some people who have a mental illness do commit crimes, the public perceptions of mentally ill persons as criminally dangerous are exaggerated. We know that 80 to 90 per cent of people with a mental illness never commit a violent act; in fact, they are far more likely to have an act of violence committed against them.
As a predictor of violence, mental illness ranks far behind other risk factors like age, gender and history of violence or substance abuse. We do, however, need to confront the stereotype directly. We need to learn more about what it will take to change that misconception that people have.
Let me move into what works. As I have noted earlier, there are effective practices which we can look to in order to effect change in public understanding of mental illness. The most promising strategy for impacting negative perceptions is increasing contact with mentally ill persons. No other strategy has been shown to be more effective.
The more that we can provide opportunities for society to meet with, listen to and understand the experience of those with mental illness, the more we can expect to see two results: the first is more favourable attitudes; and the second is personal relevance. Helping people to acknowledge their own mental health problems, and/or those of family members, goes a long way toward helping to decrease the social distance between them and us.
There is no question that the media have played a role in fostering negative attitudes. However, research has suggested that we can address misconceptions about mental illness and can be effective in nullifying the influence of negative news coverage of people with mental illness.
Among the strategies found to be most effective in creating understanding and acceptance is a comprehensive health promotion approach combined with a social marketing approach. Basically, a health promotion approach recognizes that attitude and behaviour changes are difficult to effect, but they can come about if you recognize that it takes a range of strategies. Therefore, I put forward four strategies that need to be addressed through a health promotion framework.
First, you need a social marketing strategy that is designed to raise awareness, encourage seeking help and promote positive understanding. Second, you need development of healthy public policy. I think all of my colleagues have talked about public policy, which will go a long way to contributing to treating people with respect and dignity and ensuring supportive policies for social assistance, housing and health care. Third, you need sensitization training for those who regularly come into contact with people with mental illness.
Ms. Hall talked about the police. The good news is there are efforts underway to work with law enforcement personnel to help them to develop alternatives to lethal force and to understand those strategies that would be more effective.
We need research to explore more effective treatments. The more that we can decrease the myths that exist about the illness and its treatments, the more we can help to increase public understanding.
I have been working in this field — primarily in health care communications — over the last 20 years, trying to help people to better understand mental illness and addictions. I am still here and I have not lost hope. I have seen, over the 20 years, more and more reason to hope that things can and will change. I will share a couple of examples of initiatives underway that provide us all reason for hope.
We have a program at the Centre for Addiction and Mental Health called "There is Help...There is Hope." It is designed to increase public understanding of mental illness and addictions, with a particular emphasis on encouraging people to seek help. It really reaches out to those two-thirds of people who have a mental health problem and who do not seek help, either because they are not aware of the symptoms or because of the stigma. It is really targeted at them.
The good news is that, in the first two years of this program, we found that approximately 78 per cent of those surveyed remembered the messages we were trying to get across, which talked about access to help. Forty-six per cent responded that they would seek help as a next step.
Another initiative is a new information centre that will be opening later this summer. The McLaughlin Addiction and Mental Health Information Centre will help people to access information and help. It really responds to the fragmentation of the mental health system — that people largely do not know where to turn when they are ready to seek help. They do not know who to call; they do not know who their health insurance will pay for and who it will not. They are faced with waiting lists and they do not know where to turn.
This service is, in part, a response to that fragmentation. It helps people to better understand and access the services that are available.
A very promising source of hope for me is the Global Business and Economic Round Table on Addictions and Mental Health. This is a virtual round table consisting of business, health and education leaders — including Michael Wilson, the former Minister of Finance — who have undersigned the proposition that mental health is a business and economic issue. Fifteen years ago, I would have said, "What do they know? What do these guys know about mental health and why would they care?" The good news is, 15 years later, they care, and they have recognized that mental health does have a bottom line, which is not a bad thing.
These influential business leaders have attracted the attention of governments and other business leaders worldwide. They are bringing much-needed attention to the issues of mental health, to the importance of early detection and the impact of mental health on work and productivity.
I would like to give one more example of an excellent program. That is the Workman Theatre Project, with which our chair, I believe, is familiar. The Workman Theatre Project has become known for putting a human face on mental health issues by producing professional theatre that not only focuses on mental health, but is also staged by a company of professional actors and people who receive mental health services. They have performed to audiences across Canada. More importantly, they have connected to the rest of the world through international festivals. Most recently, the Madness and Arts 2003 world festival was the first international festival that brought 185 artists and academics from nine countries to Canada and reached over 10,000 people in its first year. This is an interesting approach to using creative expression to educate people about mental illness.
Let me close with six recommendations: First, we need a supportive policy framework to ensure the provision of income support, housing, employment, court diversion programs and an accessible and comprehensive treatment system.
Second, we need social marketing programs to help increase public understanding. These programs must be developed to reach out to diverse communities and be tailored to their specific needs.
Third, we need fresh approaches to disseminating research information.
Fourth, the "voice" of those who have been affected by mental illness must be prominent in order to impact negative perceptions. Those families and clients must be involved in the development and implementation of these programs.
Fifth, we need training programs to raise awareness of the experience of mental illness, sensitize to stigmatizing behaviours and provide direction to create more accommodating environments.
Finally, we need a national strategy to coordinate efforts for maximum reach and provide appropriate levels of funding.
I want to thank you for the opportunity to offer hope for real change and for your leadership on this issue and hope you will continue to influence how mental illness is addressed and resourced.
The Chairman: I thank you all for your terrific presentations.
Senator Fairbairn: I really want to thank all of you for being here. This has been a terrific set of presentations.
I will start with the last first. When you mentioned people getting involved, I think that everyone around this table knows that we think of Michael Wilson. I am involved with the Council for Canadians with Disabilities, both physical and otherwise.
I have been at some of these public sessions where they are all there and it is a joyous gathering.
In spite of all of the obstacles that you have pointed out today in what is probably one of the most difficult issues in the whole health agenda, would you agree that in recent years, perhaps because of people being prepared to come forward, there have been significant advances in public understanding, or are we still struggling?
Ms. Scheffer: I am not sure it is significant. There have been improvements and I think we see those through things like the economic round table. Those of us who have been struggling with this issue for the last 20-odd years would never have secured the attention 20 years ago of the very people who sit at the tables now and who have committed to changing their own workplaces to places of wellness, to introducing initiatives that will accommodate people who are returning to work after a mental illness and to providing supportive and accommodating environments. There have been gains. Research will show you that in the U.K., for example, they can point to more significant increases in public understanding. It comes back to the "voice" and the personal testimonials. It has been demonstrated that putting forward someone who has had experience with a mental illness and can speak to that brings about the most change in attitudes.
Ms. Hall: I think it does, particularly in terms of young people who benefit from an early intervention approach. There is aggressive use of medication among the clinicians who have taken an interest in early intervention. If the first level does not work, we move on to the next. We do not let the person wander around while things are not working. They use peer support and deal with addictions and trauma up front. There is a different clinical approach among those who have gravitated to the early intervention approach, which is significant and powerful. There are pockets of innovation that are not system wide, which is the problem. There is reason to hope, but there is a clear difference in practice and standards applied to individuals who might go that route versus others. I am speaking about folks with serious and persistent mental illness, where my colleague may be speaking of the broader 20 per cent of the population who experience a mental illness.
Ms. Shoush: I would like to say that I think there is change coming in the communities. I think that we see young people as being much more open and receptive to including, as their peers, young people who may have mental illnesses or differences.
To give you a specific example of a government or a structure that may be looking at approaching this differently, Lethbridge is a place that has demonstrated lots of innovations in the justice and forensic areas. The Lethbridge justice project has looked at finding ways of taking young people out of the justice system and dealing with them in a different manner. It is also being expanded to working with persons who are facing mental illnesses. There are some changes coming, but in pockets and all over the place.
Senator Fairbairn: I have been further drawn into this issue through sports. One of the things that just fascinates and delights is to see the effects of the Special Olympics on children, in which a number of senators, such as Senator Eyton and Senator Johnson, have been involved for years. Even in the Paralympics, with which I am involved, there is a mix of the two. It seems to me that this, in a way, has helped to encourage participation, particularly among young people, and it maybe stimulates older people too.
The Chairman: Ms. Shoush, were you suggesting that young people have less of the stigmatizing attitude than their parents?
Ms. Shoush: I think young people are less likely to stigmatize a fellow young person, although I have no evidence to support that. My comment is intuitive; I look at my own children.
Mr. Arnett: I can give you some anecdotal evidence from my wife, who is a guidance counsellor in an elementary school. She sees the children who are different in any number of ways, with mental health problems or physical problems or in wheelchairs. Other kids often treat them attentively. As we grow older, we learn fears that we do not have when we are younger. Along with the fears comes the tendency to stigmatize. I agree with Ms. Shoush that there is hope, and I agree with you, senator, that there is hope. I think we are at the leading edge of it, but we have a long way to go. We have to start changing structures and look at the issues more comprehensively, so that we focus on not only the biological but also the psychological, the social and the housing, and on the impact on work and where people live. These elements must all be addressed.
The existence of this committee and its present focus, as well as Michael Wilson's group, shows a much more important perspective than in the past; that is a sign of great hope.
Senator Fairbairn: I have to go back to the beginning, when you galvanized our interest by discussing the privacy issue. We have had the privacy issue before this committee a great deal, not specifically in the area of mental illness, but outside of our health studies. We have had legislation to "open up the door" a little. We heard throughout our health studies about the great need for a better system of disseminating and collecting information; and how people in various parts of the country would be thus better enabled to understand all of the advances that are being made. One of the big issues is the information being withheld because of privacy constraints.
We have had difficult debates around this table on this issue and there are strongly held views, both pro and con. It would seem to me that perhaps this committee could make some powerful statements, with your help, on how essential it is to open the doors for people with mental disabilities. In that way, everyone could understand it better, including the need for sharing of information between people within the health system.
Ms. Shoush: I support that very strongly. In Aboriginal communities, privacy is not understood as a strong Constitutional value. Some have moved it up by using the Charter of Rights to assert that it is a strong Constitutional value. Aboriginal communities would say that they have a different world view and that the community is the focus. They believe that the community unit deserves to be the focus of concern and that information to help the community be whole and well should be available and shared. People could then have strong, resilient and safe communities.
People may be afraid of a person with a mental disability because they have no knowledge about the condition and what it might lead to. Privacy legislation puts up many kinds of barriers to better health. It also puts up barriers to research that might allow us to come up with better strategies for mental health supports for persons needing them.
I can give you a direct example. We have had a number of First Nations communities in Alberta identify prescription drug abuse as a significant issue. They have asked for our help in the justice area to address this problem. We have not found a way to overcome the barrier of the federal privacy legislation, which does not allow us to identify the person receiving multiple, even thousands of, prescriptions each week that they take into the community streets and sell or hand out to young people, causing addictions.
We are not able to get behind that veil of secrecy to the persons who are contributing to this problem so that we can address it.
Mr. Arnett: As a clinician, I cannot go down the hall to ask a colleague, who has seen a patient that I am about to see, what they know that might help me to better evaluate that patient. The intent of the law is noble, there is no question about that, but it does impose limitations that impact negatively on patient care. A large part of patient care is having access to history and information. The law creates a significant limitation.
The irony, in one way, is: What is the rationale for such privacy? Is it to hide the fact that people have mental illnesses? Is it to protect the unauthorized dissemination of knowledge and information? Sometimes, I think it almost aids and abets stigmatization by saying, "That is covered under the Mental Health Act and you cannot have access to it." In some ways, it creates more stigmatization than many other things.
Senator Fairbairn: It may be an old-fashioned concept that you are protecting the person by —
Mr. Arnett: — paternalistic means.
Ms. Hall: Just a point: You might be able to get around that in Vancouver through the after-hours emergency service that includes a Vancouver police officer and a social worker or a psychiatric nurse from the mental health system. The two databases can be cross-referenced for problem solving. The second point is that sometimes, we simply do not share information when it is legally possible. I visited Seattle, where every morning, the jail sends over to the mental health system the list of folks that ended up there the night before. They ask staff to come and help them sort out the mental health issues. They do that because anyone entered into the criminal justice system is a matter of public record.
We do not make that kind of information exchange that is possible, with the result that people with mental illness get lost in the justice system. There is the issue of the law and there is the issue of lack of collaboration.
The Chairman: That is one of the issues at which we will look. I spoke briefly with the director of the juvenile detention centre in Ottawa. Some 70 per cent of his inmates would have had some form of mental illness. To pick up your point, that is his catchment area. If you have data from elsewhere in the country, we would love to have it.
Senator Morin: I would like to be clear on this. Are you saying that we should disseminate personal health information without the patient's consent? If so, would this be strictly for mental health problems? I am sure that patients with other illnesses, such as AIDS, would not want this information disseminated. Is that what we are saying? Certainly if a patient consents to the sharing of information, that is another matter.
Are we saying that this very personal information should be disseminated without the patient's consent?
Ms. Hall: It is always used in a crisis situation. The situations with which I am dealing are crises. The person is considered a danger to self or others. The police and/or the after-hours emergency people have been called to the scene. They need to know what is happening.
It is not a matter of casually sharing information. There is a purpose to the action, which is to give the person the best possible and the most knowledgeable assistance.
That is not sharing information widely. I dealt with many issues where individuals were concerned about their privacy being violated through simple things like being lashed down to stretchers in emergency rooms as people in a mental health crisis. Their privacy in the community was totally destroyed.
I am talking about situations where people have violated the law and ended up in jail and information can be shared because of what has happened. I am also talking about situations involving people in an emergent crisis of danger to self or others, where it is vitally important to their well-being to know what is happening.
Senator Morin: You are narrowing the field. This is not what I heard earlier.
Ms. Shoush: I can add to that. From an Aboriginal perspective, we should not be promoting privacy or secrecy if that will have an adverse impact on the health of the community and individuals within that community.
Before this legislation was in place, people kept track of and assisted each other. If we are not now able to know anything about a person who may be in need of support or help, we cannot provide that or work to help hold the community together.
We have been looking at possibly introducing community consent for individuals in a community that may have a significant number of persons with addictions to drugs, alcohol, prescription drugs or other compulsive behaviour. The community would give its consent to the sharing of information so that we can assist persons in addressing a problem, be it with health, justice, children's service or social services. The way to treat this is holistically.
Senator Morin: Are you extending this to all diseases or is it strictly mental conditions?
Ms. Shoush: Speaking as an individual, I would say we should allow a broad sharing of information on health and well-being if that will support better public health. If there were no stigma attached to AIDS, having the information available might actually assist the community to be healthier.
I am not saying that we should do that now, but if we could find a way for these issues to be seen as health matters requiring attention and not stigmatization, we should move towards that.
Mr. Arnett: In general, patients should consent to the release of information, albeit health or mental health information, unless it is an emergency condition. On the other hand, I think that the legalistic processes that are sometimes required to get this information, such as a patient signing, are cumbersome ones that impede progress. In general, patients should have the right to know what information is being requested and give consent.
Senator Roche: I also want to thank the witnesses. Mr. Chairman, once again we have had a tremendous learning opportunity here from the selection of witnesses.
In view of the hour, I will try to confine myself to a couple of questions. The first is to you, Ms. Hall.
You made reference to the closing of the mental health advocacy office. Senators here know that I do not approach issues on a partisan basis. The colouration of the government that did this in your province is not my central concern. Governments everywhere have too often cut social programs in the name of saving money, with deleterious effects.
Therefore, could you tell us some of the consequences of the closing of your office? You mentioned that you had dealt with 2,000 people. Is there any empirical evidence of the consequences for the identifiably mentally ill?
You linked some of your comments to the prison system. I am not sure if you meant to indicate an increase in the prison population of the mentally ill.
I am sure that part of your work has been in education. Has that suffered?
Can we point to the closing of an office such as mental health advocacy having increased the costs to deal with the problems down the line that you were dealing with up the line, if I can put it that way? Was the effect worse in cost terms than what was originally spent by your office?
Ms. Hall: As a scientist, I would have to say that I could not prove that definitively because I have not undertaken the study. In terms of policy, the government would say that they chose to replace it with an advocate at the cabinet table. My response to the premier at the time was that that was great, because we needed resources for mental health and mental illness. However, to say that we do not need an advocate because we have a minister of state for mental health is like saying we do not need an ombudsman because we have a premier. They do different things.
I was slated to do educational programs for the sheriffs, court workers and financial aid workers. I was to do much cross-sector work to bring people with mental illness to the table in order to discuss the experience of living with mental illness. That work is not happening currently.
Please appreciate that in British Columbia, overall cutbacks to social services are extensive, at 30 per cent. It is difficult to pin anything on any specific cuts.
There is no education taking place. There is nowhere to go when your child has committed suicide. Everyone worries about finding out who is to blame, but no one wants to talk to the parent about what has happened.
The places for people to go have been dispersed. I am sure people find other places to go, but there is no central place.
It is helpful if there is one line and one place. Many other countries around the world have this kind of office. Canada is unique in not having formalized advocacy positions.
Consumers and families have said to me that they felt strongly that they lost their voice.
Senator Roche: Perhaps I overemphasized the quantification of this issue. Would you say a final word about the deleterious consequences in the mental health field that you have experienced or observed?
Ms. Hall: The focus on people is gone. The participation of consumers and families at the table is not as strong as it was, but the system carries on. Consumers and families are persistent and find ways to be involved, including at this table. Thank you for the opportunity.
Senator Roche: What was the budget of your office?
Ms. Hall: It was small, only $250,000. It was peanuts in relative terms.
Senator Roche: Thank you. Ms. Scheffer, I want to thank you for saying that you have not lost hope after 20 years in the business. That was an inspiring statement to me. People like you are a blessing in society.
You talk about the media in your recommendations. You are trying to change the misconceptions about mental illness that are prevalent in the community at large and you pointed to the media as an instrument. You said that they have too often fostered the negative view.
What would a positive image be? A sentence or two later, you talked about education and health promotion, with the media maybe doing health promotion and training. I can understand that, but if we are to deal with the privacy issue that was discussed here a few minutes ago, how can the media responsibly and constructively portray mental illness in a positive manner?
I go back to Mr. Arnett's opening comment about the position of Mr. Eagleton in 1972. I thought it was a disgrace that a man who was otherwise qualified to run for office in the United States appeared to be disqualified because he had seen a psychiatrist. Would that happen today, in your view? Should the media have balanced the negative reporting they did on Mr. Eagleton because he went to a psychiatrist, and the implication, therefore, that there must be something wrong with him, with stories about what the man had done in his career in order to provide more balanced coverage?
I am trying to get at the privacy angle as well as responsible reporting by the media on cases of mental illness.
Ms. Scheffer: I can give you example after example of positive stories of people who have suffered from a mental illness and who have recovered, whatever that means; they have regained their lives; they are leaders in the community and they happen to have a mental illness. We do not hear enough of those stories. In the brief I submitted, I report on some research that took a look at media reporting and how they disproportionately report the negative, sacrificing the positive, in those stories that deal with the successes and leadership of people who have succeeded in spite of or because of their mental illness.
We — and I will take responsibility as a health care communicator — do not proactively create sufficient opportunities for the media to tell those stories.
On a positive note, over the last number of years we have seen more champions coming from the media. Reporters from The Sun, The Star, CBC, and Chatelaine magazine have all spoken openly and honestly about their experiences with mental illness and addiction and have become champions for us. They have become wonderful friends who obviously have an ability to report well on these stories.
Mr. Arnett: I have a point that goes back to the model. The notion that you cannot govern, that you cannot lead, that you cannot do anything else because you have a mental illness, applies to an extremely small number of the people who have a diagnosable mental illness.
The Chairman: You mean that in fact, it only applies to a small number?
Mr. Arnett: That is correct.
That is the first point. There are people with mental illness who cannot find their way around or manage their own affairs. They are small in number. Schizophrenia affects one per cent. Anxiety affects 12 per cent. It is far more prevalent. However, the point is that it is a very small number of people who, by virtue of mental illness, probably should not be a position to run for the U.S. vice-presidency. Therefore, most should.
We "biologize" everything and make everything into a brain disorder. If I said you were unhappy and depressed today, you would say it was related to some circumstance, but you would be fine tomorrow. If you ascribe it to a brain disorder, as we do with modern imagining techniques, whether it is in the frontal lobes, the hypothalamus, the sub- cortical structures or wherever, you ascribe a permanence not only to the existence of the condition, but to the infirmities and disabilities that the myth confers on us.
If you are troubled today by a circumstance that upsets you, that does not mean you should not do anything next week or that what you did last week was bad. The more we "biologize" the condition in isolation from the psychological and social factors, the living circumstances and the work environment, the more we confer permanence and severity on things that are neither that permanent nor that severe and should not disqualify people. The media, being powerful, could do a great deal to put this into perspective.
Senator Roche: Would candidates be disqualified today after the revelation of a type of mental illness, psychiatric treatment or something similar?
Mr. Arnett: I regret to say I believe the answer is yes, especially if it required shock treatment or anti-psychotic medications.
The Chairman: Ongoing medication of some kind?
Mr. Arnett: Unfortunately, we have not passed beyond that point yet.
Ms. Scheffer: There is an additional part that mental health agencies can play, as can the media, and it pertains to reporting on suicides, reporting on negative stories and making speculations. There have been discussions with the media about not reporting on suicides. That is number one. That is something we should continue to discuss. Secondly, there is not much of a story if the media do not have anyone to talk to.
For example, when there are stories in the media involving someone who may have had a mental health problem or been treated for one and reporters call our organization, our policy is we will not discuss, or be seen to be speculating about, the individual who is the subject of that media discussion. Not only will we not comment on the specific story, we will not talk in general terms, for example, and give our opinion on a mother who might take her child and jump in front of a subway train. We choose not to participate in that kind of speculation.
Ms. Hall: I want to say that there is another role, in some ways disagreeing with what has been said. The role I often played when that happened was to explain what postpartum depression was or to find a clinician who would do that. Frequently, in cases where someone with a mental health disability got into difficulty with the law, there were two victims. You have to try to explain the perspective of that person, because there are attempts to lay blame and to see the person as evil. They are often just as much victims as others. I played that role. That is not happening now and it is missing from the discourse. I appreciate there is a policy difference and there was a difference in terms of my being an advocate.
The other thing that is missing since the office closed is an independent annual accounting of the service system. That does not happen, which speaks to the need for some sort of independent and ongoing evaluation.
Ms. Shoush: I wanted to offer a positive example. Years ago, when Wayne Gretzky was with the Oilers, he brought a young man who had a mental disability to take a very prominent place in the equipment room, right on the bench with the other players. He kept him there all through his career with the Oilers. He stayed well beyond Wayne Gretzky's time there. Having this young man present as part of the team helped normalize this kind of condition and show that this is how you include people. You find ways to acknowledge their skills, give them something to do and let them be successful at it.
Senator Keon: I will ask a difficult question. I will not direct it at any one person, but I would like all of you to comment.
From previous testimony and from yours, it has become pretty clear that the current system for dealing with this phenomenal medical-social situation is not properly designed. We have heard from previous witnesses that we need a completely new operational frame of mind, a new paradigm, a new way of thinking to design a method of dealing with this. We have heard today from you that we have to move this out of the biomedical model into a biological, sociological, psychological model, which is fundamentally a holistic approach.
The one view that seems to be consistent is that if you can arrange early intervention, particularly as it relates to age, but also after the onset of the mental illness, you will be much more successful than later on, because the problem becomes compounded.
If you had the ability to design the safety net, the social system, the medical system to deal with this situation, how would you do that? Would you begin with something like a regional program? Do you think it could be handled through provincial programs, with secondary regionalization? Do you think it requires a national program? Do you think it requires national-provincial coordination? Who could design such a program?
Ms. Shoush: Thank you for that question, Senator Keon. Maybe I could offer as a potential approach something that is being done in Alberta. The government has identified a number of cross-ministry priorities that require action as a way of trying to break down silos among departments in addressing a single issue.
There is something called an "Aboriginal Policy Initiative" that binds the deputy ministers to certain actions. The Aboriginal Policy Initiative goals are published in the government's annual business plan. I have this year's version with me. Deputy ministers are all required to demonstrate how their department has acted in concert with other departments to address the issue and work toward targets that are published in the document.
If you could begin by identifying how you might deal with mental health issues that affect Aboriginal populations and develop a model there, you might go far toward addressing a model that would work for everyone. Aboriginal people are the greatest users by far of mental health services, and yet they have the greatest struggle in getting access to them.
You have to involve communities in designing what would work for them. I do not think that a one-size-fits-all model would work, but the principle of working to breakdown barriers across governments and across departments and involving communities is one part of the approach. It has to involve persons who are facing the particular disability or health issue. They need to be part of it.
Ms. Hall: I am aware that Canada stands alone among G8 countries of similar economic status in not having a national mental health policy, and I think that is a cause for shame.
The Chairman: That statement blew me away. I knew a few countries had one. That is a very interesting observation.
Ms. Hall: We could develop something. There are obviously political issues within the federal-provincial relationship and then within the provinces. There are the relationships between the regional health authorities, at least in my province, and the provincial government. Everyone at the federal level is concerned about impinging on the provincial level, and the provincial level is concerned about impinging on the regional level. Nevertheless, we have a system that is evolving without standards. Work could be done at the national level on broad-based standards.
It is clear in terms of professional practice that people are not trained. Again, my job is advocating for those with serious and persistent mental illness. I am talking about competencies, including workforce implications. Other countries have worked on that, and New Brunswick would be similar to British Columbia. There is no need for each province to reinvent its own. There are issues in relation to the information monitoring and sharing systems.
Things could be done at the broad national level. There are enabling strategies that could be taken on. At the end of day, there is tension in our province. Five regional systems are now being developed, which is not right. You would never see cardiovascular care or cancer care devolving. You would have a provincial standard and then deliver it in a decentralized way.
Your question is difficult to answer because many people think they are doing the best they can in a difficult situation. It is hard to introduce more rigour and family participation because you are stepping on people's vision of what is a good thing. The truth is that we have no sense of standards. Nova Scotia was the first province that I know of to issue a set of mental health standards. They are published on the Web site, and it is very brave of them and important for them to do so. I think that is the role the provincial government should be taking.
All three levels have a role. It is tricky, but we can do it.
The Chairman: We fully understand that there is no way we can do anything useful in this field without stepping on a lot of toes. We are oblivious to that fact. We will call it like it is. If people get mad at us, they get mad at us.
Mr. Arnett: Senator Keon asks whether we should involve the regional health authorities. This is an organizational management model and a long way from where we need to start.
A document could talk about determinants of health — in other words, those factors which contribute to health. I think that leads to a model. It is not just because I am an academic clinician that I believe that modelling is important in how you structure things, but because it affects the way you think and look at things. Management structures come later. Talking about whether it should be regional or provincial, or whether there should be federal regulations, is much further down the line.
You have to understand the causes of mental illness, and you have to have some sense of their breadth. There is not just one cause; it is not a defect in the hypothalamus or the frontal lobes. We know that, for example, drugs affect the brain in certain ways, and we know that psychotherapy affects the brain in similar ways; there are multiple ways to get to the same point.
However, the conceptual model you use is very important. If you conceptualize it as a disease entity that needs to be eradicated with surgery or medicine, you approach it from one perspective. If you look at what precipitates a schizophrenic event, it is often stress in people's lives. Their biology has not changed. Something has impinged upon them — some significant, major, stressful event — something in the environment, if you will, not in their bodies.
If we want to talk about preventing that, we have to look at those dynamic forces — where they live or work, whether there are family interactions and so on — in addition to biology. The model becomes important.
We have to look at the multiplicity of factors and begin to recognize that if people do not have a place to live, maybe that creates a certain amount of stress in their lives. Maybe they do not have enough money to buy milk or bread. Maybe they are disorganized; they cannot find their way home and that creates a certain amount of stress. Maybe they do not know how to use the bus system.
The way we have looked at it so far is to say they have aberrant biology. Something is wrong with their neurotransmitter systems. We have looked at them as if they were under a microscope and imaged things that we say are related to mental health problems — this is where the problem is, in the inferior frontal lobes. That led to treatments like prefrontal lobotomies that, in the literature, are coming back as suggested treatments for people with schizophrenia and other mental illnesses. I have to ask how far we have moved forward.
We need to start with the model and let the management and organizational structures weigh decisions. I work within a regional health authority. As Senator Keon knows, decision are made in regional health authorities not only on the basis of what is right, they are made on the basis of who has power and whom you do not want to influence negatively.
These are some of the issues and this is where we have to start. I understand that the group within the federal government that produced the determinants of health has been disbanded. Many of the things that challenge the existing models have been disbanded, put aside, put out to pasture. Why? I think it was because they were threats to the prevailing model and needed to be dealt with in the most efficient and intellectually acceptable way — you just get rid of them through a budget cut. That is a problem.
Senator Keon: Do you have any idea how you could convince the people around you to allow you to construct such a model and to work within it?
Mr. Arnett: I have at least succeeded in creating a psychology program within the Winnipeg Regional Health Authority. I have been sufficiently political to do that. My experience has been that you have to start and believe that most people want to do the right thing. That is my view.
The problem is that sometimes, to whom they listen is influenced by a whole variety of factors, and sometimes data bother people, bore them and so on. I think you need to persist. My sense is that success is 99 per cent persistence and 1 per cent brains. If you keep working at it, you will probably succeed in convincing some people at some time that something you have to say is good.
Ms. Scheffer: I would not even begin to go where people have been delving in terms of comprehensive systems, but here is my contribution: It takes will. It takes political will; it takes a champion.
I think back to the early 1980s, when Larry Grossman was the Minister of Health in Ontario. We never saw more change than when he was the Minister of Health. That was his issue. He took it on and he made change because he had the will. That is what I would offer to you.
Mr. Arnett: Also, go back and take a look at Marc Lalonde's report; that was pretty progressive material.
Senator Keon: Quite right.
Senator Morin: I would like to address the matter of violence in relation to stigma. I think it is a very specific issue in mental illness. Ms. Hall referred to discrimination in other types of illness, or even against gays and lesbians. However, gays and lesbians are not violent, so it is relatively easy not to discriminate against them.
You gave figures — between 15 and 27 per cent of encounters with the justice system involve people with mental disease; and psychotics, especially if they use drugs, are violent. Those of us who visited the Pinel institute in Montreal, which is a forensic psychiatric institute, felt that violence was everywhere. It permeates the whole place. Actually, they have a research centre there on violence. It is certainly an issue here.
People are afraid of violence, especially unpredictable violence — and some of it is unpredictable. It is not the same type of discrimination as for other illnesses — cancer, AIDS or other conditions. It is based on fear and we have to address that.
It is not easy because some of these patients are psychotic; it is unpredictable. I agree that most of the violence is directed to families; the parents of schizophrenic patients tell terrible stories of having their house burned down and things like that. It is terrible for the parents and for the brothers and sisters. That element should be addressed.
I do not think that it is enough to say, "Well, you know, it is minor and it is rare, it is only three per cent." Of course, it is only three per cent of all violence, but it is still there, and if you consider patients suffering from schizophrenia, it is more than three per cent. I would like to know how you react to that. This question is asked in a positive way, to help address the serious issues of stigma, fear and discrimination involving patients with mental illness.
Mr. Arnett: In response to that comment, senator, it is not only patients with mental illness who are seen to be violent. For example, many of the patients I deal with as a neuropsychologist have brain injuries; they have frontal lobe and other injuries that also contribute to violence because of disinhibition. For example, you see a debate from time to time about those with epilepsy, particularly temporal lobe epilepsy, in which there is a fear that these people will become uncontrollably violent. There are people with other disorders who could potentially become violent — and in some instances, more so than patients who are mentally ill.
There is no question that the stigma and the fear of violence on the part of the general public are greatest with respect to those who have mental health disorders. I think part of it is publicity. You do not need to see One Flew Over the Cuckoo's Nest too many times to develop a strong image of a person who is out of control all the time. In fact, that is an illusion, a myth.
There are more myths about violence in mental health conditions that permeate the general population that I think need to be addressed directly. My colleagues have suggested that working and spending time with patients who have mental health disorders will dispel a number of these myths. Media have a very powerful influence, and could be a powerful influence for good by pointing out the realities.
Ms. Hall: I would have studied harder if I had known these questions would be so intense.
Think about violence for a moment. I noticed in the paper yesterday the idea that mental illness could be a result of violence. We talked about the Canadian Forces and post-traumatic stress disorder and the mental illness that can be experienced in reaction to being in a violent situation. Mental illness can be a result of violence.
In the next month, I will convene a workshop on people with developmental disabilities, brain injury and mental health issues. We are naming it "People with Challenging Behaviours." I do not think the system is trained to respond appropriately. The people who are most difficult are the least likely to get help, which is not their fault. Until recently, if you had a mental health diagnosis and an addiction, you would not be treated in the mental health system or the addiction system. You were on the street and in difficulty. As in my example of emergency rooms, we do not prepare people. In the developmental disability community, workers are trained in non-violent crisis intervention, gentle teaching and how to respond to a disordered nervous system in the most appropriate way that will produce the safest community response and the most well-being for that person.
Yes, it is an issue, and we need to get behind it. It is very complex, not one-dimensional; that is, "mentally ill people cause violence." Mental illness is a result of violence and mentally ill people are more likely to do violence to themselves than others. It is also a matter of understanding probability and risk, because the problem, mental health care consumers or people with mental illness tell me, is we have to be able to predict violence. The people in the forensic field are busy at that. Chris Webster, a colleague, works on the actuarial issue of predicting violence.
The difficulty is that when a small percentage is always in the news, everyone else gets tarred with the same brush. It then becomes unsafe to talk about having a mental illness, because you are labelled as part of that group.
We need to look at a national strategy in a systematic way, as we are with the National Drug Strategy. However, we are not doing anything. We are not providing the essential training for frontline workers. If you are in a psychotic moment and I come at you too closely, I evoke that violent response, not knowing there is another way to be. I am trying to work with police officers so that when they are dealing with a psychotic person, they do not escalate the levels of force. You can do things that will not produce a violent response, if you know how. Most of our frontline people are not well trained to do that and I hope the committee will show some leadership and say we need training in this area.
Ms. Shoush: I too have a response to that. The question clearly shows a link between the Department of Health silo and the Department of Justice and Solicitor General areas of responsibility. I think the public needs an open and transparent process. We can demonstrate to the public that we are concerned about their safety and well-being when dealing with persons who have a mental illness and who have also committed an offence or a crime.
In some of our Aboriginal communities in Alberta, we have courts on the reserves, where in order to have access to the justice circle, people have to accept responsibility. They have to accept that while they may have been victims in the past, they cannot offer that up as an excuse for bad behaviour in the present. They have to acknowledge that they have committed an offence and then be part of the circle of solution, of getting to a resolution where somebody is held accountable, the community sees that accountability in the justice system and that it is working to make communities healthy. People may also, as part of their sentence, have to get treatment for mental health or addictions issues that might arise. You need to develop processes where the ministries that might have a role to play are involved in the solution.
After listening, I have one question. In some ways, it is a follow-up to Dr. Keon's question. We are all shocked to hear we are at the bottom of the barrel. If we are, can you perhaps give us direction as to those jurisdictions, those countries that are at the top of the barrel to which we might go for guidance? There is no need to constantly reinvent the wheel, but to which jurisdictions can we go that would give us a lead or some excellent advice on how to proceed? This committee will have to make recommendations, and if those were based on sound research and practical experience, it would be very helpful to us.
Ms. Scheffer: I will answer from my perspective and speak to the health promotion aspect. I will allow my colleagues to look at it more from the systematic or policy aspects.
They have done wonderful, evidence-based work in the U.K. and in Australia. In the U.K., the Royal College of Psychiatrists is in the seventh or eighth year of strategic public awareness, designed to encourage people to seek help. Through their work, they see increased numbers of people seeking help, and the earlier people get help, the less serious the nature and scope of the illness and the lower the burden on the health care system. It affects bottom lines all over the place.
I would suggest that the U.K. has done excellent work that is strategic and well resourced. Australia has done so as well.
It is public awareness and health promotion, not just patient care. It is not a bed, an MRI or a piece of equipment. You cannot touch it or see it; therefore, historically, it has not been well funded at all. That is where these two jurisdictions have done well.
Ms. Hall: I had an opportunity to review other nations' mental health policies. It was limited to countries of similar economic strata.
I have also had several conversations with Phil Upshall, who has spoken to this committee.
There is good rhetoric and policy in England, Scotland and Ireland. Data from the European Mental Health Policy Network, which is an EU organization of mental health policy leaders, would also affirm that England, Ireland, Scotland, Germany and Greece are identified as having done that. There is a Web site to which I can direct you.
Certainly, the work in New Zealand is remarkable in recognizing the need for Aboriginal mental health workers, for espousing Aboriginal values, for funding for that and for reporting the results to Parliament. I was in New Zealand this past summer and I was extremely impressed with their "just doing it."
Australia also has a national mental health policy framework and I was interested in their involvement in primary care and their work with GPs. Eighty per cent of seriously and persistently ill people are dealing with the fee-for-service medical system. However, if you talk to the consumers and families, they will say that they have nice words and big fat documents, but people are still hurting. For whatever reason, they have not had the sustained leadership and the resources that were promised to produce the results. It is possible to look around and pick good programs.
However, every Western nation is struggling. We emptied the institutions but we have not put the appropriate resources and safeguarding strategies into place. Safeguarding strategies is an important concept, because we are talking about vulnerable people and the need to ensure that the money taken out of institutions went into the communities. I will not talk about the United States, although they have good examples of clinical best practices in such things as Assertive Community Treatment, family education and peer support. It is possible to find the jewels, but making them work for people continues to be a challenge for everyone. That does not mean we should not try.
Ms. Shoush: I would say that we have some growing expertise here in Canada. I look to the Canadian Institutes of Health Research and the research that they are supporting through the Institute of Neurosciences, Mental Health and Addiction and the Institute of Aboriginal Peoples' Health. They will be supplying you with a report on this question. I agree with Ms. Hall's comments about New Zealand and Australia. They have done quite a lot of work on Aboriginal people's health.
It would be a good idea for the committee to take a look at a non-Western culture to see whether their approaches to mental health yield better results than ours. I do not know if some Muslim or Buddhist or Hindu countries have approaches that might work, but that would be an option.
Senator Roche: It is a fascinating suggestion. I do not know about non-Western countries, but I am intrigued.
I would suggest, to follow up, that research staff be asked to look into the mental health policies of the G8 countries so that we have a comparative base.
Mr. Arnett: My colleagues are more knowledgeable than I in this area. One program that I would suggest you look at is the Positive Parenting Program in Australia because it has successfully incorporated the media in providing information and it started at multiple levels. It starts at a very basic level: Some children cry more than others and it is not abnormal; some children are colicky but most get better before you lose all your senses; and then it moves toward higher levels of intervention with more serious problems.
The program in Australia is unique because it combines the media with effective and slick presentations. Australia keeps coming up, but I do not know much about other places.
Senator Léger: We are going across the world in these discussions. Ms. Shoush made a comment that I loved. She said that the ancient belief of the Aboriginals was that a mental disorder was a gift that brought a person closer to God. We all know that in the big families of 10, 12 or 18 there were always 1 or 2. Those children were protected into adulthood by the family and then by society. That is why I enjoyed Ms. Scheffer's comment about the Workman Theatre Project. That is a way of explaining to society.
We know that artists are often ahead of their time. We know that schoolchildren are sometimes "hyper." Can you clinically, medically identify a person who has the gift of being beyond others, and therefore cannot fit into the system? Is the person categorized under "prescription abuse," or whatever? Can you identify this? You mentioned one who became a great musician. We all know people who avoided prison because they fell onto the right track. Can you identify them?
Senator Morin: To provide our witnesses with a little background, ladies and gentlemen, Senator Léger is a well- known actor in French Canada.
Ms. Hall: In my early experience of working with people with developmental disabilities, the language of looking for "gifts" rather than "deficits" was an approach that the community living movement advocated. We are looking at how to organize systems and support that are beyond just services. It is a much more helpful, hopeful and creative system. It is also a more sustainable health care system.
We tend to look only at the deficits of people with mental health disabilities. From my experience, the answer is no. It is a matter of perspective, of what you are looking for and how you respond to someone — whether you see the glass as half empty or half full. Clinically, you tend to gravitate toward what is wrong and not what can help the person win.
I am learning quite a lot, and gratefully so, from the community living movement, which is emphasizing the need to look at gifts and not just deficits.
Mr. Arnett: If you look at the diagnostic schemes used, they direct us to look for deficits rather than for strengths. The diagnostic schemes have also expanded, and the distinguished company aside, most of us could probably be diagnosed with some disorder or other. The tendency to label in pejorative ways has become ever more powerful with the evolution of diagnostic schemes. I do not think it is a good thing. We tend to look for deficits rather than for strengths.
Ms. Scheffer: I would like to comment in two ways. First, I want to speak to the condition that does not become a gift without support. The difference between my husband with his middle-class bipolar disorder and the fellow sleeping on the heating grate is often simply the support that each received when they were acutely ill.
I will speak to my personal experience in this field, which has become richer since I met my husband. He has bipolar disorder and has been healthy for many years. However, he calls his disorder a "gift" because it has made him more human, more generous and a sensitive father.
Under the circumstances, it has sensitized our children to become the next generation of champions leading us to an understanding of mental illness. I would say that in our case, it was definitely a gift.
Ms. Shoush: Communities can have everyone identify what gift they will put in to support the community. The Gitksan in British Columbia, for example, assign every person a volunteer job. They will do something to nurture and enrich their community and protect their culture and traditions. They have an annual feast every year and report on what they did.
I am a lawyer. I might be expected to do something that would address some of their legal needs. Other people might do dancing or drumming. People will do something that will make them valuable and contributing members of the society. I think that your suggestion is excellent.
Senator Léger: We should have the courage to put that in a report.
I definitely want to go to New Zealand and Australia. We could start with the Aboriginals, since they have not yet lost what we have lost.
The Chairman: I know all of you came from out of town, and I thank you. We really appreciate it. I realize we prevailed upon your time. Thank you for being so candid in responding to all our questions. You have been very helpful. We may get back to you, particularly concerning Ms. Hall's comment about the Web site.
If you have any additional thoughts we ought to hear, send us an e-mail or give us a call. We would be delighted to hear from you.
The committee adjourned.