Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 6 - Evidence, February 16, 2005 - Afternoon sitting
TORONTO, Wednesday, February 16, 2005
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 1:05 p.m. to examine issues concerning mental health and mental illness.
Senator Michael Kirby (Chairman) in the chair.
[English]
The Chairman: We now have three witnesses from the media who have been kind enough to come and talk to us about an issue that has not only troubled us, but troubled other countries that have looked at the mental health issue. This is not being by any means critical of the journalistic profession; the portrayal that one often picks up in the media is the portrayal in most Canadians' minds.
What we are most interested in is to what extent the media can be part of the solution to the stigma problem.
As some of you may know, in Australia, for example, the schools of journalism worked with the Mental Health Council to develop, as part of journalism programs, a way to ensure that budding journalists were made aware of the appropriate ways to describe mental health patients and people suffering from mental illness. Their tracking data evidence shows that it has been a significant element in changing broad public attitudes. They also ran a substantial communications campaign, and over the 10 years they have been tracking it, there has been a significant improvement in the acceptance of mental illness as an illness and less of the usual stigma. It shows that over time, just as we have seen in this country on drunk-driving, anti-smoking and so on, you can change attitudes. Any advice you have on the role the media or journalism schools could play would be very helpful.
We have three people with us, and let me stress that they are appearing as individuals, not as representatives of a corporate view. That is an important point, because these are people who have experience in the media, are still employed in the media, but should not be seen as officially representing their employers here.
We have Louise Elliott, who is a journalist with CBC Radio; Scott Simmie, who is with the Toronto Star; and Rona Maynard, who is the former editor-in-chief of Chatelaine.
We will begin with a brief opening statement from each of you and then we will ask you some questions. I thank all three of you for taking the time to be with us today.
Ms. Rona Maynard, Former Editor-in-Chief, Chatelaîne: I am delighted to be here. I would like to begin with my personal experience of stigma as well as that of a journalist who assigned many articles on mental illness when I was editor of Chatelaine. I have experienced chronic low-grade depression and I lived with that until I was about 36 years old.
I grew up in the United States and the first year I was entitled to vote was 1972. George McGovern was running for the Democratic Party and his running mate was Senator Thomas Eagleton, who appeared to be a terrific candidate forvice-president. Suddenly the news broke: Eagleton had been hospitalized for a depression and had had shock therapy. A huge outcry broke out in the press, after which Eagleton was dumped from the ticket. I am sure some of you remember that.
To me, it was shocking, demoralizing, shameful and personally hurtful. I suspected that there was something the matter with me, some reason why I always felt so down, why I did not have any hope, and the day that McGovern, after saying he was 1,000 per cent behind Eagleton, dropped him, I felt I was receiving a very strong message that people like me were unreliable, unworthy and unfit for any kind of public role.
It was framed as a character issue. The American people did not get Thomas Eagleton, but they did get Richard Nixon.
Now, having gone through that and other experiences and having had conversations and e-mail correspondence with a great many ordinary Canadians as a result of things that I wrote, said and commissioned as editor of Chatelaine, I am still somewhat skeptical about the focus on stigma. I am not saying it does not exist, because it absolutely does. I have had ordinary people say to me, ``I just feel dreadful and it takes everything I have to get out of bed in the morning, but I am a grade 2 teacher and I think if the parents knew this, they would not want me teaching their kids.''
People feel it is not okay to talk about it, but the way to make it okay, I think, is not simply to ask ourselves how we can stop the stigmatism. What terms should we not be using? What kinds of stories and people should we not be portraying in the media? I think we should be asking how we can normalize it.
That was what I tried to do. In my job at Chatelaine, one of the last stories that I commissioned, and one of the ones I was most proud of, was about a married couple where the husband had been suffering from depression off and on for many years. It had been a real test of their marriage. The wife had had to deal with all kinds of difficult questions, such as ``How can I be there for this man when he cannot be there for me?'' and ``How do I talk to my kids about what is going on in our family's life?'' These are hidden dramas that are unfolding across the land, and the stories, by and large, are not getting told.
Now, people I have corresponded with have been telling me over and over again what it is they think they need. They want to know where they can go for help, and they want to believe, they want to see, that there are in fact services available. This is a particularly big problem, as you know, for young people and older people. They want to be able to talk to their family doctor. The family doctor is usually not very helpful, and many people do not have one, cannot find one. They do not want to be afraid that they will lose their job. They wish their family and friends would understand. It is a character issue, and people are being told by their own loved ones every day, ``Pull up your socks. It could be worse. Try harder.'' People are getting the idea that if they only tried harder, they would be able to be there for their families and the people at work.
They also see that nobody is rallying around to help when they are ill. We once did an article on how to help a friend with cancer, and it was written by a woman with breast cancer. She gave about 10 suggestions for how you could help your friend. They were small things, such as, ``Bring food, talk to my spouse, please ask me how I am; take my kids out.'' Well, I got this amazing letter from a man with a couple of young kids and a wife saying, ``Every suggestion that you have given about the cancer patient applies equally to me,'' and the stories are not being told.
Also, I think a big part of the answer is for us, for the media, to be simply speaking honestly about the impact on people's lives. We are already doing it with physical illness. Every year in October, the media unroll this spate of articles about breast cancer, every aspect of it, treatment, how it affects you, how to talk to your kids about it, how your friends can help. The cosmetics companies are sending people into hospital wards to do makeup for cancer patients.
Is any of this happening for people with mental illness? No, it is not, and when something is hidden away and not discussed, when people who are hospitalized for a psychiatric illness are not receiving flowers or get well cards, what is the message that people get? It does not exist, it is not normal, and it is also fearful because it is hidden away.
I am profoundly skeptical about the idea that we should be teaching stigma reduction regarding mental illness in journalism schools. I have little use as it is for what is being taught in journalism schools, and I think the last thing we need to do is bring in a lot of so-called experts to tell people what terms they can use when talking about psychiatric illness.
Also, I think there is a question of fairness. People with mental illness are not the only stigmatized group. Does this mean we will also have people coming in for all the other stigmatized groups?
Just to reiterate my main point, I think it is a focus on the positive. That is what I would like to see, and it is starting to happen, but not nearly fast enough.
Mr. Scott Simmie, Journalist, Toronto Star: I am a feature writer with the Toronto Star with an interest in mental health. I have written about it extensively and co-authored two books about it in a major newspaper series in 1998 that got a lot of attention. I will leave copies of the books for members of the committee that I hope will be of use, and no, I will not send you a bill.
This afternoon, I will try to offer a few headlines, with the intention of writing a more lengthy brief for submission in the near future, and the first headline — though I am sure it is not news to you - is that mental health, mental illness and addiction are, I believe, the most pressing, yet most neglected, public health issues in the country.
Headline number two — I will disagree with Rona — we desperately need, as the committee has heard, a sustained, national anti-stigma campaign. Perhaps it should be termed an inclusion campaign or an enlightenment campaign, but it should have the imprint and authority of Health Canada.
Headline number three: The media can and must do a better job of reporting on issues of mental illness, mental health and addiction. In failing to do so, I believe we are doing the communities we supposedly reflect a grave disservice.
Journalists are best at telling stories, so I will try to fill in some of those headlines with an anecdote or two.
When I first began researching mental health in 1998, I went to the largest psychiatric hospital in Toronto, and on the grounds of that hospital there was a sign. The sign was supposed to say ``Dogs must be kept on a leash.'' Someone had spray-painted out the word ``Dogs'' and had put in the word ``Nuts.'' ``Nuts must be kept on a leash.'' Every time I drove by that hospital for an interview, I checked to see if that sign was still there. Patients would have seen it, doctors would have seen it, and the public would have seen it. Eight months after I began my research, someone had finally spray-painted out the offending word.
Now, imagine a different scenario; picture a similar sign on the grounds of a synagogue. If the word ``Dogs'' had been replaced by ``Jews,'' people would have been outraged. The police would likely have been called, the act would have been described, accurately, as a hate crime, and rest assured, the sign would have been gone the very next day. Yet the sign at the hospital remained unaltered for all that time, and who knows how long it had been there before I first noticed it.
The analogy I would draw is that mental illness and addiction are similarly stigmatized on a national scale, and with the exception of this committee and some noted advocates, no one takes action.
I can state unequivocally that the many Canadians I have interviewed who are struggling with mental illness and addiction say that stigma and the associated discrimination are the foremost issues on their radar. It can be, as your Issues and Options report notes, as important a source of distress as the disorder itself. As one man with schizophrenia pointedly told me, ``We are outcasts. We are untouchables.''
What can be done about it? Many have said, and said for years, that a national anti-stigma program is needed. We have seen, in the past couple of decades, positive and measurable awareness campaigns on HIV and AIDS, so why can we not do the same with mental illness and addictions? I believe we can, but I would caution that AIDS may not be the best analogy. While certainly it was, and to a certain extent remains, a heavily stigmatized illness, it was new. Arguably, it did not have to overcome the centuries of negative connotations associated with mental illness and addictions.
Though Canada has some dedicated, high-profile mental health advocates, ranging from Michael Wilson to Pat Capponi, they cannot do it alone, nor can groups like the Canadian Psychiatric Research Foundation, which had a terrific series of television and radio ads targeting stigma, afford to sustain the kind of long-term campaign that is needed.
Health Canada, by comparison, is a known brand in this country. People realize that by mandate, the department is interested in the well-being of Canadians. Anyone who watches television certainly knows that Health Canada thinks, with good reason, we should not smoke. I believe there is an opportunity for Health Canada to use that established credibility to begin stressing the equal importance of mental health, not merely in a preventive fashion, though that, too, would be useful, but in an educational campaign that shows average Canadians — men, women, teens, seniors, and real people, not actors — telling their own stories.
I also believe if we intend to revamp our systems and change attitudes, that provincial education ministries can play a role by putting mental health and addiction higher on the agenda in high school. Not only is it a place where attitudes are forged at a crucial age, the teen years are also when many people endure their first bout of mental illness or first experience suicidal thoughts.
As the committee noted, this country loses some 3,700 people annually to suicide. If a plane carrying 300 Canadians were to go down every month, there would be a national outcry. Inquiries would be launched. Special investigative reports would dominate the media and this country would be moving heaven and earth to ensure that not one more aircraft went down. However, with suicide, perhaps the most stigmatized area in this field, and where mental illness and substance use often collide, we do not see such articles. We do not see the Prime Minister laying a wreath on behalf of the more than 300 Canadians who die from suicide each month. Instead, we avert our eyes, and the media, with rare exceptions, are complicit.
I have wondered over the years why the media do not do a better job of mental health coverage, why there is not more of it. It is a field crying out for regular, in-depth, compassionate reporting.
I will make an aside here. I had not planned to mention this, but since I am leaving copies of the book, I will. The man you are looking at today in a suit jacket was once in a straitjacket in Hong Kong. I had been working for the CBC and had a psychotic episode after reporting on the war in Chechnya.
That is what led me to my interest in mental health. That is what led me to research the topic through the Atkinson Fellowship in Public Policy, and ultimately, that is what led me to travel across the country and to the U.K., asking people about their experiences and looking at policy.
I will just conclude. There are a few other things I had hoped to mention, but there is a main point I would like to emphasize.
I appreciate, in this public phase, the committee's efforts to reach out, such as inviting written submissions or posting online questionnaires. When I looked through the appendix and saw the many experts that you have heard from in the first phase of these hearings, I was quite impressed, and I recognize many names because they were people that I had interviewed myself.
During my year of research, I read a lot of documents, I talked to a lot of professionals, but it was really when I headed out to the boarding houses in Toronto, in Saskatoon, New Brunswick and elsewhere across the land that I learned the most. Therefore, I would respectfully urge the committee to bear in mind that many of the people with the most to say on the topic are the very people you are least likely to reach — the Canadians who, through no fault of their own, feel abandoned by the system and by society at large.
There are sections of this city, and many others in Canada, filled with boarding homes, and in those boarding homes and group homes, you will find people who have little more in their lives than regular doses of medication. Many of them live with little meaning or purpose because Canadian society fails to recognize they have worth. Some struggle with poverty so grinding and housing so appalling, it would challenge the sanity of even the strongest among us. Yet these people, these forgotten Canadians, have skills and they have dreams.
Unfortunately, many of them will not be aware of the committee's call for submissions, nor are they likely to have anyone encouraging them to go down to the library and fill out an online questionnaire. I would respectfully propose, and almost beseech, that the committee pay a visit to one of these neighbourhoods and arrange an informal meeting with residents of a few of these boarding houses. I would be happy to offer contacts who could arrange this. In fact, I am sure that Pat Capponi, who I believe was here yesterday, could take you on a tour that just might change the very course of your final report. It is a gesture that would not only demonstrate your genuine interest in their views, but would send them a powerful signal that they count, that their voices as Canadians are worth hearing, and if we are truly serious about reforming mental health, that is a noble start.
Ms. Louise Elliott, Journalist, CBC Radio: I just want to say how honoured I am to be here today in such distinguished company. I will read my statement.
My experience reporting on mental illness began in northwestern Ontario where I edited a newspaper that circulated as far north as Fort Severn. I routinely visited fly-in Ojibway communities where the suicide rate is one of the highest in the world. I spent several weeks in Sandy Lake and other communities.
My later work for the Toronto Star and The Canadian Press took me back to communities like Pikangikum where copycat and contagion suicides are affecting children as young as 10 and hitting more and more girls in large numbers. There, suicide has become a way of coping.
Since leaving the North, I have reported on addiction issues and mental health issues on a regular basis. Some would say as a parliamentary reporter, I am well positioned to do so.
Two years ago, I completed with Sue Bailey an ambitious project for The Canadian Press that linked gambling and suicide. What I learned from these experiences is that suicide, addiction and mental illness cannot be separated from the general health and well-being of any community. Poverty is not always present with mental illness, but poverty is a stress that will increase the likelihood of mental illness to manifest itself. Moreover, the tendency of media to report only on ``disaster'' scenarios, for example, large swaths of Aboriginal youths taking their own lives, precludes a longer look. It does not mean that Aboriginal suicide should not be covered, nor does it mean that we should not be probing underlying causes such as residential school syndrome and its cycle of abuse. However, other deeper factors such as cultural change and the alienation of Aboriginal youth from both the traditional world and modern urban culture cannot be underestimated, and they do not lend themselves to easy media treatment.
In both Aboriginals and the wider population, the biggest sin the media commits is one of omission — and Scott has summed this up. Not unlike federal policy-makers, media tends to ignore mental health as a growing area of concern, and that, in my view, is the biggest challenge involving mental illness and the media today. Stories ranging from spectacular suicides to isolated and often egregious abuses in care make the news, but there are not enough stories about policy change and the need to treat mental illness as a physiological illness, nor is there sufficient coverage of scientific advancement in the treatment of the physiological underpinnings of disease. Schizophrenia, bipolar disorder, depression, all are seeing rapid advances in treatment due to genetic research. New drugs are emerging and the treatment picture is thought to be optimistic.
Thus, stigma takes at least two forms in the news media: The first is the inadvertent trivialization of the issue by intermittent coverage of worst-case scenarios — for example, mass suicide in native communities or dramatic incidents involving public figures; the second is neglect of the issue as a legitimate health problem with both physiological and social underpinnings. This neglect in the news media only furthers the inability for a society to normalize, and this is the word that Rona was using, normalize and address a growing health problem.
As a recent example of the media blind spot, I spoke with the current Minister of Health, Ujjal Dosanjh, last week, and he mentioned to me a speech he made in British Columbia recently about his plans on mental health, plans that include a national mental health surveillance strategy, and this would fall under the new public health department that Health Canada has created. The speech itself received no coverage at all, a clear indication of how interested the media is in general in this issue. So more needs to be done.
There are two thoughts I would like to leave you with today. One of the clarion calls I repeatedly hear from people in the field, whether I am reporting on native mental health or mental health generally is this: There is a need for a suicide strategy. That includes both an Aboriginal suicide strategy and a national suicide strategy. Canada is one of the few industrialized countries left in the world that does not have a national suicide strategy. Such a strategy could save countless lives.
Second, the more I probe these issues as a reporter, the more I realize that mental health issues touch us all. They cut across social strata and reach into every walk of life. They are not issues that exist in isolation from the overall health of Canadians and, as such, they touch most of us, not an underprivileged class alone.
Those with mental illness are often underprivileged as a result of inadequate recognition and treatment, but that does not mean there are not ways of bringing the issue into the public debate in a way that creates less stigma, less of an ``us'' and ``them'' approach. Those ways will require greater creativity, and I think that has already been dealt with here, by journalists and by policy-makers.
The Chairman: Thank you to all three of you for coming. I am going to begin with a couple of questions and then turn it over to Senator Keon.
First, Scott, I am intrigued by your idea of us visiting what you call a boarding house. We will look seriously into that, particularly because I know where they are in Ottawa — my sister happens to manage one. I think that would be a good thing for us to do.
Let me get back to the issue that has troubled me, and I agree and I think it was Scott who made the comment that the analogy to AIDS is not really a good analogy because it is a new disease. How do you ultimately change underlying attitudes? If I ask myself to think of an example where attitudes have changed dramatically over the last 10 or 15 years, the most obvious example to me is the issue of homosexuality. In some sense, it has become okay to come out of the closet, and I use the phrase ``come out of the closet'' because, in essence, the problem with mental illness is that it is still in the closet.
So my question to all three of you would be this: On the basis of your experience as journalists — and recognizing, by the way, that coming out of the closet and changing public attitudes is a long-term process; it is not a one- or two- year exercise, but rather a 10- to 15-year exercise — what can government do, what can journalists do? If we compare where we are now with respect to someone being not upset at being identified as gay or lesbian to where they would have been, say, 20 years ago, how do we get from here to there?
Mr. Simmie: We have seen a decrease in homophobia partly because of its link with AIDS awareness campaigns. It put a human face on many people who in the past were not out publicly, so to speak. We saw long, sympathetic, compassionate profiles of people, and we saw many celebrities taking up the cause, endorsing it. We saw the red ribbons on the red carpet in Hollywood. In my view, then, the reduction in homophobia has as much as to do with the powerfulness of the AIDS lobby as with anything else — the power of personal stories powerfully told.
The Chairman: By real people.
Mr. Simmie: By real people.
The Chairman: Not actors, as you said.
Mr. Simmie: It does seem to have a very positive impact.
During my career as a reporter — I had worked in London, in China, covered Tiananmen Square, Russia — the most response I have received to anything that I have ever written, and I have never received the same response since, was the ``Out of Mind'' series, which included my own personal disclosure of having had a psychotic break.
I heard from many, many people that they would never again view people with a mental illness in the same light. I heard from others that it empowered them or encouraged them to step forward and discuss it more openly with families and friends. I certainly felt within the newsroom that it was suddenly an okay topic to discuss.
So, we can perhaps draw a lesson, though I do caution they are not entirely the same, but I think we can draw a lesson from the success of the AIDS campaigns in that sense.
Ms. Maynard: I would generally agree with what Scott has said — that is, that as long as people cannot put faces to the issue of mental illness they are going to be able to tell themselves that they do not know any of those people, or that they can cross the street to avoid going anywhere near them. It is a fact that there are many walking wounded out there. The person in the next office who appears to be doing okay might be sitting there with the door closed just staring at the screen, not able to do anything. Hence, we do need to be telling stories about what it really looks like, what really happens, how you will know if it is happening to you.
I also want to come back to one of the ideas in the materials we were sent — a speaker's bureau.
The Chairman: The U.K., I believe.
Ms. Maynard: Yes. That is interesting because the more stories and voices we can put in front of people, the more ground we are going to break. This also goes back to something that Scott said, that any kind of awareness campaign should feature real folks.
One specific area where I see a big need for this is postpartum depression. Women with postpartum depression are a very hard group to reach. The volunteers in that field are all saying that. Hence, women with postpartum depression need to see a woman who is a good mom standing up and saying, ``I had it and it is not the end of the world.''
Ms. Elliott: Just to follow up on your question about what governments can do, there is a lot more the federal government can do than it is doing, and that comes from my own experience of watching so much federal money being rolled out for health initiatives all over the place — but not for mental health.
The Chairman: Right. It is virtually zero. For all intents and purposes, it is zero.
Ms. Elliott: It is inconceivable that that is still happening at this point, given the research on productivity levels, as one example. Even if you do not want to think about the social costs, the effect on society from a productivity level is massive — and in Nordic countries, it is particularly high. We are considered a northern hemisphere country.
There has to be a commitment federally, which will signal the provinces that this is something that they have to take seriously in their handling of their health dollars. We need a strategy, a mental health strategy, and as I was saying earlier, a suicide strategy that would involve crisis management, prevention and treatment. Those things have to be in place in order for this whole issue to be properly dealt with.
Currently, the same-sex marriage bill is being debated in the House of Commons. That is how far this country has come. Regardless of which way the vote goes, that is how far the debate has come on homosexuality. Nevertheless, not enough dollars are being directed at mental health. That does not seem in proportion, really, in terms of advancement.
The Chairman: Absolutely. Just one question before turning to Senator Keon. I am interested in this — since you people are from a journalistic standpoint in terms of what attracts attention. If you are going to use real stories, and we agree on that, do the stories, in order to get attention, do they stories have to include what I would call big names, and I am thinking of a Michael Wilson, for example. Should the stories — and I do not mean this pejoratively — be about ordinary people, as in a mother who has had postpartum depression and then is fine? Will your profession bother to cover anybody unless they are a big name?
Ms. Elliott: I think so. I think it depends on the forum in which it is being covered. It may not be covered in a hard news format, but there are many magazine formats and feature formats in which that kind of a story does get covered, and can be better covered.
The Chairman: Right, and so you are suggesting a combination, I assume, of both print material and electronic material format?
Ms. Elliott: Yes.
Senator Keon: Thank you, Mr. Chairman, and thank you all of you for taking the time out to come here and be helpful to our committee, and to you, Scott, for being generous enough of self to tell your story.
I have spent a tremendous time from my past medical life on committees and studies and in my own shop attempting to implement electronic records, and the barrier, of course, is called privacy, but the real barrier is mental illness. People are terrified of having that come up on the electronic record; and particularly, if mental illness is coupled with a criminal record, they are truly terrified.
Now, in the journalistic world, you people have the equivalent of the electronic record. When you do your search on somebody of any note, you pretty well can find where they have been and what they have done — and Rona, you gave an example of a high-ranking politician who, for one reason or other, just sort of got cast aside because of mental illness.
So in your effort to help, and I agree with what all three of you have said, I think it is wonderful if you can do positive stories, but I think your stories are going to have to come from winners pretty much, and I am not sure that that is much of a sample of the population.
So I am just wondering how you think you can overcome this tremendous fear that people with the diagnosis of mental illness that have not been able to cope with it like you have, Scott, how you can overcome this fear of being in contact with you, let alone doing a story on it. I would appreciate all three of you talking about that.
Ms. Maynard: Senator Keon, are you talking about getting them to co-operate with the story? Is that where you are coming from on this?
Senator Keon: I am talking about getting them to co-operate with you in your efforts because your profession is so powerful.
Ms. Maynard: I think there are ways. It takes a very sophisticated and compassionate reporter to do it. The reporter has to agree not only to change the name, but also any identifying details, because people do have good reason for not wanting to go public with a story like this. There have been cases in my life as a journalist where I have advised people not to go with their real name, even though in a moment of blind openness they thought they should.
I also think that it would be extremely helpful in a case like this to get the people around that person to be part of the story and to share their stories. One story I would very much like to read in either a newspaper or a magazine would be a story about a suicide that would not be just about the person, but about all the other people who remember and miss that person and their perspective.
Senator Keon: Do you think, Rona, that you can somewhere along the road gain the confidence of the mentally ill population to the point that they will see you as an advocate?
Ms. Maynard: I would like to hear what Scott has to say on that, because he has spent much more time in the trenches with this population than I have. However, in my experience if you show people that you are willing to listen to them, that you are interested in their story, that their story has meaning — it is a profound human need to believe that my story, which may be a very tough and painful story, was not in vain, and that it has meaning, and that maybe it is going to change thinking out there, maybe it is going to change or save a life.
Mr. Simmie: One of the challenges is not so much encouraging people to openly tell their stories; rather, it is encouraging reporters to write about them. Part of the problem with the whole mental health field is that it is very complicated. Mental illness is a very complicated topic. Addictions are very complicated. Most reporters by their nature in newsrooms in Canada are generalists. They are trained to grasp the basics of something fairly quickly and spit out something that is credible for the next day's news or that evening's news, and I think the complexity, the sheer complexity of mental illness puts some reporters off.
As you have no doubt discovered in your first round of hearings, it is also a very political field. There are many groups with different agendas in this field. It can be become quite complex for a reporter who finally thinks he understands how this field is working and who phones another interview subject that completely turns the reporter's world upside down. The reporter says, ``I do not understand this anymore.'' It took me, honestly, the better part of that year on the Atkinson Fellowship before I felt that I could confidently write on a wide breadth on this topic.
One of the potential solutions, I was thinking about this last night, in Atlanta, the Centers for Disease Control offers a boot camp on infectious diseases. It is week-long, and it is very intensive, and you meet people who are experts from all angles of the field. I was fortunate enough to attend one of these boot camps a year ago and I walked away with more PowerPoint presentations than I could bear, but with a lot more knowledge than I arrived on the Monday.
If Health Canada, perhaps in concert with a mental health institution, were to offer a boot camp that is seen as somehow a sought-after fellowship for journalists who would get a week, working on location with the top experts in the field, that that might be one way of encouraging people to report more on this topic.
I have to say that I looked over at the media area today and was surprised and yet not surprised to see that there are not people here, or that I am aware of, covering this event. This is a hugely important issue.
Part of the challenge, perhaps the greatest challenge, your committee will face is not in getting people to tell their stories but in getting the media to report on the work of your work, and when the recommendations ultimately come out, to keep those recommendations in the paper, to not just have a one-day splash with five bullets from the executive summary and then, sadly, the report is forgotten. I know it is very much your wish that that does not occur and it is very much my wish as well that that does not occur, but I believe reporters must become more interested for any wide- scale implementation to take place.
Ms. Maynard: I would just like to point out that I think a boot camp like the one you mentioned, Scott, is in the formative stages here. I do not want to say anything inaccurate, but I know that people at the Centre for Addiction and Mental Health have talked about it and I think they are working on it.
Ms. Elliott: I would just add from my own experience, certainly in the North, there is an additional barrier there, several barriers, in fact, to reporting on aboriginal culture, as you can imagine, getting people to tell their stories to a non-native reporter — and, in particular, very private issues around mental illness, suicide, that kind of thing. In a community that is closed like Pikangikum, it is an incredible challenge. Yet, it is not an insurmountable challenge when approached in the right way, and the right way I guess would simply be throwing off all assumptions, especially assumptions of what is considered normal behaviour in any given society. That, to me, is probably one of the big challenges for reporting on mental illness — that is, the preconceived idea of normal often prevents reporters from wanting to do this kind of work, from venturing into areas where they might come into contact with someone who is mentally ill. In fact, these are people who are part of our society, and my experience has been the same, that people, by and large, are eager to tell their stories, that, for the most part, they are like any other segment of society.
There are people who want to tell their stories and those who do not. There are usually two types of people in reporting, the type that move towards the microphone and the type that move away. Hence, it is a question of finding the type that like to talk, which in itself is a challenge, but not an insurmountable, as I say.
My bigger challenge actually has been to convince editors and news organizations that this is a valuable subject for reporting on. There is a reason why I have been a parliamentary reporter now for the last several years, and exclusively designated a parliamentary reporter. It is partly because I am interested in it, but also it is partly because there is no mental illness reporter. There is no social issues reporter anymore. There once was a day when these types of reporters existed in larger numbers. So, there is a narrowing of these types of reporters in journalistic organizations as well that I think is playing a role here.
Senator Cochrane: You three people are here today as media people. Now, to me, the media has a great spotlight on when it comes to having people read what you say. You could have one of the greatest impacts on how people view this, whether or not it is going to be positive or negative. I think it is the media that focuses on issues that make the general public really think about it.
Now, can you three, in your different focuses, do this for mental illness? I am sure that I know you have higher levels that will be looking over your shoulder and probably saying this is not important, but can you in all sincerity break that barrier and do what is necessary to put this on the front burner?
Mr. Simmie: I would suggest that all of us in our own ways have tried to do that over the years but that we need to reach some sort of critical mass where we have more reporters who find this field interesting and worthy. Aside from the sheer complexity of the topic, I think quite frankly part of the problem is just the stigma itself. Reporters are not immune to stigma. If some reporters have a negative perception of what mental illness and addictions are, they may just think I do not want to go near there.
I am not sure if the committee has been doing this as part of your hearings, or if it might consider it, but sitting down with members of editorial boards of newspapers and stressing to them the importance of this work may have some impact.
Ms. Maynard: I had a great luxury. I decided what was important to write about in Chatelaine. Because of my own experience, my family's experience, the experience of a great many people I knew, including two people from my kindergarten class who both had psychotic breaks, I was just able to say we are going to do this. A lot of people are affected. When the response came in, I was able to say, ``Look, the reading public really does care about this.'' Every time we talk about these issues, we get letters. I think it is a lot harder for people in a busy news room — and this has been mentioned — you have both mentioned that there are not specialist reporters, that they have to do a lot of other things besides think about how they might, not simply raise the profile of this issue, but bring it to life. It is a big challenge to make people care. You do not make people care just by putting numbers and statistics in front of them. That is only part of it.
Senator Cochrane: Was this issue just a one-time thing?
Ms. Maynard: No. We did it many times. I talked about it myself in my editor's column, and every time I said that I had suffered from depression, I had people writing to say, oh, thank you for acknowledging this. I was ready to stop talking about it, but it was clear there was still a need, and we told a lot of other people's stories, too.
I commissioned a writer with bipolar disorder, Sandy Naiman who is a reporter at the Toronto Sun, to do a piece for us about her life and about how she was able to hold down a job, be a productive member of society, have friends, get married. It went on all the time and I think it will continue. I do not know, but I think it will continue after me.
Senator Cochrane: You both talked about focusing on the positive, and then, Scott, you talked about bringing it into the high schools. I do not know if you are aware, but there is a program right across the country — not a program federally funded or funded in such a way that it is going to continue — called ``Roots of Empathy.'' This program focuses on raising levels of empathy resulting in more respectful and caring relationships and reduced levels of bullying and aggression.
The heart of the program is a neighbourhood infant and a parent who visit the classroom once a month for the full school year. There is a certified instructor present also. The mother and the infant come into the classroom, and the students observe the infant. They observe how the infant cannot do anything. The feelings of the children in the classroom toward this child are talked about. The baby helps bring out their feelings. Some of the children may not have spoken a word, but this baby brings these feelings out so that when these children finish this program they can identify their feelings about other things — for example, ``Miss, I am sad. Miss, I am hungry.'' Generally, people with depression keep these feelings inside all the way through the school system and into adulthood. Were you aware of this program?
Mr. Simmie: No, I was not.
Senator Cochrane: It is country-wide. The founder is Mary Gordon.
Ms. Maynard: I am familiar with Mary Gordon. She is an amazing woman. There is a need for a lot more programs. Scott talked about adolescence, which is such a critical time. Everything that is going on now is very piecemeal.
For example, I know of a woman in Winnipeg who is going into high schools. Her son committed suicide and she is doing public education with teenagers. That is great work, but why cannot kids also be learning when they learn about other kinds of illness? They are learning about cancer — why cannot they learn about these illnesses? Why cannot they be learning what addiction is and that it is not a character flaw, that a brother who is abusing drugs or a parent who drinks is not a bad person?
[Translation]
Senator Pépin: for a while now, the discussion has been about the importance of the media in stigmatizing those who suffer from mental illnesses, and how they reflect all the stereotypical predispositions and myths. The impression given is that those who are mentally ill are more violent. They are described as such, and it is often reported that a person was arrested, but that the person was mentally ill and committed an act of violence.
We are all aware of the study by Health Canada that reports very few cases of mentally ill people who are arrested because of acts of violence. Where violence has occurred, it is usually because they have used substances or drugs or because they have not been receiving treatment.
Based on your own experience, do you know of any colleagues who are aware of how they depict — falsely depict — people who are mentally ill, in their news reporting?
Journalists from Chatelaine write highly structured andwell-researched articles. But when they want to make a splash, they give a completely false picture of what mentally ill people are like in their interpretation of the news.
Have you ever heard of a radio or television station establishing guidelines on the use of terms that discriminate against the mentally ill? That would be worth knowing about.
Have there ever been complaints about the misrepresentation of people who are mentally ill in print or electronic media? Do you think journalists should be involved in a national strategy against stigmatization? What role do you feel they could play? That, I think, would be important.
I agree with what Mr. Simmie said earlier: We should meet the editor-in-chief of a newspaper like the Toronto Star. What could we do to get journalists involved to make them aware of the impact they have, or to get them the change their attitude?
I know that selling newspapers is important, and that the news comes first, but perhaps the time has come for us to take the time to get it right.
[English]
Ms. Elliott: I would like to address the beginning of that, because the issue of violence in relation to mental illness is something that has been a stereotype that has been perpetrated, and I think it has been perpetrated largely in the mass media. I have done some stories not necessarily by the news media but by entertainment media.
A few years ago, there was a Jim Carrey movie called Me, Myself and Irene. I did some stories on this, because the 20th Century Fox was advertising this film, which played on the idea of schizophrenia and split personality disorder or multiple personality disorder, which is something completely different, and it created this character who was violent. In the advertisements for the movie, there was a slogan that read, ``From gentle to mental.'' ``Schizo'' was another slogan. There was an outcry in Canada, and 20th Century Fox in the end was forced to change the advertisements across North America, if I am not mistaken. That is a good example of how that stereotype — it was just a silly comedy with Jim Carrey — was one of a violent schizophrenic and a misnomer in terms of what actually was wrong with him, which was multiple personality disorder.
In terms of violence and mental illness, there is an issue of violent crime that can often be perpetrated by somebody who is mentally ill. There is a case today in Ottawa of an individual who committed murder, then committed suicide. That case is receiving wide coverage. The daily news media often seem to magnify the image of the violent person as though other forms of mental illness are not, they are just not as visible, and it is only when something dramatic like that happens that it gets attention. It is truly an unfortunate aspect of the daily new media that does need attention and it is thought about by journalists. It is not something that journalists do not think about, but in community papers and in community coverage, there is this sort of compulsory drive to cover whatever happens in a community. Whether it is covered sensitively depends on the organization that is doing the coverage.
I would say the onus is on the organization to do adequate follow-up, to actually follow those stories with stories about mental illness in the community from a much broader perspective, so that the story is not just about crime or isolated incidents that appear to come from nowhere when, in fact, they are part of a much broader fabric. That would be my answer to the beginning part.
Mr. Simmie: I would agree that the media quite often does link violence or dangerousness with mental illness, and it always seems to be kind of a knee-jerk reaction before we even know whether the diagnosis or the history of mental health problems was directly linked or not to the violent act.
Some of the best research out there will tell you that 96 per cent of the crimes committed are committed by people who do not, in fact, have mental disorders but are perfectly sane individuals.
There was some very interesting work that was initially quite hopeful that was done in Calgary where the World Psychiatric Association paired with the Calgary Herald and other local media, and over a period of time they worked with the reporters to get more accurate, more human stories about people living with schizophrenia in particular. It focused only on the one disorder. They measured public perceptions of schizophrenia, whether it meant the person was likely to be dangerous or unpredictable, et cetera. They measured a number of things, and they measured those before this campaign began, which was about a year long — and I believe Dr. Julio Arboleda-Florez may have presented to your committee. He was involved with this program. They measured attitudes again, and found that they had indeed changed, that all it took was one incident, which was a shooting that occurred on Capitol Hill in Washington by a man who had a diagnosis of schizophrenia and where, in fact, it was quite likely that that diagnosis played a role. This was on the front page of the newspapers and they found that when they measured public perceptions again, that all the good work, all the ground they had made was gone.
With your permission, I would just like to read one little example that I brought along that struck me. I was really quite offended and angered by it a few years back in Ottawa. What had happened was that a woman was pushed on the subway in Toronto and she died. The man who pushed her had a diagnosis of schizophrenia. He also had a crack addiction, and he was also a very, very angry young man. There was testimony at his trial where he was convicted criminally, not found not criminally responsible due to mental disorder. There was clear testimony at his trial from forensic psychiatrists, from the individual himself, and from others that this man was not psychotic at the time. He was not in a delusional state, that essentially the diagnosis of schizophrenia played no role in his actions, and yet a columnist for the National Post who had throughout her column described this person as a schizophrenic, then wrote the following. The man's name was Herbert Chong, by the way: ``As for Chong, he sat in the prisoner's box, but hardly was he here. His dark hair was matted and dull and stuck in clumps from his head. His forearms are oddly foreshortened. Sometimes he yawned. Sometimes he picked earnestly at his fingers as apes scour their mates' bodies for nits. Sometimes he rocked gently. Sometimes he stared at the floor and sometimes he looked the way a big fish does in a bowl when it bangs against the glass, a little taken aback but neither alarmed nor offended.''
Now, those words have to make you wonder, would an accused, who did not have a psychiatric history, have been portrayed in the same light?
Just finally on that same story from the Capitol Hill shooting in Washington, the Toronto Sun had a big headline, ``No hiding from nutters.'' You can imagine the uproar had a different N-word, referring to African-Canadians, been used, what the public outcry would have been, but yet there was nothing that I am aware of.
I think all of us at this table are very aware of the tendency to link this. I think it is part of human nature. It is part of the kind of dangerous, axe-wielding, psycho movies that have been around for years and years, that it is part of human nature to suddenly and inextricably link these events when they occur with the diagnosis — but, no, the media must do a better job with this.
The Chairman: I must tell you, just so you know, it is not only the media. Yesterday, someone read us a press release from the Government of Ontario written in the last year or two — I have to paraphrase because I do not have it with me — announcing, as I recall, extra funding for an assertive community treatment program. The very last sentence of the press release said, in effect, ``This will be much better for patients and make communities much safer.'' The bias and the prejudice is everywhere. That was the Department of Health, by the way. Give me a break, right?
Mr. Simmie: Sorry, Rona, I just want to add one thing about the subway pushing event. There was one other sort of near pushing, where a woman had been edged forward, and this woman was the wife of a columnist in a national newspaper. The columnist then proceeded to write a series of columns about the need for community treatment orders in Ontario that would force people to take their medication. What was interesting — because this had been a very hotly debated issue within the mental health field, and it was one that the Ontario Ministry of Health was struggling with vis- à-vis where it should go on this contentious issue. I had some contacts inside the ministry that I spoke with following these columns, which was when the province decided it would indeed proceed with community treatment orders. The individual told me that the province had been sitting on the fence, but when this series of columns came along it pushed them over to make the decision. So, even one person can have an inordinate amount of influence. So, we try to take the responsibility seriously.
Senator Trenholme Counsell: We are being advised that we should have a national strategy, et cetera, but deep down inside of me I am wondering whether the really successful campaigns, be it AIDS or breast cancer or autism or family violence — we can go down quite a long list — it seems to me that the successful ones and the ones that stay out there those been grassroots campaigns.
government can do many things with organizations and with departments of education, but in terms of really sustaining and raising the interest level, would an organization like the Canadian Mental Health Association, and I know that they are probably doing everything that they can do, do it better than we can in government?
Ms. Maynard: Government has a critical role to play, starting with funding the services. We have already heard how pitiful it is, and as long as the services are underfunded, people can certainly draw the message that it is not important. Some leadership and awareness building — government can be a partner there.
However, let me get back to the breast cancer example. It was grassroots in the beginning, but the business community has now gotten involved in that one in a big way — banks, cosmetic companies. It is enormous. People are now seeing this as a cause that they want to get behind. I remember when it was considered revolutionary that Betty Ford was talking about a mastectomy.
The Chairman: As well, in terms of changing attitudes, the government role on drunk driving, which has radically changed attitudes has entirely — yes, MADD and others have had the odd advertisement — but that was funded exclusively by government.
Senator Trenholme Counsell: Of course, that is tied in with legislation, with police legislation, with fines. There is a little more structure there. However, there is no question that, right from the Prime Minister and the federal Department of Health down to provincial and local hospitals, we have to bring mental health to the forefront. I know the breast cancer movement has had all this funding from CIBC — that is the one that comes to my mind, but I am sure there is all kinds of others.
In terms of parenting and child development, Dr. Douglas Willms, one of Canada's leading researchers, demonstrated that the biggest single factor in vulnerability with children was the depression of the mother. I have not seen that mentioned. We are talking about child care and development. It seems to me it is so hard to capture that grassroots attention. I think journalists have an incredible role to play in this, but does it have to be individual journalists? Your CBC or your magazine or your newspaper, does an individual journalist have to say ``I am going to push this''?
Ms. Elliott: It has been my experience that I have had to push this issue. It is not that, for example, The Canadian Press or the CBC has not done reporting on mental illness before my arrival or will do after I leave. There are other reporters who have done the work, but I have found that there is nothing comprehensive, that everything I have done has been on the side, in addition to my other duties. It has been a labour of love for me. The issues that I was nurtured on as a young journalist in the North had such a deep impact upon me that I felt it was something I would always want to report on, and in my subsequent years as a journalist, I have had personal experiences.
The daughter of a colleague of mine killed herself just a couple of years ago, and that had a huge impact on our news room. There are all kinds of reasons why people get involved in these issues, but it really boils down to a personal commitment that cuts across a job description. It must be the same in government right now — there must be people within Health Canada who want to see this issue have more of a profile than it does. I would say that that has to happen, in addition to the grassroots work that is being done. It has to come together. It cannot be one or the other. There has to be an official commitment, just as there has to be official recognition for other problems, other illnesses and other social issues.
Senator Trenholme Counsell: Do you think we could ignite the passions of Canadians better on the ground to push government — when I think of resolutions coming up at our national convention, there is nothing about mental health care. Can Canadians do it themselves? Is there a way that the citizenship of this country can do a better job in terms of passion?
Ms. Maynard: The groups on the ground are often very small, and the ones I have been dealing with do not have any money. I have been working as an advisor to a small organization that is working to raise the profile of postpartum depression, among other things. The group is operating on a shoestring; they have one staff member. Let me give you one single example. They wanted to do an awareness piece for every paediatrician in Ontario, because the paediatrician is the key contact for the mom. If you want to reach these moms, who are very embarrassed, the paediatrician is the best place to start. There is no central registry that you can go to for all the paediatricians. You have to do the work yourself, and it the small organization I referred to a very long time to do it because they really did not have any resources. It is not that the passion was not there.
Senator Cordy: Thank you very much to the three of you. You have been extremely open with us this afternoon.
I would like to go back to the issue of the public tying the mentally ill with police situations, with breaking the law. In a police standoff, such as we had not that long ago in Nova Scotia, you get the TV cameras, which visually has a major impact, the print media and so on, and the tie-in automatically is that mentally ill means they are in trouble with the law, means potential for violence because the TV has pictures of armed police officers and so on. When these stories become the lead news story in the evening — it reminds me of my teaching days: You have to tell a child a thousand times how good they are, but if one person says they are not good, it sort of diminishes the whole thing.
Is there anything further you wanted to add to what you said earlier?
Mr. Simmie: I wish I knew the answer. When there is a dramatic standoff in a neighbourhood and the television cameras are there, unfortunately, it is going to get on the evening news. The challenge for editors and for journalists is to try to add some context. Let people know that the majority of people with mental health issues do not pose a threat or are not dangerous. Still I am not sure how much good that does when there is a picture of someone being taken away in handcuffs. It is something that has contributed to and fed stigma for many, many years, and I think it will continue. I am not sure how we will get around it, other than more responsible reporting or more proactive reporting at other times.
Ms. Maynard: I think there is an opportunity with some of these stories for service-oriented sidebars as well as contextual information.
For example, there was a widely reported case in Toronto a couple of months ago involving a seemingly happy young mother who killed herself and one of her little kids. The case got a lot of play. With a story like that, there is an opportunity to do sidebars that point out two things: First of all, this is extremely common; it is underdiagnosed. If somebody had got to this woman earlier, there might have been a very different outcome. Most of them are not going to be violent to anybody. This could be your sister. This could be you and here is where you can call if you notice one of these signs. I think that would be a huge help. I am chagrined to say that I do not remember how much of this information the papers actually were providing.
Senator Cordy: I may not be recalling the same story, but there were interviews with neighbours who were saying the woman was a fine neighbour and that they did not know anything was wrong. So, maybe the media can do the kinds of things you suggested. The person is somebody's daughter or son. They are sisters and brothers, those kinds of things. Highlighting the need for more services might be a way of doing the sidebar.
Mr. Simmie: One of the things, and you will have to forgive me if I mentioned it in my opening remarks, we found is that any time that you write an explanatory story that does include contact numbers and information for access points to the system, people will consistently tell you from those agencies that their phones ring off the hook. I think it is worth bearing in mind as reporters to try to include that kind of tangible, useful information as well.
Senator Cordy: Louise, in your written material, you talked about suicide addiction. I was not quite sure what you mean by suicide addiction.
Ms. Elliott: That is because I forgot to put a comma between ``suicide'' and ``addiction.''
Senator Cordy: I thought maybe that was it.
Ms. Elliott: Suicide and addiction.
Senator Cordy: You talked about crisis management. We had police officers before us this morning as witnesses, and they talked about their frustrations in taking a person who has attempted suicide to outpatients and having to wait there for up to 10 hours to get help. So, in addition to the person not getting help, the idea again goes back to what we spoke about earlier, where the person needs a police escort and for 10 hours the police escort is waiting with them.
What do you mean by crisis management?
Ms. Elliott: In a strategy, I mean. I would defer to Scott on this, but my understanding of it from speaking with people who would like to see these strategies in place is that community crisis management involves all levels of crisis management. So, somebody needs attention, yes, you have a police escort, but then you would also have an adequate service at the receiving end, say, at a hospital where that person would receive attention on an as-needs basis. In other words, if it is a crisis that person is not waiting. There would then be follow-up for the family members. There would be follow-up for the community. There would be prevention. There would be a coordinated response to an incident rather than, as currently exists in the North, no response in a lot of communities, so you see rashes of suicides taking place. In very rare cases where I was, you see violent incidents, although that is very rare in Ojibwa communities, but there have been a few.
Senator Cook: Thank you very much for being here. Yours is an honourable profession; we are either completely captivated with it or addicted to it. The first thing we do in the morning is run for the paper or turn on the news; at the end of the day, we turn on the evening news. To bring a balance to that is the challenge of your profession.
The power of that word is what is hanging inside me more and more as I hear this, and the word is ``stigma.'' We hear the power of that word over and over and over, and for me it is taking on a new significance, because in my mind it is becoming a human rights issue. Unless we get rid of that word, Mr. Chair, and use something else or apply it or do something, I do not think we are going to move forward.
For me, the challenge, and I ask for your opinion on it, is the integration of health services. Right now, mental health is outside the loop. If we could bring it into the mainstream of the delivery of health services, maybe we could help it. The empowerment is going to have to come from the individual, the consumer, I believe. The only way around this is to empower the individual to bring about change, because there it is and the media consumes this in all aspects of our being.
So, for me, the challenge is this: If we cannot get rid of stigma, we will change the word in some manner or fashion, but I think the empowerment will have to come from the individual with all of adding to it. I would like your opinion.
Ms. Maynard: One comment I would like to make is that the media can empower consumers to ask for better care, to monitor their own lives and the lives of people around them so that they will be alert for the signs of trouble. However, if there is not anywhere to go, then people get stuck very early on in their efforts to effect any kind of change. I have seen letter after letter saying, ``It is all very well to tell me I should be asking my doctor these questions, but I cannot find a doctor, let alone one who will be qualified to deal with these issues.'' For parents of teenagers who need mental health services for their kids, it is really heart-wrenching to watch what they go through trying to get help for them.
Mr. Simmie: I would agree, senator, that it is a human rights issue. As I was drafting my comments last night — journalists are terrible procrastinators, some of us — I was thinking about what stigma and discrimination are. They are a human rights issue, I believe. As you know, they condemn people to unemployment, to appalling housing.
In my own instance, I was off on disability, finally getting back to work and was going to get an RRSP loan. I went to the bank, a bank I had dealt with for years, and they said they would be happy to give me a loan. I told them I would like to get some insurance on the loan, because I was just returning to work and was not sure how long I would be there. They asked me to fill out a form, and of course one of the questions was, ``Have you ever had a mental illness?'' And once you tick ``yes'' in that box, you will be denied insurance at Canadian banks. That is a human rights issue.
A friend of mine down the street, who is a lawyer and has an excellent reputation, had seen a psychiatrist once. She used to work for a large law firm and decided to set up private practice. When she tried to purchase private insurance, she was asked if she had ever seen a psychiatrist, and she was denied insurance.
These are human rights issues; these types of questions should be legislated against, in my opinion, or should be challenged in court. So, perhaps that is one way.
In terms of empowerment, yes, empowerment ultimately does come from the individual, but I do not think that empowerment can occur in a society that places little value on people with mental health issues. I think it is the time of your life when you feel more powerless than ever.
Senator Cook: In terms of integration of services, tertiary care, primary care, would that help?
Mr. Simmie: I think there are pros and cons. One of the pros is that people visit their GP generally. Therefore, a GP has a perfect opportunity to pick up signs or to question people about signs of their mental health or addiction. It is a perfect screening or entry point.
On the other hand, I visited New Brunswick as part of the series, and in that province, almost everywhere, you will find community mental health centres. They are called ``Community Mental Health Centres.'' If you walk in the door of one of those centres and say, ``I am not feeling that well,'' someone will find out what the problem is, and they know the landscape. They know the mental health landscape so they will hook you up with the appropriate agency or physician. So, in some ways, there are advantages to having a distinct sort of mental health labelled system, but the two are ultimately and inextricably linked.
Senator Callbeck: Is it true with all insurance companies — that a person will be denied if they have a history?
Mr. Simmie: I could not say. I can only tell you about my experience.
The Chairman: We can find out.
We are running late, so I would like to ask you a question and leave it with you, to think about, to get back to me with an answer.
One of you said that it would be unfortunate to have our mental health report come out and only get small coverage in the paper, say, and then disappear. That was not the case with our previous health report, in part because it was so radically different from the Romanow report and, in part, because a number of provincial governments are proceeding to do many of the things that we recommended that he did not. So, it has been kept alive, not such in the media, but by people on the ground. However, in that report, we were not dealing with the issue of how to change attitudes. We were dealing with the issue of how to solve a practical problem.
I sure would like some advice, when you have thought about it, as to what has to be done to keep the mental health issue alive. We can put out a report and make speeches, but to get this issue out of the closet and keep it as a major issue before governments at all levels, one needs a mechanism for doing that. Those of us who have been in and around governments a lot of our lives are inclined to think of governmental mechanisms; however, often there are other ways of doing things. If you do not mind, I would ask you to get back to us on your thoughts on a mechanism. We see this report as the first step in a long journey. It is not the end of the journey. We have to put in place a mechanism that will carry the journey, and I would love to have the thoughts of people from your end of the business, the communications business, as to what that mechanism would be.
Thank you very much for attending here today.
Our next panel will deal with early intervention. They are appearing together as a group, as it were, in the sense that they have all been involved in very similar things. Tara Marttinen was a patient early on. She will be followed by Phyllis Grant-Parker and Dr. Malla. Phyllis is from Ottawa and Dr. Malla is from the Douglas Hospital — and for those of you who do not know Montreal, what was once the Verdun Mental Hospital is now called the Douglas Hospital.
Ms. Tara Marttinen, as an individual: I am a third-year honour psychology student at the University of Western Ontario, and I am also an advocate for those living with mental illness.
On December 4, I composed a letter and sent it to your committee. It was published in your first report of your hearings. It was on behalf of the Parent Partnership Preventing Psychosis.
I am going to talk a little bit about myself, and then make some recommendations pertaining to the third report.
The story of my life begins three years before I was born, and it starts with somebody I do not know to this day — my father. When my dad was 16 years old, he committed a minor offence for which he was jailed. In the days following this offence, he attempted suicide for the first time, and it was not his last time. This should have been a warning sign that something was amiss, that maybe something was going on with him, but nobody really red-flagged it. Nobody took it as anything. When my dadwas 19, the time when I was conceived, he began to behave very strangely. He was acting aggressively, very impulsively, erratic, and he was speaking very irrationally.
When I was born, my mother would not let my father be alone with me because she was afraid of his behaviour and the things he might do. At about the same time, my father was admitted into a psychiatric hospital for the first time, and it definitely was not his last time. He was in and out of hospital in Sault Ste. Marie and in North Bay for three years, before he committed suicide in June 1984. My father was never diagnosed with any disorder in the three years he spent in and out of hospitals. However, after an inquest into his death, he was diagnosed posthumously with schizophrenia — and this is his legacy that I have and carry with me today.
When I was diagnosed with a psychotic disorder, I was 16. It took me less than six months to get the diagnosis my father got six years too late, and I had not even had a break with reality. Break with reality is what happens in psychosis. We lose contact with reality. Early intervention is the approach to treatment that saved my life. Let me repeat: I believe it saved my life, because we see the story of my father, and how I came to be treated by this cutting- edge approach is actually a pretty interesting story.
Given my mother's experience with my father, we understood that I would not receive adequate care in Sault Ste. Marie — which is a Northern Ontario community, basically said to be in the middle of nowhere and nowhere. My mother called an uncle here in Toronto who is a psychologist. My uncle told her about the treatment program that had opened up in London, and I was one of the first clients accepted in its first year. The Prevention & Early Intervention Program for Psychoses — PEPP— has a waiting period of up to two weeks, and clients are seen by a psychiatrist, a psychometrist and a psychologist. Clients are also assigned case managers who monitor their ongoing treatment and care. The case managers also act as liaisons for these clients within the community. Hence, case managers, on behalf of their clients, access programs and services that PEPP does not offer — for example, disability pensions and educational services. Family members are encouraged to be active participants in the loved one's recovery.
I like to mention this, because my grandmother was told to butt out of my father's care. In fact, she did not even know what was going on with him. She did not even know he was released from the hospital. He committed suicide about eight hours after he was released.
I was fortunate to benefit from the PEPP program, which offers a diverse range of services, including social development groups, employment counselling and a peer-led support group. Clients coming out of this program are, in my experience, a lot healthier and more productive — and I say ``in my experience,'' because I ran a youth group there for two years. In recognition of the healthy clients it produces, it hires them to speak publicly about their experiences in the community, and I was one of the first people PEPP hired. Dr. Malla recommended me for this job.
I have had the privilege to share my experiences and news of enduring good health with students, nurses, doctors, and all kinds of community organizations. I am here today not as a representative of PEPP specifically but to represent everybody who has benefited from early intervention programs, and for those who have not been able to enjoy the advantages early intervention has to offer.
I will now talk about my recommendations. I have read the committee's third report — Mental Health, Mental Illness and Addiction: Issues and Options for Canada — Interim Report of the Standing Senate Committee on Social Affairs, Science and Technology, Report 3 — and I recommend increased access to early intervention programming. Section 1.4 of chapter 1 is entitled ``Early Detection and Intervention.'' I believe that it is the federal government's responsibility to set standards for acute care, in addition to standards for ongoing treatment. To my knowledge, there are currently no best practice guidelines in the mental health arena. It is my belief that standardizing care practices and instituting accountability measures will ensure that more people have access to current treatments and that fewer people will fall through the cracks.
Section 2.1 addresses the needs of children and adolescents. It speaks particularly of introducing a mental health program into the schools. In the case of psychiatric disability like schizophrenia and psychosis, I do not think this is a good idea — the needs of these clients are very complex. However, I do believe that counselling and referral services should be provided and that the educators and counsellors should be kept up-to-date with respect to local treatment options. I do believe that developmental disorders like autism require special consideration.
Section 4.1 addresses stigma and discrimination, which I have learned a lot about. A point I find particularly relevant is that, regarding the mental health ambassadors, I have spoken to a diverse range of individuals and groups regarding my illness. Because I am healthy, fairly articulate and approachable, people are generally more receptive to learning about the disease, and I try to shatter those barriers of stigma that people often have. Hence, I strongly recommend implementing a mental health ambassadors program that is not volunteer-based. I believe this should be a paid position and this program would eliminate some of the stigma I think that a lot of people with mental illness have to endure.
The Chairman: Before going to Phyllis, I have one quick question. What is a psychometrist?
Ms. Marttinen: A psychometrist does cognitive testing and measures cognitive functioning.
Ms. Phyllis Grant-Parker, as an individual: Today, I am going to speak to you as a parent based on my own experience and also that of so many families that I have met over the last three years.
Our family has suffered the pain of facing a system that failed and did not provide early intervention, but we have also known the relief and the joy of being part of one that did. I am going to be able to talk to you from both sides, and I will talk to you mainly from a family perspective.
When you watch the impact on your child of a psychotic break and you learn that he or she has a serious mental illness, one that they are going to have to learn to manage for the rest of their lives, it is devastating as a parent, absolutely devastating. When you face the reality that there is basically no treatment that you can find for your child, it just becomes totally unbearable.
Our son's illness presented when he was 16 years of age, in grade 11. Like so many other families, we faced many barriers just trying to find him treatment to support his recovery and managing to keep ourselves well and to keep our family intact. With luck, mixed with a large dose of tenacity and the sheer willpower to keep fighting for what our son needed, we were able to survive. However, there were many times during his three-year journey to recovery that we were really fearful that he would not survive and that we would not have the strength to see him through it.
One of the most stressful issues that a family faces is just in securing treatment. In our case, we were turned away or our son was turned away four times from emergency. On the fourth — three times. On the fourth time, he was taken by ambulance — his second suicide attempt. We almost lost our son that night. Many of the triggers, the indicators, the early symptoms and signs were totally missed by professionals.
Another enormous stressor is fighting to be part of the treatment plan. At 16, our son was advised that he could refuse treatment. He had to proactively sign a form that would allow us as parents to be part of his recovery and allow the doctors to speak with us. Our son was given his diagnosis of schizophrenia at the age of 16 without any parental support there for him.
When you are young and you have mental illness, it is like the system expects you to immediately be an independent adult. In Ottawa, where we live, we could not find him the necessaryage-appropriate treatment. The Children's Hospital of Eastern Ontario — CHEO — had no program. The Ottawa First Episode Psychosis Clinic at the Ottawa Hospital had a six-month wait. As a result, my son was hospitalized in a tertiary care hospital housed with chronically ill adults and no rehabilitation program. It is a pretty bleak forecast for a teenager and for his family.
After countless hours of research on the Internet, we discovered the Whitby Mental Health Centre, and this is when the story turns bright. It is an adolescent rehab program, and we were lucky to have our son admitted because there are only seven beds to serve all of Ontario. This program offered a multidisciplinary team approach, with psychiatrists, social workers, youth workers, rec therapists. Families were encouraged to participate. In fact, it was essential that you did in order to have your child participate. We were assigned a social worker with weekly family meetings. Parents attended a 14-week educational series, and they provided a seamless transition for our son. When he turned 18, he was transferred to their similar program, the Young Adult program.
Hence, while we were very fortunate as a family to get access to this kind of support, it was at a tremendous family cost. It was a five-hour drive from Ottawa for us to see our son. The emotional impact of having him ill that far away was tremendous. Over the 14 months, we drove 49,000 kilometres, lost 50 per cent of our family income, closed a family business, and had $29,000 worth of out-of-pocket expenses.
Therefore, based on our experience and the experience of many other families that I interface with, I recommend the following as the best ways to support caregivers for those suffering the onset of psychosis.
First, I strongly believe that we need a national policy on mental health care and early intervention psychosis that guarantees our rights to treatment and support. We need adequately funded early intervention programs or centres of excellence without wait periods and accessible to all Canadians. These need to be staffed by multidisciplinary teams that can offer world-class best practices and standards.
We need age-appropriate treatment for adolescents and young adults that includes psychosocial rehab, to strengthen their recovery and to educate them to manage their illness effectively. This will reduce the need for long- term parental care and learned dependency.
We need trained emergency services personnel who can identify the early warning symptoms. I find it odd that we would actually have emergency people who cannot identify this.
I agree with the committee's proposal of a national portal that provides access to information and services, because, quite frankly, without searching the Internet, we would never have found the help that we needed.
Each patient and family needs to be assigned a case manager to help them navigate the system and to develop an individualized patient-centred care plan, as was identified in your initial report.
I also recommend that each family have a social worker assigned to them who works with the family unit to help them cope with the impacts of the illness.
As far as increased support from the education system, I recommend that the provincial education ministries mandate increased education instruction for students and faculty on early detection and stigma and how to support a student who is in recovery.
For some people in the early stages of their treatment during a recovery, aggression and violence can be an issue, and many families face this. Some people, due to their home environment, whether it is real or imagined, just cannot stay at home during treatment. In these circumstances, to support caregivers, we need quality residential programs that provide patients with secure living while receiving treatment and during recovery.
We need mobile crisis teams that caregivers can call, as opposed to calling police as first-line response. I can tell you that it breaks a parent's heart to see their young child taken away in handcuffs in a police car. We need increased training to response by police and ambulance attendants, et cetera, to provide appropriate intervention.
We also need some sort of respite care for families who are dealing with their loved one at home.
One of your questions was this: Should caregivers be more involved and what kind of involvement should they have? I think it is essential that families be involved because we hold the benchmark of our family member. We know the person before their illness, and this illness can, during the early treatment time, seriously change behaviours. The medical team only sees the sick person. Hence, we hold the benchmark, because true recovery is really to return a person to him or herself, to come back to who they were as close as possible. Therefore, parents and families need to be welcomed as part of the team, and we need a national or provincial ombudsman who can intervene on a family's behalf. Changes to the legislation are required, to allow greater family involvement and to make it easier for caregivers to access care, even when their family member may resist treatment.
One thing for sure — the age of consent for youth should be a minimum of 18, just as it is for any other illness. Why would we allow a 16 year old in the middle of a psychotic break to make his or her decisions without parental support?
Federal, provincial and regional governments also have to work together to develop consumer advisory committees. I also think that it would be a good consideration to have family members as part of those committees.
I think one of the things we face, particularly in Ontario, is that children's mental health falls under the Ministry of Children and Youth Services, as opposed to health care. As such, it is extremely cumbersome to have any seamless transition. I believe that even young adolescents, aged 14, say, who experience early psychosis, that at the onset of psychosis they be provided access to what are more considered the adult early intervention programs.
Dr. Ashok Malla, Head of Research, Douglas Research Hospital: Thank you for asking me to be part of this presentation, and particularly part of the two presentations that we have just heard.
I am a professor of psychiatry at McGill, and I hold a Canada Research Chair in Early Psychosis. However, before that, two years ago, I was working in London and actually was fortunate enough to be in a position to start the first early intervention program for psychoses in this country, and also fortunate enough to have persons like Tara to work with us after she got better, and her family.
To put this in some perspective, psychosis is just one example of some very serious mental disorders that we have to deal with in every population. There is not a single community on this earth that does not have to deal with mental illness.
What makes it particularly serious is that all of these disorders have their onset in adolescence, and they are lifelong in the sense that the vulnerability to these disorders never goes away. It is like having diabetes. You may be free of symptoms but you are not free of the illness. To put it in another perspective, when people present with the first onset of psychosis, most of the time they are hospitalized. They do not have to be if we have proper programs. Some of our own data that we have just finished collecting tells us that 30 per cent of people who come to hospital with their first onset of psychosis have already had some legal involvement. Most of it is minor legal involvement, but because they do not know how to negotiate the system, they got into a lot more trouble than they would otherwise. Fifteen per cent have already attempted suicide. Fifteen per cent have injuries sustained either through suicidal attempts or through violence from others and 15 per cent have shown some aggressive behaviour. These are all untreated people. On top of that, the average delay in treatment of psychosis is about one to two years. For depression it is eight years. For phobic and anxiety disorders it is 26 years. That gives you some flavour for where we are in recognition of early signs of mental illness.
As to specific comments about the report, of what has been said by Tara and Phyllis I fully support. I certainly cannot put it in any better words, but I will add a few things, both from my own experience and from the research that we have been doing over the last many years.
First of all, what Phyllis said, if you think about it, is really asking for the ordinary which our system has made extraordinary. People are simply asking for families to be involved in their loved one's care. There is nothing extraordinary about that, but the system generally rejects it.
I think the committee's report is absolutely correct in assuming that the mental health care system functions more from a provider's perspective than from a client or user's perspective. This is unacceptable and has to be changed. The changes that are necessary include somewhat of a complex but a necessary relationship that has to be formulated between community focus services, hospitals and academic centres, partly because the existing knowledge is more in the academic centres and hospitals and yet the services really have to be delivered from the community.
One of the most limiting factors for improvement is lack of proper training, and in all of the interventions I think one of the most unfortunate things is that we know so much more than what we use in treatment. The knowledge in treatment of mental disorders has really blossomed in the last 20 years, and I am not talking about just medication here. I am talking more about the non-medical interventions, and very few of them are used. About 10 per cent of patients actually receive proper family intervention — and yet there are at least 25 studies showing that family intervention reduces recurrence rates by 50 per cent.
Culturally appropriate services, item 1.2, is an essential element. I learned more about it since going to Montreal, because Montreal is much more of a multicultural, multiethnic society. We have areas where 44 per cent of the population of the area were born outside the country. Culturally appropriate services must involve more than just translation or interpretation. It requires proper training of staff, flexibility and access to services, and ability for the system to simplify itself for the sake of culturally diverse populations.
Yesterday I was asked to see a young man who, unfortunately, does not meet criteria for our program, because it is not his first episode, but I saw him anyway. He is of Cambodian parents. He could hardly say one word. He was so acutely ill, and he had just been discharged from another hospital after spending seven days there. The father did not have a clue about how to negotiate the system. They had no medication. I happened to have some samples, so we provided him those. In addition, the family did not have the money to buy medication. The big gap in our health care system is that people have to buy their own medication.
Item number 1.4, early detection and intervention, we all have to admit that we do not know what causes mental illness nor do we know what causes the majority of medical disorders. What we do know, as much as we know about medical disorders, is about risk factors. We know some prominent risk factors of who is going to be at higher risk for mental disorders and who is not, especially for schizophrenia and manic depressive illness. We also know that delay in treatment of these disorders is detrimental to the welfare of the person, the family, and not only that, it does not bode well for their long-term outcome. The interesting thing is that the outcome you get with these disorders at the end of one year is what you are going to get at the end of 15 years, not much changes after that. So, most of the window of opportunity is the first couple of years.
We have reported, others have reported, delays of one to two years, as I said, and believe it or not that delay is not in people not going to seek treatment. That is a very small part of the delay. The larger part of the delay is the run-around they get after they seek treatment. On average, people seek treatment for one to two years and have contact four times with different health professionals before they get actual treatment.
What are the solutions? I would give you my opinion about some general solutions. I think we need generic mental health literacy programs, but not just about what is mental illness, what is schizophrenia, but about risk factors. Populations, especially high school teachers and students, need to be taught about what are these risk factors, who is at higher risk.
Measures for general improvement in the lives of those who are particularly at high risk I think have never been attempted seriously. I will give you some examples. These would include children of those who already have an established mental illness. They are going to be at least 10 to 40 times at higher risk for those very mental disorders. People with lower socioeconomic status, people living in densely populated areas of urban cities, especially in the age period between 8 and 12, people of visible ethnic minorities, especially if they live in non-ethnic areas — it is now fairly well-established that they are at higher risk for mental disorders, serious mental disorders. Adolescents who are already at high risk for substance abuse — for example, cannabis, even moderate use of cannabis before the age of 15, increases your risk for schizophrenia by about three and a half times.
With respect to specific solutions, I think we should follow the example of National Health Service in England and Wales in establishing a national strategy for early intervention in psychoses. They have just dedicated 39 million pounds per year and established one large service per million unit of population, and following best practices. At a federal level, it would be important to fund several demonstration projects in early intervention in psychoses and other serious mental disorders with fully equipped funding for model service delivery, for evaluation and research, so that we can generate new knowledge and prepare the provinces for a negotiated strategy in this field. Unfortunately, knowledge in this area cannot necessarily be translated entirely from one country to another, because our health care systems are different.
We need specifically marked funding — this is very serious for research and early intervention in schizophrenia and manic depressive illness through bodies like the CIHR or, preferably, directly from Health Canada, but not through competition with biomedical research. The reason for that is that biomedical research is much further developed in its methodologies. Their methodologies are more simple and straightforward. I do that research as well and believe me it is so much easier for me to get a grant in neuro-imaging than it is to get a grant for early intervention.
We need to define a clear pathway for transfer of knowledge with appropriate training. For example, we need to do studies in early intervention where we involve primary health care, teach them how to recognize mental illness early and then see if we can actually transfer that knowledge generally.
School mental health programs — I would agree with Tara's statement that they are important, but we have to be very careful about what we introduce into the schools. They are generally very effective for certain types of problems, but they have to be guided and done in collaboration with academic mental health services.
In terms of 1.5, enhancing access, I think access should be open and flexible, maintaining systemic integrity only as far as it serves the needs of the clients and their families. Sometimes I think systems become very rigid and people fall through the cracks. For example, with respect to a low-incidence but very severe disorder such as schizophrenia, people should have direct access. They should not always have to go through a family doctor. If they feel they need access, they should at least have access to an assessment, and that assessment should be conducted in the least restrictive environment, not necessarily in a clinic. We have done this for many years, and I can tell you that it engages young people very quickly, rather than expecting them to come to your clinic or to your hospital.
Alternatives to hospital care in general I think should be reformulated and not simply made extensions of the old system whether they are in the community or in the hospital. For example, the idea of a day hospital I think is very appropriate — and I am sure some of my colleagues would disagree with me — for an older population but it is not appropriate for very young people. You will not get 17 and 18 year olds coming to a day hospital and sitting there all day. We need to think very differently about where we take their care to them, whether it is in the coffee shop, in school or at home.
I would recommend a study of the system that has been running for several years now in Birmingham, England, where an alternative hospital care for young people is not situated in some hospital or clinic but is in houses, in residential areas, where people who have graduated from these programs staff these places in conjunction with other trained staff. This is less stigmatizing. One of the incentives to do this in Birmingham was the very high population of East Indian people, who have about five or six times the rate of psychosis, and are very reluctant to seek services. This has really sorted out their problems. Their rate of involuntary admission has almost disappeared.
Children and adolescents need special attention, because most psychiatric disorders have their onset during this age or at least they show certain signs of these risk factors I talked about. However, separation of child/adolescent from adult services I think is artificial and it is counterproductive. While resources for this age group shall be protected at all costs, disorders with onset during adolescence must be treated within a system that is continuous, so that the expertise is available where the person needs care, as opposed to the person going for so X-number of years to this unit and then being transferred when they turn that magical age of 18 to another set of programs.
Last comment I want to make about stigma. It is needless to say that it is probably our greatest challenge and a great deal of research is needed before we can talk of effective intervention. In my opinion, there is little point in spending a lot more money in yet more service. I suggest that the study of an intervention to reduce stigma should begin with the service providers. There is a great deal of stigmatizing behaviour, even unconscious stigmatizing behaviour among the service providers. For example, what Phyllis mentioned, leaving the families out, as if it has nothing to do with them. I always tell my students and my staff, ``When you see a person who is going to be your patient, think how you are going to treat your brother, your daughter, your son. Just put yourself in that position and then start talking to them.'' The stigma campaigns and stigma research should really boil down to that level, that micro level of units.
We should try to deliver services and benefits in such a way that it retains the individual's capacity for independence, whatever that level of independence may be. We have a system where either we provide nothing or we give them this patient role for the rest of their lives and then make them dependent on what we have to provide them. This is a very delicate thing to do, but I think we have to attempt to do it — and you have an excellent example here of someone entirely independent and who has as good a future as I hope and I wish for my own children.
I would submit that we have one of the better mental health care centres in the world, but I think we have very far to go. I have seen mental health care systems in Japan, in Switzerland. I can tell you that ours is phenomenally better, but I think we need to do a lot more to make it truly, truly accessible to people who need it the most.
The Chairman: Thank you to all three of you.
What percentage of people who need it would get early intervention?
Dr. Malla: A very small percentage. There are a handful of early intervention programs currently in Canada. The early intervention movement really started in the mid-1990s — and actually started in Melbourne, Australia.
We started our program in 1997; it was one of the early programs. There is a lot to be worked out about what is early intervention. It is not simply providing treatment early. If we just simply bring forward the treatment we used to provide and provide it early, it is not early intervention. We need two things. We need an early intervention approach, which is a different approach to treating young people, taking into consideration their developmental needs — that they may recover completely. We have to keep that in mind. We also need to reduce this delay in treatment. So, it is kind of a two-pronged approach.
The Chairman: When you said that a very small number of people who need it get early intervention, are you talking 5 per cent to 10 per cent?
Dr. Malla: That would be optimistic.
The Chairman: You talked about a stigma from people who actually work in the mental health field — to me, that is counterintuitive. One would assume that the group that most likely would have dealt with the issue of stigma and gotten rid of it were people working in the mental health system. I am surprise to hear anecdotally at least that people working in the mental health system have the same attitudes as the general population. That is counterintuitive, right.
Can you talk about a couple of examples, and Tara may well have had some too as a patient, that you ran into when you were dealing with people who were supposedly providing service to you?
Ms. Grant-Parker: A couple of examples quickly come to mind. One would be when we had to take our son back by ambulance when he had been hospitalized.
The Chairman: Back to Whitby.
Ms. Grant-Parker: No, no, before Whitby. We were still seeking treatment for him and he had a break. We had to take him by ambulance, and when we got there, we knew exactly what he needed because he was — I am sorry, he was currently being treated at Whitby; he was home for the weekend. We knew he needed a particular medication. The nurse was very upset at me, for pushing for this medication. I told her, ``You need to realize that this particular medication for my son is the same as an inhaler or oxygen would be for someone with asthma who could not breathe.'' Hence, just being able to get recognition of the severity would be desirable.
At CHEO, they have what parents in Ottawa refer to as the ``funny little room.'' When our children were brought in by ambulance, they would go into a particular room, so nobody else could see them. That room had a window. Now, for someone who is suffering from psychosis and may have delusional thoughts, to be placed in a room with a little window, where people watch you, and where every time there is an announcement it is heard in that room, that is not good.
However, being told in emergency — understand that most parents do not ever really even know what is happening. If you have never been to emergency before, and you know nothing about psychosis — and I had no idea what was happening. My son was starting to behave differently, and suddenly he did not want to talk to me, did not want me involved. I said innocently to the doctor, ``I don't know. I feel like there is something wrong with me or something.'' He said, ``Well, quite frankly, I think you are probably the problem.'' It is hard for me to believe that in the year 2002 I would hear that remark from a doctor in a highly reputable facility.
The Chairman: That tells you a lot.
Ms. Grant-Parker: The other place where there is great stigma is in the high schools themselves. My son was an honour student, junior athlete of the year for this high school, but when he became sick no teacher, no coach, no administrator ever, ever called to find out how he was. There has been no contact whatsoever. There are two places one can seek help from at that age, and one of those places is in the school. School is a huge community, and you look for help there, and you look for it in your medical staff.
The Chairman: Everybody ran for cover.
Ms. Grant-Parker: We are a little tenacious in our household, so I called the school and told them that I really did not think this had been a particularly cool thing. I told them that had my son been suffering from cancer, the school no doubt would have had a fundraiser and his room would have been filled with gifts. Instead, I said, my son has become persona non grata — nobody wants anything to do with him because of the stigma that goes with it. These were my son's friends. He has been in the process of having to make an entire new set of friends.
The Chairman: Tara, any comment you would like to make?
Ms. Marttinen: One of my first talks was with a group of nurses in the psyche ward at the London Health Sciences Centre. After I gave my talk, they were all coming up to me and saying, ``Well, that was really interesting. You do stuff; you have a life. I only see you when you are ill. I did not know you have a life.'' The nurses do not understand or have a conception of who we are beyond our illness. It is important to have mental health ambassadors or young people, clients, visit with nurses and doctors, talk about their life when they are healthy, let the nurses and doctors see them when they are healthy, because then they would be able to personalize it a little bit more.
The Chairman: Even though the nurses you referred to are psychiatric nurses, they did not get that there was another you outside of the hospital.
Ms. Marttinen: No. They are desensitized; all they see is the illness. They treat the person as an irrational being, dependent and child-like, basically. I have never been in the hospital. I am really lucky. I never had to experience some of the stigma that can go on in the hospital. However, I have friends who have told me horror stories, just of things that have gone on with them — where doctors said inappropriate things in front of the them. It is really sad.
Senator Cordy: Tara, that goes to Phyllis's point of the family being involved and having the benchmark — treating the person. You are treating a person and it all becomes all-inclusive.
I want to go back to early detection and intervention. Tara, you were fortunate, in that your mother knew somebody within the system so was able to get you information.
Phyllis, you have already told us that you are tenacious and you used the Internet and got information.
What about families that do not have access to the Internet, that do not have access to somebody within the system? How are they coping? Are they getting early intervention?
Dr. Malla: Maybe I can respond to that. I think the quick answer would be no, because we really do not have an early intervention strategy in any of the provinces. British Columbia may have come closest to it. When I was in Ontario, up until two years ago, we formed a working group and eventually persuaded the government to put some money into early intervention, which, unfortunately, came after I left so I did not get any benefit of that. However, it has come through, and hopefully it will be part of the policy that took about three years.
As we have all said, we need the kind of national strategy that Australia is looking at, the national strategy that the National Health Services in England has already started, and they are into their third year now. Right now, these are elite programs. I would be the first one to say that my program is an elite program. I started it. I went to Montreal. I was recruited there just to do that. Maybe the population that we serve has access to it, but people on the other side of Montreal do not have that access. Most of the country does not have access to these kinds of services.
It is not a simple thing to do, either. Early case detection is very complex. Early signs are easily mistaken as adolescent turmoil or sometimes simply brushed off as cannabis use. However, those of us who are working on the academic side of early intervention have now programs where we can teach people. The problem is funding. We are just starting a program in Montreal, working with CLSCs, which are our community health agencies and primary health care, but we have to practically beg for funds. We have a few donations here and there. You cannot get funds to do things like that. Some people do not really believe it is doable.
I had a comment that I do not mind sharing with you. I had a research grant recently rejected — which I am resubmitting. One of the comments from the reviewer was that you cannot do this because family doctors will never learn how to recognize psychosis because they are too busy. That was the major comment. Of course, we are not going to be successful in every case, but we have to try something different because nothing else is working.
For 55 per cent of these patients, their first contact is the family doctor. Only 5 per cent, and I am quoting you our own data, but this is actually a little bit better than data from France, only 5 per cent of them actually get into treatment the first time they make a visit. Most of the time they are missed, not because family doctors are not good but because separating out what could be adolescent crisis from psychosis is a highly specialized skill. As well, there are going to be false positives — and some physicians think it is a waste of an hour. However, in my opinion, it is a good use of an hour to say, no, you do not have a psychosis. That is the system we need, one where there is a capacity for immediate assessment.
If a mother calls and says, ``I have a son who is 17 and I think he is agreeable today to see you,'' and we respond, ``We will see him in two weeks,'' the chances are that in two weeks he will say, ``I never said I will see you.'' However, on that day, if we were to send somebody out, just have a little chat, nothing formal, just make that contact — that is the sort of system we need. I can tell you that it is not any more expensive than having hospital beds. We have just done a health economic study to show that, in fact, it is not just only cost-neutral, it is actually cost-effective.
Senator Cordy: In my past life I was an educator, an elementary school teacher, and I know that sometimes you would make a referral and it would be six months before a family could be seen, a family in crisis. I guess I am wondering how much educators are kept in the loop. You talked about the need to educate educators, so that they can pick up on things. Educators are at the front line; they are seeing a child for five hours a day.
I am wondering how much educators are kept in the loop about things that are happening. At times, it was very frustrating as an elementary school teacher, not to be given information that you needed in teaching the child as a whole person. Obviously, you were not going to stand on a street corner announcing information that you had gotten from a doctor or hospital, but it was almost suspect by psychologists or psychiatrists that you were only an educator and you could not deal with it. Is that still the case?
Dr. Malla: I think it is still largely the case, and I think there does need to be some change there as well, not only in our health care system but some sort of a dialogue between the health care and the education system. A lot of the school psychologists would have excellent training in dealing with psychological problems, but not really a good knowledge of serious mental disorders, the risk factors and early behaviours that are perhaps suggestive. Even if you knew that a particular child had some difficulties — I only mentioned four or five risk factors. That kind of knowledge would be helpful, and, later on, during high school, early adolescence, there may be a different level of knowledge that is necessary.
We ran a program in London where one of our senior clinicians rotated between all high schools, attending guidance counsel meetings. Each month, she would go to each of the schools — which is how we actually did a lot of the early identification. It was not a huge yield, but it attached a face to a name, so that when they called, they knew who to call. They do not have to actually reveal the child's name. They can simply say that they are seeing a particular kind of behaviour, and ask, ``Should I be doing something or should I just watch it?'' This advice is available all the time. However, if the two systems never have any connection with one another, it is not going to happen.
Senator Cordy: Tara, do you speak to young people in school settings? What is your role?
Ms. Marttinen: I have not actually spoken in schools yet. I have been asked to, but it just did not fit in with my schedule while I was at school at Western, so no.
London has a youth ambassador project where they have young people from high-risk groups taking counselling training to mentor other high-risk adolescents, and I spoke to them. I have spoken to smaller groups like that.
Senator Cordy: As we have said here, the stigma issue is very present in the adult population. Certainly, when you are a teenager, you do not want to be different than your peers. You want to fit in. How difficult is it for a young person, and you did it, but how difficult is it for a young teenager to step forward and say ``I have a problem''?
Ms. Marttinen: It is really hard. I remember the first time I told somebody — I was very scared. How do you tell somebody, ``I have lost my mental faculties''? In some way, you feel like a diminished person.
I made a point of telling my friends because them knowing was them being supportive towards me. That was part of my support group, I guess you could say, support network. However, I was so healthy — I never had a break with reality. I was never bizarre or irrational or anything like that. People took it fairly well coming from me, but I know people who had different behaviours who did not get as good of a reception as I did.
Senator Cordy: Have you thought about the easiest way for a young person to disclose to a trusted adult?
Ms. Marttinen: The easiest way to disclose to a trusted adult — I think anonymity is an important thing.
Senator Cordy: Sorry?
Ms. Marttinen: Anonymity. One of the fears is that everybody is going to find out. When somebody knows, everybody is going to know, and people are going to treat you differently. So, I think an important issue is to always have that as a part of it.
In schools, one of the reasons I do not thinking treating people in schools is ideal is that there is stigma associated with mental illness right now, and when you see one of your friends going into that door at the school, you run the risk of them being talked about and gossiped about in high school.
Senator Cordy: There is even a stigma in schools. It is okay when five, six and seven year old are going for extra academic help. However, as they get into the upper grades, there is a stigma attached to that. So, when you talk about a mental illness and going to the room or the door, you are absolutely right.
Ms. Marttinen: My mother called my principal after I was diagnosed and wanted to talk to him about it, and we sat down and had a chat with him and he said, ``Okay. Everything is fine. I will let your teachers know and we will deal with this accordingly.''
So, I went through high school. I was in grade 11 when I was diagnosed. I went through for three years, and when I came back to get a scholarship letter of recommendation written from a teacher, I said, ``Will you write this recommendation for me. It's about mental health,'' and I just dropped it off. He called my house and he said, ``Mental health, what is this?'' I told him about my diagnosis. I asked him whether he knew. He said, ``We were just told that you were having problems at home.'' I do not know what they thought the problem was, but they did not know I had a mental illness, and a very serious one. They would have treated me differently, I think, just having that knowledge. So, there is that stigma too.
Senator Cordy: Phyllis, if you look at the case of your son, top student, top athlete, these are the kids who are esteemed in high school — particularly, unfortunately, athletic before academic probably. You would think that that would be the perfect role model to portray mental illness as being something open, and yet that was not the situation with your son.
Ms. Grant-Parker: It is a Catch-22, because the only way we are going to break the stigma is having enough people like Tara come forward. However, there is such a risk — and Tara was lucky as she said because she did not actually have a break with reality. My son did and friends witnessed some of his behaviours that were very uncomfortable for them — nothing that was catastrophic, but just they were very uncomfortable with him.
As a parent, when people would ask me why he was in the hospital, what was the matter, I always had to be careful about what I said, how much I disclosed, so that he was not be stigmatized or discriminated against?
We have a good program in Ottawa, Parents' Lifelines of Eastern Ontario — PLEO. It is a parents' organization, where we support families with youth with mental illness. Our executive director and her son, Justin, who is 20, along with a psychiatrist from the Royal Ottawa present in high schools, and they get tremendous response. It does work when you do it. In fact, one day, one of the students at Glebe High School said to Justin — she was about to ask him a question — ``Before I ask you the question, I have to tell you that you are so brave. I am so impressed that you would be so brave to come and talk to us today.''
So, it is making an impact, but the risk is so high for that young person. I have asked Justin's mom, not him, whether he has had an impact, and she said, ``As far as we are concerned, as far as he is concerned, this is an illness like any other illness. That is what it is, and so we treat it no differently.'' That is why you want to share information. However, there is no doubt that it is a difficult thing to do. Not knowing how that information will be used and where it will carry forward, whether it will affect somebody's ability to get a job or whatever — those are the unknown risks.
Senator Keon: Thank you very much all three of you for coming in and educating us in this area.
I will start with you, Phyllis. We are wrestling with how we could structure this so that people can have access to community services or to mental health services through community facilities probably associated with primary care and home care and so forth. However, had there been a program in the community that you could have plugged into — similar to what Tara had — would this have made a big difference in the way your son was managed?
Ms. Grant-Parker: Huge. That is what we wanted. Having to take our son to another city to get treatment had huge implications, even just his integration. Integrating from hospital back into the community to start with is a hurdle. When the hospital has been your home, and you have been out of touch with what has been going on in your community, that is big.
We do have a program such as the one in London, but it is underfunded. So, we did not have the ability.
I attend a lot of meetings to advocate for funding for health. It is interesting — I always think of my hospital, any one of them, as part of my community. I am always sitting in meetings where we talk community versus hospital, as though they are two separate things. In fact, we called London. We tried to get our son into that program, but he was outside the catchment area; neither were we able to get him into the Hamilton.
Senator Keon: Dr. Malla, I am familiar with the overall medical literature but not the psychiatric literature. We have certainly never drilled down through it, but the overwhelming attitude, at least from an editorial point of view, seems to be that early intervention is the key to everything in this discipline in mental health, particularly for the young patients, but there can be no early intervention if we do not have access centres, right?
Dr. Malla: Absolutely.
Senator Keon: I was quite intrigued with what you had to say about the way you see the universe unfolding — and there is no question that what you are doing is highly successful. However, the community at large, the large population, would not have access to what you are talking about as far as I can see.
We are grappling right now with how we can integrate mental health services across Canada, provide a model and a strategic plan that would integrate mental health services, from theworst-case scenario, forensic services, right down through the hospital services into the community services, but with continuity and particularly with open access at the bottom end and, of course, follow-up through the bottom end. How do you see that?
Dr. Malla: Obviously, the first thing is that mental disorders are extremely heterogeneous. There is a hierarchy of needs even within specific disorders. Any system has to come to grips with that. There may be a good proportion of what are classified as mental disorders that may, in fact, require very minimal intervention, at least minimum specialist intervention. We are talking about anxiety disorders and moderate depression, for example, which are ideally dealt with within the primary health care centre. In many cases, you do not even need a physician to do it; you need staff that are trained, who know exactly what works with this population.
Then you have another layer of services that are for first-onset serious mental disorders — and that is what I think a lot of what we have been talking about today has been, that is, that first onset of a serious mental disorder, where the long-term consequences of not providing the best possible treatment as early as possible are enormous. I keep coming back to the National Health Service in England. That service has taken it upon themselves to organize not just a strategy but also to put dollars into services where it is clearly defined what the standards are going to be. We may have to do that disorder by disorder, not that there is not some overlap. Of course, there is overlap. There are complexities in human behaviour.
The stigma part, although it is an overarching thing, is too complex to be dealt with in one strategy. Providing early treatment and getting people better in itself is likely to be destigmatizing, because if people do not look odd, nobody is going to know there is anything different about them.
On one hand, I can see that you have a huge task of making suggestions or making an overall plan for the country, that where mental health services are integrated they are uniform. At the same time, you may have to think about some need for hierarchy of the disorders and the needs.
For example, if an individual who has schizophrenia has two parents entirely interested in him or her, all you need to do is provide them with the medical interventions and get the families involved to start with. There is not a lot more that particular patient is going to need, as opposed to someone who has only one parent and that parent also has a mental illness. The second person is going to need an entirely different level of services. So, we have to create a system that may be uniform from the outside but on the inside it has to take into consideration these things.
Just as an aside, we have just published a paper where we have shown that family and social support turn out to be the best predictor of re-hospitalization over the subsequent three years — and this is not new news to families. However, there are young people who do not have supportive families. So, we need to create an entirely different level of service for them.
I apologize if my answer to your question is complex, but the problem is complex as well. I think a lot of the burden on forensic services is actually as a result of services not being provided through the regular system.
Senator Keon: Tara, if you had to visit a clinic regularly, would you prefer a sign over the door that said ``Community Mental Health Services'' or would you prefer a sign over the door that said ``Community Health and Social Services''?
Ms. Marttinen: Probably ``Community Mental Health Services'' — hopefully you would be calling it what it is.
Senator Keon: You are at the stage now, I imagine, where it does not bother you to say good-bye to your friend on the street, and say, ``I have got to go in here for an appointment.'' You have gone beyond that.
Ms. Marttinen: I am a little bit beyond that, I think. You know, some people may have an issue with that but it is, you know what, in practical purposes, it identifies what the facility is, and I think — I hope that we all reach a point in dealing with mental illness that we can come to accept everybody and accept that we have these issues and problems. It is not really problems. They are issues, you know. I cannot fairly answer that because I have worked myself in a new position where I am comfortable with this and I do not know how somebody else would feel about that. They might feel a little differently than I would — and personally I have never walked into a building whose sign reads ``Mental Health Services'' or anything like that. Most of them have a pretty ambiguous sign.
Dr. Malla: I think Tara is a very brave girl, and she is also nicely idealistic, but the reality is that a lot of the time that it is not the case, and this is why you see with early intervention programs a lot of acronyms. We came up with the acronym PEPP, in fact, before we actually named the program. We fitted the words into that acronym, Prevention and Early Intervention Program for Psychoses. I remember the day we came up with that acronym.
We have just created a high-risk clinic in our centre, and we have called it CAYR — Centre for Assessment of Youth at Risk. Once people walk through that door, it is different. Maybe one could say that that is falsifying things — but to me it is like the saying, a well told lie is better than a harmful truth.
Senator Keon: The point I was trying to come at is that it would seem to me a tremendous bonus to roll mental health services into the big picture of health services and social services. We all admit that social services are going to be a huge part of this.
Dr. Malla: As long as the money is protected.
Senator Cochrane: Tara, I do not want to be invasive, and if you do not want to answer this, that is okay. Was your treatment paid for by a medical care plan, or did your mother have to endure a lot of expense to get you treatment?
Ms. Marttinen: It was partially covered, but travel expenses were not covered. We had to apply for grants to travel from Sault Ste. Marie to London, but we were denied a lot of those because we were travelling so often and we did not necessarily meet the criteria. Hence, some of it was out-of-pocket but most of it was not.
Senator Cochrane: Phyllis, how is your son now?
Ms. Grant-Parker: He is doing quite well. He is still in recovery, back at school — he has to get two more credits — and planning university.
Senator Cochrane: That is wonderful.
Dr. Malla, I am so impressed with what you have told us. How does one get the most informed treatment from the most knowledgeable people?
Dr. Malla: How does one get the most informed treatment? I think at the moment it depends on where you live. If you live in a place where somebody has a particular interest and is running a special program, you are going to get help. This is why we need national standards — and above all, we need training. Pharmaceutical companies do a great job in selling their drugs. There is not a single person who sells any other treatment. So, it depends — if you are lucky enough to be living in an area where people are running programs like that, you will get good treatment.
Senator Cochrane: It is hard to find out about, right?
Dr. Malla: No. You can find out on the Internet now — there are 12 early intervention programs that are highly developed throughout the world, maybe 15. We are all connected on the Internet. If you press ``early intervention'' you will get on.
Senator Callbeck: Tara, when you are dealing with people or talking to groups of people, does it make any difference whether it is a youth group or an older group in terms of having an impact at reducing stigma?
Ms. Marttinen: I really do not think so. In my belief, there are two age groups of stigma. There is the older population, who has experience with chronic mental illness and media stereotypes. So, when I come to talk to them about mental illness, I tend to dispel the image they have, and they almost do not believe I have a mental illness. ``You are so healthy. What is wrong with you?''
When I talk to young people, they do not have as much experience with mental illness. They see it, but it is not as ingrained and they do not have as much experience with family members becoming ill and things like that. They really have less of a negative perception. It is more of a positive groundbreaking thing for them. I think in general it is a more positive experience for them because they know now that there is a greater possibility of achieving something better than chronic mental illness.
Senator Callbeck: Phyllis, when you talk about consumer advisory committees — there is one attached to your hospital, and you are a part of it, I take it, from your notes. You have found it to be very good; in other words, obviously, your group has been listened to. You are suggesting that the federal government set one up, the provincial governments and right down the line, that every hospital should have one?
Ms. Grant-Parker: Yes. It brings everybody to common ground, and issues and concerns get discussed. We have patients, family members, staff, medical staff, from the hospital. In my experience, things get discussed and proposals and remedies get put on the table, and that is just at the hospital level. I think it would be great to roll that up to a federal level.
Senator Callbeck: Doctor, you say that school mental health programs may be important but are generally effective only for certain types of problems. Could you elaborate on that, please?
Dr. Malla: I think an excellent example in the last few years is the efficacy of school programs for reducing bullying. Bullying it is more than just bullying — it has all kinds of consequences for other children and mental health problems that result from it. Another one would be early identification of developmental disorders.
However, in terms of serious mental disorders, they are low frequency. There will be about 60 to 70 per 100,000 in that age group per year. So, we are not talking about many children. It is very difficult to have programs that would be that specific. The best thing we can do is sensitize people so that if they see these kinds of behaviours, these are the possibilities, here is the service, call and check it out. I think that is what I meant.
Senator Pépin: Dr. Malla, in terms of intern medical student and nurses — we have had many representations where people have told us that medical students and nurses do not know anything about mental illness. People have told us of their experience at emergency, where the nurses and doctors have said inappropriate things to them.
In your opinion, should there be training for nurses and doctors? I am a former nurse, and we used to spend three months of our training in a psychiatric hospital, and it was the same for interns. Should interns and nurses receive special training, or should it be left to trained volunteers and practitioner nurses?
Dr. Malla: No. I entirely agree with you. In the last 10 years, most of the medical schools in Canada have introduced a lot more sensitivities into training on mental health issues. At the Western University, where I spent 20 years, I saw that change, where we started teaching simple interviewing skills to medical students from first year whereas we used to do it in the third year. I agree with you that I think there needs to be a lot more of that sensitizing training for all medical staff. Unfortunately, the new system of postgraduate training in Canada has switched away from what used to be a rotating internship, where everybody had to spend a prescribed amount of time in each specialty. Now, people do not have to do that and that I think has its disadvantages.
Senator Pépin: Madam Grant-Parker, you said that parents should be consulted, and that the age for youth to give approval should be moved from 16 to 18. Could you elaborate a little bit on that?
Ms. Grant-Parker: Right now, the legislation is such that if you are being treated for a mental illness and you are 16 you have to sign a form before the medical team can speak to your family. Without that signed consent, the family can be given no information. My son had to sign a form that said that his condition and his treatment could be discussed with us. If he had denied that, we would have had no information. We could not give approvals for anything without him signing to do so.
Senator Pépin: Has it been long since that legislation came into force? I know that the age of consent varies from one province to another — for example, I know that in Quebec it is lower.
The Chairman: Lower than 16?
Senator Pépin: If you have a teenager who is sex frequently, she can ask her doctor and get contraception at the age of 14.
Ms. Grant-Parker: What is interesting is that if your child had another illness there would not even be a discussion. However, with this illness, the individual has diminished capacity to make a decision. Luckily, in our case, our son allowed us to be involved; he asked for help from the get-go.
About six months into it, when he just could not get enough help, he said to me, ``When you are sick like this, you have to do something really bad to yourself or to somebody else before anybody will help you.'' That was his experience. He just kept asking people to help him.
Senator Trenholme Counsell: I wanted to say to you, Tara, that I have worked with an awful lot of young people all through the years and I am so impressed with you. You are the Terry Fox of mental health. You really are inspiring, but you have to spare yourself, put yourself first. However, you have so much to offer to those around you and to this country and you are doing it here today.
Phyllis, you have been a wonderful mother. You are so rational about this and balanced. Thank you both very much.
Doctor, I just wanted to ask you one question, because I know that time has run out. You said that the outcome at one year is what you will get at 15 years. Are you talking only about schizophrenia and psychotic disorders, or mental illness in general?
Dr. Malla: No. I am talking specifically about schizophrenia and psychotic disorders. However, I should qualify by saying that, for whatever reason, most of the research in this area has been in the field. Schizophrenia and psychotic disorders have probably had the most extensive research, in terms of long-term outcome and in terms of early intervention.
I think for many years people believed, and still do, for that mater, that if you have a manic depressive illness you are better off. However, recent evidence suggests that while you may be better off in the short run you are not actually better off in the long run, because people drop out of treatment at a greater frequency. They feel that it may sort itself out, that it istime-limiting, but it is not.
My comments are prefaced by the fact that that is where the data comes from. It may be true about others, I do not know.
Senator Trenholme Counsell: I would like to debate that a little bit, because I see people today that I saw 10 years ago and they are incredibly better now than they were then, and that is because of better management, specifically, better pharmacology. It struck me, when I heard you say that, that this was not a message of hope, but it may be a very realistic message.
Dr. Malla: Two things I should say. One, when I make a statement like that, we are talking about large group data. So that there will be individuals who will not fall into that. These are data that come out of the international pilot study of schizophrenia that was started way back in the 1960s, and is the only study that has a long-term outcome like this.
On the other hand, it is not pessimistic, but a bit of a warning, in the sense that, on average, one or two years are lost in seeking and getting treatment and then, if the best treatment is not available in the first couple of years, a lot of deterioration takes place, neurobiological, cognitive and social deterioration, in the first three to five years.
So, what I was trying to get at is that the window may not be very large if we want to achieve the best outcome.
Senator Trenholme Counsell: With new medications, just being very frank at this point in your knowledge, would you say that whatever has become chronic by one or two years can be improved, or is the outcome less than what might have happened if the management had been better in the first year?
Dr. Malla: With new medications, at least in the field of schizophrenia and psychotic disorders, the improved outcome is actually marginal. Part of the reason for that is that medication alone is not going to do it. There are other interventions that have to be applied on top of medication even to sustain people taking medication.
For example, the biggest problem clinically, as a clinician I can tell you, is young people staying on medication.
Senator Trenholme Counsell: Oh, I know that.
Dr. Malla: The reason for that is not a simple matter of side effects or anything like that. It is a very internal process of why a 19 year old who is doing well now is likely to reject medication. If you think about it from a healthy perspective — I do not need this — there is an art to actually persuading them.
So, I would say, yes, new medications have improved outcome but the data suggest that the improvement is relatively marginal and until we support that with all of these other family intervention, skills, training, and so on, it is not going to show a huge impact.
The Chairman: May I thank all of you for attending here today. You have been very helpful to us.
Senators, we have one last panel, with two members of the Ontario courts. I was first prompted to call Judge Carruthers because of some very outspoken comments he made on this subject that I read in the newspaper. This was probably six or seven months ago. When we set up the hearings, I thought it would be ideal if we could hear from people on the judicial end, since we have been doing largely forensic evidence today.
We had a terrific presentation from several police forces across the country this morning, as well as a presentation from the Elizabeth Fry Society and others, people who deal with inmates when they leave.
Judge Carruthers suggested that we call Judge Schneider.
We are interested in the insight you can give us with respect to an issue that seems to be troubling a lot of us, that is, that as a result of deinstitutionalization throughout the mental health system prisons seem to have become the asylums of the 21st century. That is a sad comment on Canadian society, in and of itself — and that is just a view some of us have. I would like to know whether you agree and, second, if so, what can be done to reverse that trend and to stop the recidivism rate. For people with mental illness, there seems to be a swinging door in prisons. They come in as criminals, do not get treatment, are in prison for a while, leave no better off than when they came in and quite conceivably worse off, and then simply reappear. From a societal standpoint, that is obviously about as unproductive a system as one could have, and it was comments along that line that, as I say, Judge Carruthers made some time ago that prompted me to invite the two of you to appear.
May I say that I am delighted that you agreed to appear. I offered you the option of appearing in camera, but both of you were prepared to appear in public. That is terrific.
Finally, I cannot resist telling you that this is about the only group of politicians you could meet in which we do not have a single lawyer on the panel. We have two doctors. We have two teachers. We have a nurse. We have community health workers. We have an old professor like me, but we do not have a lawyer.
We will begin with you, Judge Carruthers. Please proceed.
Honourable Douglas Carruthers, Judge, as an individual: I have gained some insight into the fact that there could not have been a lawyer involved in your proceedings because the material that I read that you have prepared to date has been so insightful and so succinct, and there is no question that — I digress for just a moment. When I first went to Ottawa to deal with a matter for CRTC, there was a man appointed, Pierre Juneau, and I was immediately impressed because he told me he did not want me to conduct a hearing as if it was a court, and I tried.
I am chairman of the Ontario Review Board. There is a review board in each province and each territory, established under the Criminal Code of Canada. The boards deal only with people who have been charged with the commission of a criminal offence and who have either been found unfit to stand trial for that offence because of mental disorder or who have proceeded to trial on that charge and have been found not criminally responsible for the commission of the offence due to mental disorder.
We do not deal with the general prison population who may be suffering from mental illness. To some extent, Richard would have more exposure to them than I would as an active sitting judge. As a judge of the Supreme Court of Ontario for 20 years, we dealt with people from time to time who were found not guilty by reason of insanity, as the plea was known at that time, but, generally speaking, we were absolved fortunately, from my point of view, from dealing with what generally is the street crime that makes up so much of the criminal activity in our courts.
The threshold test in every instance is whether the individuals before us can be said with certainty to be a significant threat to the safety of the community, and if we cannot say that, then the individuals are free to go — and not having been convicted of any offence, they are left outside of the jurisdiction of the law and are free. We let about 120 people a year go free. Our recidivism rate has not been formally kept that I know of, and I should know if there is one, but Richard and I over the years have tried to consider how many people of ours who have gone out into the community either free or subject to conditions have recommitted an offence — and I think, Richard, we are still working on something less than 1 per cent.
Drs. Hucker and Webster in their recent text indicated that, for reasons they could not tell, people who have been in our system seemed to have more respect for what we tell them to do than the people who are in the parole system and subject to the parole board. I just say that to you because that is what it said in the book. Why we have such a satisfactory recidivism rate, I do not know.
I will tell you that there are a group of psychologists in Penetang who promote an instrument for measuring risk and recidivism who would probably disagree with the figure that I have given to you, but in coming to their conclusions, they count every slap on the wrist and every spit and every yell that a patient might have during the course of being treated in a hospital. We look at recidivism as being a real act of recidivism and not something that might otherwise be considered unpopular behaviour.
Dr. Malla was asked how a person could get the best treatment from the best informed, and I think that what Richard and I will tell you is that they start by committing a criminal offence. That is the unfortunate part, but our people do paradoxically get probably the best treatment available — but they have to commit a criminal offence and be found not criminally responsible or unfit due to mental disorder in order to get it.
The Chairman: I have seldom heard a one-sentence, more powerful indictment of a system than that.
Honourable Richard Schneider, Judge, as an individual: I circulated for your consideration the transcription of a presentation that was made six years ago this coming summer at Cambridge, England, at Queens' College. It was a talk put on by the Canadian Institute for Advanced Legal Studies, and the title of the talk — I was one of the participants, and I know you have not had an opportunity to read — was, ``The Criminal Code of Canada: Mental Health Act of Last Resort.''
The Chairman: Since there is no federal Mental Health Act, it is really the Mental Health Act of first resort at the present moment; is that right?
Judge Carruthers: The provinces have a Mental Health Act.
The Chairman: Yes, but the feds do not.
Judge Carruthers: No, but the Criminal Code, which is the federal statute, is the Mental Health Act of last resort.
In terms of how the rubber hits the road on a provincial or territorial level, you have got both statutes operative simultaneously, and I can tell you — a previous speaker mentioned that somebody had to do something extreme to get help. I was not entirely sure what they were alluding to, because I came in late, but it is true. As Doug was saying, unfortunately, for the most part, it is recognized that the gold card for mental health care in Canada is either a criminal information or indictment. That is how an individual gets the medical psychiatric attention he or she needs.
As a practising criminal lawyer prior to being appointed to the bench, I had dozens of cases. My practice was largely limited to representing psychiatric patients who had criminal difficulties. The family was ecstatic that their son had fortunately been picked up by the police because now they could get that assessment that they had not been able to get in the civil system, a comprehensive report. If things went really, really well, they would be found unfit to stand trial at the conclusion of the assessment and subsequent hearing, and once unfit to stand trial, the court could make a mandatory order for treatment for up to 60 days.
Again, as you may have heard, there is a process on the civil side, certainly in Ontario, and I am guessing most of the other provinces and territories for involuntary treatment, but it is a circuitous, difficult path riddled with appeal routes and it is very difficult to enforce and engage.
If a loved one is very lucky, at the conclusion of the treatment order and once they are rendered fit to stand trial, they are found not criminally responsible in respect of those matters and then they will be turned over to the Ontario or provincial territorial review board who will look after them indefinitely, ensure they are obtaining adequate housing, medical care, clothing, prescriptions, and all of the things that you talked about in terms of closing down that revolving door.
I can tell you that — I am sure you do not want me to go on length, because you want me to answer questions —
The Chairman: Please go ahead, because this is so incredible.
Judge Carruthers: I would like to add that Richard was a clinical psychologist before he was a lawyer. He has double-barrelled experience.
Judge Schneider: We have established a Mental HealthCourt in downtown Toronto. It has been operative now since May 1998, and the mandate of the court is to look after exclusively individuals who have got mental disorders as well as criminal allegations. There are two broad mandates for the court: One is to expedite pre-trial matters of getting assessed for fitness and treatment, and moving things on, and then, at the conclusion of the matter, slowing down that revolving door you talked about. What you see are people cycling back time after time through the courts, with no improvement. The reason for that, at least in Toronto, prior to the establishment of the Mental Health Court, is that people would be ejected out onto the streets of Toronto wearing an orange suit with no identification, no OHIP card, no social assistance, no place to go, no doctor's appointment and no bus fare. It is not surprising that they show up back in the courts in very short order.
One of the other key aspects of the court is to equip people that leave the criminal justice system with a basic survival kit, to reduce the probability of them returning to court. They are as much as possible plugged back into the civil system that they fell out of.
I can tell you that the numbers of mentally disordered accused are pouring through courthouse doors in Canada in unprecedented numbers, and it is largely due to a failure on the part of the civil systems across Canada to look after this population adequately. The courts have been left with this hot potato and having to sort out the problem. So, therefore, the Criminal Code of Canada Mental Health Act of last resort.
Judge Carruthers: I should like to add something to embellish what Richard has said. The Mental Health Court that we have in Toronto is really the brainchild of Richard, and I think I am safe in saying that it is the only one of its kind in the world. It was supposed to be established at two other centres in Ontario, but it has not been.
We met on August 23 in the year prior to which it was done, and we talked about it with certain people, and by May 14, the court was up and running. That must be an absolute record, and it is due all to this man here.
The Chairman: Do you want to make some more comments?
Judge Schneider: I was just going to say that what we are dealing with in the criminal justice system — we can call them alternatively forensic patients, mentally disordered accused — are that they are all, and I am using that extreme word ``all'' advisedly, largely failed civil mental health customers. The reason I say that is that when a new customer comes into our Mental Health Court, they invariably have extensive civil mental health histories or files. So, that system had them but they got away — they slipped through the net. They either evaded it or the legislation or the resources just did not pick them up, and they slipped out of the civil net and got picked up further down the stream in the forensic net, and we find them in the courthouse having attracted the attention of the constabulary, generally for relatively minor matters but often not, sometimes for pushing people off subway platforms and things like that.
So, unfortunately, the courts in the criminal justice system have been burdened with having to pick up and look after this population — and, of course, the police and the courts' lawyers and judges and jails are not the best people to be looking after this population.
Mr. Chairman, I think you are right, that our prisons are turning into the de facto psychiatric facilities of this century. There are more mentally disordered people currently housed in prisons in Canada than there are in mental health hospitals, psychiatric hospitals.
The Chairman: Can you take us through the process. If an individual commits a crime and gets arrested, at what point in the process is a decision made that the person belongs in the Mental Health Court, not in what I would call the regular court stream?
Judge Schneider: Well, they can come in at any juncture, general speaking, are recognized at first instance the morning after the arrest in bail court when they are obviously not well. They might be behaving oddly, speaking oddly, uncommunicative. There is something that attracts the attention of either the duty counsel in the courtroom or the justice of the peace or the judge in the bail court and they think that things may be somewhat not right and they are sent over to the Mental Health Court where we will screen them in open court. If we agree that there certainly is an issue, because you can still be very unwell yet fit, then we will have them seen by a psychiatrist. The court is staffed by psychiatrists five days a week and they do stand-down assessments.
Judge Carruthers: That is right there outside the door, not going to a hospital.
The Chairman: Sorry, they do it in the courtroom building?
Judge Schneider: There are offices adjoining the actual courtroom where the —
Judge Carruthers: They do not take up a bed for 15 or 20 days.
Judge Schneider: So, that is the process. They are recognized in court, regular court at first appearance, generally speaking, and then referred to 102 Court. We will do the psychiatric assessment, trial of the issue of fitness, entertain a Crown application for treatment of order if one is being brought, and look after the whole process through to the point where litigation is looming. If the accused does not want to resolve his matter at the end of that process by way of a guilty plea and they want to litigate, by that time they are fit to stand trial and are sent back to a trial court for litigation.
The Chairman: So, you send them back if, in fact, you conclude they are fit to stand trial?
Judge Schneider: That is right.
The Chairman: You began this in what year, 1997 did you say?
Judge Schneider: The court?
The Chairman: The Mental Health Court.
Judge Schneider: It was conceived in 1997 and opened in May of 1998.
The Chairman: So, you have got a seven-year history and in that period there has been a huge movement to deinstitutionalization. It began before 1997, but it has certainly been accelerated through the late 1990s and the early part of this century.
Am I correct in thinking, therefore, that the demand on the Mental Health Court has gone up almost as the institutionalization has gone down?
Judge Schneider: That is right. Deinstitutionalization carried with it a whole host of broken promises. One was that the money that was going to be saved from shutting down hospital beds would be reinvested in community mental health care, and that never really happened. The other is that some of these people that were being looked after in the old traditional psychiatric facilities could be looked after adequately in the community. I do not think the jury was completely back on that one before the decisions were made.
So, yes, as a combination of lack of resources, the particular orientation of most provincial and territorial mental health legislation, we are seeing unprecedented numbers of mentally disordered, homeless people wandering around certainly the streets of Toronto and, unfortunately, sometimes getting into trouble. If you go back 10, 15, 20 years, you just did not see this population on the streets.
The Chairman: Just one other procedural question, and then I will go to Senator Pépin. Take me through the same scenario if I am a teenager.
Judge Schneider: If you are a teenager, well, you would be in another court. If you are younger than 18, you would be in Youth Court.
The Chairman: Youth Court. Are they qualified — maybe you do not want to comment on that — but are they qualified with the same level of experience that you people have?
Judge Schneider: No. They do not have a mental health court. The main Youth Court in downtown Toronto is at 311 Jarvis Street, and I will convene my court as a Youth Court to back them up. I can do that. I have jurisdiction to declare myself a Youth Court, and if they have an acute situation in their courthouse, they can send the accused over and I will look after them on a case by case basis in our Mental Health Court.
However, practically speaking, largely for biological reasons, these same psycho-legal issues generally do not arise in that population. I do not know whether you have spoken to experts on major mental disorders, schizophrenia in particular, but it generally blooms in late teens, early 20s, which takes them out of that court. Of course, there are outliers that will manifest psychotic systems prior to the age of 18. However, generally speaking, that population are manifesting behavioural problems, conduct disorders, but things that do not really attract the psycho-legal issues we are dealing with, namely, fitness or competency to stand trial, lack of criminal responsibility. In order to be compromised to that extent, you have to, generally speaking, have full-blown psychosis.
Judge Carruthers: May I add something just by way of background? I think you must be aware that when Bill C-30 was enacted into the amendments to the Criminal Code as part XX.I of the code, which is the basis of what Richard and I do in dealing with the mentally disordered, it created a scheme that replaced a scheme that had been in effect for over 150 years, and it is a pretty good scheme. There are close to 100 sections in the Criminal Code and everything that is needed to function with the scheme is there in the Criminal Code.
The unfortunate part about it, from our point of view, is that we are charged at the end of the day in each hearing with fashioning a disposition that is the least onerous and least restrictive for the accused individual. That is where the focus is. We might determine that, for a person who is in jail who comes before us in the first instance, the least onerous and least restrictive disposition is for that person to go to a medium, secure unit in North Bay. What do we do, having said that North Bay is the least onerous and least restrictive, when we find out that North Bay has got no beds? We cannot send them back to jail because we do not have any authority to send a person to jail, but he will sit in jail and he will sit sometimes nine, ten months in jail before he gets a bed. That is one problem that you have done federally in handing over the implementation of your great scheme to the province.
The second problem that we have is a lack of knowledge about the mentally disordered. It is just rampant throughout the judiciary, excluding Richard and me, and it does not serve people well.
I am dealing with a young man now who was convicted of murder in 2002. He had committed a murder while in an institution. He had been committed to hospital in 1996. Hewas 17 at the time he committed his offence, just turned 18, and he was in the most maximum secure facility in Ontario at 18 years of age. He has been in the system then for nine years, six and a half to seven of those years in solitary confinement in a jail, and he still is. He is not getting treatment. When you talk about closing the facilities — the people who are running the facility want to get rid of him. Now, if he cannot stay in the hospital where he is, as his lawyer said, they built Penetang for people like him, where is he going to go? I am fighting hard to get him back into the hospital. Our board has made an order every year for the last nine years that he be detained in hospital and the courts have ignored us completely and put him in jail.
Senator Pépin: Your court is fantastic. Who pays for the services you are providing?
Judge Schneider: The court was originally started up with no new resources and no money, no budget. That happened as a result of work with a colleague of mine, Justice Ormston, who was actually a sitting judge. I have only been a judge for four years.
Judge Carruthers: Just a kid.
Senator Pépin: He is a kid, yeah.
Judge Schneider: I was working on the protocol for the court as a lawyer, not as a judge. What it really consisted of was, first of all, the cooperation of the chief justice and the senior regional justice, to hand us over the space, in terms of the physical plant in the courthouse — which coincidentally was perfectly suited because it had adjoining cells attached to the courtroom, so that the people were kept out of general population, and on the other side of the courtroom, offices for the psychiatrist and the court mental health workers, which I have not told you about yet.
The court is also staffed by mental health workers, who are social workers who help reconnect people that come through the court back into the system that they have become unplugged from or that was just not serving them well.
Senator Pépin: Who pays?
Judge Schneider: Sorry, I am wandering all over the place. It was just a redeployment of existing resources — through the cooperation of a number of different partners, largely the Centre for Addiction and Mental Health in Toronto, who were doing these assessments anyway but on an in-patient basis. Hence, we are taking the same personnel but having them come downtown to the courthouse, do the same work but on a stand-down basis rather than wait for the accused to be delivered and stay in their facility for the purposes of the same assessment. We had agencies who were also serving the same population as part of their mandate but again move on-site.
It was then a matter of getting the cooperation of the Ontario Legal Aid office to put in a dedicated number of lawyers that would be there on staff in the courtroom, which we did obtain, a dedicated Crown attorney. We got special training for guards, clerks. So, it sort of evolved and jelled as time went on.
Judge Carruthers: It was a lovely thing to behold, the final day that we sort of put the pieces together. There were over 70 people assembled in one of the courtrooms at the Old Courthouse in Toronto. I sat there and looked around and thought about how we had accomplished so much in that short period of time. Everyone was so eager to have this thing work. However, we cannot forget, three ministers also became involved — Corrections, AG, and Ministry of Health. The coordination was wonderful. Everyone was ready to go.
Senator Pépin: As was mentioned, there is a lack of knowledge from the Corrections people who work in those penitentiaries. As we said, when the psychiatric hospitals closed, we find more mentally disordered people in the penitentiaries. Given your experience in organizing the court, what would you tell us we can do to help those people who are inside? How can we get organized? How can those things be organized to help those people?
Judge Schneider: I guess it depends on what point along the stream you are talking about intervening. Are you talking about the people who are already there?
Senator Pépin: Yes.
Judge Schneider: I am no expert on the penitentiary system, but it would be a matter of injecting into that system better resources, better staff, better treatment possibilities, situations that are more of a quasi-hospital environment. However, the prophylactic intervention and the best spent buck is not in the jails, not in a mental health court. It is in beefing up the civil mental health system. If the civil mental health system has a tight net that holds on and adequately services the population, one would expect that there will be far fewer of them coming through the courthouse doors and from the courthouse to the review board to the penitentiary. So, ideally, the best spent money is in civil mental health care, creating a comprehensive, potent, civil mental health care system.
You have got people, as you are recognizing, who are already through the door. So, it is a question of what to do with them, looking after them while they are in. Again, the same problem that we are talking about with the Mental Health Court, in terms of discharge planning, equipping them, plugging them back in prior to discharge so that there is a safety net for them when they return to the community and so that you are not simply releasing them out onto the streets like we had been doing out of the courthouse here in their orange suit and expecting them to survive.
Senator Pépin: They told us that they do not have any services.
Judge Schneider: They have to be reconnected if there is any hope at all of them staying afloat on their own successfully in the community.
The Chairman: Judge Schneider, how many judges are there in the Mental Health Court?
Judge Schneider: There are no formal numbers. There is a handful who have got a special interest, probably four or five who rotate through the court. I am probably there 50 or 60 per cent of the time, and there is another judge that I referred to, Ted Ormston, who is in there probably 40 per cent or 50 per cent of the time.
The Chairman: The rest of your time you are hearing traditional Trial Division, Supreme Court cases; is that right?
Judge Schneider: I am in the Ontario Court of Justice, which would be our Provincial Court.
The Chairman: The old Court of Queen's Bench.
Judge Schneider: No. It would be our old Provincial Court, which is where 98 per cent of the criminal action begins and ends. Very little of it goes to Superior Court now.
Senator Callbeck: I want to ask some questions about Bill C-10 — which I am sure you are very familiar with. It is at second reading in the Senate right now. It will be going to a standing committee for examination. You may be appearing, I do not know. However, I should like to get your overall view on that because it gives the review boards a lot more powers as well as the police. I would particularly like to hear your comments about how it changes the impact statement for victims where the person that committed the crime is charged to be not responsible.
Judge Carruthers: To begin with, we had the privilege of attending before the committee and making representations. The increase in power that you talk about as far as boards are concerned relates to assessments, and it is really plugged into a major problem that existed with people who were found unfit to stand trial and were never going to be found fit to stand trial. Year in, year out, we just had to keep processing them, and it was not right.
In that bill, there is a mechanism whereby the review board can release an individual out of the system, if the individual is not a significant threat to the safety of the public and is not going to be treatable.
As far as impact statements are concerned, I think there is a meeting going on in two weeks with the Ministry of Justice in Ottawa to deal with them. I am not so sure that that really is going to affect us. We get impact statements. We get victims coming and we listen to them, and to the extent that they are relevant, we apply them. However, unfortunately, I have to say very candidly, they are very seldom relevant to the issues that we are trying to decide. Nevertheless, they are heard, and we try to marshal them through the representative of the Attorney General, who is a party to each proceeding before us, because he represents the community.
The one concern we have is that we do not think we should be going out to get the impact statements, nor do we think there should be a new impact every year. I do not know if that answers your question or supplies any information you need.
Perhaps Richard may want to add something.
Senator Callbeck: I just wondered if you had seen a copy of Bill C-10 and whether there were any powers that you felt the review board should have.
Judge Schneider: As Justice Carruthers indicated, we went to the parliamentary committee with a rather long shopping list of amendments in the code that would, from our perspective, really make the system work a lot better and reduce the amount of time that people would spend in the system.
They picked up partially on the ability of the review boards to order assessments. The provisions, if you have read them, are unnecessarily limited. I do not have a copy of C-10 in front of me, but they are limited to situations where there is no current report before the board or where one has not been prepared in the last 12 months.
In any event, what I would have recommended was that the board — since the courts rarely, upon a verdict of either unfit to stand trial or not criminally responsible, make an initial disposition and leave it to the review boards. To leave the review board in a position where it does not have, in the spirit of Winko, the full ability to order assessments is really inconsistent with the reasoning of the Supreme Court.
Just to put this into perspective, it was obviously written by someone who did not understand how the system worked. There is often a report available that has been produced within the last 12 months. The question is whether it is directed to the issues that we have to decide as a review board. I am saying ``we'' now because I am also an alternative chairman of the Ontario Review Board and the Nunavut Review Board. The reports that would have been prepared and attached to the information or indictment would have gone to the issue of fitness to stand trial or criminal responsibility. They would not have gone to the issue of least onerous, least restrictive disposition, which is what the board has to decide.
Particularly with respect to the unfits, the fact that somebody had been seen and an opinion offered with respect to fitness over the last 12 months is really next to irrelevant because fitness is something that fluctuates as a function of the individual's clinical condition; it can change day-to-day, hour-to-hour. So, to limit the board's ability to order assessments in the way that it has been done in C-10 I think is unnecessarily restrictive. I would have simply altered the wording in 672.11 and put in beside ``court,'' ``or review board''. It would have been the simplest way around it.
The biggest one that was missed in C-10 though, quite apart from the ability to make assessment orders, was the ability of the board to treat accused who come through the system as unfit. Now, we do this quite aggressively in the Mental Health Court because we have got practitioners who are very familiar with the legislation and comfortable in applying it, but if you go outside of this little area here, you will find that treatment orders are generally not made by the court, which means that the accused goes to the provincial or territorial review board as unfit and stays within the jurisdiction of the provincial or territorial review board until they are fit. When the board does not have the ability to order treatment, the same way that the court would have under 672.58, that means that the province or territory where the accused is housed has to rely on whatever the local civil legislation is in order to get them treated. This means that you are going to have somebody unfit staying in the system three, four, five times as long as they would have had the board had just been able to order that they be treated for a period of up to 60 days the same way the courts can under .58. If the board — which you will remember is made up of a panel of experts — had the same powers as the courts under .58, you would see the unfit people staying in the system for much shorter periods of time. We strongly advocated for that and it just did not receive a mention.
The other major flaw, and I do not think it was addressed in Bill C-10, was altering the definition of ``unfit to stand trial'' to include the window up to and including the end of sentencing. I think it remains untouched as going to the end of the verdict, which leaves a legal lacuna if the accused happens to post-verdict get unfit prior to being sentenced.
There is a decision by the name of Balliram from Ontario Superior Court, a decision of Justice McWatt, who actually reads in an expanded interpretation of section 2 dealing with ``unfit to stand trial''. We were hoping that Parliament would pick up on that in C-10 but they did not.
Judge Carruthers: From a practical point of view, many times a person has decompensated after verdict, pending, say, a dangerous offender application. You are in irons because the person is not qualified or capable of being sentenced, but he has been convicted, and it is crazy to not extend the definition as Richard says from ``verdict'' to include ``sentence,'' and then the whole thing is covered.
Senator Keon: I am a doctor, and I have to admit that I do not understand this process very well. However, I do congratulate you for what you are attempting to do.
Moving back a step, it seems to me it is a terrible problem for somebody who is mentally ill, especially if they are young, to get involved in the criminal justice system. It is almost an end-of-life situation if they get convicted. As you know, they cannot get into any of the professions in university. Their job opportunities are so incredibly limited and so forth that their life is practically ruined. For a young person to get caught in that is such a disaster.
Judge Carruthers: Can I just stop you for a moment there?
Senator Keon: Yes.
Judge Carruthers: You may be right in certain respects, but I should like to draw something to your attention. You all probably remember a young man who shot and killed a broadcaster in Ottawa.
The Chairman: Brian Smith was the broadcaster's name.
Judge Carruthers: The young man's name was Jeffrey Arenburg. He is still within our system. For five years, he went between Nova Scotia and Ontario pleading for someone to do something for him. He felt that the media were governing his thoughts and broadcasting his thoughts to his friends, and he was suffering as a result. He was turned down. He never got any treatment. The courts let him go. Hospitals let him go. He thought that if he could get before a judge he could explain what was going on and that everything would be fine. So, he packed up his rifle and drove to the CJOH-TV parking lot in Ottawa, and waited for someone to come out. Brian Smith, who Arenburg did not know, came out of the building and Arenburg fired two shots, one that went right through his forehead. Brian Smith died.
I use this example. Jeffrey Arenburg is now working and living in the community, because he has been treated. They have done a fantastic job with him. Within three months, he recognized he was wrong, which he did not do before.
So, to answer your concern, we have a lot of people like that who are going back into the community. He wanted to go home to Nova Scotia with his family. The Attorney General here agreed, the psychiatric commission in Nova Scotia agreed, our review board said he should go to Nova Scotia, but the Attorney General of Nova Scotia said not in my backyard, and that was the end of him.
Senator Keon: I appreciate that.
Judge Carruthers: He is now living outside of Toronto. He is not the only example, but I give you him as an example.
Senator Keon: However, you have to admit that if you were that young man's father and mother, you would not consider this a great success story. He killed a good friend of mine, and he is back in the community and I wish him well, but surely it is obvious that the system failed miserably all along the way.
Judge Carruthers: That is what Richard has just finished telling you, the civil system failed him. If he had not been failed by the civil system, he would not have become our customer.
Senator Keon: Right. I deeply appreciate what Justice Schneider is doing and what you are doing, sir, and I commend you highly. Nonetheless, I have tremendous concerns about the number of young people that are getting into the criminal justice system that, from my perspective and perception, should not be there. They should have been treated. I guess you were saying the same thing. They should have been treated for their mental illness upfront; they should not get saddled with a double whammy.
Judge Schneider: I quite agree. It is an appalling failure on the part of our society to let things go so far that they do not get treated until they are charged with a criminal offence. I could not agree with you more.
I think what Justice Carruthers is saying is that after those failures have taken place though — which, as you are pointing out, is not certainly a good thing — a lot of these people were, nevertheless, able to turn around. However, quite rightly, they should have been caught much further upstream. They should never have come through our courthouse door. They should have been captured by the civil mental health care net and kept in that system. We are a very blunt, clumsy instrument, courts. We can be brutally effective because we can make orders that people have to comply with, but it just should not get this far.
The ideal world would be one where we could close down the Mental Health Court tomorrow because we are out of business because the civil system is looking after these people the way it should. It used to be anomalous for mentally disordered people to come through the courthouse system, if you go back 15, 20, 25 years ago, but now they are coming through in unprecedented numbers.
Senator Keon: I will repeat, I want to highly commend what you are doing. I have the greatest admiration for it, but where I would like to see our committee get to is stopping — and particularly the young — these people from getting into the criminal justice system. It is true, older people can go back into the community, and they can do fairly well. We had one of them here yesterday and he seemed quite satisfied that he is able to fit in the community, but in the case of a young person, there are so many doors closed to them that it must be the basis for tremendous depression in itself.
Judge Schneider: Right. In that regard, if I could just respond, one of the efforts that is being considered now — and we are trying to get funding from provincial and federal levels to put it in place here in the GTA — is a scheme that does not have a formal label yet but one that I call pre-arrest diversion. In other words, when the police respond to a 911 call or come across an incident on the street, they have a greater array of options.
As it stands now, when an officer arrives on scene, he can either split the parties up and send them away, arrest or apprehend the party or parties under the Mental Health Act and take them to a Schedule 1 psychiatric emergency, or lay that crummy little charge under the Criminal Code.
The ideal situation is to take the individual to the hospital and exploit the medical route. We have disincentivized — I think that is a word — the police in that regard.
Here is what happens. The officers arrive on scene or they respond to a 911 call. They pick up Johnny, who is out of control, and take him to psychiatric emergency. They wait around — and it will take two officers out of a car, one on either side of the potentially accused person. The officers wait in emergency until the psychiatric resident comes in. Generally, the resident takes a five minute look at the person, determine that he or she does not satisfy the criteria of the Mental Health Act, and the person is let go. This is after the police have invested, not exaggerating, a number of hours going through that process.
Judge Carruthers: As Richard has said, in the past, they beat the police officers to the donut shop.
Judge Schneider: Hence, now when the police they arrive on scene, it is not a matter of ignorance, not appreciating their options, it is just that they do not have the time for this.
What we have to do is create a system that will get the police more committed to exercising discretion under the Mental Health Act, or a variation of the Mental Health Act we now have. In that regard, we have to create a facility for the police to drop off an individual, who the police realize has psychiatric issues, after he or she has been apprehended. Once the individual has been dropped off, ownership, if you will, of the customer is assumed immediately, not with the issuance of some process but assumed immediately, and there is an obligation. The facility of course would have to be open 24-7. There would be an obligation, say, within a window of 24 hours, to clear the person out, whether that means getting the person back to hospital, taking him or her to detox, getting them to a hospital, whatever the options might be. This facility would be charged with looking after the individuals, to reincent the police to exercise those options, because every time they do that, there is one less guy in my Mental Health Court the next morning and one less guy who, as you put it, has got a new set of criminal charges to deal with, all of which has a tremendous stigma attached to it and can have lifelong repercussions.
So, we have to work our way further and further upstream, identify these problem people, and make sure the civil mental health system kicks in and works for them immediately. That is what we are not having right now. It is not happening.
Senator Keon: We are committed, I know our chairman and all of us are committed, to try to do something about this. The police were here this morning and they are committed too, I am sure, and I know you are committed. The problem seems to be that the cracks are too big and nobody quite knows how to close the gaps.
Judge Carruthers: It is not high on the list of priorities for anybody to do anything about — and I mean, with respect to the people who can do something effectively about it, it is way down the list.
Judge Schneider: There are cracks, you are right. It requires a seamless web around the GTA, with seamless information transfer, and it requires some money. I can guarantee you that, at the end of the day, the net effect to the system as a whole, and talking provincially here, would be a savings because it costs a tremendous amount more to process the same problematic individual by pumping them through the courthouse door and looking after them that way than it would to look after them in a properly funded and resourced mental health system. It is far more expensive using the courts.
Senator Keon: I thank you both very much. I would ask of both of you — you are people of tremendous influence — every time you get an opportunity to make that point, to make it, and maybe in concert with us we can accomplish something.
Senator Trenholme Counsell: My impression, from the reading I have done and from listening, is that in the end we are going to have to rely on the interest, the dedication and the goodwill of the provincial governments.
Saskatchewan was highlighted in this report as perhaps being the best example at this point in time of what has been accomplished with community treatment orders; is that correct?
Judge Schneider: This was written in 1999, just about the time we were contemplating similar legislation in Ontario, either just before our legislation or just after it. As it turns out, the community treatment order sounded great but really is not picking up much of the slack. Theoretically, it sounded like an instrument that would have great potential and keep people out of hospital beds, but it just does not come through the way we all thought it would.
Judge Carruthers: It is not an order to begin with. It is a consensual document and people, are not consenting. You cannot order people to go to the hospital. I was asked how it affects the operation of our board, and I said we have forgotten all about them, we never hear about them — that is how useful they have been.
I do not think, Richard, you have seen very much.
Judge Schneider: No.
Senator Trenholme Counsell: Am I correct in saying that, in the end, it rests with the provinces? Our committee will do its best to bring all this to the fore, through our report, but it becomes a provincial responsibility; correct?
Judge Schneider: There are things you can do to make the criminal justice system work better — for example, the tweaks we talked about in C-10. However, if you want to keep people out of the criminal justice system, the provinces and the territories have to beef up their civil mental health care. Whether that is something that the federal government would support by way of helping with the financing, I do not know. However, it is certainly, yes, a matter of provincial legislation, that is for sure.
Judge Carruthers: We were $28,000 short when we put that court together, to ensure that we had enough social workers, and the Ministry of Health said, ``No, we are not paying any more.'' I think it was $28,000 more that we needed. What happened was the rest of the ministries were so embarrassed that they threw the money into the pot, but the Ministry of Health still has not paid for it. We were charged $34,000, our own board, to create a system.
Judge Schneider: We put 2,000 to 3,000 people through the court a year.
Senator Trenholme Counsell: You refer to the trial of Andrew Goldstein, and the judge's comments in that trial. I will read them: ``I have no doubt that some day, probably after we are all gone, people will look back at our treatment of mental illness under the law and be shocked and appalled.''
Judge Carruthers: That is a New York judge.
The Chairman: Why do you think the Mental Health Court experiment has not been copied elsewhere in Canada?
Judge Schneider: There are a couple of reasons. First of all, to redeploy the resource that we have in downtown Toronto, you do need the economies of scale, a critical mass in one spot to justify it. In other words, you need certain volume in order to defend putting a psychiatrist into court every day of the week.
The Chairman: That volume would exist I presume in Winnipeg, in Vancouver, in Montreal and probably in Calgary.
Judge Schneider: I went out to Alberta — they were talking about a pilot project in either Calgary or Edmonton — about four or five years ago, but I have not heard that one has ever lifted off the ground.
I know they are talking about an experiment in Vancouver. They are talking as we speak about one in Ottawa. There is one in New Brunswick. You have to be careful, if researchers are taking a look at the literature, because there are a number of different paradigms that all share the same name ``mental health court.'' If you get into the literature and you start looking south of the border, you will see that there hundreds of them down there, but they are a completely different model with a completely different mandate. They are all based on the American drug court system, and what those courts are doing is really providing an alternative to what would otherwise be conventional sentencing. They are voluntary. They presuppose the two basic psycho-legal issues that we are looking at, namely, fitness to stand trial and criminal responsibility. Both of those have to be assumed if you are going to contemplate a guilty plea. So, it is a completely different thing. The one in New Brunswick is based more on the American model. It is not at all what we are doing here.
So, to answer your question, yes, in the major urban centres in Canada there would be a population sufficient to justify a court like this.
The Chairman: What was the biggest hurdle you had to get over? That will tell those of us who have been bureaucrats where the resistance lies? What was the biggest single hurdle you had?
Judge Schneider: Getting all the ministries and silos to cooperate. First of all, there is a general resistance to change anyway, whether it is going to be good or bad. There is tremendous inertia in a system and you can point out a million reasons why another scheme might be better, but it will be resisted just because it is change.
The other factor is that if we have got 10 people around a table, a couple of their budgets may go up, but four or five may go down. So, it is a question of getting the people whose budgets are going to go up to agree to a system where the net effect will be a saving. So, in order to make something like this work — because in Ontario at least every dollar spent in the province comes through a ministry budget, other than the ombudsman's office. Hence, you need somebody with omni-ministerial ability to rob people's back pockets and spend money where they are convinced that, even though his budget is going up and that one is going down, the net effect will be a saving. If you have somebody with that sort of power, you can make something like this work.
The Chairman: In your case, I presume the chief justice was instrumental in this. His support was critical.
Judge Schneider: That is right. His support was critical. As I said, when we did start up, although specific budgets have been allocated since the court started and has expanded. When we started, all we needed was $28,000.
Judge Carruthers: We really made a silk purse out of a sow's ear in creating that court, and I think what helped a great deal was that the three ministers involved could see an awful lot of political benefit from something that was not going to cost a lot of money. When they saw that, they jumped on board and helped us a great deal. Up until then, however, we were relying on people who did not really have the ability to pull the trigger.
The Chairman: Hence, it really took huge political will to get it done.
Senator Pépin: We know that in other countries visible minorities are living with very serious mental health problems. We know that in some places a member of a minority group will face six times more chance of being detained under the Mental Health Act.
Since Ontario is a province where there is a large number of visible minorities, are you facing a similar situation? Do you feel that it is a situation that has repeated itself here or not?
Judge Carruthers: I am not aware that we have an inordinate amount of minorities that you are speaking about in our system. Both Richard and I are involved in the Nunavut Review Board as well, so we are up there quite often. If you want to see tragedy in life, go there. It is a bad scene. We are dealing with people with fetal alcohol syndrome and that sort of thing up there. Naturally, all our people up there are minorities, with the exception of very few.
However, in Ontario, I am not aware that we are having an inordinate number of First Nations or visible minority people in our system.
Judge Schneider: I am not aware of the data. I am sure it exists. Certainly, with respect to the First Nations, they are overrepresented in the criminal justice system in general.
However, in terms of specifically the Mental Health Court, the court that I have got the most familiarity with or the review board, I do not see that visible minorities are being overrepresented there curiously at all. However, again, I have to confess, I do not have any data to back that up.
Senator Pépin: In Ontario, one person out of four belongs to a visible minority group. I was wondering if you see them.
Judge Carruthers: Certainly not in that proportion.
The Chairman: May I thank both of you for attending here. It has been very helpful to us.
Judge Carruthers: Our privilege.
The Chairman: Senators, we now move to the part of the agenda where we have walk-ons. I would ask each of you to identify yourself as you begin. You will be given two minutes to make a presentation. I do have to watch the time tonight because we are running late.
Mr. Lionel Berger, as an individual: I am a family member, a retired lawyer and vice-chair of a mental health organization. My son was first hospitalized six years ago following a manic episode.
I have a few quick comments. First, I think it is overstating the case to think of the failed civil system. The reason the criminal law system, I am going to say, sometimes is the impetus is to appreciate that a person's readiness to accept treatment may often be triggered by a crisis and not influenced by persuasion.
On the subject of stigma, I can tell you that the advice I received at the time of the first hospitalization and after was, ``Do not tell people, except on a need-to-know basis.'' I am now a speaker at different events, and I can tell you that the mental health professionals I speak to would agree that was terrible advice. The advice should be that it is a tricky question as to who you tell. However, the suggestion of not telling people except on a need-to-know basis and loose lips sink ships — that type of advice just serves to reinforce in the parents' minds the stigma associated with mental health.
One might question the community mental health notion. You need the courage to disclose mental health issues to those you think you should, and we need the courage as a society to come forward and say it is a community mental health setting.
One of the things I learned in the recovery series that I recently attended after five and a half years was the importance of accepting the individual with the mental health issue as an individual, not as someone who needs to take their medication — that is a very narrow focus. The broader focus is important — accepting the person as an individual has a lot of ramifications.
I hear all sorts of comments. The angst of parents and mental health professionals is understandable. You look for solutions, the same way Job wanted to suffer without getting answers, just having people to sit with him and listen. I would caution you about naive or overstating cases because you want solutions. Sometimes there are not simple solutions to complex problems. As I said, sometimes it is a crisis that influences the motivation of someone to accept treatment.
Mr. Don Weitz, as an individual: How much time do I have, senator?
The Chairman: Two minutes.
Mr. Weitz: You have a copy of my brief of my submission titled ``A wakeup call on electroshock.''
The Chairman: Yes, we do. It has been distributed.
Mr. Weitz: I will have to get to the recommendations, because no one told me how much time I had.
I am asking the committee to recommend a national ban on the use of electroshock, otherwise called electroconvulsive therapy, by psychiatrists. The reason is that this so-called treatment has caused a virtual epidemic of brain damage, including permanent memory loss, which last been thoroughly and responsibly documented for many years, almost since electroshock began in Canada in the 1940s. This is a so-called treatment for depression. It does not cure anything. It terrorizes. It traumatizes. There have been at least 411 recorded deaths in the English-language literature from the so-called safe, effective and life-saving treatment. Hence, I am asking the committee to at least recommend that, or a moratorium pending further research — which, by the way, the board of health recommended for the province of Ontario in 1984 when we gave testimony, but, unfortunately, the Toronto Board of Health has no power.
My second recommendation is that there be a mandatory reporting law or regulation regarding electroconvulsive therapy or electroshock. At the moment, there is none in any province or nationally. Hence, it is discretionary. Hospitals do not have to report to a central data bank every time they give shock, nor do they have to report the medical complications from this at least so-called controversial procedure.
My final recommendation is that you are invited to public hearings on psychiatric drugs on April 2 and 3 in Toronto's City Hall and the following week on April 9 and 10 on electroshock. During these hearings, we have a first- rate professional panel, which will act at facilitators, not speakers. The only people that will be allowed to speak and give personal testimony will be those who are currently on psychiatric drugs or have prescribed them or those who have experienced electric shock.
I wish I had more time.
The Chairman: We will read the rest of your belief — we will.
Mr. Weitz: You have a copy of the flyer, right, announcing it?
The Chairman: Yes, we do. Thank you.
Ms. Lembi Buchanan, as an individual: Good afternoon. I am going to try to be as brief as possible; I have a copy of my written notes for distribution.
Individuals with mental illnesses not only face discrimination in the workplace, but they have a great difficulty accessing income security programs when they are no longer able to work. I am talking about federal disability tax credit, Canada pension disability and also long-term disability from private insurers. I have had to fight for every benefit my husband, Jim, has been entitled to. It is taken more than 10 years. We are going to have to start all over again next year, but you can read about that.
We were forced into court by the Canada Revenue Agency to secure the federal disability tax credit. His case was heard both in the Tax Court and also in the Federal Court of Appeal because CRA decided to have a judicial review. The decision in the Tax Court was upheld.
We had to fight for the long-term disability insurance — and that was another long battle as well, fighting Prudential.
However, I do want to say that we could never have anticipated that fighting government was actually going to be tougher than fighting a private insurer.
Jim is a very intelligent, creative and resourceful individual. He also suffers from bipolar disorder, which was first diagnosed in 1973 after he was discovered on top of St. Patrick's Cathedral in New York City, where we lived at the time, waiting for a helicopter to take him to God. Thanks to a new wonder drug, lithium carbonate, which is nothing more than a common salt, Jim eventually recovered. However, Jim lost his job with the New York Telephone —
The Chairman: Instead of giving us the long history, can you get to what you are recommending?
Ms. Buchanan: I just want to say that he lost his job with New York Telephone. In fact, every time he has had a major manic episode, which has been in New York, Los Angeles and Toronto, he has lost his job because of a fundamental lack of understanding of the mental illness and a lack of interest of employers trying to integrate these individuals with a serious mental illness back into the workforce.
I will go right to my recommendations. We need to recognize that persons with mental illnesses are amongst the most vulnerable members of our society and ensure that they are treated fairly, justly and with respect and dignity. Very few of them have advocates. We need to recognize that there is a fundamental lack of understanding in our society of the disabling impacts of psychiatric disorders and promote improved education within government — and you have heard that over and over again — as well as private industry, to ensure that these persons are not discriminated against because of misinterpretation of legislation or using inappropriate guidelines to determine eligibility.
As well, we need to recognize that most persons with serious mental illnesses are unable to advocate on their own behalf, to protest an injustice, and appoint an ombudsman to assist them to access income security programs. I have only been talking about federal ones, except for the LTD that they are entitled to.
One final thing. Both my husband and I are alive today because of the extraordinary medical services we have been able to access in this province since 1990. I have been diagnosed with terminal cancer. He has obviously a chronic illness and is subject to relapses, but I do not think that we could live anywhere in the world — we have lived in the U.S. — where we would have a publicly funded medical care service that would take care of us the way we have.
I agree with Dr. Malla who said that, for all the problems we have, and they are legion, we are still very thankful for what we have.
Ms. Sandra Schwartz, as an individual: My name is Sandra Schwartz and I am a consumer survivor. My big issue with mental health is that there are a lot of people with dual diagnosis, which is what I have — that is, mental health issues and a learning disability.
All across Toronto, I have been frustrated, because I had a lot of problems with first being diagnosed. I was not diagnosed until later, and I had problems in my placement and in my working situation. I have gone through all kinds of different programs, and I had to go from one program to another program because one program did not understand the LD, and another program did. I went to a program for LD, and then they turned me away because of my problem that developed around an emotional breakout problem that I had with my mental illness.
I am in another program at Progress Place, but the thing is, it is just fortunate there is somebody there who does have a bit of an understanding about learning disabilities, but it is mainly for mental illness. There should be employment support and social skills support, whatever, something specially designed for people with this dual diagnosis.
There is help for developmental problems and help for mental illness, but nothing together. The only thing good — I went through a period of homelessness — and the only thing good about having a mental illness with a learning disability was that I was able to get welfare and disability because of mental illness, not because of learning disability. They would turn me away from that.
The Chairman: Sandy, thank you for that, because we have heard comments elsewhere in the country about the dual diagnosis problem.
Ms. Julie Haubrich, as an individual: I am a community development worker, presently working for a non-profit supportive housing organization here in the City of Toronto. For the last five years, I have been working for them. I have spent about 13 years working in community development in the City of Toronto, working with homeless men and women, many with mental health issues.
I have learned a lot through that experience, from the stories people have told me and from the struggles I have seen people endure. One of the first things I know I have learned is that if you start with the label — the person has been labelled with the illness — you get nowhere. In order for change to happen, you need to address the whole person. You need to be motivated by hope, hope that there is something in your future. You have to look for the whole person, their strengths, and their strengths need to be recognized and valued.
I would like to take you on a short little journey with me. I would like you to consider what it would be like for yourself, and maybe some of you are in this situation, to be labelled with a mental illness and also possibly consider what it would feel like to suffer either from depression or from some of the symptoms that people with the different illnesses endure. Next, I would like you to think about what it would be like if some of your family members could not cope with you, were not there, could not do the journey with you as you were struggling with your illness, struggling with your symptoms, and sort of watch them drift away.
Then I would like you to consider what your world would be like if you lost your job, because of that illness. Consider what it would be like if you could not keep your work because the stresses were too much or your employer did not understand you, and you lost your income. Finally, without income, where do you live? Consider what it would be like if tonight you had no place to go, you did not have a credit card, your cabin does not exist, you cannot go there. Your car might have been long gone.
I just want people to know that these are often the stories I hear from folks who suffer from a mental illness. Sometimes, their journey starts when they are young, and they never get into the workforce. They never lose a job because they never got one to begin with; others times, they cannot re-enter workforce.
I know that federal jurisdiction does not cover housing, but I think it should. We have a country where people need to be housed. From my work perspective, when people get the opportunity to get back on their feet with housing, with work opportunities, where they are valued — even Mickey Mouse jobs are good, but you need more opportunities.
I hope your jurisdiction will go beyond.
The Chairman: We will not stay stuck with just the federal jurisdiction.
Ms. Haubrich: I think all those things have to be considered, the whole person.
Ms. Morra Stewart, as an individual: My name is Morra Stewart and I am a consumer survivor. I just want to say that I am really behind putting money behind community centres. It is not an option. Either you are in the hospital, in a bed, with doctors and nurses, or you are nowhere. The money that was — as you said, there was deinstitutionalization. Well, all that money should really go into the community, because most psychiatric patients would rather live in the community anyway.
That is my big point.
The Chairman: Thank you very much.
Mr. Weitz: Excuse me. I forgot to identify myself.
The Chairman: No, I got your name.
Mr. Weitz: Well, for the record, my name is Don Weitz. It is very important that psychiatric survivors be recognized and identified accurately. I am a shock survivor as well.
The Chairman: May I thank all of you for attending here today. It has been very informative.
The committee adjourned.