Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 15 - Evidence
OTTAWA, Wednesday, May 14, 2003
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 3:30 p.m. to study on issues arising from, and developments since, the tabling of its final report on the state of the health care system in Canada in October 2002. In particular, the committee shall be authorized to examine issues concerning mental health and mental illness.
Senator Marjory LeBreton (Deputy Chairman) in the Chair.
[English]
The Deputy Chairman: Senator Kirby, our chairman, is travelling throughout Western Canada. He has made four or five speeches this week — I read a few of them — on our health care study. He is being well received, and the speeches are being well received. It is nice to see that our committee's work is still the predominant health care study that people are paying attention to across the country.
We are continuing our study on mental health and mental illness. We will be talking about as the ``S'' word, the stigma. Our witnesses today are Patrick Storey from the Minister's Advisory Council on Mental Health in British Columbia; Heather Stuart, from Queen's University, and Jennifer Chambers from the Centre for Addiction and Mental Health.
Mr. Storey, please begin.
Mr. Patrick Storey, Chair, Minister's Advisory Council on Mental Health, Province of British Columbia: I am the Chair of the Minister's Advisory Council for Mental Health in British Columbia. I think we came to your attention by virtue of the fact that a number of years ago we produced a report on discrimination against people with mental illness and their families.
I will talk a bit about the situation we have in British Columbia and make some comments that came from a public forum we organized around the issue of discrimination against people with mental illness. The information we received at that forum came directly from people with mental illness and their family members.
The members of the Minister's Advisory Council are appointed by the Minister of State for Mental Health. That position is unique in Canada at present. Our Minister of State for Mental Health in British Columbia has a unique political role in that he speaks directly for people with mental illness and their family members, as well as for people involved in providing care for people with mental illness and their family members. He represents those interests at the cabinet table for the provincial government.
One big advantage of that is that the Minister of State has direct access to other ministers who are responsible for services that are important to people with mental illness — ministries that are outside the health portfolio and ministers responsible for income support programs and housing, et cetera. We feel those services are absolutely essential to supporting people with mental illness as equal members of our community.
The council is composed of 15 members. The consumer, the family and caregiver groups are represented equally on the council. The role of the council is to provide the Minister of State for Mental Health with advice with respect to the implementation of the mental health reform plan that was developed over the last decade and on the general provision of mental health services in the province. In addition, the council supports the minister in his efforts to reach the specific goals assigned to his office, chief among which is a public information campaign on mental health and mental illness for the province.
The public forum on discrimination occurred in 1999. The council, during its initial meetings, quickly identified the issue of discrimination as among the most important concerns of people with mental illness, and their family members. To better understand this issue in a British Columbia context, a community forum was organized to facilitate the discussion of the experience of discrimination and its impacts on the lives of people with mental illness, and their family members. The Vancouver-Richmond Health Authority cooperated with us in this venture. Approximately 200 people attended, most of whom were consumers of mental health services and their family members. We had keynote speakers, one of whom was Lenny Gagnon, an advocate for people with mental illnesses and a woman living with mental illness herself, who spoke eloquently about her personal experience with discrimination, and Dulcie McCallum, the former ombudsman of British Columbia and the author of a report entitled, ``Listening.'' That report was done on Riverview Hospital, which is our provincial psychiatric hospital. She spoke of the root causes of discrimination against people with mental illness and how this has led to neglect of mental health services generally in the health care system.
We had many small group discussions among these people. We had a panel that spoke more specifically about what could be done about discrimination in the province. Lots of ideas and lots of food for thought came out of that panel, and we continued in small group discussions. The small group discussions eventually focused on recommendations or things that could be done to reduce discrimination in the province as a whole.
We hired a woman to attend this session, research the literature and write a report, and she did a thorough job. We were looking for a report of 10 to 15 pages in length. She produced a 70-page report. We have not put that lengthy report on the net, but we can give you a copy, if you wish. It is a detailed and good report.
A large number of recommendations came out of the public forum and, in consultation with the council, I have identified four points that I would like to bring to your attention today. The first of these is that we need to recognize discrimination against people with mental illness and their family members as just as unacceptable as other forms of discrimination. We need to devote the same energy to its elimination that we devote to the elimination of other forms of discrimination.
Dr. Stuart and I have a slight disagreement on this point. We have discovered that anyone who uses the word ``stigma,'' the ``s'' word, as you have already identified, has to put a quarter into the pot. We feel that ``discrimination'' is really the most appropriate word to describe what happens. Inequality results from discrimination, and that is the situation faced by people with mental illness and their family members. We feel that ``discrimination'' is a more potent word, and we need to look at a discrimination model as opposed to a stigma model.
The second point I want to make is that we need to reduce the discrimination endemic to our health care system. In the discussions we had with people with mental illness, it was remarkable that they all had stories to tell of mistreatment in emergency rooms, as well as hospitals generally. Even when they were presenting complaints of a physical nature, they were treated as mental patients.
I am also the parent of a son who has struggled with depression and suicide. He has had a couple of psychiatric hospitalizations. He spent four hours in handcuffs at our local emergency ward following a suicidal gesture. I was not entirely happy with that experience.
Recent research in British Columbia has found that people with mental illness who have had one hospitalization have a mortality rate seven times greater than that of the general population. Dr. Elliott Goldner, an associate of Dr. Stuart, completed that research. I got that figure directly from him.
Recently, the Province of British Columbia conducted a review of disability benefit payments, and the B.C. division of the Canadian Mental Health Association was given a contract to assist people with mental illness to go through that process. One of the startling things they found was that 40 per cent of people with mental illness who were on disability benefits were not linked in any way to a family physician. That is quite remarkable.
To deal with these issues, we need to develop a health care system that is understanding of and responsive to the needs of mental illness. They are different than people with other health issues.
Education is required to assist health care professionals to learn to work more effectively with people with mental illness. We need to establish clear national standards for mental health care and educate people with mental illness and their family members about what they can reasonably expect when accessing mental health services.
I brought a copy of a charter of patient rights from Northern Ireland. In British Columbia, we devoted time and energy to developing a charter for people with mental illness. The Northern Ireland model is a particularly good one, and I would encourage you to take a look at it. The document clearly and simply outlines the rights a person with mental illness has in relation to the health care system and the service and treatment they can expect as a consumer of these services. We believe that if we educate and empower people with mental illness as consumers of health care services, it will make them more effective consumers and help health care providers provide services that are more relevant.
The third point I want to make is that we need to protect mental health service funding and spend money on services that are effective and relevant. In British Columbia, mental health dollars are no longer protected. Generally, they are lumped in with health care dollars, the effect of which has been that even though a lot of additional money has been directed toward mental health services in B.C., much of it is not being spent on mental health services.
We have a system of health authorities in the province right now. In my position as Chair of the Minister's Advisory Council, I have people phoning me. I call them whistle-blowers. They report abuses of those dollars, knowing I can discuss this with Minister Cheema. It is interesting that the dollars most abused are those devoted to community services as opposed to dollars for beds, capital dollars.
As one example, it was reported to me that the Provincial Health Services Authority spent $1 million on renovating their administration offices. That money came from the Riverview Hospital budget. I think that is an example of discrimination — mental health dollars going to the renovation of administrative offices.
A number of policy changes are required in addition to protecting the actual dollars for mental health. Medical billing schedules and procedures, extended health benefits, pension plans, et cetera, do not recognize the special features and challenges of mental illness and create unnecessary obstacles to recovery and health. For example, in British Columbia, a family doctor can bill for only four counselling sessions per patient per year; yet, most people with depression go to see their family doctor. Though antidepressant medication is a helpful adjunct, alone it is not sufficient to help people deal effectively with that sometimes debilitating condition. Doctors are not in a position to provide the help required for a person in a depression.
Changing some of these fundamental policies and procedures is essential to reducing discrimination. We need to support the development of mental health delivery systems that are holistic in nature, recovery-oriented and based on best practices. This model not only includes appropriate pharmacological and psychiatric care but also prioritizes the importance of stable, secure and adequate housing and income, rehabilitation services, personal support in the development of relationships and meaningful roles within the community through employment and educational opportunities.
When I was Chair of the Board of Trustees for Riverview Hospital, there was a lot in the media about the waiting list to get into the hospital. Much was made of the inconvenience of general hospital patients who had to put up with difficult behaviour on the part of psychiatric patients who were kept in the halls or placed on other wards. No one wanted to listen to my complaints about the lack of community resources preventing people from being discharged home from Riverview Hospital. The problem was not the waiting list to get into the hospital; it was the waiting list to get out. The absence of adequate community resources in the various neighbourhoods and communities kept people in the hospital longer than they needed to be. That has a powerful discriminating effect.
Finally, I am also a member of the National Parole Board. It is extremely disconcerting for me to sit across the table from a man or woman who is in federal prison at least partly as the result of mental illness and be unable to make a decision that supports their reintegration into the community.
I brought with me another article entitled, ``The Prison Careers of Offenders with Mental Disorders,'' and it discusses some of the discriminatory aspects of that system. We know that a large number of people with mental illness at some point in time have a prison experience. Prison research shows that people with mental illness are more likely than other inmates to serve a greater portion of their sentence at higher levels of security, are less likely to get parole and are more likely to be returned to prison for a violation of release conditions without reoffending than peers who do not have a mental illness. For federal offenders, it is difficult to access provincially funded mental health services in the community due to specific provisions of the Mental Health Act of British Columbia. This act is, in itself, discriminatory to this population. It directs that directors of provincial facilities not provide care to people coming from federal institutions. That is a federal government funding responsibility, and so people who are in federal prison with mental illness trying to get a release into the community will not get service from the local mental health centre or from other services, which is intolerable.
Research also shows that people with mental illness admitted to the provincial correctional system are often unable to access the services they need to deal with their mental illness adequately. Federal and provincial correctional authorities and health authorities must work together to address these deficiencies and reduce the discrimination faced by people in conflict with the law.
In conclusion, the reduction of discrimination is an essential aspect of improving the quality of life for people with mental illness and family members and is necessary for truly meaningful change to occur within the health care system in this country. We are encouraged that this committee is looking in detail into this issue and, more generally, into the delivery of mental health services in this country. In the view of the council, the investigation is well warranted, and we hope that we can provide you with any assistance in the future that you may require of us.
Ms. Heather Stuart, Associate Professor, Community Health and Epidemiology, Queen's University: My background is as a social epidemiologist. I am interested in mental health research and I do much research in what I have learned today is now called the ``s word.'' I do stigma research with funding from the Ontario government. I have also worked extensively with the World Psychiatric Association to implement anti-stigma programs. Canada was one of the first countries in which this was done globally. I thought I might contribute a small overview of the research to provide you with some sense of what is possible in the realm of anti-stigma interventions.
I will begin by telling you how I understand the word ``stigma'' because, as you have heard, there are different interpretations. I am drawing much of this from the social psychological literature and the real essence of stigma is that people notice somebody is different — they are different from you. Not only are they different but also that difference is in some way devalued. It is considered to be a negative difference. People who are stigmatized are somehow spoiled in that their identity is spoiled. They are seen as social inferiors.
Early research looked at the people who are stigmatized to see what made them different. Then we focused on the people who were stigmatizing to see what made them do it. Neither of those two branches of research was helpful to public health people who wanted to implement anti-stigma interventions. It did not guide us very much.
We are hoping that a third generation of research may focus on the kinds of social structure that you heard my colleague discussing already, which really perpetuate social inequity and discrimination — the structures and organizations, the policies and the programs that make this happen. It is difficult to change attitudes but you can change policies much more easily.
In the context of mental illness, consumers will describe stigma as worse than having a mental illness. It is perceived to be a second dimension of suffering, almost a second level of disease that they have to cope with that is more debilitating and disabling than the mental illness they suffer. You can well imagine some of the consequences of stigma. You are denied social standing and rights and social entitlements. You are actively discriminated against. We have to focus on the discrimination.
What is more insidious than discrimination is the social inequity that comes from collective neglect. Discrimination implies that we actively do something to someone but often in the realm of mental illnesses, we ignore the issue. We all ignore the issue and as a result of that collective neglect, people who have mental illness do not have the same social standing or opportunities that the rest of us have.
This is a major obstacle to their recovery. The fear of being stigmatized can delay them seeking treatment. People with a mental illness do not want to be labelled and so they do not approach health care professionals. They think that going to a health care professional will impede their access to social standing. We have done surveys in Ontario that showed one-quarter of the consumers that we surveyed had indicated that they had been stigmatized by a health professional in the past; and 50 per cent of them had delayed seeking treatment for a mental health condition when they knew they needed treatment because they were afraid of being stigmatized.
We are in a community mental health model right now and so stigma and discrimination are the crux of the issue for us. They are our major barriers to the treatment of mental illness in our modern day. We expect, when we put people into the community, that the community will want them and nurture them. This is not happening.
Public awareness is more myth than reality. The public tend to focus heavily on unpredictability and dangerousness. It is difficult not to do that when each time you turn on the TV, you see reports or movies sensationalizing the violence of the mentally ill. We think about mental illness in terms of violence, unpredictability and dangerousness. We have other misconceptions. We think that people with mental illness have low IQs, that they cannot hold a job or that they cannot be treated successfully in the community. These things are not true. Yet, when the public is surveyed, this is precisely what we find that they believe.
When we talked to the public through community surveys about their knowledge of mental illness, such as schizophrenia, we find that they are well informed. When you ask people what causes schizophrenia, they will tell you that it is a brain disorder or they can identify a biological basis. Twenty or thirty years ago, we would not have expected that. They are well informed and literate, and yet, they stigmatize and discriminate. We are not sure now, as researches, how much we should focus on improving knowledge about mental illness as an anti-stigma reduction strategy. Perhaps it is inherently useful that people know more about mental illness but we are not sure that it makes a difference in terms of the way they treat people with mental health problems. However, we do know, from the public survey, that they rate the loss of mind as one of the most disabling conditions that they could imagine — more than losing a limb or any other thing.
If we are to deal with stigma and discrimination, we have to get a handle on this issue of dangerousness. It is probably the biggest myth that we have to fight. We know that the public links dangerousness to mental illness and in a sophisticated way. They can discriminate between types of diagnostic categories and rank them. They rank people with substance abuse as very high in terms of dangerous. People have high expectations that substance abusers will be dangerous. People with schizophrenia are ranked somewhere in the middle and people with depression are ranked a little lower. While they generally overestimate the risk, they rank them carefully according to what the research would rank them. In general, it is much overestimated.
From the literature gathered at careful reviews of the link between violence and mental illness, we can say to the public that mental illness is neither a necessary nor sufficient cause of violence. I am not sure how heartening that will be, though. I think we can say that the major determinants of violence are not mental illness but things such as poverty, age and gender. Young males of lower socio-economic status are high risk.
We can also say that it is far more likely that someone with a mental illness will be a victim of crime rather than a perpetrator of crime. Often people are in the criminal justice system because of mentally disordered behaviours that have no treatment options in the community.
We can also link substance abuse to violence. It arises consistently in the literature as a main problem. I am not referring to schizophrenias or depressions but to substance abuse alone or in combination with any kind of disorder. When we consider primary prevention — ways of reducing this vision that the public has of the crazed killer — substance abuse would be an area where we would want to spend time to think about how we could reduce that.
With respect to anti-stigma interventions, how do we stop stigma and discrimination? We are learning from the World Psychiatric Association work that one size does not fit all. It is a waste of time and energy to embark on a large, public education campaign that is designed to improve literacy as an anti-stigma intervention because segments of the population have different views. They understand their risks differently depending on the diagnostic group. We are now talking about more focused and targeted interventions. We have had the best success in all of the things that we have tried by going into high schools and working with young people because they are more malleable. We have learned that we need to take approaches that will bring people into contact with those who have a mental illness, in constructive ways.
Best practices and anti-stigma programming are emerging. We do not have enough knowledge to make good decisions. We are still learning. We have global programs and a number of countries have embarked on large-scale efforts to reduce stigma and discrimination. They are collecting data and embedding evaluation and research in these efforts so that we are able to learn from our mistakes as we go along.
Based on this, we can say that knowledge about mental illness does not predict behaviours. If you want to change behaviour, adding to knowledge does not necessarily do it. We have to work at a policy level and we have to get at the way people act towards one another.
We also have to think about the fact that we really do not know much in the world yet. Canada is a leader and we do not know much in Canada about how to change attitudes on a large-scale basis. We have tried to do it with exercise, smoking and diet, with all kinds of different things, and we have had variable success.
This is something we are trying to do now that has been historically entrenched in every culture we can identify. It is long standing. The fear of people with mental illness will not be easily removed from our culture. I do not think we have enough of a knowledge base yet. One of the other things we need to think about is how to improve our knowledge base as we go through this process, as we try to make a difference, to make sure we are collecting enough information as we go systematically to be able to say, five years down the road, what worked, what did not and why.
Ms. Jennifer Chambers, Empowerment Council Coordinator, Centre for Addiction and Mental Health: I am here on behalf of the Empowerment Council, which is a group consisting entirely of people with who have been in the psychiatric system, known as psychiatric consumer survivors, and people who have been through addiction services. We are located at the Centre for Addiction and Mental Health in Toronto.
This paper, which I believe honourable senators have a copy, looks beyond the effect of the general public's prejudice toward our community, to also consider the discrimination that allows for the exclusion of our community's voice both within the mental health system and in public policy.
The term ``stigma'' is a downgraded standard of human rights when applied to people who have been in the mental health system. Prejudice is something that can be addressed through human rights commissions. Discrimination is something for which people can seek legal remedy. There is nothing one can do about stigma when that happens.
One pervasive discrimination experienced by consumer survivors is that, unlike any other group enumerated under the Charter, it is considered acceptable to have consultations, make decisions, draft policy, run organizations with little to no involvement of the people in the community on whose behalf all these activities ostensibly exist to serve.
Discussions about women or people with physical disabilities or people of colour do not take place with large numbers of people talking about these communities, while members of the group themselves are almost completely excluded from decision making and discussion. This is not raised to blame anyone but to point out that the attitudes held by most of Canadian society allow this behaviour to go unquestioned because the false beliefs about our community are so widespread.
Prejudice toward our community is deeply ingrained in this culture. These attitudes, in effect, are primarily rooted in ignorance, and lack of information. Even more dangerous to consumer survivors is when misinformation is presented by mental health professionals and it is pervasive in the mental health system.
Biases and conflicts of interest that exist in the system often go unrecognized. The American National Council on Disability observed that policy making based on input from experts, and that excludes participation from people labelled with psychiatric disabilities themselves, results in wasteful and ineffective one-size-fits-all public policy that does not efficiently meet the needs of those it is intended to serve.
There are a number of myths and stereotypes that endanger people with a psychiatric label. One is well described as the attribution of dangerousness. I will not go into all the evidence on that, as you just heard a good bit of it. Despite the availability of the information on dangerousness not being an issue for people who have been in the psychiatric system, lobby groups and governments often promote public fears to justify more restrictive and invasive treatment of people with psychiatric histories.
We have been through this experience in Ontario where a piece of mental health legislation that has nothing to do with dangerousness is named after a mentally disturbed man who killed someone, implying that anyone subject to the legislation is dangerous and violent. This exaggeration of dangerousness has the worst effect on people in the forensic system, where despite evidence that people in the forensic system are less likely to offend than similar offenders who are not considered mentally disturbed, are often held far longer in the system.
One difficulty of shifting the discussion of the association between people in the mental health system and violence is the circular reasoning that happens. If a particularly violent crime is committed people say, ``Oh, that person is sick, psycho, weird,'' so there is no way to get outside the debate, even if they were not considered to have any particular mental or emotional disturbance before committing the act.
We need a national educational campaign actually delivered by people who these prejudices are directed at because the medium is also the message. That is one of the limitations to many of the educational programs that have happened so far, which is primarily based on professionals delivering the information.
Another stereotype that affects the community is the belief that people are incapable. This is true both in the general sense, in working situations for example, and also in treatment situations in the psychiatric system.
There was a study that found that most people who are considered to have serious mental illness have abilities to make treatment decisions similar to people in other parts of the health care system. Nonetheless, some provinces associate involuntary admission to a hospital as being the same as being incapable of making decisions about treatment.
Most often, when people are judged as incapable of treatment in those provinces that separate the two, this tends to follow the person, indicating that they do not want to follow the course of treatment proposed by the doctor. If capacity is considered to be equivalent to compliance, this makes the whole concept of consent a meaningless one.
Another myth that harms psychiatric consumer survivors is that coercion is required for our own good, and that coercion results in good things for individuals. Some coercive practices in psychiatric facilities would be considered criminal if they were applied to people who were not first dehumanized by the label of psychiatric patients. Simply for raising your voice you can be manhandled by several men; in some facilities stripped, tied to a bed, and unwillingly injected with powerful drugs. A confession to feeling suicidal can be responded to by locking a person in a small room with nothing to look at or do, cut off from all companionship, forced to relieve oneself in a pail or on the floor. Knocking on the door repeatedly to get staff attention for a toilet trip will result in being in restraints for being unruly.
In the mental health system itself, it is common knowledge that these practices occur, and yet it is extremely difficult for people in the system to get these abuses addressed because people are not considered to be credible relative to the people operating the services in the system.
Defining people as their psychiatric diagnosis is another thing that feeds into the stigma against people in the mental health system. Psychiatric diagnoses are not overwhelmingly reliable in the scientific sense; yet they are completely relied on to define what people need in the mental health system. It would be far more empowering for people if they were able to choose from a selection of services rather than have a selection of services presented to them based on diagnosis.
Some diagnoses are more pejorative than others, psychopath and schizophrenic being two. I cannot go into details about that, however. They carry with them a number of mistaken assumptions, with a number of harmful results.
The excessive reliance on medical explanations for why people are in the psychiatric system is another way that the consumer survivor voice is excluded in the mental health system itself. We happen to live in an era when people who are different or are having difficulties of a mental or emotional nature are called ``ill.'' This is something that started with good intentions. In comparing people who are in the mental health system to people who are in the physical health care system, I believe the intention was originally to say that people are no more to blame for their difficulties than people in the physical health care system are. Nonetheless it has been over-applied, to the extent that the stories, difficulties and explanations for the needs of the people who are in the mental health care system are often overlooked. One stunning example of this is that although a lot of research shows the majority of people in the psychiatric system are survivors of abuse, this almost never gets addressed directly while people are in the mental health care system. Even worse is attempting to get help for abuse that can happen in the psychiatric system, which research shows also happens frequently.
The reality is that we are complex. There are many and varied explanations for how we came to be how we are today — life experience, economics, biology — the cause-and-effect circle between the mind and the brain has yet to be defined. The invalidation of the consumer survivor perspective by imposing one model on all people's stories has to end.
The overselling of pharmaceutical solutions to people is a result of this problem. No matter what problem and source of pain that people state, almost 100 per cent of people in the mental health system today are offered, or often forced, to take psychiatric medications.
This often happens without the prescribing physician properly following requirements for informed consent so that even people who find they benefit from medications and would choose to take them are upset by the fact they have not been properly warned of the risks that are involved. This is even worse for people who did not choose to take medications voluntarily.
The risks of psychiatric medications are extreme. They can often result in permanent alterations to the brain even when taken for short periods of time. People feel that they have the right to be properly informed.
One of the worst things that happens is that people die while in the mental health care system. Other problems include discrimination and lack of attention to physical health care needs. That was mentioned earlier. As well, the denial of the negative effects of psychiatric medications has resulted in people dying.
We have begged for inquests into the deaths of people who died of symptoms common to the drugs that they were taking. The Coroner's Office of Ontario has held no inquest into these deaths. We are left with the impression that our lives matter little compared to professional reputations.
Currently, politically and financially powerful forces oppose any consumer survivor change to the existing mental health system. However, the system must change. People who have lived in the psychiatric system in Canada need your help to find a way to do that.
We have recommendations. I will touch on a few. One is that there be a national education program. A campaign directed and delivered by survivors, should be launched to challenge the devastating prejudice and discrimination that exists in our community.
We did have an Ontario-wide education program that was delivered by consumer survivors. It was very popular and made an impression on people because they were hearing from the people about whom they held false beliefs. Unfortunately, that program has run out of funding at this point.
Psychiatric consumer survivors also need a national legal advocacy organization to address violations of rights under and outside the law. This organization must be accountable to consumer survivors. It needs to be federally funded to eliminate the conflict of interest provinces might perceive in supporting a mental health advocacy organization to minimize disparity in attention to mental health systems and the consumer survivor voice across provinces and territories. Such funding would avoid needless duplication of effort and bring some level of scrutiny to Canada-wide mental health legislation. Such an organization can also serve as a clearinghouse for information needed by advocates across the country.
Each psychiatric facility needs independent advocacy. It needs to be accountable to consumer survivors. Organizations and services that exist to assist consumer survivors need to be accountable to the people they exist to serve.
Consumer-survivor initiatives and the alternative to the traditional mental health service have proven to be extremely effective both in terms of the person preferring them to other mental health services. They are also cost effective. They have been proven to substantially reduce days in hospital with the effect of saving what on a national level would be millions of dollars. Should this not be better funded on a national basis?
Legislation and public policy affecting consumer survivors should not be drafted without significant participation and consultation with the people who would be affected by it.
Standards for hate crimes should be equally applied to crimes against persons considered to have a mental disability. Income assistance needs to reach rates that allow people to live healthy lives and participate in society. Resources in the mental health system should be allocated through a process that is accountable to the consumer survivors on an individual and systemic basis.
Real choices need to exist in the mental health service. There is abundant research evidence of services and approaches that are more effective, more wanted and more economical than most of those that exist today.
A national research council consisting of academics and consumer survivors needs to be formed to examine best practices outside the current system box. Finally, we encourage you to adopt the excerpt at the end of the paper that you have on patient-oriented health care system.
I want to conclude by mentioning that we understand that you may be holding hearings in Toronto. Our organization offers to organize a consumer survivor consultation for you to speak to representatives of various consumer survivor groups.
Senator Fairbairn: It is wonderful for you to be here and very sad and disturbing to listen to your presentations, which is why we are holding these hearings. When we did the general hearing this issue seemed to be moving through it like a thread to the point that it was necessary to include such presentations.
Mr. Storey, you were speaking about the frustration of patients in a hospital or facility on the waiting list to get out. This is from a British Columbia perspective. It caused me to check with our Ottawa expert, our deputy chair, to determine if I were correct in my understanding of the situation.
My husband worked at the Royal Ottawa Hospital here for a number of years. There is great frustration with the laws that virtually prevent the hospital from retaining patients whom they feel need some continuing treatment if the patient chooses not to have it. Patients are then out in the community. The community is no longer in a position to provide proper care, if it ever did adequately care for these people. It causes enormous frustration, danger and hopelessness if a person cannot keep up with their medication on their own. At the same time, there are not sufficient facilities to ensure proper care becomes available.
Do any of you have a comment on that situation in Canada?
Ms. Chambers: There are an increasing number of services in Ontario that have developed a coercive nature to ensure that people who leave hospitals are compliant with medications. We think that this is a problematic approach because there are many services that people leaving psychiatric hospitals would love to access but simply are not in ample supply.
One example is the Gerstein Crisis Centre in Toronto, a non-medical model crisis centre. It is a nice house where people can go, which does not trigger a whole legal process.
There are incredibly long line-ups of people trying to use such facilities. People cannot access them. Why not exhaust all the services that people are trying to access before forcing services on people that they do not want?
Senator Fairbairn: It is disturbing to hear you talk about how the stigma reaches into an already difficult area, which is the criminal justice system. Could you comment about the state of services, as you would know them when a patient has committed a crime? That person would experience a regulated period of time with great care. The person then may be in a position for part-time release, although not full release.
In your experience, to what degree is society prepared to accept that judgment in terms of returning? It is difficult for a healthy person in the criminal justice system to re-enter the community when their sentence is up. What are your thoughts on that in terms of the mental health system?
Ms. Chambers: My experience is primarily with people in the forensic system — people who have been found not criminally responsible by reason of mental disorder and are unfit to stand trial. Mr. Storey may be able to better address that in terms of people coming from the corrections system. People coming from the forensic system encounter more discrimination than anyone else in the psychiatric system. The label ``criminally insane'' could not be more negative. This label blankets people in the system no matter what they did. People have been in the system for stealing a bicycle or for telling someone that they would die on a certain day and not necessarily for threatening to hurt someone or for committing a violent act. They may be held for 10 to 15 times longer than if they had pled guilty to the crime. Then, when attempting to reintroduce them into the community, there is incredible community resistance. There are no halfway houses for people coming out of the forensic system. No neighbourhood will accept them. It makes it a difficult transition.
There is a medium security facility at the Centre for Addiction and Mental Health that faced a tremendous community backlash against the idea of having such a facility in the neighbourhood for persons transitioning into the community, even though there were no incidents.
For that population of people in particular, there needs to be a special educational effort made. People in the mental health system believe that everyone in that system is violent and dangerous. As I mentioned earlier, evidence shows that people with mental illness who have committed violent crimes are less likely to become recidivists than people in the corrections system without psychiatric labels attached.
The Deputy Chairman: Do you want to comment on that, Mr. Storey?
Mr. Storey: There are several things that I can comment on. People who find themselves in the forensic psychiatric population are duly discriminated against, certainly. A number of years ago, British Columbia built a modern state-of- the-art psychiatric facility for people with mental illness and in conflict with the law. It had the right look; it was well designed from maximum security right down to minimum security, where people could live in a more home-like setting and could access the community.
The community surrounding that facility insisted, despite the fact that all these buildings were perfectly secure in and of themselves without an external fence, that a fence be built around the facility, which was quite remarkable.
For this secure building, a couple of mouse clicks would change the whole institution from minimum to maximum security on the computer. It was impressive, if such things impress you. Despite those internal precautions, the community insisted that a chain-link fence be put around the facility. It was an interesting display of those community values.
It does not just apply to people in conflict with the law. When I was Chair of the Riverview Hospital Board, the community had purchased a home that would accommodate six people from Riverview Hospital. I attended a public meeting that was designed to discuss that. The outrage and the fear displayed by the people were remarkable. People were panicked. They were afraid their children would be sexually abused. This home was for six women, the youngest of whom was 50 years old. When we told them that, it did not change the reaction. You could see some rapid eye blinks in the audience and it seemed to moderate some people's views. However, there were still the table-pounders. These women would contribute significantly to the community once they found a place. Yet there was an incredible protest against the home.
The Deputy Chairman: It was the not-in-my-backyard syndrome.
Mr. Storey: Exactly.
Senator Fairbairn: I have one final quick observation, if I may. Life has taken me into spending a great deal of time with our physically disabled athletes — our para-Olympic athletes. That has drawn me, on many occasions, into events involving the Special Olympics. I can only speak from my own experience and I have never been a hostile person but I, like most people, need more education and the opportunity to mingle. Never could I think of a movement that is more conducive to making people understand and feel good, enormously proud and excited about what is achieved through sports than these young and older athletes alike. It seems to be able to cross over a line and engage those on the other side of the line to forget about the line.
In your work, if you want to experience great fun and meet an enthusiastic and inspiring group of people, you might want to hone in on this element in our sports world. It is a vigorous arena all across the country.
Senator Callbeck: I want to ask a question about the level of discrimination in the stigma that is attached to mental illness. Is it increasing or decreasing? I read somewhere that the stigma, in some ways, has intensified over the past four years. Could we know your thoughts on that? Certainly, there is more public awareness, we have a better understanding of mental illness and there is better treatment available.
In your estimation, has it increased or decreased?
Ms. Stuart: We have two sources of evidence that you could draw on to address that question. One is a Canadian study that began in the 1950s in a small town in Saskatchewan. We are quite famous worldwide for this particular effort. A husband and wife team went into a small town with the idea that they were going to educate people about stigma and try to change their attitudes. The book they subsequently wrote is called, ``Closed Ranks.'' They called it that because there was a horrible backlash and the townsfolk basically ran them out of town. They did not want to have anything to do with the researchers.
Twenty-five years later, another team went in and studied the same town using the same scales. They found virtually the same kinds of attitudes because very little changed over a 25-year period for the 12 or 13 different things they had measured. The change that they did see was in the right direction. We have some good evidence from Germany that shows that every time that there is an incident involving someone with a mental illness or attributable to someone with a mental illness, there is a terrible community backlash. The attitudes become negative and they never return to the beginning level.
You are seeing now the CNN effect. You can turn on the news and you can see incidents from anywhere in the world in your living room. They are not even sensationalized any more; they are simply videotaped and aired. You can watch them for yourself.
Knowing the response from the German study, you are probably correct. I think it has had an impact on public attitudes in the last little while because of the vividness of these incidents and the kinds things that have been happening.
Ms. Chambers: It depends a little bit on your definitions of ``prejudice and discrimination.'' Information was referred to earlier about many people accepting the idea that schizophrenia is biologically based. Some people find that good information to have.
Other people are clearer in their problem being rooted in life experience. The exclusion from the debate of their story seems prejudicial to them because it affects everything that happens.
In recent time, the Ontario government adopted the American model of naming mental legislation after a victim of a crime by someone with a mental disorder. This is horrifically prejudicial to anybody in Ontario who has ever had a psychiatric label.
Senator Callbeck: I want to clear up something in my mind. Both of you talked about what to do to get rid of discrimination.
Ms. Chambers, I understood you to say that we need a national campaign. Professor Stuart, I understood you to say that that is not what we need. One size does not fit all.
Ms. Chambers: The national campaigns to date have not been delivered by people who are the subject of prejudice. In our two years of doing this in Ontario we found that actually meeting the people subject to the prejudice made a big difference. That is what has been missing and is needed.
Ms. Stuart: We need national leadership and a national program. I would make the distinction that a campaign is a one-shot flash in the pan, very visible razzle-dazzle approach, not a sustained approach to antistigma.
We have 27 countries involved in our program. We need national leadership. We need coordination, but we need to target the interventions to address the specific misconceptions of the populations with whom we are dealing.
Police have certain ideas about the mentally ill. They need certain kinds of interventions. They are important because they deal with these people on an ongoing basis.
Emergency room staff are also a problem. You must approach them in a different way. A family member needs another type of intervention.
The interventions must be a coordinated effort. A one-shot drugs-kill kind of federal government approach that we use would not be an appropriate response in this case. I do not mean to imply that we do not need a national, coordinated effort.
Senator Callbeck: Mr. Storey, you are the chair of the Minister's Advisory Council on Mental Health in British Columbia. I notice that the priorities for 2001-02 included public education and workforce training to reduce discrimination. What types of initiatives did you introduce?
Mr. Storey: That is a good question. I had a task assigned by the Minister of State as one of the four goals that he was directed by cabinet to pursue. He has come to the conclusion that a larger provincial public-education strategy is not the best way to proceed. He believes that a more targeted approach, as Dr. Stuart has described, is the best approach.
Therefore, that initiative has essentially been shelved. I am not sure of its status. The council was not directly involved in that.
I know that the B.C. division of the Canadian Mental Health Association is very much involved in workplaces to increase awareness on behalf of people with mental illness in the workplace so that appropriate accommodations are made when required, and that prejudice and discrimination is reduced in the workplace. The CMHA is very much involved in that. They would be a good source of information, particularly in the area of workplace education.
The Deputy Chairman: Is British Columbia the only province, to your knowledge, that has a minister of state for mental health?
Mr. Storey: As far as I know, yes. It is unique. I can give an example of where that has been effective.
The government recently decided to do a review of disability benefits for people with all types of disabilities. You can imagine the consternation that caused among people who are dependent on disability money and live in an area with a high cost of living. That could have significant meaning to the quality of their life.
We reacted to this plan by providing advice to Minister Cheema to discourage Minister Cole, who is responsible for disability plans, from undertaking this. We felt that there could be less intrusive ways of re-establishing people's eligibility for this level of benefit.
Thanks to Minister's Cheema's intervention with Minister Cole, there were 5000 people identified with a mental illness on Disability 2, which is the higher level of payment, who did not have to go through that process.
Even during that six-week period of doubt and insecurity, there were several suicides among people with mental illness related to that process. It caused stress, consternation and fear.
It has been good to have a minister of state.
The Deputy Chairman: We should look at that as a model.
Senator Roche: Professor Stuart, I want to talk about the question of attitudes, which you addressed earlier. I believe that you said knowledge is not enough to change people's attitudes. I concur with that. You talked later about targeting knowledge — giving certain kinds of information for certain kinds of people.
In our society, are we blocked from making progress in providing the right kind of medical, social and educational assistance for the mentally ill? Are we blocked in general terms by a perverse attitude by society as a whole? Are we afraid of a mentally ill person? Do we think that they will hurt us?
You should tell me whether that is true. If it is true, do we need general information, irrespective of the particularities for certain types of situations?
When you change the attitude of society toward an issue, many things can happen. Smoking, drinking and driving are examples. I work in the peace field. We are trying to change people's attitude to the question of peace.
Would you take me a little more deeply into the question of the societal attitude toward such a subject. Here it is mental illness. How do we really change society's attitude and move it onto a positive, active track?
Ms. Stuart: Epidemiologists think in terms of populations. One of the hardest lessons that I ever learned when I got involved with the World Psychiatric Association campaign was that there is no such thing as a general population. There is no such thing as the society. Society is composed of different groups, each of which holds a different viewpoint and have different experiences.
Therefore, you have to think about first of segmenting your audience, as would a marketer, and figure out what it is about this particular kind of audience that is getting in their way? Why can they not deal with this properly?
Much of the time we spent was to figure out what the police and health care workers think. Why are health care workers so stigmatizing? They are among the most knowledgeable people on mental illness that we have in our society. They are invariably identified as the people who are the worst offenders.
It is not simply an issue of knowledge. When we talked about targeting things, we were trying to target experiences. We figured out we had to get them at an emotional level. We had to make them aware that their whole system of beliefs was somehow ill-founded. One of the best ways to do that was to construct situations in which people who have a mental illness could meet people who have perhaps never met someone with a mental illness, under controlled and constructive kinds of situations. They would talk about their mental illness. They would convey factual information, but more important, they would convey information at a human level. That is what made the difference. Not only did it make the difference to the people receiving the message, it made a difference to the people delivering the message. They felt much better. They felt they had somehow participated in a constructive process, and their self-esteem increased.
I do not think we can do it in a broad brushstroke. We cannot look at society as a whole and say we will take one thing and fix it. It is a complex problem. We need to target and understand groups and understand their barriers and their issues. Then we have to figure out a way to bring them into contact with people in a constructive situation so that emotional experience somehow overrides all these other preconceptions they have. We also hope they do not turn on the news the next day and see something splattered on the front page where someone with a mental illness is purported to have committed a crime. We tend to be swimming upstream when we try to do something like this.
That is not a straightforward answer to your question, but we have not found a way to do what you are asking just yet.
Senator Roche: I find your answer helpful. Perhaps your colleagues might like to offer a comment.
Ms. Chambers: Another thing that needs to change on a structural level for attitudes to improve is that as long as the mental health system is a scary place, as long as people can be abused there with little recourse, that attaches itself to the whole prejudice towards people with a psychiatric diagnosis. It is a scary thing. If you behave in too strange a way, they will come and take you away and put you in that scary place. If services were more accountable to the people they served, more open, more kind, and a better part of the flow of society, people would think, ``If I ever had a horrible time, it is good to know there is someplace kind I can go to get support.'' The vision that you would have to be in really bad shape to go to one of those places is the general public's attitude towards the psychiatric system, with some reason. That is the part of the structural change that needs to take place to change attitudes.
Senator Roche: All of you are in favour of a national coordinated strategy that would target specific kinds of information and perhaps programs. I am always reluctant to go near the thorny Canadian question of federal- provincial relations, but where is the primary responsibility for implementing such a nationally coordinated strategy that would have different targets? Where would that primary responsibility lie?
Ms. Stuart: Currently there is no place for it. It does not exist. The structures that used to be in place at the federal government that were interested in mental health have been disbanded. Most provinces do not have a provincial focus at the provincial level to deal with mental health issues. British Columbia is an admirable exception to that rule. You will have to create some structures. It is everyone's responsibility. It cannot be handed off to one group. It is too big a problem. Different levels of government can intervene in different areas. At the federal level, there can be health promotion, promoting healthy public policy. At the provincial level, it might be at the level of direct health care delivery and ensuring that programs and policies and their social services and health sectors are not discriminatory. That could be something a provincial government could do. It could happen at the municipal level to make sure the bylaws did not zone out housing so that people with mental illness could have places to live that are not so far out of town.
Senator Roche: We will need something to drive the thing. I hope our report might act as an instrument to tell the federal government that some sort of driving, national strategy is needed.
Ms. Chambers: I would like to emphasize that hand-in-glove with the idea of educating people, it is important to have a national mental health legal advocacy resource that is accountable to consumers. It is not just prejudice in the general community, but particularly prejudice and discrimination in the mental health system itself — it is allowed under the law — that needs addressing. It is critical to have both those pieces involved.
Senator Roche: Finally, I have a question again about stigma. Mr. Storey began by trying to get us off the word ``stigma'', but I notice he did not succeed completely with Professor Stuart. You can imagine where I am, because I do not know the difference between stigma and discrimination. Could you tell me again why ``discrimination'' is a better word than ``stigma''? I started to get that maybe the use of the word ``stigma'' is itself a discriminatory act. Is that too much? Why is ``discrimination'' a better word than ``stigma''?
Mr. Storey: I had not thought of that issue before our public forum. It was interesting that so many people who live with a mental illness talked about that. They did not like the word ``stigma,'' the noun, whereas ``discrimination'' is the verb, the action, as Dr. Stuart has said.
We have to be more focused on the actions that hurt people or disadvantage people with mental illness as opposed to what most people feel is this impotent word, this word that describes a sociocultural phenomenon, albeit unfortunate. It does not seem to have the potency that the word ``discrimination'' does.
People felt that we were at a radical point where they wanted to get the lawyers involved. They wanted to start suing, getting class action suits going, because it seemed to them that the progress that other groups had made had been made in this way, by focusing on discrimination and the inequalities that were resulting in their lives. There was considerable anger and impatience at this point among the people we spoke to. In their minds, they felt that ``stigma'' was a less potent word than ``discrimination.''
Ms. Stuart: I like thinking in the broader sense, because I know that people who have negative attitudes may not necessarily act directly on them. I think of discrimination as an act of commission. You have a negative attitude, and you deliberately have done something to impede someone else.
More insidious is that you may neglect to do something just by virtue of the fact that you think something is not important. You may have a negative attitude or put something on the back burner. I like to think there is as much or more damage done by those acts of omission, at every level of policy or government. We can focus on overt discrimination, and there are certainly huge issues there, but I would like to see it go farther than that. I would like to see the acts of omission addressed as well. If we could get at the stigma and the attitudes that underlie both of those things, we might be in a better position. I recognize that that is difficult to do. Sometimes the actions are easier to address.
Senator Roche: You would like us to use the word ``stigma.''
Ms. Stuart: I do not have a preference. Stigma is the attitude, and the action is discrimination.
The Deputy Chairman: Are you not both right? Stigma is the problem, and the discrimination is the action of the problem.
Senator Cordy: When we were working on our health report, we discovered that there was a great vacuum in the resources for mental health. In fact, we thought it was so severe that it needed a separate study on its own. Personally, I was not prepared for the heart-wrenching testimony that we were going to be hearing from the witnesses. A number of us have said that after testimony we are exhausted, because it is people crying out for help and asking us to please do something. Hopefully, our report on mental health will be the starting point of something good happening.
I would like to get back to the issue of the Minister of State because I did not realize there was a Minister of State in British Columbia responsible for mental health. Does this designated role help to focus a more positive attitude on the plight of those who are mentally ill? Does it result in the coming together of the various departments? We heard testimony of the Department of Health not necessarily working with the Department of Community Services, not necessarily working with other government departments, let alone other government NGOs within the community.
Could fill me in on that? I am grasping at some starting point we could have as a committee to recommend.
Mr. Storey: I could be on dangerous ground in discussing this in too much detail. I have mixed feelings. Before you get too congratulatory toward the province of British Columbia — it is a great position with a lot of potential and Minister Cheema has been a great Minister of State for Mental Health. He has boundless energy and has worked hard to understand the issues in the province. He works hard to promote the interests of people with mental illness. However, he is a minister of state, not a full minister. Beyond the budget he has for his office, he has no budget. He has two staff — essentially, one person who arranges his schedule and one who helps with his research.
Although he has access to the other ministers, and has used his influence as best he can, there are other agendas being served in our province. The regionalization of health authorities has significantly limited his influence as well.
Because of his charisma and the strength of his personality, he does have some influence on the chief executive officers and the board chairs of the various health authorities. However, he has no statutory influence or any significant direct influence as Minister of State over decisions that they may make in the regions about mental health dollars.
Therefore, it has been good that we have had a Minister of State for Mental Health, but there have been significant limitations in terms of the way that office has been created and the way in which it is allowed to operate in the British Columbia context.
Senator Cordy: He is swimming against the tide.
I am also wondering about community resources. We have gotten away from years gone by when someone who was mentally ill was put in a hospital and left there forever. Fortunately, they are now able to come out into the community. However, we have heard testimony from others who have appeared before us that community resources are really lacking. People who are discharged from the hospitals, unless they have family support, are often thrown to the wolves. How do we convince departments of health or governments that community services, for those who are mentally ill particularly, are as important as the services that are provided to them within the hospital setting?
New Brunswick has used the term, ``hospitals without walls.'' In fact, the community services should be the hospitals without walls. It is certainly better than waiting — I think Ms. Chambers used the term ``the bad state'' — waiting until a person gets in a bad state and has to be readmitted to a hospital. If we can service people who are suffering from a mental illness within the community, it is a win-win for everyone, in my opinion. How do we convince governments of that?
Ms. Chambers: There is a problem with a lack of community resources, such as housing, for example. It is often a confusion of cause and effect as far as that goes. People assume that the primary cause of homelessness is deinstitutionalization, with the implied suggestion that people who are homeless should be in institutions. Anyone who has really studied the issue will tell you that lack of affordable housing is the primary cause of homelessness, and that no mental health service will assist anyone until they are able to get adequate housing. Mental disturbance is commonly caused by being homeless more than the other way around.
It is not just more resources that the community services need; it is the way the money is spent. What the consumer survivor community in Ontario has been saying is that the money is not being properly spent. Huge amounts of money are going into coercive services like assertive community treatment teams that may visit people on a daily basis to ensure medication compliance. These resources are not well supported by research evidence and they are not popular amongst the people who receive them. There are not enough other services that people want to use, which have long waiting lists. If the money were directed to effective services because people wanted them, and not so much to services that were being shoved down people's throats, it would have a more positive effect and would be money better spent.
Another example would be consumer survivor initiatives such as consumer survivor workplace alternatives that have created jobs for people who had previously been thought to be not able to hold them. They have been able to save huge amounts of money because they reduce the use of hospital beds. They are cost effective as well as being human effective.
Ms. Stuart: If you asked most provincial governments today, they would say we do have community resources. They could point to probably more money than they have ever put into community resources in the past. In Ontario, we are sinking a lot of money into community resources. I do not think you need to convince them that is an important thing to do. They already know that. I think they would say they are doing it. Where the gap is, if you look at the money that goes into the community, is how it is spent, the accountability. What I give you money for today is not what you will be spending it on tomorrow. There is no way to monitor that over time, or to ensure the money I have given you to treat people with schizophrenia in this way is not going to be diverted to someone with an eating disorder tomorrow. There is a lack of accountability on how the money is spent.
Senator Cordy: Do you mean spent by the government?
Ms. Stuart: No, by the programs who receive the funding. They will put forward a proposal to get funding for a certain thing. We call it program drift. Six months or a year later it has drifted into another program. The people that were originally supposed to be serviced are gone. They are not in the picture any more and some other program is asking for more money to service that population. Once they realize that they are difficult to serve, or they do not have a service that matches the needs or the expertise to do it, they will drift away again. We do not have a way of ensuring at the community level that the money stays in the community and is protected for the reasons it was put there in the first place; nor do we have a way to know we matched services to needs. Therefore, we tend to use services at either end of the spectrum, overly coercive or intensive services or not intensive enough. People are not getting the things they need in the middle.
Senator Cordy: Ms. Chambers, you made the comment in your closing remarks and I wanted more explanation. I think I got some of it when you were discussing the community and you said that real choices need to exist. You mentioned that people are not necessarily getting the community resources that they want. Is that what you meant by that term?
Ms. Chambers: Yes. As an example, probably the most common complaint by consumer survivors of mental health services is that they rely excessively on medication. People who want support, say some therapy, end up seeing a doctor once every three weeks to get their medication adjusted. They see them for 10 minutes, and that is the support they get when they are living in the community.
They can get daily visits from community team members, but this consists of a person being handed their medication, swallowing it and the person leaving. There is a great deal of research evidence to support that other alternatives are more effective and less costly than a lot of the alternatives that exist today.
For example, an alternative to hospitalization that was found to be extremely effective was something called Soteria House in the United States. Some people were randomly assigned to the hospital as usual and some to this house in which there was one non-professional person who worked with people and talked to them about their experiences. These people had all been diagnosed with schizophrenia. Very few received medication; some received small doses.
In the short run, each group did equally well; in the long run, the people in the house did better. They reintegrated into society and were not constantly using the mental health system. Thirty articles were written about the project, but it was completely abandoned as an approach, despite consumer survivors clamouring for something like that for decades.
Ontario held province-wide consultations a little over a decade ago about what these people wanted. The results were written up. When an attempt was made to transform them into policy, most of what was found was dropped by the wayside because the people with influence, those delivering the services, had their own ideas about what they wanted to deliver, which carried more weight than what the people who needed the services were saying. That is why money is being spent ineffectively. As was identified in this committee's report about the general health care system, there must be more accountability to the people the system exists to serve.
Senator Keon: Mr. Storey, I want to take you back to something you said that was very interesting and reinforces the fact that when we talk about our great health care system in Canada, we in fact do not have a system. You mentioned that patients can get to see a family doctor only four or five times a year unless that doctor sees them for nothing. Surely, this is just not good enough.
I think the problem is that we have not come to grips with the organization of primary care anywhere in Canada. These patients should not have to wait to fall into a hospital, a doctor's office or a police cruiser. A safety net should be there for them once they enter the system. That net could be provided with the proper organization of primary care. I do not think they would have to see a doctor more than four times a year, but other care providers could be there for them when they call.
I would like you to reflect a little on what you can do out there. I know some of the people out there. This committee interviewed some of the primary health care people out there.
What could you do from a mental health point of view to move this agenda along so that the forces for mental health would at least have that base to build on, as the total program approach got organized?
Mr. Storey: That is a complex question. Individuals who design programs for people with mental illness and who make decisions about how money is spent should talk to people with mental illness.
In relation to what Senator Fairbairn said earlier about the waiting list to get out of Riverview Hospital versus the issue of the course of treatment, people with mental illness vote with their feet. Services that they do not value are not well used; services that they do value are very well utilized and are often overwhelmed.
Before I came to the National Parole Board, I was an instructor with a community support worker program at a local community college. I was responsible for designing a training program for community support workers to work with people with mental illness. I believe we need more community support workers. It is great to have psychiatric social workers and psychologists and psychiatrists. We need those folks to support people when they are in particular distress and when their problems are particularly complicated. However, the people I know well, some of whom I count as my friends, talk about the importance of having someone there when they need them after 4:30 and on weekends. Community support workers can do that. For example, they may need support dealing with their landlord. They may need support dealing with the difficult person down the hallway who is making too much noise. They may need support making friends and establishing relationships.
There is nothing more salutary than a good friend or even a lover. Many people with mental illness are not even given the opportunities or the support they need to develop intimate relations, which are important to good mental health.
As Commissioner Romanow said, primary care needs to take place as close to the home as possible. It needs to address the daily issues of the quality of life, the health indicators that are important to us all.
I am not sure if I am answering your question.
Senator Keon: You are trying. You are coming close.
The health field is fragmented right now with all the health disciplines and health facilities. As a common denominator, we need community clinics where the kind of community person you are speaking about could be associated with something broader. It seems to me that it would not be a Herculean task to organize such clinics, but there is resistance from the establishment.
Mr. Storey: I think the problem is also the approach regarding how we look at people with mental illness.
In British Columbia, there is a model of looking at people with developmental disabilities in terms of what they can or cannot do rather than their diagnosis. The medical model is still predominant. It seems you have to fit into a category to get service. We have programs for people with schizophrenia and programs for people with bipolar affective disorder. In the disabilities field, we do not see that. People's diagnoses are usually in the files somewhere, but on a day-to-day basis, they look at what the person is interested in doing, and they try to facilitate that. Any problems are seen as obstacles to be overcome. I do not see that approach generally being taken with people with mental illness, although there are programs out there that do focus on that. Those are the programs that attract people. Unfortunately, those are the programs that usually have short-term funding.
Senator Keon: I will lead Dr. Stuart into a real minefield.
Dr. Stuart, you mentioned substance abuse. With alcohol, for example, if a mentally ill person has a drink and becomes inebriated, provided they not do any harm to anyone, it does not do them any harm. However, if they use an illegal drug and are apprehended, they then become a criminal on top of being mentally ill. To me, this is a huge problem. Some of my American friends tell me that the problem is monumental in American jails.
Can the three of you tell us how the situation should be viewed? As you know, there is a Senate committee that has reported on and looked in great depth at the question of illegal drugs and whether we should be treating some of these people as patients or people with an illness rather than as criminals, at least creating as few criminals as possible.
How do you see the handling of illegal drugs in the mentally ill population? It must be a horrendous problem.
Ms. Stuart: It is not just a problem of illegal drugs. When you look at the data, you see it is any kind of substance, including tobacco, for some people with mental illness, alcohol and then illegal drugs, as you have pointed out. We tend now, and also with physical disorders as you have also pointed out, to fragment and put parts of the issue into different systems. The illegal part we give to the police. The substance abuse such as alcohol we give to the addictions system, which is a separate system for the most part, with a few exceptions in Canada. The physical part we give to the GPs. Everything else we probably put somewhere in mental health, either in a hospital or community.
We fail to recognize that all these things co-occur in these people. They may have physical disorders and substance abuse problems and are dependent on illegal drugs. Sometimes we think there may be self-medication, perhaps because they are in the community and they have more opportunities now than they ever did before. We do not have a way of dealing with these issues. We do not even have a good way of identifying the problem.
Most people with concurrent substance abuse problems who come into the mental health system are not identified. Therefore, how to deal with it as a secondary issue and how to identify it is the big problem.
When you send people with a mental health problem to a GP, there is good evidence now that their physical disorders are not well addressed. Everything becomes focused on the mental health issue. We have a real problem right around the board with integrating care for these people, figuring out what they need as people, not what they need as body parts, and then figuring out the best way of addressing it. I do not think we have a good way right now. Substance abuse is a huge problem in the United States. The jails are filling up with young women, single moms, people who have these issues, and this is not the solution. I do not have a fast solution for you, but I can tell you it is a major problem.
Senator Keon: Can I lead you down the road a little bit before you respond, Ms. Chambers? Take a 16-year-old woman who is about to become a single mother. She gets arrested for smoking marijuana. Her life is derailed — for life. She will never get into university. She will never work for a government agency. She will not be able to travel outside the country. Even if you rehabilitate this person, she will not be able to care for her offspring, and probably will revert to a life of crime.
I would like you to address that. I think in mental illness this is truly a double whammy that society is not looking at, at all.
Ms. Stuart: I suppose one thing you could do is decriminalize marijuana, but I would not want it decriminalized for one group of people in society and not another. That is reverse discrimination.
Some of the consumers I have talked to often say, ``We are fed up with getting a special treatment in the jail system and being forensic patients. Just charge us and send us to jail like anyone else and we will be out on the streets faster than if we had to go through a forensic system and subject ourselves to fitness to stand trial and all of these different things.''
I do not know that decriminalization is the answer. Societies have been debating that issue for a long time. I do not think that we should be making special dispensation for one group on the basis of a mental illness if we are not prepared to do it for everyone. I would like to see something that looks equitable across the board. If we consider that it is an issue for everyone, including a single mom, we should be dealing with it, but not specifically because a person has mental illness. I do not know if that is what you wanted to hear.
Senator Keon: I just wanted to hear what you had to say. Thank you.
Ms. Chambers: I agree with that. I do not think that criminalization of drug use is helping anyone. I have learned much about addictions in the last several years, since the Centre for Addiction and Mental Health became a collection of two psychiatric and two addiction institutions. I have learned that it is the same group of people essentially. We have people on the Empowerment Council who represent people who have been in addiction services, but they have also been in psychiatric services. There is not a distinguishable difference between the two groups of people. The underlying issues are the same.
The experience of having been abused is overwhelmingly frequent, as well as not having had much assistance for that throughout life. Poverty is a constant. It is a degrading and limiting experience in people's lives.
What some of the people on the council with addictions say is that they spent a lot of time in the mental health system before they finally entered the addictions system. They did not feel they got any help in the mental health system. That was not so much because it did not address their addictions as because it did not address the other, underlying issues. It is different in the addictions system because more people are hired in the addictions system who have recovered from addictions. You get the double benefit. They have a better sense of what the problems are and how to help the person to address them. Also, you get the positive example that goes with someone who was there and is now doing better.
People with addictions themselves, I find, vary in what they think is helpful. Some people think having repercussions at some point was helpful to them in getting off excessive substance use. Others have found that it just delayed their ability to do anything because they were struggling with the criminal justice system, and that prevented them from being able to do anything productive for a period of time.
I agree that the solution to the negative effect of the criminalization of substance use needs to be a broadly resolved question.
Mr. Storey: In Vancouver, we do not have a problem with drug use.
Actually, it is a huge issue in Vancouver, as you well know. It is a huge problem for people with mental illness as well. It is not just the Americans who have a problem with it. A recent study done in the Pacific region found that 80 per cent of the people admitted to the federal prison system have a substance abuse problem related to their criminal behaviour. About 17 per cent had a major mental illness as well, incidentally.
The harm reduction model is in vogue. It is dominant in Vancouver. I think that is the appropriate way to go. It would be interesting to see how the mental health court and drug court would work in Vancouver. We do not have those at present, but they are experiments taking place in other areas. I do not know that all the research is in yet as to whether or not they are effective.
I can speak from personal experience. My son, as I already mentioned, has had several psychiatric hospitalizations. Last fall, he discovered crack cocaine and began using it and got in trouble with the law. It has been a journey that has been difficult for him and certainly difficult for me as his dad.
The court system does not respond well to people in that situation. I am fortunate in that I have an income and some understanding and can support him. I can afford a good lawyer and so he managed to avoid jail, thank goodness. I do not think that would have been supportive of his recovery, either emotionally or in terms of his substance abuse.
He is doing well, I want to assure you, right now. We are hanging on by the skin of our teeth. A harm reduction model is the way to go.
Ms. Chambers: You might be interested in a study of the drug court in Toronto by Professor Benedikt Fischer of the University of Toronto. One of his conclusions was that while the drug court has some advantages, it still takes a punitive approach. He believes it is not the best approach to take to addictions.
Senator Keon: Thank you. Your information has been great.
Senator Cook: We all have our stories and to Mr. Storey, I want to say that I can share my story. After the death of my husband, my teenaged daughter became severely anorexic. The system was not there for her. We tried to access the services and the wait was six months. We walked our road and we are fine now. I am sure you will be, too.
I have a compelling question for you. I have thought about mental diseases, mental illness and depression. My first question is: Is the Canadian Mental Health Act adequate to serve today's society, given that there are so many in need? Health is a federal responsibility that is delivered provincially. Now, if I break my leg, it is fine because I can get it fixed and come home. However, for a consumer of mental health services, it is 24/7 and around the clock, is it not? The element of stigma occurs at every level of contact. I wrote down the areas where I believe that common protocols were essential: family, friends, emergency rooms, medicare, the justice system, police, courts and prison. Through all the things I heard you say, there was a common element of the lack of a national protocol to help to understand and to treat the person with mental illness. I would like you to comment on that. It is all part of the psyche of what we are trying to do. For the past 20 years, or so, I have been a member of a board and a front-line worker in a social centre for consumers of mental health. It is one of the better things I have done in my life, including being in the Senate.
Ms. Stuart: I think you have really put your finger on the problem when it comes to mental health or mental illness. There are so many different players involved that it is almost an overwhelming task to get them all on board and doing the same things, and add to the mix, ideological splits between disciplines, and consumer survivor and advocacy groups that want to have certain things and not others. How do you sort through all of this to address what people need — whose needs, under what circumstances and when they need it? We have provincial systems, each of which has a provincial Mental Health Act, each one different across the country although they have many common elements. We have federal legislation — the Criminal Code — that addresses certain aspects when the law is involved. We want to have housing, social services and disability benefits. We want to ensure that people are safe in the community and that the police are not overly punitive. How do you get all of these people to work together? We have been struggling with that in the context of mental health reform in Ontario in our district. Although we do not know for sure, we think it might work if we were to invest in a community mental health group agency program with full responsibility to roster their clients. It would be almost like a primary care model where people belong to this group, and your job is to make sure that they get everything they need. One of the first things that you would have to do is figure out what they do need. That information would have to come from common protocols. They are complex issues.
This is why it is so disconcerting for me to see the acts of omission because if one government agency or one ministry decides that it is not interested in mental health this year, the system begins to fall apart. We rely on them for an important part of the system. Everyone needs to be on board at the same time and working in the same direction. Thus far, nobody has been able to give everyone marching orders to that effect so we struggle and remain frustrated with the way it works.
Senator Cook: How would you see the role of the nurse practitioner in primary care in a mental health setting?
Ms. Chambers: I am not sure if I can answer that question well.
Senator Cook: Perhaps if I added a sentence or two. I want to know about the waiting times that people endure to get help. There is an underutilized group of people that could give the professional and hands-on care that are needed. They could also probably find linkages into the community. I think the nurse practitioner would probably be able to provide some of those elements.
Ms. Chambers: You are talking about the bottleneck that happens because of an over reliance on everyone seeing a psychiatrist. A nurse practitioner would be one option for getting around that. I think that we need to address that but the answer is broader than that.
Patrick was talking about the community support people that are needed but they do not need to be the medical community support people. People who would see them as complete human beings and relate to us that way is what we want more than anything else.
I think we need a national strategy to get rid of the worst of the system, to free up the resources for all the good supports that are possible and that people need. We need to examine the whole system for this.
It will not happen unless the system has more accountability to the people that it serves. Otherwise, there would simply be vested-interest silos of people whose primary interest would be in keeping resources, which is understandable, but it would not lead to the effective resourcing of services and to good ends for the recipients.
Senator Cook: I want to leave this with you. My little drop-in centre sees about 95 to 100 people per day. People who use it have been able to take charge of their own lives at their current level. They have forged the community within themselves. Their greatest strength is the feeling of community in that setting. That is a good news story.
Ms. Chambers: I agree absolutely.
The Deputy Chairman: I would like to thank our witnesses today.
The committee adjourned.