THE STANDING SENATE COMMITTEE ON Social Affairs,
Science and Technology
VANCOUVER, Monday, June 6, 2005
The Standing Senate Committee on Social Affairs, Science and Technology, met this day at 9 a.m. to examine issues concerning mental health and mental illness.
Senator Michael Kirby (Chairman) in the chair.
The Chairman: Senators, we are here to continue our discussion of issues related to mental health, mental illness and addiction.
We have three witnesses, Francesca Allan, Rob Wipond and Ruth Johnson. Colleagues, in front of you are statements that the witnesses would like to put forward.
We normally ask each of you to read out your statements then we have a dialogue and questions.
Mr. Rob Wipond, As an individual: Honourable senators, I have been a researcher/writer on social issues for 20 years, specializing in mental health.
Mental health care is in a sorry state and could easily be much better. Your reports show this committee has a strong bias guiding it and this suggests you will contribute to worsening the situation rather than improving it.
It is good the committee recognizes the importance of community supports but I worry about the encouragement for forced psychiatry and increased psychiatric treatments. Your reports are frequently factually misleading and omit crucial information, and I am referring to all three reports, by the way.
Your discussion of forced treatment in the first report says all legislation must comply with the Canadian Charter of Rights and Freedoms. In fact, most knowledgeable lawyers argue our Mental Health Acts do not comply with the Charter. As we speak, several legal teams are challenging the Mental Health Act of British Columbia.
An Ontario case recently went to the Supreme Court and the patient won. Why are these very important facts not discussed? Worse, the report attacks provinces that allow people to refuse treatment.
If psychiatric treatment were effective and relieved suffering, we would not have the crisis that we have in our health care system. People would love their meds. Forced psychiatry exists because many people often do not feel better, or loathe the drugs and their damaging side effects.
Even more prejudicially, the next paragraph links no problems to jurisdictions where people can never refuse treatment, yet the problems are obvious and epidemic. Just once, treat a patient against her will and if you do not alleviate suffering, you have lost that person's trust and intensified her fears forever. This is a vital issue for virtually all patients and ex-patients I have interviewed. Many are terrified of the mental health system. Why do we ignore this fact? Why are we not looking for solutions to this problem?
The report then highlights this quotation:
Compulsory treatment will usually restore someone's freedom of thought from a mind-controlling illness.
This is deeply biased Orwellian word twisting. This entire section is utterly dismissive of the real, extremely controversial issues surrounding relations of power in our mental health system.
In B.C., patients have virtually no rights and they seldom regard incarceration and drugging as liberating. Psychiatrists who do not want to relinquish any power obviously heavily influenced your report and it is a travesty that you apparently let them block serious questions in your third report.
Without rectifying that extreme, constantly threatening power imbalance, our entire system is thoroughly poisoned.
We endorse forced psychiatry based on an assumption that science can identify mental illness and treat it appropriately. This assumption is false. There is no established legal or scientific standard for what constitutes a psychiatric examination for a mental illness.
We hear this theory of biochemical imbalances and fantasize that psychiatrists in our hospitals examine people's brain chemistry. They do not. The U.S. Surgeon General admits:
There is no definitive lesion, laboratory test or abnormality in brain tissue that can identify mental illness.
The Diagnostic and Statistical Manual 'Normal' Disorders concedes the causes of mental illnesses remain unknown. Psychiatrists exam you any way they like. Mostly they talk with you and observe behaviour. That is it. The closest things we have to standardized examinations, which are sometimes used, are general psychological tests. These tests for depression have questions like:
Which statement best describes how you feel: I do not feel sad; I feel sad much of the time; I am so sad I can't stand it.
Now, if I ask you right now whether you are agitated or really agitated, we can call this exchange a lot of things but rigorously scientific is not one of them. Nevertheless, these types of utterly subjective error-prone dialogues and observations are the foundation of all diagnoses of mental illness in Canada and all forced treatment.
The absence of any discussion of this in your report has enormous ramifications, because if a diagnosis of mental illness is not based in science, what is it based in?
Let us watch it in action. Your report says:
The benefits of early intervention extend to numerous mental illnesses and to individuals of all age groups.
Scientific evidence does not support these fantastic claims. According to the definitive “Early Intervention for Psychosis (Cochrane Review)” for example, there were, “insufficient trials to draw any definitive conclusions.” The few conducted trials found “no difference between intervention and control groups.”
The benefit of early intervention is a controversial hypothesis, and how could we be conclusive when we are not even sure how to examine people for mental illness? Indeed, the CMHA did an early intervention study and found “nearly half of the participants received an incorrect diagnosis.”
Of course, if psychiatrists diagnose incorrectly 50 per cent of the time, the “corrections” are likely wrong 50 per cent of the time too. Therefore, this study actually suggested a 75 per cent error rate in early intervention, which does not beat dice throwing for accuracy.
Who guided those extraordinarily exaggerated claims into your report?
Consider how dangerous they are. Suppose we have a distracted, lethargic boy, and a focused, energetic boy. I say this distracted, lethargic boy has a biochemical brain imbalance; we must force him to drink twelve cups of coffee and pop some black beauties and smoke crack every day and he will be as successful as this other boy. You would laugh me out of here, would you not? Worse, you would say, first off, how do we decide if either lethargy or fervour is an illness? We are just holding these children up to arbitrary social standards. Furthermore, how could anyone seriously suggest that turning our children into drug addicts is a reasonable solution to any of their psychological problems? Consider the long-term damage of extended drug use.
Ritalin is a damaging, addictive amphetamine, not unlike cocaine or black beauties, and that is why it is now a common street drug too. Four months ago, Health Canada banned the attention deficit amphetamine Adderall, after it killed 14 children.
Many studies have shown that more exposure to psychiatrists means more diagnosis of psychiatric illnesses. The Diagnostic and Statistical Manual of Mental Disorders, DSM calls love sickness and computer addiction mental illnesses. This is what you are setting our children up for when you advocate early intervention: Stigma, drug addiction, brain damage and potentially, death. You had better be sure your science is solid, and it is not.
Your reports broadly support increasing access to psychiatric treatments without reviewing the most common treatments. Doing so provides crucial insights into why our mental health care system is in crisis. Psychiatrists prefer descriptives like “antipsychotics” and “mood stabilizers”. In lay terms, the most common drug treatments are tranquilizers, highly addictive sedatives, amphetamines and a variety of drugs with clinical pharmacologies that state “the mechanism of action is unknown.” Most can be extremely damaging.
Studies on these drugs have been on small groups of people for short periods. More people drop out than experience meaningful improvement in their condition. Even then, most receive funding from the biased drug manufacturers. The leading medical journals have spent several years trying to establish new regulations to make these studies more honest and reliable.
The other common treatment is electroconvulsive therapy; electric shocks to the brain. In the early literature, psychiatrists stated that its therapeutic action was brain damage; patients forgot their problems. Nowadays, psychiatrists say the therapeutic action of ECT is unknown but there are side-effects of memory loss.
When you advocate forced treatment and support earlier and more psychiatric interventions, you set people up for sedative and amphetamine addictions, electrical shocks to the brain and poorly understood brain chemistry experiments.
The Senate committee, like much of the public, has developed a distorted sense of the efficacy and safety of psychiatric treatments. We have given psychiatrists supreme authority. Our faith is woven from wishful thinking, conflicts of interest, and a focus on behaviour control over genuine healing.
Consider that the B.C. government recently dismissed environmental concerns and expanded fish farming. Suppose, hypothetically, every provincial politician worked in the fish farming industry and also took personal gifts from fish farming companies. Would you say “unimportant,” “we can still trust our politicians to make a balanced scientific decision about expanding fish farming.” That is exactly the situation we are in with psychiatrists and the drug industry.
Meanwhile, independent World Health Organization studies have consistently shown that outcomes for people diagnosed with mental illnesses are significantly better in India, Nigeria and other much poorer countries than they are in wealthier nations where drugs are the widely available first line of treatment. One study concluded:
Being in a developed country was a strong predictor of not attaining a complete remission from mental illness.
Your report ignores this and exhibits other cultural biases. It laments, “Aboriginal communities suffer significantly higher rates of mental illness.”
The Aboriginal liaison for Victoria's psychiatric hospital put that differently in an interview with me,
Are there Aboriginal people who have a cultural viewpoint of the world that makes them more susceptible to a mental health diagnosis?
That question is not in your report. Ample research has shown that culture, lifestyle and spiritual difference are crucial factors in diagnoses and forced treatment. If you start seeing gods and demons and believe you are approaching a mystical breakthrough, it is not at all likely that a psychiatrist is going to support your exploration. He is going to call you “delusional,” probably “schizophrenic” and tranquilize you.
Your report laments that Canada has only four Aboriginal psychiatrists but shows no concern for the lack of traditional Aboriginal healers in our psychiatric hospitals. That was a major concern of our Aboriginal liaison and this same issue extends further. Where are the Jungian psychologists, the transpersonal psychotherapists, the Hindu yoga gurus, the Buddhist meditation teachers?
If this makes you roll your eyes, or want to, as it does many psychiatrists that I have interviewed, you exemplify the severe prejudice in our mental health system.
This is a major issue of belief differences which your report rarely addresses and it is a primary aspect of the crisis in our mental health system for many patients.
Your report notes “there is a significant lack of accountability mechanisms”. Doctors police themselves. I believe only one modern Canadian psychiatric hospital has ever undergone a comprehensive independent investigation. That one investigation found “systemic” abuse of patients' rights, although few of its recommendations have been implemented.
What proof do the people who hold the power in our mental health care system have that anything they are doing is truly helping our society?
What large-scale statistical evidence do they provide of improved mental health in Canada? What large-scale statistical evidence do they provide of improved mental health in Canada?
In fact, all the evidence shows everything is getting worse. Meanwhile, every time things do get worse psychiatrists say they need tougher mental health laws, earlier interventions, more public outreach, community treatment orders and on and on. They are putting infants on antidepressants. As many as one in five kids are on drugs. Five per cent of our population is addicted to prescription sedatives. Electroshock is increasing. Lobotomies are performed right here in Vancouver.
Where will it stop and when will we say that maybe we need to develop a model of mental health care that is not oriented around drugs and forced treatment.
The Chairman: Thank you very much.
Ms. Francesca Allan, As an individual: Senators, I am a patient and an ex-patient and I spent about four years, not necessarily all of that time in the hospital, but perhaps out on a warrant, still committed, but allowed to live outside the hospital.
I know what I am talking about as far as what it is like to have a psychiatric label and I just want to get this off my chest right away: I do not believe in psychiatry, I do not think it has the answer.
I just do not know how you can take a person in emotional distress, and force that person to do things that he or she very much does not want to do. In many cases, they force the person to do very dangerous things. Psychiatry is not interested in making you feel empowered. The crux of feeling good is feeling that you have some control over your destiny and that is something that psychiatry just does not do.
I am also involved in litigation against my former psychiatrist and as part of that, you have to get your medical records and go through them. One thing just stuck out so much because the people that wrote this were probably members of the psychiatric nursing team and they said that I expressed “feelings of powerlessness.” “We explained to her that electroconvulsive therapy will increase her feelings of power and will make her feel better.” They do not refer to the therapy as “forced” they call it “without consent.” I do not know exactly how they worded it but that was the gist of it. I do not know how dragging me kicking and screaming out of an intensive care ward to have something done that is just unbelievably invasive is supposed to empower you, is it just so offensive to me.
I do not believe in involuntary treatment for anybody. I mean, if I had a friend who was having a real crisis I might say this person has to be inside, they are in danger outside, but it is a very, very far cry from saying that somebody has to be restrained, removed from their social situation, it is a far cry from that to saying we are just going to start messing with your head.
My biggest problem with psychiatry is that I have just seen so many horrendous mistakes. I have put down my labels: Schizophrenia, schizoaffective disorder, clinical depression and borderline personality disorder. These are not just labels, with each label came six months or a year of intensive treatment. The hospital that Rob was talking about, they not only talked about systemic abuse of patients, they were talking about actual abuse of patients and I do not know what the percentage is but I believe it was over 50 per cent of the females in Riverview were sexually or physically abused. Is that right?
Mr. Wipond: I am not sure of the statistics.
Ms. Allan: Oh, sorry. There is just something terribly wrong with that and in the paper that I gave you — I mean I could talk for days about what is the matter with the system, I just pulled the few that really speak to me, one of them is the legal standard for involuntary certification. Whoever wrote the Mental Health Act in B.C. had their heart in the right place, but the way that it is applied is not contemplating that statute correctly.
I was a voluntary patient, asked to leave, and had been certified on that basis without them even having — well, at one time, they tried to do it over the phone; a nurse just wanted to talk to the doctor and said. “She is trying to leave, we better certify her.” That is not what the act meant when it said a “second physician,” which is supposed to be a safeguard, must examine you.
A huge problem is that people are voluntary patients and on that basis, 80 percent of patients are voluntary. They are not voluntary if the threat is to change their status to “involuntary.”
The option of electroconvulsive therapy in exchange for an early release forced me to sign the consent form; this is not consent, it is coercion. Many things are “voluntary,” but many things that we consent to are not voluntary. It is just like if you put a gun to my head and make me sign over my property to you, that does not equate to consent and that is virtually what the doctors do to the patients.
Although there is a provision for informed consent, it is just not done. The psychiatrist that I am involved in litigation with was quite blatant about saying that he did not believe in informed consent; it upset the patients, it was not a good thing. I just do not think that decision is something that the psychiatrist should make. They give us drugs without information on their side effects.
Another huge problem in the hospital is that they are looking for ease of management. Like, it is easier when people are drugged, they are no trouble, and they are just staring at the wall, staring at the TV. That might be a good thing for the staff. We should not be concerned with what is good for the staff; we should be concerned with how these patients will get better and ultimately end up going back to their lives.
I do not know, this just looks like a bunch of words now but I think that there are some disturbing things, like the TMAP algorithm thing. Mr. Bush wants everybody screened in Grade 2. It sounds like a joke but he is quite serious. Pfizer, Eli Lilly and others will do the testing. These are not disinterested parties. That is just crazy. There are members of the psychiatric establishment that support psychiatric drugs.
I cannot tell you how profound an impact a psychiatric label makes on your life. I mean, I lost my job and I lost my means for getting another job because I had been in the hospital.
As an involuntary mental patient, even outside of the hospital, you are the lowest of the low. A convicted felon faces fewer stigmas than we do. I was ill about 15 years ago, then I got better, and then I was out for 12 years and I did not have any care whatsoever but I was younger then. I was 20 and I was very selfish and I was just so happy to be out of the system I just thought, well, every man for himself, I am out, that is it. It happened again 15 years later, nothing had changed, some things were even worse, and this time it is just not good enough for me to get out and say I am done. I have no choice but to see what little I can do about what our society does to people that are just not getting along.
I think there are many things that need to be changed.
I am involved with the Civil Liberties Association in Victoria. They are an offshoot of B.C. Civil Liberties and I sort of hijacked their meetings for a couple of months and made them talk about this issue. They came up with a Statement of Principles re Mental Health Treatment, which is now in the hands of B.C. Civil Liberties who will possibly put together a position paper or join one of these actions as an intervener.
When I went to see them, it was a very small group and some of them I knew from before, so it was very casual and I said, “I want to have the Mental Health Act repealed.” They told me to forget it and we started to talk about how to make it better. I defer to their judgment because they are smart people and have been doing civil liberties for 30 years, most of them. Anyway, what they came up with is really worth a read. If that, in conjunction with the current Mental Health Act the way it is, if it was actually followed, I would not be as happy as I would be if there was no such thing but I could sleep better. I would be okay with that.
The Chairman: Thank you.
Ms. Ruth Johnson, As an individual: I would like to speak on preferred housing options for your consideration, not because I am a public speaker but because I feel so strongly about the issue.
I am a consumer of mental health services, which means I am a patient, I am a client, I am a number of labels, I am a peer support worker for CMHA, and I volunteer three days a week at the psychiatric ward as a peer support worker. You will find the blue pamphlet in the handouts.
I have been on a committee for the hard to house for ten years and helped plan five consumer conferences. I sit as a consumer on the Advisory Council for Mental Health.
I have heard from many people on client issues and housing. Affordable supported housing is one of the primary needs to stabilized mental health. The B.C. guidelines practices for mental health agree with this and go a long way to support individual care. I see it as one of the biggest government directives in client care and accountability.
The effect of stigma and poverty are still the hardest to bear. The shelter allowance here is only $325 per month. The availability of apartments in that price range is almost non-existent and roommates can provide extra stress. The government must provide additional shelter allowance funds.
Housing limitations directly affect admittance to and discharge from the psychiatric ward. We need a variety of housing on a continuum of care from tertiary to boarding homes to block homes and independent SIL apartments. Both federal and provincial grants need to be available for this housing.
In summary, I will restate my personal observation: In my experience, consumers and I get ill when, on top of a mental illness, we have the additional stress of not having adequate supported affordable housing.
Could you check why $800 million remains unclaimed from the affordable housing agreement recently released from the 2005 federal budget of Minister Fontana's $1.5 billion he committed a month ago?
I would like to point out what exists for housing in Nanaimo on Vancouver Island. You will find a graph and in the green you will see the tertiary care for the most severely ill. Our hospital psychiatric ward has 24 beds now with eight more to come for a hospital psychiatric ward. That will bring the total to 32 beds.
There are 20 other 24-hour care beds in Nanaimo. In the yellow you will see the family care homes or boarding homes, two early psychosis intervention beds, one respite bed and 14 regular beds. The orange represents all the SIL, supported independent living, houses in Nanaimo. Nanaimo Affordable Housing has 38 beds with staff. B.C. Schizophrenia Society has 18. There are four more beds at Rosehill and 10 in co-op housing. We have nine semi-independent living houses at this time and they are all apartments located anywhere in the community. There is now a wait list of about 30 people.
The population of Nanaimo is 76,600 and we have only 216 beds. There is a women's shelter in town and also a shelter for women trying to exit the streets and drugs. There is a shelter for transients called Samaritan House and the Salvation Army is building a new transient shelter that will have 16 suites for mental health and six crisis beds.
The Vancouver Island Health Authority philosophy statement uses best practices models of psychosocial rehab housing for mental health services. We need continuum housing to address the variety of levels and the needs of support during the acute phase of the illness as well as the need for permanent housing to the point of independent living.
All housing for the mentally ill and its corresponding varying levels of support will support psychosocial rehab. The ultimate goal is for all clients to have safe, affordable housing that meets their individual needs. Most consumers polled preferred apartments where clients live in rent-subsidized apartments with interim outreach support. Documents and reports to support this went directly to Mr. Kirby and are detailed in three studies. Some clients may need this type of ongoing housing and many stay in their subsidized units for quite some time.
Adequate housing for people with mental illness look like this: Units that are clean, no mold, no cockroaches, no rats, quiet, safe, and close to amenities and support services. We need choice in a variety of neighbourhoods. Furniture, appliances and household necessities need to be available. Options for maintaining the same housing arrangements regardless of the changes in a person’s mental health need to exist. We need to add the maintenance of these buildings to an ongoing budget. We need money to start up new projects.
Here is the five-year plan study with all the people in the different forms shown on the graph. This study showed us where to spend the money for our area and we have to date what I have showed you as the existing housing. The list includes goals, standards and strategies in the areas of service accountability, consumer involvement, individualized service and a recovery focus.
I personally do not believe you ever recover from a mental illness, you just learn to cope with it. Best practices should include service accountability with appeals procedures.
The City of Nanaimo study states that the community is the essence to survival in a town and that affordable, safe, sustainable housing is the basis for that neighbourhood. The study encourages senior levels of governments to recommit to supporting non-profit housing. The study found that wait lists for non-profit housing is increasing. Many homeless live in Nanaimo and mental illness may or may not be diagnosed.
The study left a suggestion for strategies to seek solutions for affordable housing for the homeless situation in Nanaimo. The study seeks to ensure that the shelter portion the income assistance program reflects the actual market range for rental housing for low-income families, people with disabilities, seniors and single adults.
That concludes my statement so please feel free to ask me questions about my illness, my wellness and about my experience with other consumers.
The Chairman: Thank you, Ruth.
Let me just work my way backwards and across the panel with a couple of questions then I have Senator Trenholme Counsell, Senator Cordy and Senator Cook.
Ruth, you should know that the issue of the supporting housing problem is a coast-to-coast problem that began after the federal government withdrew in 1994.
You are the first person to give us a detailed submission concerning the housing problem. Your written submission, “Draft #2” gives us details and descriptions that highlight an unbelievable coast-to-coast problem.
Francesca, can I ask you a question about the statement of principles?
Ms. Allan: Yes.
The Chairman: I will go through them in detail, but you pointed out that they are now in the hands of the Victoria Civil Liberties Association.
Ms. Allan: Yes, B.C., which is a much larger organization.
The Chairman: I have never looked at the provincial Mental Health Act, I mean they exist in every province in varying degrees and I am well aware of the Supreme Court case you talked about recently but I have not looked at the details of the B.C. act.
I gather the Civil Liberties Association is to try to get a rewritten or amended version of the B.C. Mental Health Act and then presumably other provinces would include these kinds of changes. Is that what they are trying to do?
Ms. Allan: The major change is they want oversight by civilians and by peers, people who have been through the system. The best thing that they came up with was the psychiatric advocate office, which would be there for anybody who had a problem. If you get in touch with these people, they will, you know, sit with you while you speak to the review boards when you challenge your certification. We are not sure if that person will be a lawyer or a social worker, but somebody will accompany the patient.
The Chairman: You refer to essentially an ombudsman-type role.
Ms. Allan: Our government cut our ombudsman. We do not have an ombudsman here anymore. We do? Sorry, forget it then.
The Chairman: We have to work out the exact nature of the advocate's office but the idea and the concept is good.
Ms. Allan: Just the idea of somebody to be there to make sure that the committee hears what the patient has to say.
The Chairman: Right. Again, one of the other ideas along that line is the notion of patients having a case manager or advocate for the patient rather than a case manager working for the system.
Ms. Allan: Yeah, because we have that title now.
The Chairman: The title is the wrong title but the concept is the same.
Mr. Wipond, we will debate some of your points eventually, but in your comments, you suggested that this committee has many positions.
Our issues and options paper outlined our position on the state of mental health in the country. Our positions will be in our final report that will contain recommendations.
I do not mind any of your comments except please do not take anything that is in the issues and options paper as a position that we are likely to end up necessarily taking at the end because that is not the case.
You held up a couple of studies, one of which I believe was the CMHC study. We would like a copy of it if you have one.
Mr. Wipond: Yeah, I have a copy of the executive summary with me, and I will give it to the clerk.
The Chairman: When we are finished, we will pick that up from you, because we would like to see that report.
I understand you are concerned about psychiatrists. Let me tell you something, by the way, this might not be evident, but the majority of us around the table have had family members who have had similar illnesses.
My point is we understand. Many of us would say many of the things about psychiatrists that you have implied. That is not to say that psychiatrists are all bad, but to say we understand the limitations of the profession. That is why I found your comments useful in terms of getting us somewhere with this problem.
Is British Columbia or any other province making the needed changes? I assume that because you are a reporter that you know about these things.
Mr. Wipond: I see a hodgepodge of little things happening here or there. For example, we talked about accountability; I believe there is a county in Oregon or Washington that passed legislation requiring more careful monitoring of people after leaving the hospital to see if patients are recovering from mental illnesses or just bouncing around in conjunction with the sort of treatments they are getting.
We need an independent measure of success or failure and that legislation is precedent setting.
The Chairman: We do that, by the way, for heart patients and cancer patients routinely, just to give you the perspective.
Mr. Wipond: With so many things, if we only applied the same standards as we do to physical illness: accountability, scientific rigour, et cetera, we would have a completely different ball of wax.
This is a social control sort of movement. We get these occasional housing movements and initiatives around particular issues in areas where a compelling person manages to work with the police and the psychiatrists.
Right now in Victoria, we have a group of people looking at the whole problem of emergency interventions, because we had a couple of people killed recently in emergency intervention situations.
We had a meeting at the hospital where they showed a Canadian movie about this particular problem. The movie illustrated how police are becoming therapists out on the street.
I do not know if I am really answering your questions about solutions. Europe and India have a completely different approach to mental illness.
The Chairman: Is Riverview closed?
Mr. Wipond: It is closed.
The Chairman: It was the largest mental institution in the province.
Mr. Wipond: Yeah, and it was not closed for any particular reason other than all the cut-backs and they shifted everything over to Vancouver General Hospital. It had nothing to do with that fact that it was a terrible hospital or anything like that, it was very indicative of most hospitals in the country.
The Chairman: Well, it was a hundred-plus years old.
Mr. Wipond: Oh, as a facility, yes.
The Chairman: Is there a study to see what has happened to the Riverview patients after they left Riverview?
Ms. Johnson: Yes, most of the discharged Riverview patients went back to their home communities without anything in place for them and that is why we have so many homeless. That discharge process began in about 1985.
That is why we needed supported independent living to give them structure to stay well, otherwise it is a revolving door in and out of the hospital and then they become more ill and need to be institutionalized again.
The Chairman: What happened here is what happened in Ontario when they closed psychiatric beds and did not provide replacement housing for the patients.
Mr. Wipond: There is a University of Pennsylvania study on the subject of homelessness and mental illness in New York. The nine-year study is quite comprehensive, and what they found that it turned out to be cheaper to provide personalized supportive housing to people than let them be homeless. In the homeless state, they are more likely end up in emergency rooms, in jails, and they needed far more medications, whereas when they are in supportive housing their lives are much more stable.
The Chairman: In fact, I will get that reference from you but we have observed that we have turned the streets and jails into the asylums of the 21st century. That is the reality.
Senator Trenholme Counsell: Ruth, this is a very useful and thorough study on housing. Thank you very much.
I was a provincial politician and I know that it is not easy to get the federal-provincial sharing arrangements worked out. I suspect that with all the goodwill in the world on both sides it takes time.
Ms. Johnson: It is so hard to get anything started in the community without administration money to start it up.
Senator Trenholme Counsell: That is right, and the community has to have an idea and a plan.
I wanted to ask you about forced psychiatry. Obviously, there is a great deal, Rob, in your paper about forced psychiatry but I think I will turn to yours, Francesca, if I may. I find a contradiction in your notes. You say on page 1 that it is your personal belief that,
Involuntary treatment of any kind is a severe human rights violation.
Then, under the statement of principles of mental health treatment you say in paragraph 2 regarding involuntary detention as a last resort,
It is legitimate if a person is a danger to society. It is also legitimate if a person is a danger to him/herself.
My understanding of involuntary detention, involuntary treatment, if you will, is that it enforced only when more than one physician considers a person dangerous. In some cases, two physicians must sign the person into treatment. I do not know about every province across the land, but I understand that the person is either a danger to himself or a danger to other people.
Ms. Allan: Those two statements are not perfectly aligned, but I am not perfectly aligned with the civil liberties people either. They met me as far as they were willing to go; they were not going to go all the way to call it a human rights violation.
Senator Trenholme Counsell: You do not agree with the principles.
Ms. Allan: No, I agree with them.
Senator Trenholme Counsell: They are not in line with what you say on page 1.
Ms. Allan: Well, there should be strict limits on involuntary detention and that is because that can only happen when society is at risk or a person is in a state where he or she is unable to make decisions on their own.
What you described about the two physicians, that is great, but that is not the reality. That is what the law says. I have been phoned by a psychiatrist at my home and been told that I would do what he said, which was to add another pill to my drug cocktail, which at that time was up to four different medications in substantial doses. He told me that if I did not comply he would “send the police to drag me to the hospital in handcuffs.” Those were his words. I was perfectly well at that time. That is not what the act contemplated. I hope I made myself clear that it would be fabulous if we followed the Mental Health Act.
Senator Trenholme Counsell: Somebody from your home must have called and said you needed more medication.
Ms. Allan: No, that is incorrect; I live on my own.
Senator Trenholme Counsell: Do you mean it when you say that involuntary treatment of any kind is a severe human rights violation?
Ms. Allan: Yes, and I think in some cases of severe human rights violations, there can be such overriding concerns that society allows them.
Senator Trenholme Counsell: Your statement does not say “sometimes,” it is a statement.
Mr. Wipond: First, there is not mention of “being a danger” in the B.C. Mental Health Act, or a number of other acts in Canada. That word is not in those acts. There is no mention now of “being a danger.” Well, there is a mention but it is academic. The actual criterion for incarceration and involuntary treatment is “in potential danger of mental or physical deterioration.”
A clause “if you are a danger to yourself or others” can also be a reason but the vaguest reason that they have, the catch-all, as the lawyers call it is that phrase “mental or physical deterioration”. What is that? Everyone can experience mental of physical deterioration.
We are ahead of the curve and more and more jurisdictions are following our direction. When I asked the manager of clinical psychiatry in B.C. why our Mental Health Act is going in this direction, he said it is because of the influence of psychiatrists and families who want more control. This gives stronger discretionary authority to psychiatrists and puts more trust in them to make the call. It came around after we had an inquest into the murder of the wife of a prominent politician by their son. After the inquest, there was a public movement to get control of these people.
Here is a compromised position: Let us allow detention of someone who might be in imminent danger, and bear in mind here the real problem with the word “danger” is not defined anywhere. Are you a danger to yourself because you are a smoker? Technically, yes, you can be incarcerated against your will for being a smoker, or any of a number of things that make you a danger to yourself.
We need to consider the legal aspects of what we mean even if we include a danger clause. The compromise position that the B.C. Civil Liberties is looking at is allowing detention rather than treatment. The detention would keep the person until he or she seemed well. We suggest that as opposed to intervening in your brain and screwing around with your head with your little experiments. We do not even do that to serial murderers. Somebody could be the most dangerous person in the country and there is no law that allows you to get into their brain and chemically lobotomize them or whatever else you might do. So no, you would have to classify them as mentally ill first and then do it. A mentally ill person has really less rights; they can be incarcerated and treated.
Senator Trenholme Counsell: Ms. Allen what is your basis for saying that the biochemical imbalance theory is a fraud?
Ms. Allan: I say that because they do not know what the chemicals are, they do not know what the imbalance is, and they cannot show on a healthy brain what it is we are shooting for.
Senator Trenholme Counsell: Who is “they”?
Ms. Allan: “They” are psychiatrists and the medical textbooks.
Senator Trenholme Counsell: Well, there are hundreds of thousands of articles on the biochemistry of the brain. Do you think it is all fraud?
Ms. Allan: I do not think it is all fraud. I think there are some good doctors, but I think the science as a branch of medicine is a fraud.
Senator Trenholme Counsell: You do not believe in any of the biochemical theories?
Ms. Allan: I believe it is conceivable that some people can have a biochemical imbalance corrected, but I think they would be the exception. Until they can come up with some answers about what exactly these chemicals are and what they are trying to do I am suspicious of the theory.
Mr. Wipond: MindFreedom International and the American Psychiatric Association debated that issue. MindFreedom went on a hunger strike to force the American Psychiatric Association to provide proof that a biochemical imbalance is the basis of mental illness. During and exchange of letters MindFreedom had its own independent scientific panel assess the replies from the American Psychiatric Association. The APA continued to say, “hundreds of thousands of clinical studies will prove this” but provided only two citations to textbooks which of course are not peer-reviewed.
Senator Cook: I would like to go back to the variation of provincial Mental Health Acts. Are you saying that those various acts violate the spirit of the Canadian Charter of Rights?
Ms. Allan: Yes, they do.
Mr. Wipond: Absolutely, no question, and virtually any lawyer that I have ever talked to feels that way. The people who design the legislation try to empower the doctors in the system. You need a lot of money to take something to the Supreme Court and you need a good case that fits certain criteria. It is very difficult for patients and their families to challenge an act.
Our Health Act has changed three or four times in the last 20 years so you can imagine how hard it is to mount these cases, particularly with somebody who is really unstable as your main client in the case.
Senator Cook: I am searching to understand the gap.
How do we put forward a recommendation that is compatible with the Charter of Rights and Freedoms, given that each province and territory across this nation has a Mental Health Act that they believe suits their needs? How do we get past that problem?
Mr. Wipond: Well, for example, the Mental Health Law Program has the CLAS, Community Legal Assistance Society, and they specialized in this area.
They have many positions but one is the idea of consent, because even though we are deemed to have consent, it is not consent in practice. Further, if a person wants to refuse treatment it is considered proof that the person needs treatment. That is how doctors use it.
We have a piece of legislation that applies to elderly people in home care, and there are a variety of options open if you are sliding into dementia where you can sign ahead of time if you are deemed in a reasonable state. They suggest that a person determine beforehand what to do with their money, property, and so forth. The legal document is binding. That is one option.
Another option is to choose a legal guardian under those situations. That is a very good option as well, right? And this kind of thing would rectify all the kinds of problems that people like Francesca talk about where she could ahead of time plan for this when she is in a really good state of mind.
This option allows the patient to make clear his or her intentions concerning treatment concerning certain medications, or electroshock et cetera.
Ms. Allan: The Provincial Representation Agreement Act deals with this kind of pre-planning in the worst-case scenario. Unfortunately, the provisions of the Mental Health Act exclude patients from a representation agreement. It is not only the Mental Health Act; it is the all the legislations that defer to it. It is very, very powerful, very toxic legislation and we have to be careful using it.
Senator Cook: So the problem is not as much with the various provincial Mental Health Acts or the human rights per se, it is in the implementation by people that you have lost trust in applying those acts.
Ms. Allan: Unfortunately, I do not know what the situation is in other provinces.
Senator Cook: Well, let us look at where you live.
Ms. Allan: I am very familiar with the Mental Health Act in British Columbia. I believe it is a well-intentioned document with reasonable items. As I said before, if we follow the act we will be well on our way to finding solutions to the problems.
Mr. Wipond: To be clear, the problem is the acts, because they are too vague. The British Columbia act gives the doctors too much discretion and as a result, we will see more lawsuits. The act does not set out the physicians’ jurisdictions or the rights of the patient. The legislation must be rewritten and include a definition of mental illness, under which conditions a person may be incarcerated, and whether a patient may appoint a representative to handle his or her affairs.
Ms. Allan: Even though it is vague, we have the law and it is in place right now and the very least we can do is insist that everyone follows it.
Senator Cordy: Ruth, I would like to start with you and thank you so much for the valuable information you have given us regarding housing.
We have heard repeatedly that housing is one of the most primary needs and when deinstitutionalization happened many years ago, they forgot to put the money into the communities to provide for adequate housing.
You talked about the stress of finding housing and that a patient sometimes has to remain in the hospital because a domicile is unavailable.
How do they go about finding housing if they do not have family members to help?
Ms. Johnson: Our hospital has a hospital social worker and part of the tertiary care beds are step-down beds where you would go from hospital discharge to a 24-hour care facility. There is help available in our hospital and I am a peer support worker in that area. There is some hope but there are just not enough beds and it jams up the system. If you want to enter the system because you are ill, there is not a bed available.
I believe in a holistic system where each of us should choose what the right cure is for us, what the right medication is, what the right combination is, and what options our doctor’s offer. So I have a slightly different slant on it.
Senator Cordy: With the shortage of housing that is available, would you have to accept a housing situation in a community that was not your community?
Ms. Johnson: Oh, definitely. Some of the smaller communities have to come to Nanaimo, or Victoria. Sometimes you have to accept co-op housing with four other roommates, and roommates add stress, anybody can attest to that.
Senator Cordy: Absolutely.
The Chairman: Particularly our spouses.
Senator Cordy: Is that a short-term stay until there is housing or is there any available housing in rural areas?
Ms. Johnson: Well, like I said, out of the 90 SILs, semi-independent living apartments, there are 30 people already on the wait list and we started to get extra SILs about a year ago when we started to do our next five-year plan. We just completed a five-year segment, now we are on to our next five-year segment and already there are 30 people on the wait list.
Senator Cordy: That does not sound very good for the people who are waiting for housing.
I was an elementary school teacher for 30 years and I always fought for early intervention for many problems. I am not talking Ritalin because I was not a Ritalin pusher; in fact, I found it very frustrating when parents would sometimes doctor-shop to find a doctor to give their child Ritalin because it was much easier to say your child had ADHD rather than admitting to parenting problems. I am not talking Ritalin but I am talking early intervention to help children and families in crisis.
I get the feeling that there are no positive points to early intervention, that it is all negative and I cannot quite get my mind around that.
Mr. Wipond: You mean early intervention like the child is having poor marks and you hire a tutor to help them?
Senator Cordy: No, I am talking if a child is having difficulty. I mean, a teacher deals with thousands of children over a 30-year period. If a parent comes to you because their child is not socializing and exhibiting very aggressive behaviour, should the teacher ignore the parent?
Mr. Wipond: Early intervention works great in breast cancer and it works great for poverty. However, I question many of our psychological interventions because most of those are not particularly scientific. I question the role of the school in the diagnosis and treatment of mental illness. These type of interventions may lead to hypotheses about X or Y syndromes.
I can see a positive role and I believe that maybe you played a great role in that situation but I have seen many teachers who I would not trust from that perspective. I have seen out of control classrooms purely because of size. I have seen out-of-control teachers point to one child as the source of the problem while the teacher is the problem. In some instances, kids with different kinds of disabilities are in a large class and there is total chaos. These types of situations occur with great frequency in the United States.
The U.S. Drug Enforcement Agency heard testimony from psychiatrists that the 20 per cent of school kids on Ritalin did not have any reason to take it.
If the front end of that wedge is very nice but the back end is psychiatry you need to be wary because that is a slippery slope. We have to think about that and particularly because this is so impossible to diagnose.
Senator Cordy: What do you do?
Mr. Wipond: You help.
Senator Cordy: You help, but that is early intervention to me. Maybe our definitions are different.
Ms. Allan: It is the language that we use. I know what you mean by “early intervention” and I am for what you mean but you say it to me and I have heard that word used and that sounds very threatening to me. That sounds like labelling and once you are labelled, you are put on a track and that is where you stay.
Mr. Wipond: Psychologists and psychiatrists employ that term largely to define emotional problems. If early intervention does not mean psychology and psychiatry it is okay, but I think you mean psychology and psychiatry, do you not?
Senator Cordy: Tell me, when parents ask what they should do and whether to test their child should I say that the child is too young?
Mr. Wipond: In many cases, some of the best results occur when the entire family enters therapy.
Senator Cordy: I agree with you; when a child has a problem, that problem does not occur in isolation. We have mentioned poverty and housing as problems that can cause mental illness.
Mr. Wipond: We do not have concrete proof of that and I think we need to be a lot more careful in the how and the why of the situation.
Senator Cordy: You say it like that but I get the feeling that you disapprove of early intervention of any kind.
Mr. Wipond: No, not of any kind, I am just suspicious of psychology or psychiatry. I am against early intervention with psychiatry. I have seen some beneficial things from psychology, so I am a little more open to that idea, but psychiatry I think is far too dangerous, and physically damaging.
I know a psychological specialist who is a critic of the system and she thinks psychology is quite dangerous but I personally would endorse psychology over psychiatry.
Senator Pépin: Then what are we to do?
Mr. Wipond: Give me a situation, if you are asking what to do.
Senator Pépin: Witnesses informed us that early intervention could help two- thirds of the children with mental illness.
You say you are against psychiatry and psychology and it seems that you are against medication. What is a parent to do?
Mr. Wipond: I am just trying to make you realize how dangerous the situation is. There is a well-known psychiatrist in Victoria, who specializes in nutritional approaches to psychological problems. This is a whole other approach; it is very non-invasive in that sense. Perhaps that approach will not work for everyone but it does work for some. In any case, we must look at the child's nutrition very closely and design a nutrition program for that particular body.
Our society has powerfully deep, wide-ranging nutritional problems, particularly in our youth. Sugar is one of the most controversial substances that they inhale — inhale, I mean eat, but, yeah, pretty much inhale.
The Chairman: It is chocolate we inhale.
Mr. Wipond: Many studies have gone on to show that this dramatically influences the psychological state of a child and anyone who has pumped their kid up with a lot of sugar knows that is a true statement.
I would not say we cannot approach the idea of early intervention, I am just saying we need to be very careful of the direction we take because early intervention does not include nutrition, social issues, poverty, family pressures et cetera.
Ms. Allan: My treatment began when I was an adult so it is not exactly the same but they just do not take a very common-sense approach. They did not ask, Are you happy at home? How well do you sleep? Do you eat a well-balanced diet? Do you have enough money to cover your basic needs?
Without asking those questions, a doctor is unable to give a proper diagnosis. I mean, you are just not looking at the whole picture and I think the same applies to children. We must know how and where children live, how they eat and how they spend their spare time.
It is like there is just a whole spectrum of things to be looked at when you say “intervention.” If you mean “psychiatric intervention,” you must know that none of those things is covered and they are critical to understanding the child or adult with the problem.
Mr. Wipond: In connection with this is a fascinating book on the principals and practices in emergency psychiatric treatment. The book cites a number of studies showing that 30 per cent to 50 percent of emergency psychiatric problems are actually physical. Now, this is interesting. Cardiovascular disease, a parasite, a nutritional imbalance, and certain nutrient deficiencies, can cause extreme psychological problems, but the studies show that only 10 per cent of psychiatrists ever do a standard physical check-up. I do not refer to exotic testing, but a standard physical check-up would find this particular problem.
Ms. Allan: Some of those tests are so simple. People diagnosed with depression should have a thyroid test because an under active thyroid causes depression-like symptoms. The doctors often disregard these common-sense approaches.
Senator Pépin: Many witnesses say that more community centres could help a lot. In addition, we have had many witnesses say that they do not want to see too many people with mental disabilities living together in the same housing complex.
Ms. Johnson: That is why the semi-independent apartments are around the city. CMHA provides us with a clubhouse where members go every day. Members have a daily activity and lunch and have work projects so they have meaningful work to do when they are well.
Senator Pépin: There is also a program called Consumer Survivor Business, which, I believe, is in Ontario. That program prepares people to return to the workforce.
Do you have a similar program to help people start or get back to work?
Ms. Johnson: The hardest things to bear are poverty and the stigma. CMHA does have a job program and starts people but there is such a stigma once you have a mental illness that you lose credibility. I was a counsellor, I was a substitute teacher, I was a daycare worker, I worked in a women's shelter, but once they labelled me “mentally ill” I lost all credibility.
I moved and earned back my credibility as a consumer and that is why I do peer support, because I feel I understand the needs of my fellow consumers. I can help fellow consumers through the maze and help them navigate the system. I can help them find an advocate, help them with the legal system, and help them when there is a violation of their rights. I do not know if that answers your question.
Ms. Allan: I think that is so positive because a negative experience is now a positive experience. Over the last few years, the people that have helped me the most with my troubles have been lay people. Those people have helped me along the way to getting through the system and getting better. They remember their experiences and are very sympathetic and helpful to others.
Mr. Wipond: We were talking about models and there is a hospital in the United States that has two boards: One, the typical board of mental health professionals and the other board of consumer survivors. The executive director reports to both boards and either board has the power to fire him. It is a tremendous model; it is working amazingly well. I heard the man give a talk and he was truly inspiring.
Senator Pépin: Francesca, you have said that all people with a mental disability should have help to make decisions.
What are we to do about the patient on the street, the person who is quite disturbed?
Often these people do not know anybody and they do not have any family. How can we help them to start a program, put them in the hospital, or start them on medication?
Ms. Allan: Yeah, those people are in the most difficult position in society and that is where we came up with the psychiatric advocate or ombudsman. I am lucky, I have people around me, I can give my power of attorney away, and I know lawyers that can do that very quickly for me.
Senator Pépin: The majority of patients do not have that help.
Ms. Allan: I do not know how many do or how many do not, but that would be one of the functions of the ombudsman’s office. In the same way not everyone can afford a lawyer but yet hypothetically we are supposed to have legal aid available.
Senator Callbeck: Ruth, you mentioned that one of the hardest things to bear is the stigma associated with mental illness.
In Regina, we heard from a group that visits grade 8 students in the schools. They visit those children and other children’s groups.
Do you have similar programs here in Vancouver?
Ms. Johnson: It is definitely taking place in Nanaimo, I have done that myself. I find the high school groups harder to talk to than the college groups. The high school groups want to be invincible and think that mental illness will not touch them or their friends.
I think we need more of it and I think you are on target when you talk about it. I think that is part of early intervention and part of public awareness. Some TV commercials de-stigmatize the mentally ill. One commercial shows a mentally ill person holding a baby; it shows that he is a safe person and he likes the baby.
The Chairman: It is obviously only a B.C. commercial because none of us have seen it.
Ms. Allan: It is quite fabulous. I am not sure who puts it on but the punch line of it is you see this man with a baby and then you see his mental illness label and then the caption is something like, “what is sick is how your mind just changed.” It is very powerful advertising.
The Chairman: Do you know the sponsor?
Senator Callbeck: You spoke about visiting the high schools, have you gone into lower grades, grade 8, for example?
Ms. Johnson: No, we do not, but I was an early childcare worker and I learned to recognize behaviour that was consonant and consistent with normal maturation from behaviour that was just a little off target. I do not know how you would deal with it but you can recognize it.
When I worked at the women's shelter, I dealt with many children that had witnessed severe abuse and I taught them how to use feeling words to communicate their feelings. I think communication can help your doctor know how you are doing as a child, as an adult, as a consumer, and as a patient.
I have a good working relationship with my family physician and he lets me choose my treatment. I think if parents, children, therapists, and doctors would all work together then we would have a much better system. I do not know how you as senators get that to happen but those are things that I wanted to bring up today when you asked me questions.
Senator Callbeck: Francesca in your Statement of Principles re Mental Health Treatment, you say
3. It also follows that there should be no such thing as compulsory treatment.
Ms. Allan: Yes senator, there should be no such thing as compulsory treatment.
Senator Callbeck: I understand a judge can order treatment for up to 60 days to try to get a person fit to stand trial. You would disagree with that?
Ms. Allan: Yeah, I disagree with any involuntary treatment.
Senator Gill: I think I agree with many of your points about the new way of thinking about mental health. I do not know how many people think this way and I believe that it will be difficult to change the way that society thinks about people with mental illnesses. Senator Kirby mentioned it is not a final report because the final report will be different. I hope it will be different.
Ms. Allan: I do admit to being very defensive and so I am on the lookout for anything that looks like bias. There is good reason that I am that way and, for instance, I did not read the three reports, I scanned them. Rob read them and it alerts my suspicions when I hear about a heading “Access to Treatment,” and under that title is the subject of forced treatment. I am on the lookout for that all the time.
Senator Gill: I am not complaining about the way that you did that.
Ms. Allan: Well, I heard it before.
Senator Gill: Sometimes you have to be strong enough to be listened to.
Mr. Wipond: I am encouraged by what you are saying but I want to emphasize that you should look at your third report, which dropped any discussion about forced psychiatry and the statement about Aboriginals and the statement about early intervention. I am glad you are open to consideration of those items.
Some of the wording is very subtle as in the very definition of “mental illness.” If you are going to discuss stigma you have to ask that question. The moment I look at you and say that a person is mentally ill, and incompetent, that person is stigmatized. We have to really address that as a society and say maybe that this is the root of the problem because we do not really know enough about mental illness.
Senator Gill: I just want to add that our committee and others are trying to represent, as best we can, a minority in this country. We care enough to listen to witness and try to help solve the problems.
I have not attended all of the meeting but I do know that the Aboriginals are having a very bad time of it. Many people are in jail instead of being elsewhere because they are not conforming to the society in general.
Do you think that many people in B.C. think like you?
Mr. Wipond: Absolutely. The overwhelming majority of patients I talk to think this way.
Senator Gill: I am talking about the general society.
Mr. Wipond: We receive conflicting comments from the mental health professionals that work in the system. Some psychiatrists write extremely angry letters to say that there are hundreds of thousands of clinical studies that show that this guy is just a loony-tune, and we get letters from psychologists and social workers who say that the guy is right on. Many support workers are concerned with the power the doctors have to force therapy on the mentally ill.
One particular psychiatrist wrote to me about his patients. He told me that in the context of his Jungian psychology program he admitted a consumer to hospital to stabilize her while she experienced a crisis. The doctor in fact encouraged her to go to the hospital just to try to stabilize her. The doctor tried to see her while she was in hospital but the doctors in the hospital refused to let him in to see her. She got worse in the hospital but the doctor could not see to her release; she was under another doctor’s supervision. There is some concern about the power of some of the doctors.
Ms. Johnson: It is interesting to note that the statistics show that 40 per cent of the people in jail have an undiagnosed mental illness and that a high percentage of the people in jail are native people. That does not seem fair to me.
The Chairman: I agree with you and that is what prompted my comment that we are using the streets and prisons as the asylums of the 21st century.
Ms. Allan: I want to get back to how many people are on our side. I believe that if more people knew what was going on we would have more people on our side. People do not believe me when I tell them about shock treatment; they think that it went out in the 1950s. I had forced shock treatment last year. How can people be outraged if they do not know about the problem?
Senator Trenholme Counsell: I have a couple of points to make and the first is with respect to early intervention. In my experience, it started out with infants, young children, looking at vulnerabilities, and trying to intervene early. We used the term “early intervention” in respect to young children. It is a philosophy that the sooner you treat something, whether it is a social condition or whatever it might be, all the hundreds of things where intervention is necessary, so that is not directed towards people with mental illness.
You said you would like to have an example. I was very recently at a breakfast annual meeting of the Schizophrenia Society of Canada. I will always remember the guest speaker because told his life story and he really gave thanks to modern psychiatric medicine. He is thankful for the medications that help him to function and work. He is a father and a husband and because of modern medicine and methods, he was able to stand up and give his speech.
I will remember you people and what you have said because you represent an awful lot of people who have had bad luck in one way or another with the system. I think you are telling a very important story of many people who feel very, very ill done by the system. We have to listen to your stories and see how to put them in our report.
You are making very strong points and so I must ask you if you think a person with schizophrenia or in a manic phase of bipolar should not receive treatment or medication?
Ms. Allan: I am going to get to that, but I have also heard people tell their stories and they are very moving and many of them thank their psychiatrists but what you are talking about is somebody that wants to continue on medication.
I have no problem with truly voluntary treatment; that is not the issue. I am talking about people who do not want these things done to them and we are forcing them anyway.
You asked about a person in the manic phase of bipolar and whether that person should be medicated.
Senator Trenholme Counsell: What would you do for them? What would you offer them?
Ms. Allan: It depends how they came to approach the system. I would have to know what behaviour caused such alarm before I could make a decision.
Senator Trenholme Counsell: What if the person is manic or suffering from delusions?
Ms. Allan: What about mania; people tell me they think they are going to be on the Olympic team, I think that is a little out there, but it is not problem. Lots of mania is not a problem; many delusions are not problems.
Mr. Wipond: Well, that is a very good point.
Ms. Allan: You can ask many people who believe in God if they really think there is a person up there watching everything. That could be a psychotic delusion; it is just a matter of what society will put up with.
Senator Cook: Ruth how heavily are you involved with NGOs in your community. I refer to non-governmental organizations like churches and Rotary groups, because the administration of housing must be complex.
I come from the Province of Newfoundland and we are engaged in a similar housing project in partnership with The United Church of Canada who takes the risks for back rent and rent forgiveness et cetera. How much of that do you do in Nanaimo?
Ms. Johnson: Well, that is why I mentioned the New Hope Centre is going to provide many things for the homeless people. There will be 16 suites for mental health people and six crisis beds. That directly came about after a committee called SKIPPY, I do not even remember what the acronym stood for anymore, but that is why I included the survey from the City of Nanaimo, because they have been doing that and Nanaimo Affordable Housing is a non-profit association that set up two apartment buildings staffed for people in the community.
Our town really cares about the people that are in our situations and they recognize our needs. I think we are really lucky in some ways but we could go a long way because the smaller communities really have to do without. A lot of the money on the Island goes directly to Victoria and then is divided up between the smaller areas. The smaller regions get lesser portions, of course, and of course, most of the money needs to go to the most acute patients.
The committee needs to realize that many of us have long periods of wellness where we can make our own decisions, especially with support, and it is the supported independent living that I care so passionately about that has kept me on a committee for ten years.
Senator Cook: In my province, we have one facility under the same umbrella run completely by the consumers who live there. The residents have access to the board so that there is a connection. Do you have any of that in Nanaimo?
Ms. Johnson: Victoria has a number of fourplex buildings where individuals can buy into their own condominium, so to speak. Nanaimo does not have anything that equals that at present.
Senator Cook: Francesca, help me to understand a piece in your brief. In number 5 of the statement of principles you propose a better oversight system, the creation of a psychiatric advocate, a program for psychopharmacologists, and then the one that stumps me is,
The appointment of civilians to the oversight committees in the relevant licensing bodies.
Do you mean a consumer or volunteer from the community?
Ms. Allan: I think it could be either but the critical thing is that it is not a psychiatrist.
Senator Cook: A non-professional.
Ms. Allan: Yes, absolutely.
Senator Cook: Maybe we could ask you to send us a bit more detail on how you see this happening.
Ms. Allan: I would be happy to send you whatever the B.C. Civil Liberties come up with; they have this now; they are presumably going to be approaching it.
Ms. Johnson: I think that the committee might be interested that I sit on a hiring committee for the community support workers that go out to the people's housing. The staff nurse at the hospital that runs the psych ward was surprised when a consumer, a mental health patient, was not on her hiring committee. That is something that we expect.
Senator Cook: That is the other point I made, that would happen primarily for your family care homes, people who live in private families.
Ms. Johnson: Yes.
Senator Cook: So there would be some sensitivity training or some understanding of that subject.
Ms. Johnson: Yes, and we meet once a month.
Senator Cook: Finally, Rob, we are very ordinary people trying to do an extraordinary job. In order to do our job we have to listen to everyone and we have to get a balance.
I am not going on the defensive about what we have done so far but remember they are options and recommendations.
I would like you to help me understand your opening statement that says:
Your reports show that the Senate Committee has a strong bias guiding it, and this bias suggests you’ll contribute to worsening the situation rather than improving it.
Help me to understand that statement so we can revisit it and strike a balance, especially from the discipline of psychiatrists.
If I read this correctly and understand you, there is a power shift and it has shifted to psychiatry rather than the rights and the proper care of the individual.
Mr. Wipond: I think that is a great idea because in my estimation the power balance has swung too far to the other direction. The irony is that the power is now in the hands of the doctors because of the failures and the inquests where the mental health professionals win the battles. They are more articulate, they are usually more forceful, and they usually have better research to cite than the consumer survivors who are often trying to deal with their own internal issues at the same time as they are trying to present a case. I have seen this battle played out a million times.
I am happy to see that you want to strike a balance and I am terrified when I hear about treating a person against their will. The incredible use of the Orwellian twisting of words scares me. Treating people against their will is seen as freeing them up and they actually say, “We are freeing you up” because they will not incarcerate you after they have treated you. That is where I see the pendulum has swung too far and we are nowhere near a balance.
We must revisit the phrase “mental illness,” because we do not have a consensus on what it is, how to diagnose it, or how to treat it.
We have to start there and realize that some people respond well to these medications and they like them and they voluntarily continue to take them and for them they are working well. Other people do not want treatment or medications forced on them. I am looking for that balance and I do not see it.
I am sure you have started to see this. I want to emphasize that I have researched a million social issues and this is the most politically and emotionally volatile issue in which I have ever been involved.
What disturbs me most is when I interview psychiatrists and many mental health professionals they totally deny that this is a controversial area. They will not admit anything. If they admit that this is controversial territory, I would respect them. They routinely say the science is clear, the studies are clear, and it is very much like a doctor who has a certain god-like position that says “I know, trust me.” They take that position and that is what I find most concerning because they do not engage in debate. This is so extreme that in the case of my articles in Victoria they never wrote a letter to the editor challenging anything I said about them. However, the paper got a letter saying that if they ever published me again they would retaliate against the paper. They refused to let the health region employees grant interviews, all because of me and the articles I have written.
We finally sat down, had a meeting, and what was the predominant issue? They wanted the meeting off the record so I am telling you something now I should not be telling you, but I think it is important. The overriding issue was they did not want me interviewing patients. They referred to the consumers as “psychotics,” who could not be trusted.
I try to do my due diligence, but why do not we engage in a dialogue. They did not want that, even if we offered them space to put their own position, as long as we were going to put patients' arguments right next to them they did not want that debate and that to me is the foundation of the problem. They are trying to deny that this controversy and these kinds of problems exist. This committee is exposing these problems and I think it is great.
This is a traumatic area of our society. We need to discuss mental illness, flesh it out, really be honest about the research and then we can strike a balance. So much manipulative stuff has gone on behind the scenes that have disempowered the consumers and the survivors.
Ms. Johnson: In conclusion the last thing I would like to say, because I notice we are past the time already, is that I would like to see the issue discussed as “mental health issues” and that we have periods of “wellness” when we can make our own decisions. I do not like the reference of “mental illness” because that says I am always a patient.
The Chairman: Let me ask you, all three of you, about the word “consumer,” which we used in our reports. Personally, I do not like the word “consumer” but in any event, we do not like the word “patient” because clearly that is the purely medical word.
In people like yourselves and people in peer support groups, is “consumer” the best word to describe a person who has had a mental illness or brain disorder?
Ms. Allan: Not if they have been treated involuntarily. I loathe the word “consumer”.
The Chairman: What is a better word?
Ms. Allan: It is a psychiatric label.
Mr. Wipond: The term I use is “people who have been diagnosed with mental illnesses.” It indicates that somebody applied the diagnosis and you may agree with it or not.
The Chairman: You understand our problem. On the other hand, we may have to find a shorthand way of saying that, in a long report you do not want to repeat it a million times but we can do that through a glossary or definition.
Ms. Johnson: I use the term “consumer” because it is a general term but when I am in daily situations and I talk about my mental illness I say I have “suffered from symptoms of depression,” and I do not explain it any farther than that to most people because I do not think it is their business.
Mr. Wipond: Someone who did a history of the psychiatric survivor movement in Canada really objected to the way your report used the word “survivor.” The word “survivor” was twisted around to suggest that these were people who survived mental illnesses. In fact the history of that term, and she was involved in the founding of the use of that term in Canada, was people who survived psychiatric treatment.
The Chairman: We will not use the word “survivor.”
Senator Cook: On Saturday, I was on an Ottawa bus and saw a large ad that said mental illness is a hard journey. I do not know who posted the ad.
It is a complex problem. I think that many people can make life better but that no one segment has all the answers. I think that what we need find an answer that will take care of that individual. That is the reason why I am here this morning. I worry about labelling. My daughter was anorexic for three long years after her dad died. I have never heard anyone in our community, you know, friends or whatever, say that Jean was, or is, anorexic. She did not get labelled. It was a mental illness, and I believe it was, and through a long period of rehabilitation, she managed it.
Ms. Johnson: Often that is because anorexia is visible; my mental illness is not visible.
Senator Cook: Okay. Thank you. I have often wondered why it did not apply and I guess hers was both a mental and physical illness.
Senator Trenholme Counsell: Francesca, you said you hated the word “consumer.” Do you accept the word “patient”?
Ms. Allan: I think it is better than “consumer.” I think it is more truthful.
Senator Trenholme Counsell: So maybe you could just speak to that a bit, please.
Ms. Allan: About the word “consumer”?
Senator Trenholme Counsell: Well, the word “patient”.
Ms. Allan: I cannot really talk about why “patient” is a better word, it is just that we are mental patients therefore we are patients. Like, it just makes more sense. “Consumer”, I mean I am a consumer of A & B Sound because I choose to go there and not to another store. “Consumer” really makes the hair on the back of my neck stand up.
Senator Trenholme Counsell: I agree with you. Do you think “patient” is more humane, it is more kind?
Ms. Allan: Well, I do not care if it is more kind; I care if it is more honest and it is more honest.
Senator Pépin: So as a good Franco can we say “people suffering from mental disability.”
Ms. Allan: Well, whom are we trying to please here, because if you talk to most of the people that I discuss these things with they call themselves “escaped loonies.” I mean, it is not a politically correct issue at all.
Mr. Wipond: The history of the psychiatric survivor movement in Canada is in a book called Call Me Crazy: Stories from the Mad Movement. Many people use the word “crazy” because it indicates something that is fun and creative.
Senator Trenholme Counsell: I think “survivor” is quite appropriate when you are talking about cancer but I think it is pretty insensitive when you are talking about mental illness.
Ms. Allan: It is so overused, like people are talking about surviving bad marks on their political science exams.
Mr. Wipond: Yes, and it is insensitive to psychiatrists.
The Chairman: Let me thank the three of you for coming. We realize we have prevailed upon your time way beyond what we said we would. We will still take a short coffee break and then the next panel will be allowed to run overtime too. Thank you very much for coming.
Ms. Bonita Allen, As an individual: I thank you for inviting me here today. I have to say that I am not a professional or an expert; I am just a mother who has experienced mental illness for many years.
My son Gary had his first bipolar episode as he turned 16 and during the ensuing 26 years Gary has been hospitalized several times. Last spring he fell into a severe bipolar episode during which he displayed bizarre, agitated and aggressive behaviour. He was involuntarily hospitalized and rightfully certified with a mental disorder. While a patient in the intensive care unit he was involved in an unfortunate confrontation resulting in injuries to staff and the laying of criminal charges. The events that followed convinced me that the criminal justice system does not lend itself to the complexities involved in dealing with people who have psychiatric disabilities.
Most of the crimes committed by the mentally ill are the direct result of their psychosis, hallucinations or paranoia. They have little or no control over a mind playing tricks on them. Their crimes mainly involve lifestyle or public nuisance situations, misdemeanours, and sometimes aggressive or violent behaviour. Does it serve any useful purpose to punish these people? Will the additional stigma of a criminal record enhance their already difficult lives?
I am certain that if the mentally ill could gain easier admittance to hospitals when required, and upon stabilization and release received appropriate accommodation, community support and case management, there would be a sizeable decrease in the number of criminal acts and other mental health emergencies. This begs the question: Have we, as a society, after the deinstitutionalization of care for the mentally ill, committed the resources necessary to provide adequate community mental health services for those at risk of commitment or for those who persons discharged from hospitals, prisons and jails?
I ask whether it is fair or legal to take persons into a courtroom who are manic, delusional, paranoid, catatonic, hallucinating, or any combination of the above. In such a state people cannot appreciate the gravity of their situation, and are unable to act in their own best interest. To make matters worse, police, judicial staff and lawyers do not always have the knowledge necessary to understand mentally ill defendants.
It is my observation that the inhumane practice of incarcerating mentally ill people in jails and prisons is cruel, unjust and ineffective. Prisons do not have adequate or appropriate facilities, resources or medical care to deal with the mentally ill. Poorly trained staff is unable to handle the difficulties of mental illness.
The mentally ill suffer from illogical thinking, delusions, auditory hallucinations, paranoia and severe mood swings; they do not always comprehend the rules of jails and prisons. They are highly vulnerable and prone to bizarre behaviour that prison staff must deal with and inmates must tolerate. Such behaviour can and does result in tragic consequences such as physical assaults ranging from lacerations to brutal beatings and rape. They can also be subject to disease transmission and drug addiction.
To assist in their recovery, mentally ill people desperately need the support and advocacy of family and friends, which proves difficult in a prison environment.
The stress of prison life exacerbates the already fragile condition of a mentally ill person and lengthens the duration of illness. Clearly, the presence of people with mental illness in the criminal justice system imposes substantial harm to both them and substantial cost to that system.
I am not an expert so I cannot provide solutions to these concerns, but I have some suggestions for your consideration.
Firstly, perhaps look at an alternate model that diverts people from the criminal justice system. The mental health court system used in Washington and other U.S. states, and I think maybe in Ontario, though not perfect, is working well in this direction. The objective of the mental health court is to prevent the conviction and jailing of the mentally ill and/or of securing their release from jail to appropriate care services and support in the community. Of high priority is the concern for public safety in the arrangement of community care and supervision. Organizations such as the National Mental Health Association are monitoring potential risks of mental health courts and working to ensure the courts are but one part of a coordinated community effort.
I suggest that we cease subjecting the mentally ill to wasteful and ineffective court appearances until they are in a stable state and able to comprehend why they are there and know their options.
I suggest we appoint an advocate to provide assistance in reaching an informed decision. We must ensure that the person receives a treatment plan and necessary services in a timely and appropriate manner.
Thirdly, I suggest that we move aggressive and violent patients to a more secure environment, similar to what we have at Colony Farm, preferably before they cause harm or injury and without the necessity of being charged or found guilty of a criminal offence.
The reformed community-based care and resources promised upon deinstitutionalization of the mental health system appear to have short-changed those people in trouble with the law and those who may temporarily present a danger to society. As I see it, the current practice simply seems to move these people from one system to another. As such, we are once again turning prisons into asylums. This route proves ineffective in treating mental illness, does not respect people's rights and is potentially harmful to innocent bystanders.
It is my request, therefore, that the National Mental Health Policy mandate that we take steps necessary to cease the practice of making criminals of the mentally ill.
The Chairman: Do you want to read your last paragraph, which is terrific.
Ms. Allen: Oh, about my son? My son is presently on probation and is recovering from his ordeal in the criminal justice system.
I have to give credit to the criminal justice system because it certainly provided him with decent accommodation; he is monitored and is receiving case management and medical support.
I have to say the mental health care system has shunned him, because of the incident in the hospital; they do not want any part of him. He is doing quite well these days, his first book of poems is in publication, and, as I say, one of the benefits of the criminal justice system was the rehab care that he received in jail.
The Chairman: I will make the observation that your last sentence was the one that struck me. I am just going to make a comment, you say:
Perhaps the one benefit of pleading guilty to a criminal offence is better rehabilitation support.
We will talk about this later on, but I just cannot resist making this one observation. Ontario has a mental health court system similar to the one that you described and we had the Chief Justice of that mental health court make the statement that just blew most of us away. He said if you want to have a Gold Card for getting the best mental health treatment in Canada, the trick is to commit an offence and have yourself declared criminally insane. The Chief Justice said that it is in jail where a person will get the best mental health treatment.
Your comment echoes what the Chief Justice said about the system.
Thank you very much. We will come back with other comments afterwards but I would now ask Doris Ray to proceed.
Ms. Doris Ray, As an individual: Thank you for inviting me here. I am very pleased with your interest in family members' concerns.
In September 1984 I received a phone call from my son's landlady in Toronto advising me he was in a hospital psych ward after attempting to fly out of the window of his upstairs apartment. I was convinced then that it was the worst day of my life but of course it was not. It was the beginning of a catastrophic rollercoaster ride, culminating nine years later with him being judged not guilty of a second degree murder charge on the grounds that he suffered from a mental disorder. The mental disorder that he, his family, friends, caregivers and medical professionals had been attempting for so long to curtail the symptoms of was paranoid schizophrenia.
For my son the problem at the time, this happened in Nanaimo, was not that he had been non-compliant with his medications, it was that the medication he was on either did not work, or perhaps had ceased to work.
Earlier that awful day he had become frightened and after describing his worsening symptoms, he went to the hospital. There were not any beds available at the time and the physician in charge did not recognize the severity of his symptoms, so he went back to the group home.
My son, who is not and has never been a violent person, was overwhelmed by his paranoid hallucinations and delusions and lethally stabbed a 21-year-old fellow resident. Later when I visited him he confided that it had been the worst possible situation that could have happened. When he was informed of what he had done, he spent three days throwing himself against the walls of his jail cell in an agony of intense remorse. During that time and during his four-and-a-half years at the Forensic Psychiatric Institute in Port Coquitlam he never received any psychological counselling other than a few group counselling sessions initiated by the institute's very kind pastor.
My first recommendation is more counselling sessions for the mentally ill, both in and out of the jail cells and in and out of institutions.
When the mentally ill become stable and face the challenges of the real world, they are extremely vulnerable to suicide. I cannot imagine any group of people who are in more need of psychological counselling than the mentally ill, and in a perfect world with lots of available finances there would be counselling for their family members.
I live in a very small town in northern B.C., west of Prince George. When my son first became ill, the only one who could tell us anything about what was happening to him was our family doctor. That poor many was extremely busy. When I finally connected, through the B.C. Schizophrenia Society, with other families with mentally ill loved ones it was as if a door had opened wide. At one of our meetings an RCMP officer was the guest speaker. The officer confided that he had learned about the symptoms of schizophrenia through his brother-in-law who suffered from the disease. His training in the RCMP, most often the first line of defence for families in crisis situations, especially in small towns, included very little training in recognizing and dealing with symptoms of psychosis. I recently inquired of a young officer if he had had any more training in that line and he said they now receive even less training than in years past.
My son is now quite well and on an effective medication. He is happy to have received his absolute discharge from the institute, but last summer when he visited us in northern B.C. he was suddenly stricken with an anxiety attack. Whenever this occurred at his group home in Vancouver he would call out for assistance and be whisked away to a hospital by ambulance. It was a reality check for me that day to learn that there were no psych beds at all available in Prince George Hospital or, for that matter, anywhere in B.C. or in Edmonton. I have no idea how often that situation occurs but I do not recall it happening in the old days.
I was dismayed when the RCMP officer frisked my son, treating him as one would a hardened criminal, before transporting him in a patrol car to a holding cell in the emergency room at Prince George Hospital. I understand that mentally ill people are transported always by RCMP rather than by ambulance. It would be nice if police officers were trained to treat mentally ill people with at least a minimum of respect.
The one other recommendation I have stems from that well-informed RCMP officer who spoke at our B.C. Schizophrenia Society meeting about ten years ago. It may have been just a policy in an area where there was a significant native population but I thought it was a good one. The officer's brother-in-law was visited monthly at his home by a mental health worker who assessed the man's condition while at the same time befriending him and making him feel safe. It reminded me of when my first child was born and a help nurse would visit with valuable information and assurance for me as a young mother. It would have been even more helpful for me if a mental health worker could have visited my son and me when he was much older and struck down by schizophrenia.
The Chairman: Thank you, Doris.
Ms. Joan Nazif, Chair, Family Advisory Committee of Vancouver Mental Health Services: I should say that I have practically a lifetime of experience with mental illness in the sense that my father was diagnosed with schizophrenia when I was a young child and I have a 37-year-old daughter also diagnosed with the disease. So you should have a copy of my report, it has Vancouver Coastal Health on top of it.
I am Chair of the Family Advisory Committee of Vancouver Mental Health Services. The role of the Family Advisory Committee is to oversee the implementation of a family support and involvement plan and to address new and ongoing issues regarding family involvement and support. The senior management of the Vancouver Mental Health Services, and particularly by Kim Calsaferri, the Regional Manager of Rehabilitation & Recovery, approved and endorsed our plan. Without their commitment we would never have been able to accomplish what we have done.
In setting up this committee, family members attended focus groups that prioritized the needs and issues of their families. These issues are discussed in our Family Support and Involvement Plan for the Adult Mental Health Program in Vancouver and a copy similar to the front page is like this, except of course it is not be yellow, was e-mailed to the Senate Committee a few weeks ago.
Family representatives such as parents, siblings, and adult children, bring their experiences and perspective to the committee. Other committee members include a psychiatrist, a senior mental health worker, consumers, and community agency representatives.
Our main recommendation to the Senate committee is to advocate for the support and involvement of families.
The establishment of family advisory committees can serve as a model for mental health systems across the country. The advantages of a family advisory committee is that it can successfully foster collaboration between families and mental health professionals and lead to improved support services for families and better services and care for the mentally ill.
My presentation today will deal with the eight key priorities for families, with a few suggestions for their resolution: the importance of family involvement; the need for family support services, focusing on the seriously mentally ill; training for mental health professionals; confidentiality issues; recovery and rehabilitation; drug addiction and the mentally ill; and legislation issues. I will discuss each issue briefly. More information is available for honourable senators.
The number one priority for families is involvement. We feel families must be involved on two levels: In the individual's treatment and recovery, and in an administrative capacity in terms of strategic planning, service delivery, decision-making and evaluation of mental health services.
It is indisputable that when there is family involvement the outcomes are better for clients; there are fewer relapses, fewer hospitalizations, and fewer crises. Families’ feel it should be an expectation, not an exception, that they will be contacted, informed, invited to attend meetings, included in the history taking and kept up to date regarding treatment plans and progress.
The second priority is family services and support. Research indicates that the most effective way of implementing family support services is to establish a funded position. This is exactly what we requested of senior management in Vancouver and Otto Lim, an experienced psychiatric social worker too the full-time Project Lead position in September 2004.
Otto has assumed responsibility for planning, developing and coordinating family supports and services, including collaboration between staff and families, developing consistent approaches to families, and assisting in the development of policies that promote the introduction of family support and involvement to Vancouver Mental Health Services.
Important services for families include access to counselling, which can greatly assist a family in coping with the life-altering illness of a loved one and working through changed expectations.
Information and education for families is needed in many areas. Families need orientation to the mental health system, for example, because it is very different from the regular health system. They need education on the nature of mental illness to understand the signs of relapse. They need to know how to access services when the relapse occurs. Education enables family members to come to terms with mental illness.
Respite care provides relief for families who can be overburdened by the demands of dealing with mental illness. Self-help is also a legitimate means of support. These family-led groups are driven by the needs of family members and they nurture and support the family as well as strengthen family competencies.
Stigma and discrimination continue to be a major problem in society and families feel that education of the public is of paramount importance.
I am not reading my whole brief if you are concerned.
The Chairman: I was getting a little concerned you were.
Ms. Nazif: We feel public education is of paramount importance and we strongly support information about mental illness being a mandated part of the school curriculum and feel that public awareness might perhaps best be achieved by starting with our youth.
We need to take into consideration the financial burden mental illness brings to families. Disability pensions for the mentally ill are ridiculously low and most families dig into their pockets to provide for basic needs such as new shoes, dental care, health care items and spending money.
Think of single-parent families, think of the mentally ill who are parents and have children; they cannot cope with the financial demands. All families would benefit from a decreased tax burden, for example.
It is imperative that our national mental health plan focus on the most seriously ill. Although mental illness in general is underfunded, families feel that the resources for people with severe, persistent mental illness are inadequate. If people with schizophrenia and other disabling brain disorders continue to be lumped under the larger mental health umbrella they will always be at the bottom of the heap.
We must give priority to those who have chronic, severe, persistent mental illness in terms of care, planning, outcome measurements, quality improvements and accessibility to treatment.
Staffing and resources need augmentation in order to provide adequate care. Case loads for case managers in Vancouver range from 42 to 75, and I can assure you that the larger figure comes from the area of Vancouver where they have the most difficult patients. Even the lower figure does not permit quality care.
The fourth priority is training for mental health professionals. Families are concerned about the old-fashioned attitudes held by some mental health professionals. Many were educated years ago when the family was seen as part of the problem, not as part of the solution.
Mental health professionals need additional training to ensure they have the required skills and abilities to work effectively with families. Professional educational programs across the country should also be evaluated regarding their curriculum and textbook choices. Textbooks supporting the idea that family dynamics are the cause of mental illness are still in use in Canadian universities.
Evidence-based practices should be the standard in all of our educational institutions regarding counselling and therapy. Programs such as counselling psychology, social work, nursing and psychology need to provide their students with accurate information.
A major concern for families is to access information about their seriously mentally ill family member. Family members are not interested in the confidential discussions between therapists and patient but they do need to know diagnosis, care plan, medication, safety issues, so that they can continue to provide the best support.
How can the family adequately deal with issues, crises and problems if they are unaware of the treatment plan?
How can they provide the support for their ill family member if they do not receive information regarding progress and medication changes? A family advisory committee can influence clinical policy to include greater communication with families.
British Columbia has perhaps the best mental health legislation in the country. The British Columbia Mental Health Act has the broadest and least restrictive language and regulations. Like many other provinces, we have the Freedom of Information and Protection of Privacy Act, FOIPPA, but unlike some other provinces, we are fortunate to have guidelines for FOIPPA. The guidelines, written by our provincial government Ministry of Health, state that a health provider may decide to share information with family or another third party.
This document may be useful to other jurisdictions dealing with confidentiality and privacy and a copy is before you.
Canada's national mental health plan must focus on recovery and rehabilitation, especially for those who have severe persistent mental illness. Minimal standards in these areas need to be determined by the federal government and mandated across the country in order to improve the level of care. Goals for recovery should be established at the time of the initial contact with the mental health system and reviewed regularly with both client and family. Not only does every client need an individualized care plan, but also people with serious mental disorders like schizophrenia must have a case manager.
All mentally ill people have the ability to recover, they can learn and accomplish new tasks and abilities and in doing so they will have a much better quality of life.
Supported housing is one of the pillars of recovery and needs to meet the individuals’ needs.
We need to give particular attention to young people afflicted with a serious mental illness like schizophrenia. They need special help in order to complete their secondary education. Young people with psychotic disorders benefit from alternative or regular school programs where the teachers and counsellors have the education and knowledge about mental illness that is essential for providing appropriate support.
We recommend district-wide policies that allow students to take reduced course levels and psycho-education programs that educate students about mental illness and that provide ongoing support by providing contact with other students facing similar challenges.
Individuals with mental illness have a greatly increased risk for drug addiction compared to the general population. Living here in Vancouver you cannot walk on any of the downtown streets without coming across the drug-addicted mentally ill. We desperately need a national drug strategy. I speak personally because my daughter, who has schizophrenia, is on crack. Crack is a relatively inexpensive drug, it hits the pleasure centres, and it gives a sense of pleasure that is unattainable by any other means.
How can we expect a person with a serious mental illness whose cognitive abilities are affected, who has little or no motivation or insight, who lives a sort of hand-to-mouth existence every day, how can they ever manage to quit?
The interventions, and resources and treatment facilities are hopelessly inadequate. The general attitude is to wait until they are ready to quit. Well, they do not want to quit.
Morally speaking, our society is failing these people 100 percent. We have a moral responsibility to protect the disadvantaged in our society, to safeguard their well-being and to show them respect and dignity.
Due to our inaction and lack of resources, we are condoning three types of behaviour: Illegal behaviour, it is against the law to do drugs; degrading behaviour such as sexual acts, panhandling on the streets; and dangerous behaviours that lead to such diseases as hepatitis and AIDS.
Society should protect these vulnerable people. It is our responsibility. How can good health care include permitting our seriously mentally ill to be drug-addicted? How can we let them jeopardize their health and safety every day because they are unable to quit using drugs?
We should consider enforced addiction treatment for the seriously mentally ill or at the very least a proactive outreach program that functions tirelessly in an effort to get them off drugs.
An essential component in the drug battle is the integration of mental health and drug addiction services, which need to be brought together to reduce the fragmentation of services. There is also a significant lack of addiction services tailored specifically for the mentally ill, as they are often unable to participate in a meaningful ways in existing detox and recovery programs.
My eighth topic is legislation. Other family members discussed this topic and I will add that treatment in a forensic setting is extremely costly. People with mental illness do not belong in the criminal justice system; it is not a good long-term solution.
I would like to mention extended leave. This is community treatment orders; we call it extended leave in B.C. It is very beneficial to individuals who require repeated hospitalization because of their failure to follow treatment plans. It provides for the release of the patient from hospital to the community before the expiration of an existing committal order. The individual understands that if he or she is not complaint with treatment it is possible to be readmitted to the hospital without the formality of a new committal. This is extremely important for people with schizophrenia who, even when stabilized on medication, continue to lack insight and awareness about the importance of continuing treatment.
Briefly stated in terms of legislation, we need standardized legislation across the country that will ensure proper treatment of the seriously mentally ill. The professionals’ hands are tied without good legislation.
In conclusion, families play a critical role in the care and recovery of their family members. This is possible if families are involved in the treatment of their loved ones and have resource support.
We must hear the voices of the families because they advocate for the seriously mentally ill who cannot speak for themselves. We must allow the families to participate is decision-making and evaluation of mental health services and systems.
We need to focus on the seriously mentally ill in our country and ensure appropriate training for mental health professionals. Legislation needs to reflect the concerns of families in dealing with issues of confidentiality, drug addiction and criminalization of the mentally ill.
The model of a family advisory committee can play an important role in promoting an improved mental health system in Canada. Requirements for a successful family advisory committee include having the determined support of the senior management team and the establishment of a full-time staff position to coordinate family support.
We need more funding to bring the care and treatment of mental illness to the same level as other illnesses; however, any increased funding needs protection. It must be designated according to standards established by our national mental health plan. Best practices and evidence-based medicine must be used to formulate standards and ensure accountability. We need to increase our staffs at all levels to provide proper care. We need resources and support for families, psycho-education, respite services, counselling, and self-help groups. We know that when we support families we all benefit.
Immediate action must begin where the need is greatest. We must provide help and targeted funding for the most seriously mentally ill and their families.
I want to say to the committee how very grateful I am for all your reports. I was just so impressed and so delighted that you have identified so clearly the critical issues facing us and I really want to congratulate you and thank you for this opportunity to speak with you.
The Chairman: Thank you, Joan, for those kind words and thanks to all of you.
Doris and Bonita, your experiences with the criminal justice system show us how differently the mentally ill are treated. In your case Doris I gather, it turned out reasonably well, as well as things do under the circumstances in the sense that your son seems to be better.
In Bonita's case, it is a worse example because he did not receive the treatment and the situation although okay now is somewhat okay in some ways in spite of the criminal justice system rather than directly because of it.
Is it just hit and miss, that in one case Doris's child hit a good judge, I mean good in a more responsive kind of judicial review.
What do you two see is the difference between your own two cases?
How can we get the kind of improved outcome?
Ms. Ray: Well, my son was already in the mental health system and had been for years, so that helped his situation. He was categorized within the system, which made treatment easier for him to get.
When you mentioned earlier that the best thing that could happen is to be incarcerated because of a mental disorder that is exactly what my son's lawyer in Nanaimo said. He said, “Now he will finally get the help he needs,” which was in the Forensic Psychiatric Institute in Port Coquitlam. It was all a matter case of finding the right medication for Bruce. In Bonita's case, it sounds like he went to jail.
I know of a case where this happened and where the situation still exists. Very often men do not recognize that they are mentally ill and they seem to think that they would prefer to go to jail. My son felt that he deserved a certain amount of punishment, but he was lucky enough to receive it in a medical environment.
The Chairman: Do you want to comment on the question, Bonita?
Ms. Allen: Well, my son was actually certified and he was in a mental hospital at the time in intensive care and he was displaying violent aggressive behaviour. When the incident happened in the hospital the hospital wanted him out of their hands so he was sent to jail and appeared in court a couple of days later where the judge decided he should be assessed. Well, there were no beds in the forensic hospital so they threw him in the jail out on Wilkinson Road in Victoria and I am sure he would have sat there for the full 30 days had I not intervened and screamed and yelled and made phone calls and wrote letters. They finally found him a bed to get a proper assessment over at Port Coquitlam. He got his assessment, and they brought him back to court, although he was very unstable. They let him out on bail and he wandered around doing weird things for the next ten days until they picked him up again. He had no idea of bail provisions or when he should report and he was doing bizarre things. He went back to the Wilkinson Road jail until they found him a bed again in the institute. At the institute things started to happen.
The Chairman: That answers my question, if you can get into the forensic unit, though legally part of the criminal justice system, it is much more like a hospital setting.
Ms. Allen: Yes, they do get treatment there, I do not know if you would consider it great treatment, but in the jail they just give him the medication and hope that he takes it.
Ms. Nazif: I understand that it is extremely costly to have people in the forensic system. If we educate the police to take people to emergency rooms rather than jails, we could avoid that cost to the system. The courts must understand that these people need treatment and hospital care and should be getting treatment rather than court hearings. They should be going to hospitals; there should be beds in hospitals to handle mental disorders.
The violence and so on is simply a symptom of psychotic behaviour; it is not because they really are criminals who are out there trying to do the wrong things.
Ms. Allen: The trouble is though, that they can be dangerous.
The Chairman: Clearly you need some facility for those who are dangerous but I think the point Joan is making is in many cases they wind up in jail because nobody has any idea what else to do with the problem.
Joan, your opinion is in opposition to the position that Rob takes. You support the B.C. Mental Health Act, while he does not support the act. Did you hear his comments.
Ms. Nazif: I was here for part of it but I did have a bit of difficulty hearing him. I do think we have a very good Mental Health Act and I do think we do need to look after people who have mental disorders.
The Chairman: You talk about the role of the case manager; please tell us what the work would include. I ask that because Francesca referred to a consumer group suggestion that involves the notion of a patient or consumer advocate.
I am trying to understand whether that idea, or at least what I envision as her idea, is what you mean by the case manager.
Ms. Nazif: We have mental health teams that include social workers, nurses, psychologists, and therapists. The team sees my daughter and part of the team is the case manager.
Whether the case manager is a social worker, nurse, or psychologist is immaterial because the manager is responsible for organizing and planning the care plan. The case manager makes sure that my daughter gets access to the services and resources that she needs. We go to the case manager if she needs housing rather than looking for appropriate housing on our own.
The Chairman: It is a one-stop shopping model.
Ms. Nazif: Exactly.
The Chairman: We have struggled with the problem between the privacy rights of consumers and the need for caregivers, in many cases family members, to understand at least something about the situation. That tension exists everywhere in the country and the predominant view is that the privacy rights trump the rights of the caregiver and you seem to be arguing for the other side. How do you think we come to a firm conclusion on that question?
Ms. Nazif: I do not know exactly how you will come to a conclusion but it just does not make sense. It was natural for my doctor to discuss my mothers Alzheimer’s disease with me, and Alzheimer's is a mental condition. Her brain was not working right. My daughter's brain is not working right either. The brain is an organ like the heart or the kidney, and when your brain is not working right, you are not able to think very clearly.
If the doctor is going to talk to me about my mother's Alzheimer's condition and about the treatment plan and care, why should the doctor not talk to the family or to me about my daughter's mental illness?
I do not want to know all the confidential topics that they might discuss; I have no interest in them. As a matter of fact, I know too much about her life, if you know what I mean. I do not need to know the intimate, private things. We need to know the diagnosis and the chances for her for the rest of her life. We need to know what we can expect; the role of medications; the types of available social rehabilitation; what type of medication she takes; and the prognosis. These are not secret facts. There is somewhere in the committee reports where an Aboriginal group said that privacy just creates secrecy about an illness. We are a family.
Now, there are instances, I am sure, where families are not therapeutic for the individual. We are family members who love our family member, and we give support to our loved one 24 hours a day. I mean, I will be there for my daughter as long as I live.
The Chairman: I agree with you; I know some cases where family involvement would actually be very hurtful to the patient, particularly the cases of abuse.
Therefore, what you would do is have the case manager or the doctor make that judgment based on the work they have done with the patient.
Ms. Nazif: I hope my involvement would be from the start of the diagnosis, I hope that the professionals would understand that I am a caring, supportive person interested in her daughter's well-being. I am here to help my daughter and to do that I need to know the treatment plan. I need direction.
I think this four-page fact sheet will be of great interest to you because the Ministry of Health wrote these guidelines to our Freedom of Information and Protection of Privacy Act here in B.C. The guidelines deal with situations where you have a mentally disordered person, the family wants information, and it allows the treating clinician to release information for continuity of care if they feel it is appropriate.
The Chairman: Yours is the clearest position we have had but as you can appreciate, we have had many positions on the other side as well.
Senator Trenholme Counsell: Ladies, thank you for your wonderful presentations. In my province, children at 16 can leave home. At the same time if a child is suffering from a mental illness the parents have little ability to find out or inquire or to become involved in their child’s treatment and recovery.
I believe in New Brunswick that the child would have to agree to the parent’s involvement in the treatment. What is the law here?
Ms. Nazif: I am not sure that I understand all the intricacies of the law, but there is considerable weight given to young people to be autonomous. However, when someone is mentally disordered I think things are quite different.
Senator Trenholme Counsell: Is there something in law that in fact allows the professional to call in a family member?
Ms. Nazif: This fact sheet explains that they can release information. These are guidelines to our Freedom of Information and Protection of Privacy Act. This is British Columbia. There are some examples given in these three pages that discuss things in relation to schizophrenia or mental disorders.
Senator Trenholme Counsell: Thank you very much. I think this is worthy of study.
Ms. Nazif: I also would like to say it is not always respected by the mental health profession and many of them do not know anything about it. We as families sometimes go to the office or fax it to them and say did you know this document is here then said say oh, well, I guess we can talk to you.
Senator Trenholme Counsell: If the first point of contact happens to be the physician who is suddenly faced with the situation you need the law behind you, with you, to contact somebody and find out something.
What happens in B.C. if a patient is violent while in the hospital? What happens when the person is in the emergency room? Does that person have to go to jail overnight even though the person is mentally ill?
Ms. Nazif: I do not know, frankly, what happens all across the province but I do know that I was part of the best practices work here in B.C. We recommended that all community hospitals have a “soft room” where people cannot hurt themselves. These people need treatment, not jail, but they cannot stay in an ordinary room because they are violent. The best practices are very good to look at in terms of the cross-country recommendations.
Senator Trenholme Counsell: I think every hospital can call a security person overnight, but I wonder whether such emergency coverage is available in your smaller hospitals.
Ms. Nazif: I do not know for sure but I do know of the recommendation for soft rooms.
Senator Trenholme Counsell: It is preferable to keep the person in that hospital setting.
Ms. Nazif: Yes.
The Chairman: Doris, do you want to make a comment?
Ms. Ray: Well, I learned last summer that all psychiatric patients must be in a secure ward or a secure room. My son was not a danger to himself or others, but he was worried that his anxiety attack may come to the point where he had lost control.
I believe that if he had ever been in the mental health system whether violent or not he has to be in a secure ward. We live halfway between Vanderhoof and Burns Lake; both communities have small hospitals but no secure beds so he could not stay in either of those hospitals.
Senator Trenholme Counsell: Without misrepresenting this report, I do not think small community hospitals could ever provide that service, I think the man or woman would have to go to a larger facility.
You could not do that in the community hospitals. Are you saying that too often they have to spend a night or two in jail until they can get to a proper facility?
Ms. Ray: They might, and if they have not been previously involved, they automatically go to jail, yes.
Senator Trenholme Counsell: In a modern, just society that should not happen, that is wrong. Thank you.
Ms. Allen: My son was never been involved in any violent behaviour so the hospital staff was overwhelmed, surprised. He had never done anything like this before but when the incident happened there were no security guards on that floor. They had to buzz for a security guard two floors down. If there had been someone, there right on that intensive care unit it may not have happened. My son spent two days in a barred hospital room until they moved him to the jail.
Senator Cook: Your testimony is compelling. I find myself wandering all over the place.
Joan, in the eight key priorities you talk about family and family support services and the training for mental health professionals. Let me go to the training of mental health professionals.
In my province of Newfoundland and Labrador, we have nurse practitioners, and nurses who deliver services in mental health primary care.
Do you see the same need for nurse practitioners, given the shortages of psychiatrists across this land, to work with family counselling services?
We hear problems and I try to find solutions right away. I realize it is not easy but when we have to look at the availability or non-availability of health professionals then I believe we have to become innovative and offer up that kind of advice.
When you talk about legislation issues, the three of you need to understand that we are a federal group trying to cope with provincial Mental Health Acts and if there are gaps in the system there has to be some way to develop a strategy to interact with that because if not, we will fail. Without a continuum of appropriate legislation, we will still be in silos.
I would like to go back and offer you what has happened in my province. When the budget came down in February the Waterford Hospital, which is our mental hospital, opened up a short-stay psychiatric unit.
I realize I am in an urban setting but I also live in a small province in that setting. I think that would have helped the situation and relieved especially Doris's anxiety but I find it incredible, Bonita, that a person, regardless of what the illness is, would be charged as a result of behaviour in an intensive care unit. Surely, the hospital should have taken some responsibility for the incident rather than put him on a path of nine years in the justice system.
That system could not cope with the problems and the more we listen we see that there is a big gap in the prisons across this country. If you commit a crime and go to jail it is difficult enough I would think; there is some remorse no matter how hardened you are, but to have an undiagnosed or even diagnosed mental illness compounds the problem.
I am preoccupied with what I am reading about Karla Homolka. It is not for me to pass judgment if she needs continuing care or if she does not, I do not know.
Would any of you like to comment on this?
Your family advisory committee is indeed commendable. Do you think you will ever get to the point to move beyond the family and offer a family type of support services for those who have no family?
Ms. Nazif: A family support service for those who have no family, I think that would be a wonderful goal for us to have. We tend to feel, though, that most people with serious mental illness do have family, they just need someone to find them. The family often rejects the mentally ill because they are uneducated about mental illness and have lived without any support to understand the strange behaviours manifested by their ill family member. We take the viewpoint that the family has abandoned its child because of those reasons. Does that answer your question?
Senator Cook: Yes, you still emphasise continuing education and good communication.
Ms. Nazif: Yes, we need education at every level. The Canadian public is unaware of the whole issue of mental illness. It is ridiculous that the federal government does not have some kind of a broad campaign to educate at all levels. We have a puppet program from the B.C. Schizophrenia Society that goes to elementary schools. The consumers operate the puppets and they talk about mental illness with Grade 4 and Grade 5 students.
I realize education is a responsibility of each province, but we must mandate the education about mental illness into the school curriculum. You can have all the resources and good things available for people, but if it is not mandated, it will not reach the classroom. I was a teacher librarian. The teachers have so much to teach that they will not teach mental illness classes unless they have to. It is not because they do not want to, but they just have too many things to do.
We must educate this generation in order to benefit all of our society.
Senator Gill: We have to admit that the people living in the street are increasing all the time in all the big cities like Vancouver, Toronto and Montreal.
You mentioned that maybe it is a matter of education, but many people have given up their responsibilities. I am talking about parents that have left their children. That is something else than education. I would like to have some comments on that because people are going on the street or to jail, street, jail, jail to street.
Ms. Nazif: I agree that education cannot solve everything and it certainly is not the reason why we have these problems but we have a huge homeless problem all across Canada. Where do we get the help for these homeless people?
Housing for people with serious mental illness really does have to meet their needs. Some of them might not be able to respond to a SIL unit, but perhaps they might do well in a centre where they have a bedroom of their own. In these centres, the mentally ill receive their meals and have access to on-site showers. This is something that they might be able to latch on to because they live in the back lanes and alleys and they are not ready to cope with the things in society that you and I take for granted. You have to provide things for them that they are willing to use. It also means that we need funding for people to go out and, if you like, befriend these people, and gain their trust. You cannot sit and wait for these people to come in for an appointment. First, they do not know what day it is because they do not have a calendar, they do not know what time it is because they do not have a watch. People have to go out to them and help them with their needs. I really do feel we are failing these people. I find it absolutely disgusting that our country is doing this.
Ms. Ray: My son was an adult at the age of 21 when he had schizophrenia; I should not be justifying this because there are many, many people with schizophrenia who live in group homes in various towns throughout British Columbia.
My son is in a monitored group home now and things are working like clockwork, but before this terrible thing, he lived in Nanaimo in a series of group homes. After the terrible event, I spoke to some of these house parents. The house parents were with him 24 hours a day, they were his family. The system did not hear what the house parents had to say about my son. They were his family and cared a lot about him and I think they should maybe be included in family things.
Senator Cook: So, there is a nuclear family and the additional family that Joan referred to, but there is also a different connotation because this is where these people have found themselves.
Ms. Ray: We keep in touch by telephone and we visit and they visit us but the house parent is there, you know to be sure that my son takes his medication et cetera. The house parent had to make a scene to get my son admitted earlier in the year.
I did not know his situation had gone downhill so badly but the house parent did and had a tough time getting my son admitted. In Nanaimo, things have improved so much because of these terrible incidents. That town went through the fire and things have improved a lot. There is a good example happening there.
Senator Cook: Bonita, the on page 3 you say,
The reformed community-based care and resources, promised upon the deinstitutionalization of the mental health system, appear to have short-changed those people in trouble with the law and those who may temporarily present a danger to society.
We failed and I think we have our catching up to do because we took people out of a place where they felt safe, where their coping skills were not the best, and we just put them out and there was no family support.
I think we will have a challenge to get back what we once had. I worked in a drop-in social centre. First, it was just a place to come out of the cold, and then it gradually evolved into a little program. We were short of money and found some nursing students who did their electives and we went on walks and then we found some old computers and it grew.
I will tell you, that social centre is home to 95 to a hundred people on a regular basis. When we look at “family,” I think we need to think outside the box.
Ms. Nazif: I would just like to go back to the confidentiality issue. I know there are family members in this room who have had their teenage child suffer from a psychotic disorder as young as 15 years and 16 years, and their family doctor refused to see them.
This is so very absurd and I think whether the person is 15 years or 35 years, the doctor’s refusal to speak to the family only increases the discrimination and stigma of the mentally ill. This is awful. It is so absurd. It is so wrong and I really hope you can make some changes concerning sharing information.
Ms. Nazif: I remember the previous witness speaking about involuntary treatment. Would you leave a family member with Alzheimer’s wandering around in the streets? Would you leave a developmentally disabled child out on the street without shoes? Would you leave a developmentally disabled child alone without health care or treatment?
It seems to me when you give these people their civil rights you are giving them the right to be psychotic and the right to die. That is all there is. They need care.
Senator Callbeck: Continuing with that confidentiality issue, it says a health provider may decide to give out that information. Is that health provider the doctor or can it be a nurse?
Ms. Nazif: Yes, the case manager makes the decision after consulting with the psychiatrist who is in charge of that patient as well. Yes, the nurse or the social worker may make the decision.
Senator Callbeck: One person can make that decision.
Ms. Nazif: Oh, I am not positive about that. I think they would probably want to make a joint decision, the team that is looking after the client.
Senator Callbeck: Joan, you mentioned stigma and discrimination as a major problem and I am sure that all three of you agree with that statement.
You talked about mental illness education becoming a mandatory part of the school system. I noticed in your commentary a reference to a program called “Reaching Out,” which is good, but you want it mandated.
Ms. Nazif: I was a teacher librarian. I was in charge of all the school's resources and we would get wonderful resources and I would present them to the staff at meetings but still teachers do not necessarily have time to do these things.
“Reaching Out” is an excellent resource produced by the B.C. Schizophrenia Society. It is very acceptable to teenagers because there are three or four teenage actors and five young people with schizophrenia in the videa. They have a great discussion about schizophrenia.
All the lesson plans are there, everything is there, even a teacher who knows nothing about mental illness could very adequately teach that program in two or three lesson.
Yes, I think we need public education for everyone in the country but if we start with youth, they are our next citizens, they are the ones who are going to carry that knowledge with them.
Senator Callbeck: What grade would you initiate that education?
Ms. Nazif: Well, I think mental illness education should begin right from the very beginning of elementary school. This particular resource is for senior high school students. When we tried it out with younger students like Grade 8 they just laughed about it, they were not yet mature enough to take it seriously, but the Grade 10 through 12 students responded very affirmatively and they learned, because we evaluated them.
One of the biggest myths with schizophrenia is that people with schizophrenia have split personalities, for example. It is not true. There are so many myths about mental illness that need to be discounted and people need the facts and no one is giving them the facts. Anything that comes out in the media is always sensationalism. We do not hear about the other things.
Senator Callbeck: We were in Regina last week and they find that Grade 8 students respond very well to that type of education.
Ms. Nazif: Perhaps it was more suitable for Grade 8 students. Obviously you can have many programs.
Senator Trenholme Counsell: It is all about diversity in populations, whether it is health, colour, or language. It seems to me that we have to start at kindergarten almost and talk about differences because I know that children who have ADHD whether they are treated or not, they are getting to feel as though they are labelled.
We have to start this sensitization at kindergarten and we must do it understanding diversity, equality, and accepting everybody.
So I do not know, what do you think, I am the one supposed to be listening.
Ms. Nazif: No, I think you are right. There is great diversity in our society and perhaps here in Vancouver we especially feel it with the various different ethnic groups, for example. It is very important to teach diversity and acceptance that people are the same but they are different.
Senator Trenholme Counsell: We need to start that very early.
Ms. Nazif: We should start that very, very early.
Senator Trenholme Counsell: If we are going to talk about sexual orientation as is becoming apparent in high schools then you have to prepare people to embrace all differences.
Ms. Nazif: I think we need to start a lot earlier than we think; the young people are ahead of us. They are perhaps more ready for these things than we think they are.
The Chairman: Well, let us face it, when you get to be our age it is much harder to change our minds than it is with young people. That is just a function of growing old. It is amazing to me that the ultimate proof is looking at data, for example, on the same sex marriage question. Our children wondered just what the issue was.
Senator Pépin: It is only about, as we say, at what age we start the education. I have a granddaughter who is six years old and she is in the first grade. There are so many cultures in her class yet, she does not see them. Our children live and learn in this environment. I made the mistake myself and said oh, Carolina is so beautiful and so nice, what a beautiful black girl. She said, “Come on, she is not black, she is my friend.”
I think that if we start early it will be normal and they will be much more protective to friends rather than to try to discriminate against them.
Senator Gill: I think we just mentioned that with the young people there is not too much difference, not too many difficulties, but I think people have to accept the fact that there are differences and that we have to respect those differences. We have to respect and we have to be educated in this way.
I think we have to go along with the fact that there are many differences but the differences can enrich our lives. We are not inferior or superior, we are different and we have to respect that. That is a big problem in our society right now.
Ms. Ray: I do not think we should homogenize all these things because mental illness, schizophrenia, is an abrupt change in the person. It is an illness, a disease of the brain, and it is so devastating that your friend in school all of a sudden becomes a very different person.
I think that in the case of serious mental illness, we have to emphasize that it is a disease, whereas these other things, such as psychological illnesses and homosexuality are more everyday occurrences. I mean they do not change overnight as they do with these mental illnesses. Young people, old people, nobody understands really, until they understand that it is a disease like a heart attack or cancer. That is my perspective.
I agree with Joan, that we must educate our children schools because it is going to happen to some of their friends if not themselves very quickly, in high school or university.
Senator Cordy: We have certainly heard stories from parents. I remember dabbing my eyes a bit while a mother told us about her son. Her boy was an honour student and top athlete, and suddenly had a mental illness and did not get one phone call from a friend. The mother said that if her son had broken a leg he would have received phone calls, gifts, notes, and letters. It was as if the child had dropped off the face of the earth and what a torment that was for a parent.
I would like to talk about “Reaching Out.” You are right, you can have the best resources in the world but if they are sitting on the shelf in the library or in the classroom, they are not much use to anybody.
Does the program focus on stigmatization that certainly is so prevalent in society or does it focus on what it is like for a child living with a family member who is mentally ill or does it focus on the children themselves or all of the above?
Ms. Nazif: Are you asking about this particular resource?
Senator Cordy: Yes, I want to know about this particular resource.
Ms. Nazif: Well, this particular resource teaches high stool students about the symptoms of psychosis or mental illness and it has a very strong message in there that if they feel a friend is changing and is very different, that they need to get help.
I think we all know that young people do not like squealing on each other, so this is a very big part of the message, if you are worried about your friend whose behaviour is very different over the past six months, who just does not seem to be the same, go to someone for help. Go to perhaps the counsellor in the school or the teacher or the principal or perhaps that adolescent's parent. We are not asking them to take responsibility because they should not, but we encourage them to get help.
The program teaches symptoms and the symptoms are very broad because different mental disorders have a variety of symptoms. It show fives young people with schizophrenia who talk about their illness quite openly. A little drama shows the change in a young man. He looks dishevelled, but his friend decides that she has to do something about this and she gets help for him. The program encourages the kids to be aware of the symptoms.
Senator Cordy: The grant from Health Canada was simply to distribute the program.
Ms. Nazif: Actually, the B.C. Schizophrenia Society developed it themselves. I was part of that development, and we did not have the money to distribute it across Canada. The Schizophrenia Society of Canada made a request for the grant and Health Canada handed over $200,000 for distribution costs.
We contacted all of the high schools in the country and if they expressed an interest in the program, we sent them the resource. People are free to reproduce the video. We are not out to make money with this, we want people to have the information.
Senator Cordy: Have any departments of education taken it up?
Ms. Nazif: I think education is extremely important. Many of the counsellors in schools really know nothing about mental illness. They have learned all kinds of things about relationships, but they do not know anything about mental illness.
As I mention in my brief, I think this should be a basis of all of these types of programs because they should all be aware of the symptoms of major mental illnesses. They deal with young people every day; they are on the front lines. We could help so many children if we educate the teachers and the students. It should be part of their curriculum as well as the students' curriculum.
This resource educates teachers and parent groups, people who are trying to understand their child's illness, and it is effective with young people that are in recovery. It helps them to see what other people have done and how they have managed their mental illness.
Senator Cordy: Your family centre is amazing. How do families find out about you?
Ms. Nazif: I am not involved in any centre but I was part of the group from the Schizophrenia Society that developed this resource.
Senator Cordy: I am referring to the Family Advisory Committee.
Ms. Nazif: Sorry, we struggled along for ten years trying to get a voice in the mental health system and we did sometimes have support. We met regularly with a psychiatrist but nothing ever happened. It was the same stories year after year, the same issues and the same problems remained. Families were not part of the treatment team. When senior management made a commitment things started to happen.
Kim Calsaferri, the head of Rehabilitation & Recovery, gave us her support and we went to senior management and told them what we wanted and how we needed to be involved. We did not expect to make all the decisions but we wanted to be a part of them, just as consumers want to be part of them.
It took 10 years to get a full-time social worker to coordinate family support and services. I believe that this should be a model for all of Canada because when there is family support the client will get better.
Senator Cordy: Joan, you are very clear on compliancy of medication.
I am wondering, Bonita and Doris, as mothers of sons suffering from mental illness, how you feel. Witnesses from earlier today said that nobody should be forced to take medication. I am interested in how you feel about that issue.
Ms. Ray: The old medications had severe side effects, sometimes the side effects almost seemed worse than the disease, but the newer medications now do not have as many side effects but with my son, they seemed to work for a while and then stopped working.
When this thing happened in Nanaimo, he was on many medications and so I could see where it was not great but now he is medication that works well. We must monitor and listen to the mentally ill. Those were the big issues with my son. I have talked to other parents too, and they say their children have similar complaints. They know when the medication is not working for them but there are medications, so many of them out there, and the one that my son is on, what they call the one of last resort, called Clozapine, seems to work very well for him.
Ms. Allen: Yes. My son, as you were mentioning, was on some drugs in the past that had terrible side effects but they discovered that Lithium works well for him. He has had long periods of success, seven years without a breakdown. I am hoping that will not happen again, but before his last episode he was “toxified” by the Lithium and he was very physically sick from it. They took him off it, which I feel led down the slippery slope to another breakdown, because it takes a while to build back up again. He is back on Lithium again and he seems to be doing okay. They have to check his blood every month to ensure “toxification” is not setting in again. Without it, I do not think my son would be alive today.
Ms. Nazif: I would just like to tell a story, I do not think she would mind if I told this story, her name is Loyanne, she has a mental illness, and she speaks publicly about her life all the time. Loyanne was committed to our large mental institution here probably a dozen times; it was a revolving door. She was committed, she would be treated for a few months, she would be given medications, she would walk out the door, the medications would be dropped in the first garbage can she found and there she was until she was recommitted. Finally, Loyanne was put on extended leave. You have to get the person's cooperation for this and she agreed. When she left the hospital, she understood that if she was not compliant, if she did not take her medication, if she did not come back for her appointments with the mental health team she could be recommitted.
Mentally disordered people do not like being in hospital. So Loyanne went, housing was provided and she said she was there for about six months just lying on her bed taking this medication and she had to take it because she did not want to go back to hospital. After about six months, she finally woke up and she now has a life. She has three daughters.
She asked us how we could let her live on the streets. She said that she was sleeping on the streets, sleeping in cardboard containers and eating out of garbage cans. She said, “How could you show me so much disrespect by allowing me to go out of the hospital and not to take my medication?” This is what Loyanne talks about. The medication saved her life, gave her dignity and the opportunity to be a real person.
Senator Pépin: The committee believes that if there was a way to oblige government and all Canadians to recognize the inequality and the injustice towards people suffering from mental disability it will be if we were able to adapt the Charter of Rights of the mental health consumer. With that charter, the people suffering from mental disability will have access to services and have treatment without discrimination. After that, they will have also early identification, the diagnosis and the right treatment. They will have services adapted to their culture and their own language.
Some people believe that charter will reinforce stigma because those people will have different rights.
What you think about that and what is your perception? Maybe I did not explain it well in English.
Ms. Ray: Well, when my son received a conditional discharge from the institute where he actually received counselling and therapy. He met up with people who told him that medication was going to cause his brain to decay and a couple of times he went off it and was hospitalized.
What really turned the tide was when he received counselling from a fellow that turned his whole attitude around. In the institute, he had developed this us-versus-them attitude. The attitude that he developed, with the help of his counsellor, that turned things around was I am part of the team to make me well. He actually presented to the review board because by this time he was convinced that this fellow was right, hey, I want to get better, and that convinced the review board also that he was on his way to becoming a good member of society, there was hope for him.
Ms. Nazif: I think we have to remember that the brain is sick, and when the brain is sick, I do not think it has very good judgment about what to do about keeping the rest of the body alive. If we find someone unconscious on the street, we will rush in the ambulance and we do not wait for them to waken so we can ask them if they want treatment. We are going to give them treatment, whether it is an accident or a stroke, and I think with the mentally ill, we need to respect the fact that they cannot decide for themselves. They do not realize they are sick.
I think that as a society we have to respect their dignity and treat them, because otherwise it is hopeless despair; they will be psychotic all their life. It is like people with Alzheimer's; we do not leave them wandering around in the streets.
I think we are giving them their rights by giving them their right to treatment. All Canadians have the right to good health care. Why should people that are psychotic not have the right to good health care?
Senator Pépin: Should we stay as it is right now or carry on with the discussion to have a special charter of rights for them?
Ms. Nazif: Well, I think we need to look at good mental health acts across the country.
Senator Pépin: In other cities, we met with people who told us that if a person has a stroke you call the ambulance but if there is an incident related to someone with a mental disability, they will phone the police who come for the person. When the person is in the hospital, they wait for hours with the police and are at the end of the line for treatment.
We met with people who work in the correctional services to confirm what you say. They agree that many mentally disabled people have very long wait times at the hospitals. The police asked us to visit the hospitals to see how to come up with a better system.
Ms. Nazif: I think our major emergency rooms and our hospitals in major cities should always have qualified personnel capable of treating psychiatric disorders so that people do not sit for hours. I even know of situations where people have brought in their child with schizophrenia and the child has left because of the overly long wait time.
This is a crisis, just as the crisis is for someone else it is a different kind of crisis. We need to have psychiatrically trained personnel in our emergency rooms.
Ms. Allen: On the topic of emergency rooms, we found that emergency rooms do not want to look at mentally ill people unless they have committed some act. Otherwise, as you say, they stay at the back of the emergency room. Often the staffs refuse treatment because they say they “feel” like they need help. Their doctors tell them to do that, to go to the hospital if they feel an episode coming on. However, they do not get very much cooperation in emergency rooms.
I realize that emergency personnel are busy and perhaps there should be a different emergency area for mental health issues.
I have taken my son into the emergency room in a manic state and, trust me; it is an awful thing to do. I mean, he is walking around telling people they are witches and grabbing the magazines out of their hands and scaring them and I am sitting there thinking oh, my God, what is he going to do. I had to argue with the doctor about his condition. They tried to tell me that he is on drugs or he is this or that. I said look, I know what he is. I know he is mentally ill. He has records, can't you get them? No, it was just too much trouble. You have to get into a major argument with these people. So something needs to change there, that is for sure.
The Chairman: May I thank all of you for coming and taking the time to be with us this morning.
The committee adjourned.