Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue 15 - Evidence - May 9, 2005 - Morning Meeting
HALIFAX, Monday, May 9, 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.
[English]
Mr. Chairman: Good morning. Let me first thanks witnesses for coming out on a typical Halifax morning. I can say that, having lived here for so long. I am really delighted that you are here and I was delighted to have a chance to chat with a few of you before we started. We are interested in hearing from you this morning as individuals who have been involved with the mental health system at very much a personal level.
What we are trying to do as we go across the country is to get some understanding of how the system needs to change in order to better serve individuals and their families. There is obviously a lot that needs to be done, beginning at the root, changing public attitudes, attacking the stigma problem head-on. I should tell you, by the way, that a couple of countries, Australia in particular, have done an extraordinary job of that. Australia is in its third five-year plan, so it has been at it for about 12 years. All of the public opinion polling in Australia, which has been tracked every year, has shown a huge change in public attitude as a result of a concentrated effort.
Lest you get too discouraged about that, let me remind you to think back 20 years or so to what Canadians thought about when they saw someone in a wheelchair and how, essentially, the physically handicapped were somewhat stigmatized, although never approaching the level of the mentally handicapped. So, the reality is that it is possible to change attitudes. This we must do, but we clearly also have to improve services.
We are here this morning to hear from the four of you and hear your thoughts on what we need to do to change the system. What I would like to do is have each of you make your opening comments, beginning with Susan, and then we will ask you questions collectively rather than ask questions at the end of each presentation.
Susan, I want to thank you very much for attending here today. Please proceed.
Ms. Susan Kilbride-Roper, as an individual: I am a 46 year-old woman with a diagnosis of a serious mental illness, bipolar disorder — or, as it is sometimes still known, manic depression. The very name of this disorder intimates the duality of its nature. This illness is characterized by two distinct phases, depression and mania, or, as one textbook defines it, "a major affective disorder in which an individual alternates between states of deep depression and extreme elation.'' It is, of course, much more complicated than just alternating between depression and elation. In order to personalize this illness, I will tell you a little bit of my story and then I will address some issues that are important to me.
In hindsight, developed after many years and much therapy, I now realize that I had a school life marked by depression, including one in my sixteenth year, the effects of which caused me to leave school in the eleventh grade. I repeated that year and then graduated from grade 12, after which I married and gave birth to a daughter four months later. After a painful episode of postpartum depression, I went on to work in the business world for 15 years, raising my daughter on my own for 12 of those years. Again, looking back, I realize my marriage dissolved as a result of my illness. Before my diagnosis of bipolar disorder, I worked for 10 years in the stockbrokerage business. My spare time was dedicated to volunteer work, most notably as a board and committee member for Veith House, a non-profit organization specializing in services for low-income families, as well as the United Way, the Terry Fox Run and the Canadian Red Cross.
At the age of 34, after working for 15 years, I experienced the most dramatic and damaging of the manic episodes that were to trouble me for many years to come. At this time, I was working as an assistant to three stockbrokers at a national firm, and made a comfortable living. I experienced a psychotic episode that imbued me with the belief that I must follow in the footsteps of St. Francis of Assisi and dedicate my life to helping the poor and animals. I believed this quite literally and set about becoming a successful stockbroker in my own right in order to meet the right people and make the money required for building centres for those with little or no income as well as animal shelters. I was ecstatic when I was hired as a stockbroker, feeling I had broken through the glass ceiling for women. However, this manic episode was also marked by profligate spending and a subsequent descent into debt, poor decision making, the alienation of friends and family, particularly my 15-year-old daughter, and substance abuse.
The spiral into depression that followed this episode and a worsening of the alcohol addiction that had taken root in my late 20s led me to enrol in a 28-day program run by the provincial addiction and drug dependency services. As a result of my treatment, I voluntarily left my place of employment and withdrew from all my volunteering commitments in order to concentrate on my recovery from addiction. However, my struggles with addiction continued beyond the end of the program and no investigation into the possibility of an underlying mental illness was initiated at that time.
In the fall of 1995, following a hypo-manic episode, which, in turn, was following by a depression so severe that I considered suicide, I entered the formal mental health care system and was finally diagnosed with bipolar disorder. I learned during my five years of cognitive behavioural psychotherapy that my addiction was a form of self-medication and that it was common, in cases such as mine, for substance abuse and mental illness to occur simultaneously.
I commenced a regimen of psychiatric medication, which I expect to continue for the rest of my life. While this controls the extremes of my mental disorder, the physical side effects of this medication include huge weight gain, hand tremors, and, because of the effect of the medication on glucose levels in the blood,a three times greater than normal likelihood of developingtype 2 diabetes, with which I was, in fact, diagnosed three years ago.
At this point, I wish to take the time to discuss some issues that I feel very strongly about and ones that require our increased attention. I should like to speak about the need for more readily available psychotherapy. Statistics prove that medication alone is not as successful as a combination of both psychotherapy and medication. Other forms of therapy are not available to those of us on fixed income or incomes that do not allow for the sometimes high cost of therapy through psychologists, social workers and alternative therapists.
More money has to be funnelled into front-line services. For those who are fortunate enough to be working for employers with employee assistance plans, there is the option of counselling for a set number of visits — usually less than 10 — or services up to a certain dollar value. However, after the allowable number of visits is used up, the employee must pay out of pocket for further services. Depending on the issues, the employee/consumer is dealing with, appropriate therapy may take many years and continue to be a drain on financial resources. Many choose not to pursue additional help and thus become susceptible to continued hardship from untreated mental illness.
For those who are unemployed, there are fewer options for therapy. A six- to eight-month wait for psychiatric services is common if one tries to enter the formal health care system before an emergency arises. From my personal experience and from those stories shared by members of my support group and other consumers, many, if not most, psychiatrists in Nova Scotia dispense medication to their patients and monitor medication levels according to their immediately evident effects but do not offer any form of psychotherapy, a service that has proven to be effective and even crucial to a meaningful recovery from many forms of mental illness.
Currently, I am recovering from a devastating episode of depression, which caused me to lose my job and to withdraw from all my volunteer activities. I am slowly making my way back to a state of mental health, but will not be able to so without the assistance of a psychiatrist and a psychologist. Our provincial health plan covers the cost of psychiatric services, but does not cover the cost of psychological services. I must pay for this unassisted by any private medical plan. My family is surviving on one income, which is a hardship, albeit necessary for my recovery.
My daughter, who has been diagnosed with unipolar depression, is currently receiving psychotherapy from a psychologist, therapy that is costing her $130 per visit. The health plan at her place of employment covers a maximum of $500 per year for this type of service; therefore, she, too, must pay out of her own pocket if she is to receive a therapeutic level of care.
In the Citizens for Mental Health Mental Health Priorities of the Voluntary Sector: Development of a Framework for Action document produced by the Canadian Mental Health Association in June of 2004, one of the seven key issues identified at the national synthesis forum was an improvement in services for people with mental illness. The guiding values and principles underpinning the framework cites as a key recommendation the ensuring of equitable access to appropriate housing, training and education, employment opportunity and health services as basic rights.
Specifically, the report makes the following points: working with other levels of government and the voluntary sector to ensure that health services promote early detection and recovery from mental illness and support community- based services that can assist consumers to live and thrive in their communities; ensuring equitable access to mental health services; developing a national health human resources strategy; promoting and supporting best practices; and supporting model programs.
I am passionate about the education of our youth regardingco-morbidity of substance abuse and mental illness. There are many excellent programs and facilities in Nova Scotia dealing with youth and mental illness, such as Laing House in Halifax, and youth and addiction, such as the Choices program. However, there are many who fall through the cracks. If our young people could know that self-medication is often an indication of aco-occurring mental illness, they could be forewarned through the school system and ultimately more prepared to handle both issues at a much earlier age than I and many others who have struggled to survive addiction and mental illness.
Alcohol and drug abuse are very common among people with bipolar disorder and mental illnesses. Research findings suggest that many factors may contribute to these substance abuse problems, including self-medication of symptoms, mood swings either brought on or perpetuated by substance abuse, and risk factors that may influence the occurrence of both mental illness and substance use disorders. Treatment for co-occurring substance abuse, when present, is an important part of an overall treatment plan. It is my feeling that it is crucial that, when addiction presents as the primary diagnosis, evidence of mental illness be explored.
When I entered my 28-day program to address my alcohol abuse problem, a psychologist was assigned to me. This psychologist had to divide her time among many clients, and there was no attempt to determine whether I was suffering from an underlying mental illness that may have been at the root of my self-medication through alcohol. As a result, I was not diagnosed until two years after completing the program. Because I was unable to work during this time, I went from full-time employment to employment insurance and, finally, to social assistance, joining the many who rely on the system for financial support.
I know that today the information I was lacking 12 years ago about my dual condition is much more readily available, particularly through Internet sites dedicated to the subject. There are good programs for at-risk youth or those who have already appeared on the radar. However, a public education campaign through educational institutions and youth service providers concerning the topic of mental illness could lead to our youth seeking medical attention much sooner and reduce the potential damage inherent in all types of addiction to their young lives.
No matter how far along the path to recovery we may feel we have travelled, relapse is always a danger and can be prevalent, depending on the type of mental illness suffered. The reasons for this are varied. A significant event, such as the death of a loved one, loss of employment, physical illness, and so on, can initiate a descent into illness. A change in body chemistry can also be at the root of relapse, as can a return to addiction and self-medication.
Psychiatric medications often lose their efficacy and a whole new treatment regimen must be determined by the primary care physician and commenced. The period of time that may elapse between onset of the new treatment and relief from symptoms may take weeks and even months, and if the new treatment is not successful, the whole process must begin again, extending the period of illness. Just such a process has hindered my recovery from the two significantly lengthy periods of depression that I have experienced in my life, having a negative impact on my recent employment and future ability to work, since my resume now shows significant gaps in my employment history.
Developing strategies for periods of disability when we are employed is crucial. The success of our return and reintegration into the workplace derives from preplanned accommodation through supportive strategies at work. Unfortunately, many employers are not prepared to deal with us as mental health consumers requiring sometimes finely tuned workplace accommodations. Sheila Hayes Wallace will speak on that issue in more detail.
I wish to take a few minutes now to talk about what has worked for me in my recovery and in the recovery of many others outside of the formal mental health care system. Acupuncture, homeopathy, massage therapy, light therapy, body work, naturopathic medicine, yoga, reflexology, Reiki, neurolinguistic programming, nutritional supplements, therapeutic touch and herbal medicines are but a few of what are now believed to be effective alternatives to traditional medical therapies. Currently, in this province, with a few exceptions, such as massage therapy, which is covered by some health plans, and acupuncture, which is utilized to great effect in treating addiction, there is no way to subsidize the cost of these alternative therapies. Research and funding for these important tools for recovery is necessary. The practitioners, many of them certified by national organizations, are available only to those who can afford their services.
The value of self-help and support groups in recovery has been very well documented. My own experience as both a member and a leader of one such group has given me an intimate knowledge of the benefits that can be derived from sharing the joys and sorrows that we as people with common problems face on a daily basis. Financial support for promoting and funding this important area is much needed. The self-help movement is growing, but could do so at a much faster pace.
I have obtained two jobs, for a total of five years of employment, that can be attributed directly to my involvement as a volunteer with various organizations. Mental health consumers and organizations alike should be encouraged to look at this as a way of hiring individuals with mental illness. Both of my employers were aware of the status of my mental health and the nature of my mental illness. Disclosure is difficult for many, but in my case, it worked to my advantage. This may also be the case for others. Regardless, volunteering is an excellent way for the abilities of an individual to become known to a potential employer.
In conclusion, each of these avenues I have presented opens up opportunities for wellness and growth for a population in great need of both. I strongly urge the committee to consider that, when looking at solutions to problems evident in the mental health care system in Canada.
I am greatly encouraged by the work being conducted by this committee in addressing the need for change in mental health care across the country. I wait with anticipation the results of your work and thank you for this opportunity to speak about issues that are important to me as a mental health consumer.
Mr. Chairman: Thank you, Susan, for your very thoughtful statement. That is terrific.
Next, we have Roy Muise. Please proceed, Roy.
Mr. Roy Muise, as an individual: Good morning. May I be among the first to welcome you to Halifax, Nova Scotia. I actually had an opportunity to speak with Senator Cordy on, I believe it was, Wednesday or Thursday of last week in Ottawa.
I have been living with a mental illness for almost 30 years. I have been following the work of this committee from the beginning and have read with great interest your interim reports. I will begin by telling you my story, although, as you will hear, it is similar to many stories you have heard from all over this country.
I first received psychiatric treatment in the 1970s. I had what was then referred to as "bad nerves'' and was put on tranquillizers. At the time, I seemed to have it all. I was happily married, we had begun our family, and I was in business for myself. In time, my condition worsened and, in 1979, I was hospitalized for the first time with a "nervous breakdown,'' or what we recognize today as depression.
The experience, to say the least, was horrible. This was at a time when it was very common for people with a mental illness to be extremely overmedicated. I refer to this time as my "zombie days,'' since the term describes perfectly the way I felt. It was as if I had lost all control of my body. I spent three months in hospital, and when I was discharged I could barely function.
Luckily, my psychiatrist back home got me off my medications as quickly as possible. I made up my mind at that time that I would never go on medication again, nor would I go back to the hospital. In retrospect, that was a very bad decision. I somehow made it through the 1980s. I lost my business, my marriage broke up, and I became a person that I really did not like, but I refused to admit that there was something wrong. I was determined not to go back to hospital or back on medication.
Then came the 1990s. I became very ill throughout most of that decade. I attempted suicide twice and came very close on numerous other occasions. I had many hospitalizations and was on many different medications over the years and even went through a series of shock treatments.
I learned that our mental health system, although still far from perfect, had greatly improved. In hospital, I was treated with respect and kindness, but I could see how overworked everyone was. At this time, I educated myself on depression and was willing to try anything that was suggested in order to get well. Nothing seemed to work. I would have short periods when I seemed better, but then the depression would come back again. There were many times when I felt like giving up. By the late 1990s, I was no longer able to work and was living on Canada Pension Plan disability benefits, but I kept struggling to get well.
I learned through volunteer opportunities that I had a natural ability to talk with and listen to other mental health consumers, and we all seemed to benefit from that. I also knew that if I was ever well enough to work again I wanted to work with fellow consumers and help them by using my experiences as a guide.
This was a dream that I never believed could happen. As I sit here before you today, I am living proof that dreams can come true. In 2001, I was offered a job at the Consumer Initiative Centre, a program of the Self-Help Connection, an organization built on the power of peer support. I was hired as a peer support worker.
This brings me to the main point I wish to make this morning. Our mental health system is in crisis. Here in Halifax, there is a waiting list of 500 people considered non-urgent for appointments at our psychiatric hospital. That means 500 people know they need help and cannot get it. I am told the waiting time can be six to eight months or longer.
We need to start looking at alternative resources. One such resource is peer support. It can come in different forms. The best known is probably self-help groups, peers helping each other to grow and flourish despite their mental illness. Another form is one-on-one peer support.
I recently had the pleasure of travelling to Georgia to study the certified peer specialist — CPS — program they have there. I have taken the training and passed the exam. This program, funded by Medicaid, employs trained peers in the formal mental health system. The job of the CPS is to offer hope and a role model for recovery to fellow mental health consumers. Our own experiential knowledge is used while working with peers in setting goals and working toward achieving those goals, all supported by the belief that recovery from mental illness is possible.
I should point out that we believe that recovery is not necessarily the absence of symptoms, but learning to live with, through and beyond those symptoms and achieving the life that we want. I have just started doing research across Canada to see if there are similar programs here. It is my dream — and, you know, I believe in dreams — and the dream of the organization I work for that we can start a similar program here in Nova Scotia within the next five years.
In conclusion, I urge this committee to continue listening to the voices of those of us living with mental illness. Remember us as you prepare your recommendations and make them with us in mind. May the Government of Canada listen to these recommendations and act quickly upon all of them. Finally, may the people of Canada welcome us into society as full partners. We are not to be feared or pitied. Remember, we are your mothers and fathers, sisters and brothers, your friends, your co-workers and your children. Join hands and travel with us on our road to recovery.
Mr. Chairman: Thank you very much, Roy. Your presentation raises a lot of questions, to which we will return.
Our next witness is Sheila Hayes Wallace.
Ms. Sheila Hayes Wallace, as an individual: I will give you a little background about myself as well. My family history includes an alcoholic father, who was abusive physically to my mother and older sisters until I was two years old. With no support from her family or any government or private agencies — in other words, no social services or women's shelters — my mother stayed in the situation until a very violent episode got my father's brother involved. My father was given a choice of a mental hospital or jail. The compromise solution was Alcoholics Anonymous and he never drank again.
My father's "double first cousins,'' which means that sisters had married brothers, included a lady who had shock treatments for episodes of what may have been manic behaviour and a man who regularly "got the blues.'' The shock treatments were done in Dartmouth at the Nova Scotia Hospital and were very hush-hush. My own first cousin on my father's side had what was called "a breakdown'' in his teens. He was diagnosed as schizophrenic and now, in his mid- fifties, has never held a job or been married. His years of therapy have given him a gentle humour about his life. Of all the Hayes clan, he says he is the only one who has papers to say he is okay. He does not smoke or drink and finds his religion to be a great source of strength and comfort.
In hindsight, these family factors probably drew me into a profession where I could give out help. I am a registered nurse who has worked in the cardiology field since 1981. Sadly, those who are giving help are notoriously unwilling to seek it. In my own workplace, I have seen a beautiful, university-educated nurse in her thirties come to tragedy. After refusing to take time off work to get help and leaving hospital twice after her observations periods were finished, she died by running into oncoming traffic.
With my first experience of depression, I never had to own up to it. I tried St. John's Wort and some six sessions with a therapist paid for by my employee assistance program, or EAP. Concurrently, I had a minor back strain, and when I returned to work I allowed my co-workers to assume I had been off with a physical ailment. I was on Paxil, an antidepressant, for about a year and stopped it prior to minor surgery.
Within three months, I was showing signs of depression again and only saw a psychiatrist because my manager required a specialist's order to continue a "no nights'' limitation imposed by my family doctor, a general practitioner. This psychiatrist was paid by the hospital to assess me. Luckily, he saw that I was suffering another depression, but could not begin treatment of me due to his contract with the hospital. He phoned my GP that day with instructions about starting me on a specific drug, and recommended follow-up with a psychiatrist. My depression this time was labelled "situational,'' and I continued to work full-time because I was the only income earner. However, my sick time was not compatible with the hospital policy, and I received two written warnings that threatened termination while stating at the same time the hospital's concern for the employee's well-being and referring to the programs offered to help employees, which, for all I know, is the EAP.
My employer scrutinized my work and called me into the manager's office on several occasions to ask for my explanation of events reported by fellow nursing staff. I now know I had a right to union representation at any meetings to help me deal with these allegations. I did not have any warning of what, "Could I see you for a few minutes,'' would lead to, nor were the other parties ever named so I could have a chance to ask why I had not been approached by them first if they had a question or a concern. I decided to apply for another position, which would have meant a regular day schedule in a day treatment and diagnostic lab, but was unsuccessful. By the first week of August 2003, I was unable to work any longer. I saw the psychiatrist again, had my dosage of Effexor increased, my antidepressant medication, and began regular psychiatric appointments.
In June 2004, having improved quite a bit, I did an 11-week trial in my home unit. This was paid for by the long- term disability insurer, Manulife. The hospital did not contribute because this was "an assessment,'' not a work placement. At the completion of this trial period, my manager said she could not accommodate my need for working days only because this would cause "undue hardship'' for her nursing staff of nearly 70 nurses. She was already accommodating two other nurses who worked days only.
There was a meeting called with my manager, the occupational health nurse, a human resources "labour consultant'' and a representative of Manulife on the one side, and me on the other. My sole support was an employee relations officer from my union, the Nova Scotia Government Employees Union, or NSGEU. Her only action was to ask me, "Why can you not work evenings?'', and to agree that I needed another attending physician's report. The one submitted July 28, 2004, did not state the word "permanent'' in describing my disability and need to work days only. Another report written in October of that year stated that my disability was indeed permanent and that, in addition, I was to work no overtime hours.
According to administrative policy, I was entitled to have the human resources department respond to my needs by trying to match me with a suitable position. The first warning to me that this was not going to happen occurred on February 24, 2005. I saw a job listing for a position for which I had been interviewed and short-listed in 2003. When I made investigations the following day as to why I had not been offered the position, I received no direct answers, nothing in writing and a demand for another attending physician's report. I was told I was not on a duty-to- accommodate list. My doctor submitted another attending physician's report, this one specifying that I could handle the schedule required — that is, an on-call schedule, which was about once in eight weeks — as well as overtime, if necessary, meaning that I would not walk out in the middle of a case.The lab only runs an eight-hour day and I had been cleared for 12-hour days in 2004.
Human resources consulted with the lab manager and refused to pass on my resume or place me there based on the manager's claim that one might have to work for 24 hours straight if anon-call shift was busy. Let me tell you now that the doctors doing these procedures are human beings who have their limits, too. However, the human resources representative, a person with a Bachelor of Commerce degree by the way, expressed his concern that my limitations were "always changing'' and during my work assessment in 2004 the no-evenings restriction came up "suddenly.''
In March of this year, I filed a complaint with the Human Rights Commission. I know that the two nurses who have been accommodated with working days only have not been subjected to the continual challenges or dismissive attitudes to their needs that I have been. Last Monday, I was offered a three-month trial of days on my home unit. If that is successful, there will be asix-month trial of days and evenings and followed by a trial of nights only. I have not been able to work nights since 1999. On Tuesday, the Human Rights Commission told me they had been speaking to the hospital management. I will accept the offer.
We are financially ruined. Long-term disability benefits comprise 65 per cent of my paycheque. Because of our inability to pay our bills, we have had more than one disconnection notice from Nova Scotia Power and have been cut off several times from local phone service. For over a week, we lost long-distance phone service, which is a necessity, given that my elderly mother lives alone in a senior's apartment in Cape Breton. Our bank has threatened foreclosure on our mortgage and frozen the account into which my long-term disability benefits are deposited. We cannot afford vehicle maintenance and live half an hour from the city centre with no public transit. The only means of going into the city for appointments is a cab ride resulting in a $50 fare. My husband has been working up to 70 hours a week at a minimum wage job since November 2004. Our loan and mortgage payments are not covered by our disability insurance because my depression is "pre-existing.'' In the fall of 2004, I used the Metro Food Bank once a month, which is the maximum allowable, and I was glad it was there. The Salvation Army Christmas effort provided my children's toys and clothes. I thank God that my medical benefits continued to pay for my medication, Effexor, because I could not pay for it out of my own resources.
Faced with this knowledge of my difficulties, how dare anyone question the validity of a respectful response to my accommodation needs? Well, I do not have an X-ray to wave about or scars to display. My relapse risk, I understand, is about 90 per cent. My employer has deep pockets and can wait me out. Long-term disability benefits last only 24 months and mine terminate December 31, 2005. If I make it, I can retire on an unreduced pension on February 1, 2009. If I break service, I cannot access this pension until I am 65.
If I have time, I have some thoughts I should like to share with you. I have seen a lot of public service announcements about warning signs of a drinking problem, which is good. However, we need to add some more about the signs of depression for the general public. No one should be in the position of having to deal with mentally ill employees unless they have some health care training or at least have had an intensive workplace program of sensitivity to and recognition of the signs of depression. Employee assistant programs are a great idea, but not many problems respond to a six-session quick fix or a $300 maximum funding allowance. There should be a process to assess for severity of the problem and appropriate referrals to other treatments at the first opportunity. Why can psychologists not get paid for counselling in Nova Scotia unless they are members of a particular association? For example, the one I saw first with the employee assistance program was on the counselling staff at St. Mary's University. He was not a quack, but I could only have the six sessions allowed by employee assistance since no provincial payment was forthcoming.
I have some additional thoughts, and some of them ring close to home for me. The health care profession is not very comfortable with any one of its own having a mental disorder. It is kind of a "not in my back yard'' attitude. Once labelled as damaged, that worker should go "somewhere else,'' not remain in this workplace.
I agree with Susan. One of the best treatments I received was a series of sessions with skilled facilitators at the day clinic at the Abby J. Lane Hospital. The courage and the sharing in those groups is beautiful, heart-wrenching. They were the source of my greatest enlightenment and inspiration, as well as being exhausting and challenging.
We must change attitudes, starting with school children. We must be open about risk factors for depression, for example, alcoholism and family history. By all means, continue the "healthy lifestyle'' lessons, but include emotional health as well.
To all of us today, do not be ashamed to name your illness. When we do speak, please do not avoid us. What we have is not contagious.
Mr. Chairman: Sheila, thank you very, very much.
We will now hear from Mr. George MacDonald.
Mr. George MacDonald, as an individual: My presentation here today is the same one I will be giving at the end of the month in Nova Scotia, promoting the type of programs that we have across the nation.
I wish to thank Neil and members of our COMPASS team for asking me to pour out my heart today about mental health. It is an honour to do so.
The north, east, west and south markings found on a compass, reaching out to all directions, is an apt description for my life as well. Once upon a time, I was a husband, father and homeowner. Considered a workaholic, I had been a machine operator, construction worker, driller and blaster, was experienced in small lumber mills and was the owner of a small forestry business. I was living in a fortress of dreams.
Along came disappointment after disappointment. Ulcerative colitis destroyed my large bowel and an operation left me with a pouch glued to my stomach. The next year, my rectum was removed and closed altogether. The following year, I became manically high, then deeply depressed, resulting in the loss of a business, the loss of a career in forestry, the loss of my home and family and even my honour, defeated and humiliated by the loss of sanity. I underwent many admissions to psychiatric wards and spent almost two years at a forensic psychiatric hospital for a federal conviction. I battled suicide, underwent a month of shock treatments and even spent a few days in jail. It was a rude awakening into the real world of pain and cruelty.
Wandering through the wilderness of madness, you are sometimes exposed to exceptional psychiatrists. So far, I have found two of them, one in the forensic hospital and one who has helped me progress in the last few years since she came to Truro. Dr. Warren has seen me in my bad times, and being extraordinarily patience and sympathetic, and has listened to me when I could not seem to stop talking. We have a healthy relationship. If I want to change a dosage or try a different medication, she is very supportive. I do not want to be either superman or "Poor George'' any more. I want to be a healthy me. Not responding "normally'' in terms of drug management within psychiatry is a challenge. and so we all seem to learn the hard way many times. Dr. Warren has been a very good support and has shown unwavering kindness and concern.
Through me, my children and their mother have experienced the horrors of mental illness and bear very deep, soul- destroying scars as a result. The memories they are forced to live with are a punishment I would wish on no one. After what they have endured, there has been a lot to forgive and a great deal of trust to rebuild in order for them to love again, as they do, and it is a tribute to their mother that she has enabled this process to develop as quickly as it has.
My brothers and sister watched as my father suffered from mental illness until he was finally devoured by Alzheimer's. This made them more accepting of me, possibly because they did not have to live with me. My friends, what few I have, are still my friends in their own way.
Mental health touches many people and the hurt and fright that results goes deeper than is realized. Its survivors must be strong-willed people who learn to accept that shattered dreams are a reality. Many do not learn this hard lesson and become victims.
In the process of surrendering to my mental illness, I have been enlightened and introduced to God and his warriors of development and maintenance of planet Earth.
Recovery has been slow and painful, yet rewarding, for I have been that one in a million so many times, breaking so many rules, yet learning to reconnect. I have been introduced to the many systems that comprise our human society, learned about medicine and our economic and social development, and the necessity to act as guardians of our human resources. My occupational therapist and team leader of the COMPASS team in Truro has been quite a blessing in making the connections to the network of systems one needs to manoeuvre through for recovery: food, shelter, transportation, financial assistance, medicine, various appointments, recreation and grocery runs. He has strong shoulders, a willing ear and a big, sympathetic heart, and is a role model to those who make up the team to which he is a member.
Of all my failures, my deepest regret is the breakup of my family and all the pain and embarrassment created by my journeys of enlightenment through God's magical touch.
I have no visual imagination, but I endeavour to express myself through creative writing, woodworking, forestry realization, financial recognition and personal responsibility of individuals in authority and environmental awareness. These have become my educational tools to spin my web that will keep everyone honest, fair, responsible and aware.
With my personal experience, a willingness to listen and be used by the spirit for goodness, I have been on many journeys to help the less fortunate of our society.
Having a schizoaffective disorder has been a blessing, for it has taken me from riches to rags and shown me the real wealth of mankind. To understand the sacrifices that must be made in order to develop social freedom and to be allowed to experience the difficulties of finding peace and goodness no matter what the obstacle has been a blessing upon my head. My relationship with God cannot be bought with money nor earned without sacrifice. It is a reward. Spirituality and psychiatry can be seen as one and the same if we accept that God allows this to be so. For many, the answer does not lie in medicine alone.
I have two poems that go along with what I have been saying. The first is called Manic Depression.
What is it like to be manic depressed
To be in its states that are hard to be expressed?
Lying in bed covered head to toe,
Not knowing what day nor needing to know.
Lost in confusion, not knowing why,
This is a state where it is easy to cry.
Living or dying doesn't matter any more,
The soul has been stripped right down to the core.
Time seems so long in a hospital bed,
A place to have a rest and allow the tears to be shed.
The mind seems to spin in a turmoil of thought,
Memory may return of the battles that have been fought.
Families destroyed and marriages broken,
Because of the actions and the words spoken.
An illness of inheritance of genes to be passed down,
To children of children who may not be able to even frown.
From days to weeks to months on end,
Never knowing how much down time to spend.
Pills and needles and therapy to endure,
To give back your life you had before.
Activities to be done as a daily routine,
To help keep the balance for you in between.
Being down low gives experience with fear,
That the end of one's life could be ever so near.
Demons can possess the spirit you know,
A preparation is made in Heaven for your soul to go.
Pain and torment, where does it all come from?
It may have been passed down from your dad or your mom.
When one has no friends to help pass the day,
One goes to the window to watch those on their way.
God is my saviour for my prayers have been heard,
Of my cries of help that have been answered by his word.
And now the last one, just the opposite of this, is called, "Manic High.''
What is it like to be manic high,
To float like the eagles up in the sky?
To be wild as the wind in the eye of the storm,
When one is out in the maze away from the norm.
Full of energy with no need to rest,
It is a time when you may be doing your best.
Reaching beyond what others say is not real,
For not many know how you must feel.
Never to be hungry nor needing much sleep,
Gone is the step now turned to a leap.
Learning becomes fun, nothing more a bore,
The higher you get the more you become sure.
Obsessed about anything that comes to mind,
It is hard not to do when possessed you may find.
Blindness forgotten when given new sight,
The dull life you had now becomes bright.
Laughter can be displayed whenever before known,
You may spend many hours on the telephone.
Money is wasted as if there is no end,
And no way to stop until there is no more to spend.
Your inner creativity comes from deep within,
Why did it take so long? where has it been?
Writing and art is a privilege to do,
It does not feel that it could be you.
A wealth has been given but doesn't last long,
Everything seems right even though much has been done wrong.
Floating on the clouds for everyone to see,
Is a very sick person, bipolar me.
Mr. Chairman: You are an extraordinary poet, George. Thank you for that. Before I turn to Senator Cochrane, could I just ask for clarification of a couple of factual issues? First, what is COMPASS?
Mr. MacDonald: It is a program that we have in Nova Scotia.
Mr. Chairman: Is it an acronym for something?
Mr. MacDonald: They offer rehabilitation and support services.
Mr. Chairman: Are there different branches of the program across the province?
Mr. MacDonald: Yes. The program offers mental health services across Nova Scotia.
Mr. Chairman: Roy, I am fascinated by your comments on the Georgia program, which, as you say, certifies peer specialists, right? You travelled there to study the program. Can you take a couple of minutes to tell us about it? Is it a university or college program? Who actually runs the program? I understand it is funded by the state government, because that is what Medicaid is.
Mr. Muise: Yes, through Medicaid. The program falls under the Department of Human Resources of the State of Georgia. Everyone who takes the training, which is two weeks of very intensive training, obviously is a mental health consumer well on the road to recovery. The CPSs are hired and work within the formal system. It could be within a psychiatric hospital or a mental health clinic — and as well, they have what is known as "peer centres'' down there.
As part of the team, CPSs work with individuals, as I said, on goal setting and goal achieving, as well as on ways of staying well. Generally speaking, a CPS would be working with about 30 people at any one time. There are yearly updates in training and things like that as well.
Mr. Chairman: When you were in Georgia, did you meet both with CPSs as well as with some of the people they are helping? I mean, did you get a feel from both sides as to how well this worked?
Mr. Muise: Yes, I did, because a lot of the people that took the training with me were there because of the work that a CPS had done with them, and so I was able to see it from both sides. On the last day of training, they brought in about six CPSs to talk to us, and we really got to hear a lot of what it is like on a daily basis. We also have our own bulletin board on the Internet, so there is constant communication back and forth. I very proudly carry the honour of being "Mr. Canada,'' as far as they are concerned, because I am the first person from Canada to take the training.
I should point out, too, that the training is also being offered in South Carolina and Hawaii. Another four or five states are supposed to come on board this year, and Medicaid hopes that within five years every state will have this program.
Mr. Chairman: Who does the actual teaching?
Mr. Muise: The teaching is done by a group of mental health consumers who have been trained and who have developed the program. It is under the auspices of the Georgia Departmentof Human Resources, but the whole thing is consumer-runand-driven.
Mr. Chairman: It is interesting. In all the people we have talked to, we have never heard about it. How did you even hear about it?
Mr. Muise: I heard about it from a fellow mental health consumer living in New Brunswick who stumbled across it on the Internet. I researched the site, and said decided that I had to get down there, because I was just so impressed. What had actually happened was that I signed the online guest book and entered some comments about what I thought about the program, and the next day I got an email from the program director asking me whether I could come to Georgia. This was late October, early November. She told me that they were doing training in December and we would love to me there, so I ended up going.
Mr. Chairman: And you were gone?
Mr. Muise: I was gone, yes. I was very fortunate at work that, yes, I was able to go.
Mr. Chairman: That is a terrific example because, quite by accident, when we were chatting earlier, I told you all the comments that we had had about peer support groups and consumers, and I had not seen your testimony, so that is quite amazing.
Mr. Muise: Right.
Mr. Chairman: However, what we are discovering, as we go across the country, is that there are really good things taking place, in isolated pockets, but that nobody knows about it. There is no exchange system in place.
Mr. Muise: Exactly.
Mr. Chairman: That is why I was curious as to how you found out. It was kind of an accident that you found out about it, basically.
Mr. Muise: Yes, it was an accident.
Mr. Chairman: That seems to be happening everywhere.
Senator Pépin: Is the CPS course expensive?
Mr. Muise: No, it is not very expensive at all. They realize, of course, that many of the consumers could not afford the expense of taking the course. They charge only $75 for the training itself, but, mind you, you also have to be able to afford to get to where the training is and to be there for two weeks.
Mr. Chairman: And live there, yes.
Mr. Muise: Quite often, a clinic or a hospital will actually pay that part of it, but the training itself is very reasonable, yes.
Senator Cochrane: I want to make a general comment. Of all the things that we have heard about mental health in years gone by, and we have heard about shock treatment and the rest of it, we still are doing something good. You are here today. You are telling us your stories and they are real stories — and you can tell it without any fear or hesitation. Mr. Chairman, I think that is wonderful. I do. We have come a long way, when you consider that, even 20 years ago, you could never do this. It is just wonderful. Here you are today. There is an audience here, and senators from Ottawa are here listening to your stories. It is marvellous.
George, your poems should be published. There has to be a publisher out there that would print your poems, because they are the best I have ever heard. We have to get a publisher to look at you. We really do. I am serious about that.
Susan, you talked about funding. We heard from a group last week — I think the lady was from Toronto, Judy Hill; the chairman knows her quite well, I am sure. Judy was talking about raising funds for addiction, and she is coming here to the East Coast in the fall. She is with a non-profit organization, but she does collect funds for this organization. One of the things she told us is that few people apply for research grants. You never know, Roy, you might qualify, going to places like this centre. Just remember her name, Judy Hill.
We have to relay some information to people like you here today, because you can avail yourselves of it, right? Some of the research that is done, she said, as, of course, you all know, will sit on shelves and collect dust. We cannot let that happen. If there is any research in your hands, make sure that as many centres or many churches or as many groups as possible get it — latch onto it and use it. I am not here dictating, Mr. Chairman. I hope this is okay with you.
Somebody mentioned schools. We were saying last week that there should be something within the school system, and I totally agree. I cannot remember who mentioned schools this morning, but school personnel should be educated in how to handle and how to detect these problems at a young age. If you have any input whatsoever with school principals, superintendents and so on, you should make that fact known, because the teachers have to be educated as well as all the educators, in how to detect mental illness in young people, in children.
Do you really think that mental disorders are inherited?
Mr. Muise: I often wondered whether there was some genetic predisposition to mental illness. My mother went through a period of depression, but that was more situational. I found out within the last month, from a relative, just how much depression has been in my family, before me, but, of course, back then, it was always kept quiet. I had a favourite aunt, and I just found out that she missed a whole year of school because of depression back in the 1930s. Several other family members were similarly affected.
To me, finding that out was like finding another piece in that puzzle, because I now realize that there is mental illness on both sides of my family — which has probably had a bearing on what has happened with me.
Mr. Chairman: Susan, do you want to comment on that, in light of the experience with your daughter?
Ms. Kilbride-Roper: Certainly. People talk about nature versus nurture — in other words, the home in which an individual is raised, in combination with genetics. In both of our cases, we were predisposed to mental illness because of family history. I have an uncle who was diagnosed with bipolar disorder, and that was not known to me until I went public to my entire family, a very large, Irish Catholic family from P.E.I. on both sides, because of my concern about the children of my cousins, of my aunts and my uncles and so on coming across this disorder and not identifying it as quickly as they should. Since that time, people have come to me quietly, on their own, because they are not, some would say, as foolhardy to give out this information, and have confided to me that this is, in fact, the case with them. I have learned that my grandmother on my father's side spent the last three years of her life in bed, but the word "depression'' was never used. So, on both sides of my family, there is mental illness.
With regard to my daughter, yes, I was told that, statistically, there was a 50 per cent chance that she would at least suffer from depression, if not bipolar or unipolar depression, and in fact she does. I mentioned that I had an addiction. When my daughter was in her early to mid-teens, I went through a real crisis period with alcohol, a behaviour that would surely affect a child. Hence, there is a great deal to be said for genetic predisposition, but there is also something to be said for the circumstances in which someone grows up.
Senator Cordy: I wish to thank all of you for attending here; it is not always easy to tell your stories over and over again.Some might think that members of this committee, having heard stories like yours for the past year and a half, would become, I do not want to say hardened, but somewhat immune to them. However, I must tell you that it tears my heart out when I hear these stories, particularly ones that are unfolding recently, 2004 or even 2005. Yes, we have come a long way, but we have one heck of a long way to go in this field.
Sheila, when you related your story about your employer's reaction, even in 2004 in Halifax, which is where I am from, it really hurt. I suppose I can understand some employers not being knowledgeable about mental illness, but not an employer in the field of health care and public service and government. You told us that your only support came from a NSGEU representative, whom one would expect to be knowledgeable about mental illness. The fact that you had no support is shocking. Is that changing? I understand you were experiencing this recently, in 2004. Is anything good coming of what you have gone through?
Ms. Hayes Wallace: I have had a consciousness raising experience — as they used to say in the so-called women's liberation days. I have learned that what is written on paper is not the same as what is done in practice. I have also learned that it takes an enormous amount of strength and bloody stubbornness to insist on your rights. I do know of others in my circumstance — again, wonderful nurses, who do not have my Cape Breton stubbornness, or whatever it is that sustains me — who have gone through their period of long-term disability with some attempts to improve, but not much support, and so they have left the hospital and have found other employment in nursing, but are not still working for the same employer. They took great skills with them. It is really tough to be at work when you have "come out,'' or whatever the appropriate term is — "out of the bedroom.'' You remove the sheet from your head and you say, "I am depressed,'' you get help. People at work know why you are off work — because you do not have a limp or sutures or whatever and when you return — and you get treated a little differently, everybody is "concerned.''
They are really concerned for you, so concerned in fact that they do not talk to you directly but to your manager. They say things like, "She is not getting a break on time'' or "She does not seem organized like she used to be.'' It becomes a self-fulfilling prophecy, because now you are trying to get everything done because, God knows, if you do not, somebody will be in the office the next day saying, "She did not leave till 11:30 last night; she was supposed to be off at eleven o'clock.'' It is hell to work in this environment of, "Not in my backyard. She should go somewhere else.'' Well, damn it, I tried to go somewhere and "somewhere'' did not want me either.
I called everybody for help. I would have called God. I called the Human Rights early on, and a very nice gentleman on the phone said, "Well, you probably do have a case, but I expect that your union will be more effective.'' Well, that is not true, because my situation is not the union's sole focus. The union's focus is on different issues, seniority, wages, benefits or whatever. However, when they negotiated benefits for the people who needed accommodation in the workplace, I do not think they were looking very carefully at mental illness. When I spoke to our human resources representatives, who said to me, "Doesn't every nurse in the hospital want a day job?'', I could have eaten him alive. I did not care what they wanted; I needed one. I needed regular sleep and regular hours and time with my family. I was insulted and belittled and humiliated all the way. You can probably tell that I still have a lot of anger about that, but I am, I promise you, going to channel that anger into a lot of action. I am going to be an advocate. No one is going to have to suffer and tough their way through this again, not if I can stand up for them.
Senator Cordy: You are well educated and determined. Not everybody with a mental illness has the resources, particularly if they are depressed or suffering some other form of mental illness, to fight the battle that you have fought. How can you change this? I mean, I am shocked that it is a public service, a government agency, a health care agency, that has done this.
Ms. Hayes Wallace: Mental health advocacy is fairly young. Addiction advocacy, going all the way back to Alcoholics Anonymous, has a long history. It is established. Reaction to physical disabilities, as we know, was long in coming. How many corporations and businesses resisted putting ramps and elevators in place? Well, the business community did not collapse, and now it is possible for people in wheelchairs and those who are hearing and visually impaired to work. Well, you know what? Now we need the equivalent for people who have mental needs. We need our own "ramps,'' for want of a better word.
Mr. Chairman: One of the reasons I deliberately mentioned physical disabilities earlier is to point out that, in basically one generation, public attitudes have dramatically changed on that issue — and you are absolutely right, the world was going to fall apart as far as the business community was concerned. "What do you mean, we have to put curbs on sidewalks and put ramps into every building?'' Today, people do not even think about it. A contractor who erects a building today automatically installs washrooms that take wheelchairs. It is not even on anybody's agenda any more, because it automatically gets done. Hence, it is obviously possible to effect change.
However, you are right — in terms of attitudes toward mental illness, we are back where we were with physical disabilities 20 or 25 years ago.
Senator Cordy: A number of you spoke about public education campaigns. In my other life, I was a teacher, where we certainly had campaigns on healthy hearts and physical fitness, anti-smoking, anti-drugs, but we really did not talk about mental illness, nor did we look at the possibility of co-morbidity in terms of drug education. How do you see that type of education happening and when? I taught elementary school and, certainly, in elementary school, we did all types of things related to drugs and smoking and alcohol and those topics, but, again, mental health issues were not in the forefront of any information coming to teachers.
Ms. Kilbride-Roper: All levels of education, starting from a very young age, should include information on mental health when children are introduced to health topics. There has been some work done in this regard. I know the Canadian Mental Health Association has two publications, one for school students and one for university students, talking about mental illness and how to cope in the school system. However, it could be introduced even earlier, to the early grades. This should include education for teachers as well as guidance counsellors. There should be in-service days dedicated specifically to mental health and how to look for warning signs in the young.
There are good programs in hospitals and in youth programs, but that is when people are already in crisis. We need to think about what we can do for people before they reach a crisis. I believe money should be allocated through the health care system on having experts, like CMHA, like the Consumers in Action program, come into the schools and educate the teachers and guidance counsellors on what to look for at an early age. Some teachers now are educated to look at attention deficit disorder, but there are other disorders that they can be watching for as well.
Senator Cordy: What about the judicial system for young offenders? I know the judicial system is aware that many young offenders are addicted to drugs or to alcohol, or to both. Are they being trained to look at the possibility of co- morbidity, that, if a young offender is addicted, there is a possibility of a mental illness? Do you know that?
Mr. Muise: There is some work, I think, being done in Ontario and New Brunswick around that issue. It is generally around the courts for any age, but it is certainly an area where a lot of work has to be done. I am pleased because I just heard last week while I was in Ottawa that a task group, if that is the right term, is being organized, with representatives from Health Canada, Justice Canada, Human Resources and whatnot, to start looking at mental health and mental illness, recognizing that it is not just one government department that needs to be involved.
Mr. Chairman: Who did you hear that from? Do you know?
Mr. Muise: I was in Ottawa last week, with the Canadian Mental Health Association. We did our "charge on the Hill,'' and we got to meet with various senators and members of Parliament during the week to talk about mental health issues. At a couple of those meetings, it was mentioned, possibly through Health Canada. Michael Wilson was appointed and it is proceeding from there.
Mr. Chairman: Yes, and we have been leaning on people.
Mr. Muise: Exactly, and someone said last week that the other departments had either appointed or were in the process of appointing people.
Senator Cordy: By the way, that was an excellent program to educate politicians about mental illness, even though I kept you in my office far longer than I know had been planned.
Mr. Muise: Well, we almost got an award for being in the longest, but we enjoyed it.
Senator Cordy: My next question has to do with work programs, Susan and Roy, you both spoke about volunteering and how it helped you to get a job. Are there programs in Nova Scotia to help those who have suffered a mental illness, to step back into the workplace or, in fact, for younger people, perhaps male schizophrenics who are first diagnosed in their late teens and who may never have been in the workforce?
Mr. Muise: If we have any programs in Nova Scotia, I certainly am not aware of them. The only places that have anything at all are organizations that deal with mental health and mental illness. I am not aware of any other programs. I consider myself very fortunate to be working, and I can tell you how important it is to get back into the workforce. During the 1990s, when I was particularly ill, and even later, I was averaging one and two hospitalizations a year. In 2001, I spent Victoria Day weekend in the hospital. Six weeks later, I began working at the job that I have now. I have a very supportive workplace — and also have not been in hospital since, so nobody has to convince me that there is a connection.
As to formal programs, I do not know of any. I was at aone-day conference — this was a few years before I started work — that related to things in place for people with disabilities to get back into the workplace. I sat there all day, hearing all about special computers, special seating, and the like, and I got up at the end and I said, "You know, I have heard some really wonderful stuff today, but I have yet to hear of anything to do with my disability.'' Everyone looked at me, and I said, "I have a mental illness and I have heard nothing today about helping myself get back into the workplace.'' There were government officials and business representatives present, and no one could come up with anything.
Senator Cordy: Susan, do you think it would be beneficial to have a program to help people enter or re-enter the workplace?
Ms. Kilbride-Roper: Definitely. Are you speaking particularly about youth now, or mental health consumers in general?
Senator Cordy: Just overall, yes.
Ms. Kilbride-Roper: Definitely. I think it has to be reviewed at all levels, but if you are talking about volunteering and other methods for getting people back in the work place, this needs a lot of work. For the five years that I worked in the non-profit sector, I worked in the area of addressing employment issues for people with cross-disabilities — and only a very small number of the people I dealt with were mentally ill. There are agencies that do work with mental health consumers, like city employment services here in the province, but they are few and far between. Most of the employment services are for people with physical disabilities, and, as Roy said, most or all of the workplace accommodations are geared to them. So, there needs to be a lot more work, a lot of research and programs put in place. I am not sure how they would look, but they do need to be put in place.
Senator Cordy: George, when you spoke to us this morning, you talked to us about the hardships that your family had gone through, your children. In cases of alcoholism, there is a program called Al-Anon where families can get support. Is there any support for family members of somebody suffering from a mental illness?
Mr. MacDonald: I have not been to them, but I know they do have programs, family support groups and everything else. My family did not want to be involved in that. I do not know why. My wife's family is a little higher class, so they did not want to get into all these things. I had to allow them to go their own way. Even now, I cannot make suggestions to them, because I am sick and nobody wants to listen to me.
About this education program, the only education program I know of right other than what COMPASS is doing is forensic. It is the only education program that I have come across anywhere in the health care system where they help a little bit. I have written a few things here about it. I am not very good at speaking, but the issue of education is one of the things I was hoping to bring out here. It would take only a minute and a half to read this to you.
Senator Cordy: Go right ahead. Is that all right,Mr. Chairman?
Mr. MacDonald: Education should consist of communication and cooperation among mental health consumers and medical professionals. There should be packages available on mental illness and a distribution of books, videos and pamphlets outlining drug responses and their activities as well as the "dos'' and "don'ts'' of each illness. Through the guidance and cooperation of medical professionals, mental health consumers should be made aware of how they should feel with less, enough and too much of each medication. Education packages should address the topic of "who I am changing into and why,'' and should contain a spiritual dimension without denomination. Mental health is God's program to learn by torture and struggles to strive towards peacefulness, love, truth and forgiveness of every other human, no matter what their faults, for without those people, we would not know how blessed we are to have learned the magic role, which is to love one another and to understand how hard it is for others to do the same. As humans, we are born to learn about love, patience and acceptance of others, so we may also be blessed of our own failures and ignorance of righteousness.
I had another suggestion for inside the hospital. Psychiatric facilities need various types of rooms — one that is concrete and bleak, for punishment; one with mattress padding on walls, floor and door for protection of self; and one with a friendlier atmosphere and peaceful music, geared at calming down the tortures of the damned.
Senator Cook: I will just speak for me as you spoke for you. I am a very ordinary person attempting to do extraordinary things in the interests of mental health with a great group of people. Throughout your presentations, and you can comment each in your time, you talked about the management of waiting time. You said that waiting times for services are long. I am the kind of person who is always looking for a solution when I hear a problem.
You talked about peer support, Susan. Is there any way that we can access those waiting times, to cull some people out? I ask that because I would suspect that there a number of people in that so-called silo of waiting times who, with some intervention, would conceivably not need to be there. Can we come up with some ideas to reduce the waiting time? Also, looking at it from a national perspective, each province has its own provincial standard of formulary. I hear you say the psychiatrist is on the formulary, covered by Medicare, but that the psychologist is not. Medications are covered, but I would think therapeutic care is not.
How do we address that fragmentation, from a national level, because we are federalists working with a program that delivers provincially, so the stresses come there? We are looking for something that seems very simple — that is, a seamless delivery. Well, sit down and try and figure out the word "seamless'' and we will have the answer to why we are here today.
Peer support is wonderful because nothing beats a human touch and face-to-face dialogue. However, somehow or other, we have to stress the importance of getting that link to the system all along the continuum, because, so often, peer support happens in isolation or with volunteers or NGOs somewhere out there. To be effective, if we are going to provide a continuum of care, we have got to move along the continuum.
You talked about waiting times, which caused me to immediately go through the programs that are available from a federal perspective — and I know many are fragmented — insurance, EAPs, for instance, private insurers, the policies of employers. However, it seems to me that while you try to access services through these systems to suit your needs the basic underpinning of what could help you is the volunteer in the NGO sector. You went to another country to find help for your people.
While we listen and struggle to find a charter of rights or whatever, a "seamless delivery'' of system within the health care system for this particular segment of our society, I think we have to analyze what exists, where the gaps are and how you are coping.
Some of you seem to be coping very well, but, Sheila, your employer flabbergasts me. I cannot believe I heard that story from a facility that is dedicated to the wellness of people. Yes, we are human — but we have to put in place something to mitigate such behaviour. We will never fix it — because it is a human being that delivers the service at the end of the day.
With these thoughts, I am just wondering if you would like to comment on that, because I hear you say, Susan, again, training may be the answer. It seems to me the social worker is the pivotal person here, because no matter, Mr. Chairman, what level you go in, it is a vortex. You find yourself in the subculture, if I can use that word, of today's society because of the circumstances of the mental health consumer. An individual starts out with a problem that should be managed, the same as a hip replacement or a bad back or whatever, but because of the dynamics, you drop, and I saw that in each one of your presentations, to what I consider a subculture, and it is a vortex. You just cannot get out of it under the present system.
Mr. Chairman: Who wants to comment?
Mr. Muise: I will make a couple of comments. First, with respect to peer support, I strongly believe that we do need a strong peer support system within the formal system. I think it would make a huge difference, for those people on waiting lists for treatment, but also for those who have begun their treatment, because sometimes the treatment itself can be a little scary.
As far as what can be done federally, it was pointed out to me last week in Ottawa on several occasions that the federal government is the fifth larger health care provider in the country — because of the military, Aboriginal people and the prison system.
However, the other thing to remember is that the federal government can put pressure on the provinces. After all, the money for health care comes from the federal government. There needs to be a national mental health strategy. Of the G8 nations, by the way, we are the only country that does not have a national mental health strategy. If there were such a program, it would be up to the federal government to start putting pressure on the provinces to say, "We are giving you money. This is what you need to do with it when it comes to mental health care.''
Those are the two comments that I wanted to make on what you had to say. Yes, a lot of times, we are sort of in a vortex. We are not really a part of society, even though we certainly want to be.
Mr. MacDonald: I was just taking notes here. As we grow, so does the research and development. Scientists are discovering more and more about us, so we are being put into groups and labelled. More cures are being found as well as explanations for why we are sick. However, in mental health, there is no test. There is no test a doctor can give to find out which medication to put you on or which chemical is out of balance. We have alternative health care. There are some programs that can test you for whatever drug is needed, and they usually recommend an herbal remedy or whatever.
I would like to see some of this changed. I would like to see the government and doctors and alternative health care practitioners working as a group because in our society, where many people are on fixed income, mental health consumers cannot afford some of the alternative forms of therapy or medication. There are alternatives today to almost every form of conventional medication in one form or another, and social services will pay for this, but we have to find out which ones we need.
I personally have tried some of the therapies offered by alternative health care. Some of the practitioners were very friendly and cheap. They are a heck of lot cheaper than the system we have today. Why can we not get together on some of this?
Ms. Hayes Wallace: Based on the experience of my colleagues at the table, I would like to say that I am damned glad I did not enter the system any earlier than I did. I think I got the best of all worlds — and a lot of it is because of the circumstances that others went through. At the same time, I would like to think that more can be done, that is it going to get better for everyone. In workplace issues, your employer has to have the burden of proof. I do not want to see a policy of, "Who are you facilitating in your institution now?'' I am not talking about mom and pop businesses. I am talking about larger organizations that can well afford to accommodate differences.
Ms. Kilbride-Roper: This whole process is encouraging, and it has been recognized that involving mental health consumers at all levels in any decision making is really important. Here in Nova Scotia, our Department of Health is working towards that goal, in involving mental health consumers. I think that is key. Just hearing my colleagues here, hearing all their collective knowledge and what they have gleaned from their experiences, supports the idea that it is key to have us involved in as many processes as possible, because we bring a richness of experience to the process.
Senator Pépin: Most of my questions have been asked, but I should like to summarize what I heard — that is, that mental health service is a basic right. This is very important. One of the issues revolves around diagnosis, because there is often a wrong diagnosis or a late diagnosis. As a result, the medication is the wrong or there is overmedication. Regarding therapy, depending on an individual's income — he or she has to pay to see the psychologist. Again, it is another big problem. Someone said, "We are not to be feared or pitied.'' I agree wholeheartedly.
I want to thank you for attending here today; I want you to understand the importance of your presence here today. People my age remember all the campaigns for people with physical challenges. Your stories help to educate us. Education is the key. For me, it is of the utmost importance.
Someone mentioned that, in Nova Scotia, psychologists are not paid for. I come from Quebec, where the same is true.
Sheila talked about hospital policy — and I am sure the policy is not restricted to your hospital only. It must include all hospital and nursing services, if there is a discrepancy, as I understand it, between the need and the action. As well, you mentioned that the union should have done something. Do you believe a new trend is emerging, where a situation like yours is much better addressed, or do you have lots of to work to do with the hospital service or the union?
Ms. Hayes Wallace: I am one of the first people to make so much noise and to contact so many people. I really do not know what motivated me to do it. I am not usually a crusader. I think I was so trusting in the written policy being in place to protect my needs — and then the reality of discovering loopholes.
Senator Pépin: You said, "They look at me if I finishat 11:30 instead of eleven o'clock.'' It is then that we realize that people are not educated at all toward people who are suffering from mental illness.
I am a former nurse, and our training involved three months of work in a mental health hospital, because at that time mentally ill people, and there were thousands of them, were put in mental health hospitals. For the most, we now find those people on the streets, very often, and in prison.
Should there be special hospitals or special houses for people who are suffering from mental illness, where they will be well looked after, or would that lead to their exclusion from society?
Ms. Hayes Wallace: I will speak on the basis of being a family member of someone, my cousin, who was hospitalized for a lot of his illness and has had a lot of social service/community support. He can live independently, yes. He likely will never be able to work for a wage, but he can do some volunteering with churches, with food banks. That helps him as well. He is very spiritual, as I mentioned. He has a great faith in God, which may explain why he is still here, because he has had a very long life, filled with turmoil.
I do not necessarily think there have to be large institutions, as there were in the past, but there have to be institutions without walls. There have to be community sources streaming these people, my cousin, me, whoever, to meaningful lives. They do not have to be shuttled back and forth on the bus every Friday to go look at the park, but something meaningful and something dignified is what I would hope for all.
Mr. Muise: Speaking of housing, this is an area where there could be a lot of improvement with supportive housing in some respects, as well as transitional housing. I remember the time when I was ready to leave hospital and I had nowhere to go because I had no income and I had no money. I spent 13 days in hospital only because I had nowhere to go. It is very difficult, given the gaps in our employment history, first, to get a place to live and, second, to come up with the damage deposit and things like that while we are trying to turn our lives around. So, yes, there needs to be something done in housing, that is for sure.
Ms. Kilbride-Roper: Adding to what Sheila said about her cousin, there is getting to be more and more focus on recovery rather than just dealing with mental illness. I know in Nova Scotia, it is happening, and, more generally, in Canada and the U.S., with other countries in the lead with a body-mind-spirit approach. You mentioned what your cousin has used to help him keep strong. I think we have to look at that, not just treating the illness, but looking beyond the illness to things that will make our lives richer and that will support us other than psychotherapy and medication. We need to focus on recovery and to educate people to see beyond the illness. I think that is key as well.
Senator Pépin: George, I want to tell you that you one of our best poets in French Quebec is Émile Nelligan, who suffered from mental illness. People still think of him as one of our best poets ever, so carry on with your writing.
Senator Cook: I wish to go back to the word "spirituality,'' because all of you in some manner or form mentioned that this morning. Mr. Chairman, we have heard some interesting stories from our First Nations people with respect to culture and spirituality that comes from within, that is something unique that belongs to you. Where along the continuum can we use the force for the greater good — that is, through the system to help you — or are we not ready to talk about our spirituality at the moment? It is often a lifeline of last resort. How do we link that in?
Mr. MacDonald: Spirituality is the only thing that got me through my ordeal. I believe that spirituality needs to be addressed in psychiatry. It is not. If you speak about God or Allah to any of your peers, they are uncomfortable. Even when you go to church and visit clergy and speak about this, you are condemned there. Yet they teach it and preach it. You have to experience this first-hand in order to even know what it is. You can read all you want, or somebody can tell you all about spirituality, but until it becomes a personal experience, you will never, ever understand it. It will be difficult to bridge the gap between spirituality and psychiatry and our community, but it needs to be there.
Ms. Kilbride-Roper: The self-help group I was involved with was very helpful in the collective wisdom of the people that have experienced mental illness. They helped guide me in my own spiritual quest. As far as our spiritual leaders, I can tell you that I went to my parish priest, when I had my psychotic episode and was following in the footsteps of St. Francis of Assisi, and asked what it all meant, and he did not know what to do with me. He thought I was probably "crazy'' — because I was excited about my new direction, my new vocation in my life.
However, it was the self-help group that most helped me, because everyone is at various levels of spirituality and you can take and learn. As well, my own research helped quite a bit. Once we are diagnosed, we set out to find the meaning of life and why we are afflicted in such a way, and more of an emphasis should be put on spirituality in any kind of program that we implement.
Mr. Muise: I am not sure where spirituality fits in exactly, but I do know, in my own case, I did not ask to become ill, I did not do anything that made me ill, and there was nothing I could have done that would have kept me from being ill. However, once I realized that my illness was happening to me for a reason, I really started to recover — because I knew there was a purpose behind my illness. I am still not sure why it happened, but I hope I am on the right path now. Who knows? Nevertheless, it has been fun trying to learn why it happened to me.
Mr. Chairman: Roy, can I just ask you one last question? I know we are considerably over time, but this is important. You said that you did not ask to have this happen, that it was not your fault and that it would have happened anyway. On hearing of your illness, did anyone suggest that you could have prevented it, that it might have been your own fault? This is something you would never say if someone had a heart attack or cancer, but did you get that attitude?
Mr. Muise: I got that many times, in addition to, "Well, just get over it, Roy.'' Yes, I get so tired of hearing that it was my fault. What hurt the most was the comment that it was my fault that I was not getting well, that all I had to do was make up my mind that I was not going to be depressed any more and I would not be depressed any more.
Mr. Chairman: Did anyone else here experience the same thing, that is, that as opposed to a physical illness you were partly to blame for your own situation?
Ms. Kilbride-Roper: Very much so. It is seen as a weakness and a weakness that you can control.
Mr. Chairman: Yes, as opposed to a physical ailment such as cancer or a heart attack.
Ms. Kilbride-Roper: Absolutely.
Ms. Hayes Wallace: It was seen as an indulgence. Anybody could have gotten sick or tired had they just let themselves, but they were stronger and tougher than I was and they could take it and I could not.
Mr. Chairman: So it was an indulgence. George, you have had the same experience?
Mr. MacDonald: Yes. Mental illness is invisible. You cannot see it, you cannot feel it. You have nothing else to compare it to. I have had many other illnesses as well, and mental illness cannot be compared to any physical illness.
Mr. Chairman: I thank all of you for your attendance here today. You have been terrific. The personal stories we are getting both from mental health consumers and from caregivers and family members are extraordinary. We appreciate your taking the time to be with us.
I welcome our next group. Thank you for taking the time to be with us today. Let me begin, as we did this morning, with Jan, and then we will work our way across the table.
Ms. Jan House, as an individual: One of the things I find most difficult, even in leaving telephone messages, is being concise, so if there is a hook, I will be looking for it. I plan to give a brief history of what happened, how we got to where we are today, which is a much more positive place than when our story began eight years ago. If you will bear with me, I will go through that. Again, it is very difficult when you are retracing things because it stirs up all those emotions again, which are never far under the surface because the road has been very long.
I am the mother of a 25 year old woman living with schizoaffective depressive disorder. My daughter first entered the mental health system in Moncton, New Brunswick, in the spring of 1996, when she was in grade 10 and suffering from depression. She was referred to the mental health unit at the Moncton Hospital as an emergency case by a counsellor we had been referred to through the employee assistance plan offered by my husband's employer, CN Rail. The attending psychiatrist's diagnosis was chronic depression. My daughter was treated for chronic depression until the fall of 1998, when she moved to Halifax to attend university. She not only continued to suffer from depression, but also began to exhibit extreme and often risky behaviours, and had problems with substance abuse.
Through an acquaintance, she was referred to the Mood Disorder Clinic and Dr. Kusumakar for reassessment. The resulting diagnosis was bipolar disorder and she began a different drug therapy as well as regular sessions with a therapist.
My daughter's physical health was also affected. She was diagnosed with colitis and treated accordingly for a year and a half, and then re-diagnosed with Crohn's disease, for which she was treated with steroids. After experiencing seizures, she was diagnosed with atypical multiple sclerosis and told that both her mood disorders and physical ailments were symptoms of MS. Her psychiatrist at Abbey Lane said that, as a result, she no longer needed to see her for treatment. However, in the fall of 2000, my daughter's mood continued to deteriorate; for example, she thought people were always talking about her, laughing at her. She lost all of her university friends and she was living alone. My daughter ended up having to drop out of university in November 2000 and had to move home.
In desperation, I phoned her former therapist at the IWK Health Centre, who quickly put us in touch with Dr. Ann Duffy at Abbey Lane. After disclosing to Dr. Duffy that she had been having psychotic episodes for some time, she was diagnosed with schizoaffective depressive disorder. The first medication she was put on, olanzapine, caused her to gain 30 pounds. She became so distraught over her weight that she developed an eating disorder, a problem that persisted until last year, long after her medication had been changed.
She did improve after being home for eight months and was able to return to university in the fall of 2001. In the spring of 2002, she was referred to the Early Psychosis Program and Dr. Heather Milliken. My daughter continues to be a part of the program and a patient of Dr. Milliken.
Last year, after a robbery/assault in May, she had to withdrawn from university again. With the help of Laing House and reachAbility, she was able to secure employment with TEAM Work Cooperative in Halifax, a non-profit agency that assists people with physical and mental disabilities.
I will now give you my perspective as a caregiver with regard to the mental health care system, what has worked and what I see is broken and in need of repair. The employee assistance plan, or EAP, at the start of the process was very efficient from the point of intake to the initial meeting at the hospital with a psychiatrist. The access was almost immediate, the assessment and subsequent treatment at the Mood Disorders Clinic was timely, and the regular therapy sessions were helpful.
The clinical care my daughter received from Dr. Duffy at Abbey Lane was a major factor in her recovery. Dr. Duffy encouraged my husband and me to be part of the process. This was the first time that we had been seen to be an integral part of her treatment. Dr. Duffy not only treated our daughter, but also provided my husband and me with some much-needed support. The staff at Abbey Lane were extremely caring and helpful. When there was a crisis and Dr. Duffy was not available, every effort was made to find an alternative.
Dr. Duffy asked our daughter if she would be interested in being referred to the Early Psychosis Program in the spring of 2002. This was another positive step. The Early Psychosis Program was helpful in terms of education and support. We met other families going through similar experiences and shared coping strategies with them, as well as learned about community supports for caregivers.
More important, Laing House has been instrumental in my daughter's recovery. They have advocated for her re- employment and, as a result, she now has a full-time job with TEAM Work. Along with reachAbility, Laing House meets with our daughter regularly to ensure optimal success on and off the job. The staff at Laing House have continued to stay in touch with our daughter, reaching out to her, including meeting with her off-site. They are an invaluable support, offering a safe place where she knows she can, and does, go for help.
Dr. Heather Milliken, director of the Early Psychosis Program, has been and continues to be an integral part of my daughter's ongoing recovery and reintegration. She has gone out of her way to ensure that full-time employment is possible for my daughter because of her flexibility with respect to scheduling appointments after her regular hours, thus accommodating my daughter's work hours. She has been one of my daughter's biggest advocates, encouraging her to continue to have goals and to pursue her dreams. She has also been a terrific support to me and my husband, encouraging us to continue to educate ourselves about our daughter's illness as well as to keep trying to make a difference. This includes sending us invitations to mental health conferences, providing educational materials regarding advances in mental health care, information about clinical trials, notification of family education seminars, and so on.
This may sound like a rosy scenario, but there is much more to be done. This is what Dr. Milliken can do when she has the time available. Very often, she can only see my daughter every two weeks and, in a crisis situation, once a week.
There are problems with the system. To date, it has more often than not been a system that we have had to navigate on our own in terms of looking for services, such as self-help groups for young people and their families, financial assistance for education and housing, where to go for addiction treatment, crisis care, and for employment opportunities.
There are problems with crisis care. In the past, the only advice our daughter has received from the crisis line and the hospital emergency departments has been to go to the hospital if she really thought she needed to or to take a pill or to schedule an appointment with her doctor. Too often, help seems to be restricted to nine to five, Monday to Friday. When my daughter was admitted to emergency last year after a robbery/assault, neither the General Hospital nor the Nova Scotia Hospital seemed to know whether she should be referred to someone in the psychiatric community. Often, the only place to go in a crisis is the Nova Scotia Hospital, but it has been our experience that, again, if your crisis is outside of office hours, you spend weekends doing puzzles and watching TV.
My daughter says that she feels hopeless and that the hospital is the end of the line. She would never go back there for help. The team at the Nova Scotia Hospital in February suggested to her that she should forget about her job and focus on her illness, and if she chooses to continue working, she would be choosing her job over her health. However, employment has been recognized by her psychiatrist, Laing House and her general practitioner as being an important part of her ongoing recovery. She was also referred to by a team member at NS Hospital as a "help-rejecting complainer'' and a "whiner.'' So much for a professional, caring environment.
There is a problem that relates to services for addiction and substance abuse by those with mental illness. There should be a separate program for young people with mental illness and those with addiction and substance abuse issues. Young people with mental illness, as in my daughter's case, often self-medicate. It is a symptom of their illness that can become part of their lifestyle if not addressed early. Referring patients to programs like CORE that have a wide client experience, such as mandatory referrals from the justice system and long-term abusers, exposes those who are already vulnerable. My daughter was referred to CORE after being assaulted because she has an addiction to marijuana. The people she met in the program supplied her with pot and put her in touch with someone on probation who offered to pay her to cash some cheques for him. The cheques were counterfeit and, because we had a joint account, we had to repay the bank $2,000.
There are also problems with the police. When my daughter reported the robbery/assault to the police, the investigating officer said that she really wondered if it happened, citing the fact that my daughter had a mental illness and a pot addiction. She suggested that my daughter had hallucinated or made up the story. The officer also suggested the my daughter may have sold what she reported as stolen for drugs as well as selling sex for her habit.
With respect to the incident with the counterfeit cheques last summer, I reported the fraud to the police, my daughter filled out the required report and we supplied copies of all the cheques. However, after numerous phone calls to find out the status of the case, I gave up because nobody called us back.
Costs of housing, transportation and prescription drugs continue to be problematic. Physical environment is especially important for those with mental illness; however, because they often have little or no income, they are often forced to live in the worst possible neighbourhoods filled with high crime, drugs and violence. In order to ensure she is living in a safe and positive environment, my daughter has been forced to move three times in one year. As a result, the team at NS Hospital called her a "princess'' and stated she was spoiled because we supported her. The reality is, however, that without our financial support, even with social assistance or her current employment income, she cannot afford to be totally financially independent. What is needed is subsidized transportation and housing and free orlow- cost prescription drugs for those suffering from mental illness commensurate with their incomes. Dental care is another issue.
We need funding for research in order to continue to advance drug therapy and to develop more effective treatments and a possible cure. With more funding dedicated to research, we can attract more psychiatrists and be able to offer better care. Often, negative side effects from medications currently available result in non-compliance, directly affecting physical health.
There is a general need for increased funding, not for more infrastructure, but for more hands-on care. More effective and expanded use of our existing resources is imperative: outreach teams to reduce the need for hospitalizations and for follow-up to crisis care; outreach programs in schools with mental health being a mandatory part of health education starting in junior high school or even earlier; regular psychotherapy that is flexible to allow for participation in the workforce. Overall, a national health care policy with national standards for mental health care should be established to ensure that every Canadian citizen is assured the same quality of care and equal access to the system.
For the most part, I agree with all of the observations and recommendations I have read in preparing for my presentation today.
Mr. Chairman: I thought you were going to read the part there from your daughter.
Ms. House: No.
Mr. Chairman: Okay. Thank you very much.
Ms. Joyce Taylor, as an individual: First of all, I wish to thank you for the privilege of participating in this endeavour to bring changes to our mental health system. As I am 81 years of age, I may not be around to see the outcome of these expected changes, but at least I have the comfort of knowing that they are in the works.
My reason for being here is that I have a son who developed schizophrenia when he was around 19, just beginning college. He is now 48 years old. In the intervening years, he spent 10 years living on the streets of cities from the East to the West Coasts of Canada. Hence, I know quite a lot about how the mental system worked in the early years throughout the country — because I used to have to come and find him.
His illness started when little was known about mental illnesses; therefore, little help was available. Since then, of course, more sophisticated medications have been developed. We know one of these atypical medications does work for him, but, unfortunately, because he does not believe he is ill, he remains largely untreated. Like many others who fall into this category, he is a most unhappy person who lives an isolated life on the fringe of society.
People who go off of medication, if they are looked after by their parents or relatives or another caregiver so that they are not on the street and a nuisance to society, are largely ignored. They simply do not exist. They are on the trash heap, in other words, which is most frustrating for parents and relatives.
My son can at times be verbally abusive and he does become psychotic when he is off medication. At other times, his old personality appears and he is a very, very nice person, but difficult to be with.
I was gratified to notice that most of what I had written in my replies to your questionnaire must have been echoed by many others across the nation. It was amazing. I think you have done a tremendous job, because there was not much in it that was lacking that I had experienced.
I will comment briefly on two items, the first being the stigma attached to mental illness. I will no go into my son's history, because you will hear many case histories. We know being stigmatized has a profound effect on people living with mental illness, just as we are all aware of its disastrous consequences on human life. In my son's case, it has proved to be absolutely crippling.
I have learned over the years that you cannot eradicate, you can only educate. Education is the first stage. The more information we can share, the more understanding and empathy the general public will acquire.
The second stage is trying to stop people from making hurtful remarks and reporting in a discriminatory manner in the media. To this end, I found an article recently about an American by the name of Stella March, who also has a son with schizophrenia. She worked with NAMI in 1995 to launch a campaign against discrimination directed at the mentally ill. She soon realized that stigmatization deeply imbedded in our culture was the forerunner to discrimination. Consequently, a group was formed and StigmaBusters was founded.
First, Stella attempted to work within the media, particularly Hollywood, before she realized that it would not work. Producers of films, writers of scripts and authors of books would lose money if they stopped production after the fact. So she changed her tactics to one of educating instead of censoring, by informing corporations, media and authors of the harm they inflict upon a large group of people when they allow derogatory remarks and when they allow works such as the film starring Jim Carrey, entitled Me, Myself and Irene, to be made. At one time, Nestlé produced a line of Tasty Tangy Taffy bars featuring wrappers bearing names such as "Psycho Sam,'' "Loony Jerry'' and "Weird Willie.'' Nestlé was persuaded to change their packaging, perhaps aided by a letter from former First Lady Rosalynn Carter. Stella reported many other instances of cooperation involving Disney World and other well-known television and film producers.
The StigmaBusters group also produced an education brochure in which there was a paragraph outlining every sort of mental illness followed by the kind of language that hurts and stigmatizes. She sent 8,000 copies of these brochures to the Writers Guild of America. She also sends letter of commendation when good things happen, as in the case of the film A Beautiful Mind.
I believe we can use a plan like this in every province. Perhaps this could be another job for the Canadian Mental Health Association.
You can visit the StigmaBusters website and you can e-mail Stella. I can give you the address, if you wish. I have given it out over and over. The group started with 950 people on its mailing list. There are now 15,000 concerned people all over the world working to eliminate the stigma attached to mental illness by receiving StigmaBusters alert emails.
Perhaps because I have been a teacher, I cannot help but feel strongly that our population should be better informed about mental health issues. As a result, I took it upon myself to send letters to as many media outlets as I could contact throughout the province of Nova Scotia when I learned that the province was contemplating revising its Mental Health Act. At that time, I also mentioned the Kirby report, but did not go into details because I did not know any. I have also on several occasions written scathing personal letters about the breakdown of mental health services to the Government of Nova Scotia, with copies to the Leader of the Opposition as well as the newspapers.
At this time, someone has the huge job of educating the public about mental illness. Perhaps we should change the terminology to "mental wellness.'' We need to put a face on the subject and let the public know how many kinds of mental illnesses there are, especially in relation to other sicknesses. People should know that people with a mental illness can lose everything they hold dear, sometimes never to regain it. For instance, how many people develop schizophrenia? I am sure the people would be shocked to know that it is as many as 1 per cent of our population, and this is consistent with other countries worldwide. How many people have bipolar disorder? How many people suffer from a debilitating depression that can keep them in bed for most of the day? How many will commit suicide? In fact, one in five Canadians at some point in their lives will develop a mental illness of some kind — and it can strike without warning in any family and at any age, whatever their circumstances.
Many newspaper articles are misleading regarding the expenditure of money for mental health. While the sums quoted seem enormous, there is never an explanation for why this amount is insufficient for what is truly needed. Because the public is ill informed, they tend to believe that all is well with the system. However, for those of us who are involved in the system, trying to obtain treatment for our relatives, we know better. All this should be public knowledge. I note that millions of dollars can usually be found to help businesses, but the same does not apply to mental health.
There must be a reordering of our national priorities, with mental health at the top of the list. It is a question of sharing the wealth of this country more fairly. I would like to see a separate budget set aside for mental health, with guaranteed accountability, with never any cutbacks, at least until the huge backlog of needed services has been dealt with.
Municipal and provincial governments also have a responsibility of improving the lifestyle of our mentally ill. People with mental illness should not be reduced to living on the street or in shelters and begging for food. Governments and the general population need to know that these people are ill, that they cannot help themselves and that they need a lot of help to take that step up. Only then will a person with mental illness be able to have a more normal lifestyle. With this kind of information, the public will be better informed and perhaps have more empathy. Stigmatization may not become so ingrained.
If we could prevail on all governments to give the issue of mental health the same kind of priority that child welfare received this year, it would help overcome past neglect. We have all seen the advertisements about diabetes, the hidden disease, or the national program on the hazards of smoking. The issue of mental health needs to be the subject of a public awareness campaign similar to the ones I just mentioned. We also need to advertise where to go to get help for mental health and addictions. We need to advertise in schools, libraries, stores, theatres, bus stops, anywhere and everywhere that will catch the public's attention. This will also serve to raise public awareness. If we can have a nation that now speaks of cancer as an everyday topic instead of the forbidden subject it once was, surely we can do the same for people with mental health issues. Only then will they begin to feel accepted and not ostracized from the mainstream of society.
If memory serves me, there was something in your report where you questioned how changes can be accomplished to an established system. There has to be a softening-up period, where information is discussed with various departments, much in the way you have developed this report. Perhaps if they are made aware that it is foremost in the interest of mental health patients that the changes have to happen, with the emphasis on "have to,'' it may sponsor ideas and goodwill.
Catching the illness early, with appropriate medication, results in a more normal lifestyle than could be possible with the older medications and a later start at recovery. For people like my son, however, the future is bleak, if the medical system does not come to the realization that there are many older, chronically ill people who need specialized programs to bring them to wellness.
Thousands of dollars are spent each week on patients who will not stay on medication. Who do patients stop taking their medication? My son, for example, is intelligent enough to know that it is a necessary requirement for him to get better. However, he does not feel he needs medication. We know how ill he can be and worry that more brain damage is occurring. Historically, psychoanalytical theories predominated to explain poor decision making in schizophrenics. Defensiveness was one theory, stubbornness another, and even cultural values were suggested. However, recent research has another explanation. Dr. Xavier Amador, a well-known psychiatric researcher, suggests that people with pervasive problems, with lack of insight and illogical ideas, suffer from neurological deficits. They can be helped, however, with special programs.
That is what I find frustrating, because I do not think many of our medical people have caught up to that kind of research. I know that research is 10 years old, and that they should know about it, but I do not believe they have. So, consequently, there are no programs directed at this special disability.
As far as my son is concerned, it is as though he is living in a time warp of when his illness began over 20 years ago. People like my son believe they have the same abilities and same prospects they enjoyed prior to becoming ill. This is evident whenever my son discusses unrealistic plans of moving to another province or getting a job.
I sat in on a group meeting with my son at the time of release from hospital some years ago when plans were being discussed for his release. In a short time, he became furious and left the room. I now understand why. Everyone was telling him what he could not do. He was sure they were overlooking his abilities and intelligence. He was insulted. The hospital staff was right, of course, in their own way, but they were also lacking insight.
As I said earlier, there has to be a reordering of our priorities, a reordering that puts mental health at the top of the list. There needs to be centralization of research, budget, personnel and programs. The federal government is the logical choice to coordinate everything, so that each province is able to treat their mentally ill with equality, unlike today.
Speaking of centralizing, my husband, who is a disabled veteran, has had to deal with the Veterans Affairs Department of the federal government over many years. He has always been met with efficiency wherever has been living. Centralization has worked in this area.
A short time ago, I took some pamphlets to a doctor's office in a small town in the Maritimes and asked him if he would place them in a conspicuous place on his desk — because I knew some of his patients included parents of newly diagnosed adult children with schizophrenia. He told me he could not oblige me because it would make many of his other patients uncomfortable.
There is also an urgent need to let people know that violent behaviour of people suffering from schizophrenia, for instance, is usually in the same range as the general population, and so is their intelligence. The newspapers, at times, have a field day with negative stories involving this illness. It should also be noted in the media that the welfare of these people has been neglected for many, many years.
When mental institutions emptied because of the advent of drugs, the money saved should have been spent on much-needed housing and outpatient clinics as well as on research. Instead, we have wound up with a woefully underfunded system with a very serious problem in delivering needed services. Very few, if any, innovative programs have been developed. Research was left up to the big drug companies, and we now pay a very high premium whenever we use their drugs.
The indifference of past governments has resulted in the neglect of mental health issues. I feel very strongly that the public must be fully informed so that they will know why mental health should become a priority. In your report, chapter eight, when you mention that those patients with severe and persistent mental disorders have been badly served by insufficient funding, this is what you were informed of. Well, I concur absolutely. My son has been in his mental hell because there are insufficient programs. Programs that have been attempted in his case largely fail because of lack of money.
A recent example is where I asked to have a case worker and a psychiatrist. It is a team approach. It did not work for him because he is a very difficult patient. He needs to be seen daily, not once a week or twice a week — or, if the psychiatrist is unavailable, not for couple of weeks. It does not work with him. He needs a rigorous program with lots of preparation, and they have to get to know him. I know my son is not typical, but he certainly is not unique. There are many in his age group where this has happened.
There are not enough personnel, not enough training that the program gives us, not enough hours, not enough research. I am now desperate to obtain help for him. My only recourse I fear is to go to the United States and find out what they are doing there — and that is a condemnation of our system when we cannot find anything that is going to work.
I would like to see money used in a different way. We do not need large hospitals. I believe we could use smaller clinics all over, in cities, in rural areas. You need smaller clinics, informal, staffed by paramedics that are trained in dealing with patients that require psychiatric treatment and that have to be administered medication, with one supervising psychiatrist. In this electronic age, a psychiatrist could have maybe five or six clinics under his supervision. People can hand out pills if the psychiatrist tells them what to do. As well, if the atmosphere was informal, a drop-in type of atmosphere, where the patients are welcomed by first names, there would not be this hesitancy about receiving help.
In Calgary, many years ago, there was a drop-in centre called the Mustard Seed. One time, when my son was on the road and I finally found him, I got in touch with the Mustard Seed. I asked them to please give him money occasionally, every month or whenever he needed it, and to keep in touch with me to let me know how he was — because I knew I would never hear. They explained their program to me, and the bottom line was that they were non- judgmental. They would accept anybody. They knew if an individual was mentally ill, and they would watch that person. They would not go up to the person and say, "Hey, you need medication.'' They would watch the person, gain his or her trust, and when they thought the time was right they would try to get the individual to take medication or go to a hospital, that kind of thing.
My son did not benefit from that program — because he became very nervous when they began to ask too many questions, and he left. However, I did hear that they were successful in helping other people to get on medication, by their attitude, by their reception. That is the kind of thing we need to develop.
Mr. Chairman: Sheila, because you have a long presentation and I want to make sure we have time for questions, can you hit the main points?
Ms. Sheila Morrison, as an individual: Yes, I will try to do that.
Mr. Chairman: We will all read it in its entirety. Thanks.
Ms. Morrison: Thank you very much for listening. You have no idea how much it means to us, really. Everybody has pretty much told my story, and everything that everybody has said this morning applies to me, too.
Our daughter is 31. She has paranoid schizophrenia. She had a wonderful life until she was about 16 and in high school, then she fell ill and until just recently has been in the hospital ever since, till the age of 31. She has just recently been discharged into a small options home. So, my experience has a lot to do with what being in the hospital is all about and, more recently, what the transition to the larger community is all about and, in particular, learning how to become a valued citizen. Being somebody of value and worth is just so difficult.
I am an educated person. Between us, my husband and I have five degrees. I have worked in the hospital system. Nevertheless, I cannot begin to tell you how difficult it is to navigate the whole system.
The first and the worst experience occurred when my daughter was first acutely ill. Because she was over the age of majority and therefore legally independent, we were not allowed to give a history for her for days and days. She had never left our home, because she was a little bit socially immature. She had never been away from us. She had never had friends, which in retrospect was part of her illness, but we did not know that. We were not allowed to talk to staff. It was unbelievable. We were both professional, well-spoken people. I did not know aggressive I could become. I am a very, very angry lady, but I have learned how to tame it, However, I have also learned how to use my anger well, and I do not hesitate to ask "Who is your boss?'' and just continue to demand what I need. That is too bad. I do not like being that kind of person, but it has been very necessary.
I am very upset by the lack of visibility of treatment. We say that the illness is invisible, yet services and supports are also very hard to find. You can walk through a mall, have a toothache and see a dentist's office, which prompts you say, "I have to go home and call that dentist to get my tooth fixed.'' However, when you walk through a mall with a little bit of anxiety as a caregiving mother or a daughter with schizophrenia walking along with her mother, you think, "Oh, I have to get the hell out of here.'' You do not think about, "What am I going to do today about my anxiety?''
Hence, the lack of visibility of services really bothers me. I like the idea of collaborative care — it appeals to me — but I do not think necessarily that putting all the services in one place next to the doctor's office is going to improve that visibility. Visibility has to go hand and hand, of course, with public education, which is what we have heard over and over this morning. I think that is the first step.
Another thing that bothers me is the lack of talk about the brain. People talk about having a bad tooth, having a hearing problem, having blood pressure problems — but they do not talk about the brain. Why are people not able to say, "I have a brain problem; I am going to the brain clinic''?
There is a distinct lack of hope. "Hope'' is a word that is really important. It is kind of airy-fairy, but for somebody who is sick and mentally ill, lack of hope is what leads to suicide. Lack of hope needs to be talked about, and I think hope needs to be a desired outcome. Lack of hope is so dependent on the lack of services that we have been talking about, so I would like to see the word "hope'' in the document somewhere. I would like to see the words, "brain,'' "visibility of services'' and "hope.''
For us, multiple services and supports did not exist. In the hospital, the nutrition was appalling. My daughter has a condition that requires special nutrition. Like Jan's daughter, she gained weight with medications. As well, my daughter has a calcium absorption problem and she is a vegetarian. However, we could not get those things catered to at all in the hospital. It was terrible. I spent years running across the bridge to the Nova Scotia Hospital delivering at least two meals a day, because I felt my daughter was suffering from lack of proper food.
Our experience has been with the Abbey Lane Mental Health Program and the Nova Scotia Hospital, and there are some really good people there. In the Nova Scotia Hospital, in particular, there are some gems, some really wonderful people, but they are really frustrated by the system. The environment of the Nova Scotia Hospital is lacking. It is depressing to look at and the noise levels are terrible. My daughter would be out with us for the day, have a full, normal day of activities, church, visitors, restaurants, and so forth, all the while being paranoid and so on, but dealing with it, and then when we would return to the unit, walk into the unit, nobody would greet her, somebody would be screaming in the isolation unit. I would have to tell my daughter to go to her room and shut the door, just try to block it all out, not to worry, the nurses are just tired. That is the daily reality.
She was there for most of 10 years, and yet it never felt like home. She had to carry her meals on a tray every day. She had to line up for her pills.
The best people in the Nova Scotia Hospital system — and I hope you can find a way to thank them for me — are the cleaning staff, because they do not have to do anything to you when you walk in the room. They do not give you a pill, they give you a hug. They are fantastic and very important.
In terms of comments on culturally appropriate services, of course, I am from the mainstream, so I cannot speak to that very well, but I do have a culture, too, and our family was culturally active. Our house is lined with books and we attended the theatre and we had that urban experience of introducing our children to many, many things. That was missing from her experience in the hospital and we were constantly taking her out or bringing things in to her. I tried so hard to stimulate her by bringing in an art therapist, who was not regarded as part of the medical team, of course, and by bringing all kind of things in, whether it was music or art or whatever. I was never made to feel that that was an important part of her recovery, yet to me it was the main part after the medications.
There is no information in the hospitals. If you walk into an eye clinic, you will find a pamphlet on glaucoma, a pamphlet on retinitis, a pamphlet on a multitude of eye disorders. However, if you walk into a mental health care facility, you will not find anything. I walked into the outpatient clinic at the Abbey Lane the other day, and there was a little brochure table with only three or four brochures on it. I went over to the desk and asked, "Why is there no information there for me?'' The girl replied, "Oh, the drug representatives have not been around lately.'' I was shocked. I have never to this day picked up anything in a hospital that was useful to me.
I wish there had been a screening process in schools. I was told when my daughter was in grade 4 that she was going to have a problem. I was offended — but she did have a problem. She was quiet and shy and that was probably the beginning of her illness. She was a good, quiet baby, right? I look back now and think it was there from birth. That teacher offended me. Really, I wish she had referred us to somebody. I did go off and look for a psychologist on my own, so I did hear the message, but nobody screened her. Again, in high school, the same thing occurred. She was in grade 12 in the psychologist's office, throwing up in the wastebasket with anxiety, but nobody suggested that we should do anything. When we took her out of school in January of her grade-12 year, the school breathed a sigh of relief. Hence, screening processes are very important.
We found a lot of community resources on our own. We have worked hard. We have lots of them, two of the best. One is called SpellRead. I actually work there as an instructor now.
Mr. Chairman: It is called what?
Ms. Morrison: SpellRead P.A.T. — for phonological awareness training. When a child or an adult goes in there with learning difficulties, there is not a single person on that staff that does not work on self-esteem building. They are there primarily to teach people to read. As you know, we have a huge literacy problem, which leads down the road to mental health problems, lack of work and so on. SpellRead are an incredible group of people who build self-esteem in young people and bring literacy levels up quickly. The program is all scientifically evaluated. Dalhousie University has done fantastic studies on how the neural pathways in the brains are changed by this program. So, that has been very good for my daughter as well.
Another example of a community effort is the Veith Street Gallery for Artists with Disabilities, who have showcased my daughter's artwork, as has Government House, and have helped her market her work. She was made to feel, as she rightly is, like a functioning artist.
Discrimination and stigma are a big part of the problem, as we all know, but it is especially true in the hospitals. I feel there is stigma among the hospital staff themselves in their treatment of the mentally ill.
I have never been offered suicide prevention training. I think I still need it. I would like to have that. There were no psychologists in the Nova Scotia Hospital who could counsel. There was a neuropsychologist who eventually did testing, but there was nobody to counsel my daughter. We were never offered counselling in 12 years of dealing with mental illness. We went to a private psychologist and paid through the eyeballs, but nobody ever suggested it. I crossed the parking lot to outpatients one day and said, "There is nobody in the hospital who can provide my daughter with therapy while she waits 12 months to get a small options home. She is ready for discharge right now, so could you step in and take over?'' No, they could not do that because she was not an outpatient. We had a long wait to get out of hospital and that was very, very hard.
There are severe shortages in nutrition, psychology, recreation, pastoral case. You asked a question about spirituality. I have to tell you, we are not a religious family. We do not practise a religion, but we have taught our children to respect all religions and taken a rather academic approach. Our daughter wanted a church, so I went shopping and I had the same experiences as the gentleman who sat in my seat earlier. It was very difficult, but I eventually did find a church that was extremely liberal, quite secular, actually, and it has taken me about four years to kind of make myself comfortable in that congregation. The end of the story is that there was a coffee house last Saturday night and my daughter played the piano for the first time in public. I am going to cry now. She had played in a lot of school of concerts, but she played the piano for the first time in public and stood up before she played and spoke about being somebody who has schizophrenia and that she hoped they would accept that and said that she had been studying hard and preparing for this concert. So she can now speak to the public.
Even though they are a worn out, tired, sick population, including the caregivers, there are people, such as the ones who were at the Inspiring Awards luncheon, who can speak up. We need them badly. I think my daughter can become a really good spokesperson. She would be great on a TV ad campaign now.
We had two really bad experiences that I think we can learn from. One was not having the history taken when we went in the hospital for the first time, and that just tore us apart. We eventually demanded it and we eventually got an intern who would listen to us — but I am sure the report was never looked at because it was never responded to.
The second was a terrible experience in the Abbey Lane where my daughter was extremely psychotic. We did not know what a psychosis was. She was very, very ill. We were very frightened. She became unclean and they told us it was a behavioural problem, that it was our fault, it was poor parenting. She became dirty because they were doing this behavioural management thing, and they were not feeding her and they were not keeping her clean. She developed a vaginal infection. My daughter had never left home and had never had a relationship. They did not bother to take the history, so they did not know this about her. It took either four or six people, I am not sure how many, to hold her down in the isolation room while they did an internal examination, the first one she had ever had. For two years, my daughter said she had been raped, and for two years I battled with the patient representative to get some sense of justice for my daughter. All I wanted was the doctor to come down and say, "I am sorry.'' I had actually signed a paper that said "no medical procedures without calling us first,'' but they never called us until after it was over. One lady called us and said, "I just want to warn you that she might be a little upset when you come in.'' So, really, that is the one thing I never want to see happen to anybody again.
I like the idea of a national action plan. I think you have to start there, because there are bound to be difference between the provinces.
The reference to video-conferencing struck me. I do not know a lot about it, but I have a son in the film industry who kind of keeps me up to date. I think we have moved well beyondvideo-conferencing. I think you could have a family sitting in the living room with a telephone and an interface with the television and the Internet and a doctor at the patient's bedside, all having a conversation. I know a lady who has two children and a husband, all with schizophrenia. What a joy it would be for her to be able to talk to the doctor by her son's bed while looking after her family at home and be able to interface that way.
I will stop there because everybody else has said what I wanted to say.
I just have one quick comment about the attitude of other people that you were asking about. My mother, who would be in her eighties today if she were around, was living downstairs when my daughter first got sick. We had a nice home and good kids. My mother said, "What in the world has she got to be depressed about?'' My mother never got past that lack of understanding, no matter what I said. It was hard for me to educate my mother.
Mr. Chairman: I want to thank all three of you for your comments. We have a number of questions.
Senator Cook: I made notes as I listened. I am on information-overload; I need to get focused or I will risk the wrath of the chairman.
Joyce, you talked about the need for education and publication, and you talked about stigmatization and went right on to the Mental Health Act. With the creation or the formation of something more user-friendly, if it manages to pass legislation, would that help destigmatize what we are facing here? I realize that you cannot legislate common sense either. I will run through my questions and then you can respond as you wish.
You talked about dedicated funding that crossed the four years of political elections — in this case, they are almost every four months. You mentioned cancer and the fact that it was once not talked about and the strides that we have made in that terrible disease. We are not scared to mention it any more because we have all seen the "cancer can be cured'' banner a number of times.
Ms. Taylor: Yes.
Senator Cook: We need to break through that glass ceiling with what we are challenged by here.
The other thing you talked about was management leading to recovery. I think that is our challenge, to focus on recovery. If we say that cancer can be cured, well then recovery is possible.
I picked up on a number of things when you talked about your son accessing medication. I read a publication not long ago where it is now possible to receive a needle for schizophrenia that will last three weeks, but the trick is you have to go to a professional to get the necessary medication. I am wondering whether these would be options, if we were delivering a range of services in a community. I come from Newfoundland, which is very rural and spread out. Community health clinics might offer some of the answers to what we are dealing with in a wholesome way.
Jan, you talked about the need for monetary assistance and being penalized for being able to sacrifice to help your daughter. I think that is sad. You talked about teenagers with mental illness not being lumped together with those suffering from drug and alcohol addictions. I had not heard that before. You also talked about the "eight to four'' syndrome in our hospitals when we should be running them 24/7, and we certainly heard that a number of times.
Sheila, your presentation was very challenging. I like the idea, and we have talked about it at length, of the emerging professional, the nurse practitioner. I think there is a role here that we can build on, to see that operate in the area of community-based clinics. The electronic health record has certainly touched us. The national action plan, I want to thank you for that. I did not have any questions, but you share a lot my hopes and challenges.
I would be happy to hear any comments you might have.
Ms. Taylor: I just wanted to comment on the medication that you mentioned, the depot needles, depot injections. They are marvellous. I cannot get my son to take any, but this is one of the answers. If we can get patients onto depot needles, the medication will be their system all the time. They will not forget to take their medication. It does not fluctuate with their body. It is there at an even level. In my opinion, especially in the case of difficult patients, that is where it needs to be. Granted, they are more expensive, but as I say, in my son's case, it is a question of psychological problems. He is going to need a great deal of help before he will take any medication now. I will not say it is too late, but it is almost getting there.
Senator Cook: What about the legislation you referred to in Nova Scotia with a provincial mental health act? Do you see that it might be possible for us to have one overriding federal mental health act?
Ms. Taylor: Yes, I would like that. Yes, I think we could do that, especially with all the work that has gone into this.
Senator Cook: With the cooperation of the provinces again.
Ms. Taylor: Yes.
Senator Cook: That is the challenge, to deliver service provincially.
Ms. Taylor: Yes, I know, but I honestly do believe that with each province having its own mental service — it is not equality of service, believe me, and it can be.
Senator Cook: Yes.
Ms. Taylor: It needs centralization — because if one province discovers something and does not share it with someone else, it is pointless. You may be struggling with a problem that someone in Alberta has the solution to. I firmly believe there has to be centralization, and the only place, I believe, to create that centralization is in the federal government. The only one who would opt out of that, of course, would be Quebec — because they do like to do their own things. However, even Quebec could learn from what is going on with the federal government.
Ms. House: The problem with the nine-to-five syndrome is a really big one, especially for caregivers. My husband and I live outside of Bridgewater, and I cannot tell you how many times during the night we have had calls — two, five o'clock in the morning — where we hop in the car and come down here. When Rachel was in the hospital last year, the medical team said, "We have noticed that you called the crisis line `X' number of times but your daughter only called once.'' Well, she was in crisis. That told me they did not really know what that meant. I replied, "Well, if it is inappropriate for me to call, if I just leave it, she could be dead.'' She is a prime candidate for suicide. The one night when she did call the crisis line, she was told to take a pill or to make an appointment with her doctor. She called me, and she had been out on the railway tracks in Dartmouth. Thank God nothing happened, but she said that had she not gotten me, she would be dead.
As a result, as a caregiver, you are in jail as well, because you are afraid to go anywhere for fear that you are going to miss a call — and you do not have the trust that you need to have in the system. That is what I have found, with the exception of the few that I have mentioned. Very often, we have felt very hopeless, very abandoned and ignored. I think that really does need to change.
When Sheila mentioned hope being included in the final report, that is important, because hope is what is lacking. As a young person, that is what my daughter said. Why should she bother taking her drugs, if that is all they could offer her? It is a life on medication, with no friends, living on social assistance, no future. What was the point of living? I had to agree with her. I always thought that if she did kill herself I could forgive her, because she would be at peace.
It is awful for you to have a son that has come to the age that he has reached and has missed so opportunities, but it is not a good enough excuse for not making that possible for the next generation. Again, the key is getting to people early.
Why are there not pamphlets in the hospital? I have noticed the same thing. We are invisible. People talk about stigma and stereotype related to persons who look mentally ill or who are developmentally challenged. However, people like me daughter also suffer from stigma and stereotyping. If I were to show you a picture of her, you, like our relatives, might say, "She looks just great.'' They say things such as, "Do you not think she is being a little manipulative?'' and "If she really tried, she could get better.'' So, the only way people are going to get the message is if they hear it.
Ms. Taylor: Yes, through educating them.
Ms. House: We must also deliver the message. It has mainly been us doing the work, looking for places that can help us, that can help my daughter, that can help get a message out. I have volunteered for just about everything I can, including coming forward today — which I am so happy about. This opportunity has presented itself to get our voices heard.
When it comes to going into the schools, I think that is vital, too. It is important to identify who are the mentally ill. There are young people, old people, people who are mentally challenged. One description does not fit all. If people who are speaking are from the older generation of drugs and are borderline, and you expect young people to come forward and say, "I have a problem,'' there is absolutely no way that is going to happen.
At university, my daughter was able to mask it for so long. I phoned the university and said, "Do you not have any support group there? You cannot tell me that there are not people at the university who need this help.'' They said, "Well, we cannot get people to come forward.'' Then when I phoned the medical side, they said, "The university will not let us in. They do not have the personnel to run it.'' I do not know what the problem is there. It stems from all three groups. Young people like my daughter say that it was very easy to mask, because at university lots of people drink and try drugs; they experiment with a lot of things. That is considered normal, so you can pass as normal. However, the worse thing about that is the toll it takes and living the lie.
When an individual finally seeks help and discovers the reality of a particular mental health illness, the response often is, "Well, no, I cannot have that because I cannot be part of that. I cannot be part of anything.''
Mr. Chairman: "I certainly cannot admit it,'' anyway.
Ms. House: No.
Mr. Chairman: That is right.
Ms. House: In terms of employment, for the last six months, it has not been perfect, it is difficult to accept that it will never be perfect, but it can be better. We are seeing a little bit more clearly what holding down a job does. What a small thing, but what a big thing.
Mr. Chairman: Yes.
Ms. House: To start in your early 20s on social assistance and drugs for your condition, knowing this is how your life is going to be, no thank you.
Mr. Chairman: Sheila, did you want to make a comment?
Ms. Morrison: The idea of using nurses is great. Psychiatrists for the most part do not have time to do the counselling. I have found them to be pretty good with the medications, but they are stymied by this law or rule about having to try all the old drugs before getting money for the new drug. As a result, my daughter spent a couple of years losing ground, because she had to go through all these trials while the doctors were saying to us, "We know this drug is not going to help your daughter, but we have to try it before we can give her something else.'' So she went through many six-month trials before she finally got to the drug that we hoped would help her, and even then she was one of those people who did not respond very well. We still had to go through trials of the newer ones as well. That was heartbreaking.
There is a great need for resource centres for obtaining information. I have to read bulletin boards and telephone poles and talk to people and make phone calls. I need to find resource centre, where I can go and pick up information and talk to people. Resource centres are such an important starting point, I think.
In terms of work, yes, my daughter has done little bits of volunteer work — which has just been thrilling to her and has built her self-esteem so much. She is just starting to do that again and I see that as vitally important.
With respect to suicide, I came to the same conclusion. It is terrible to say, but if my daughter killed her, I would understand. My daughter has said to me, "I do not know what there is for me when I am hearing these voices and I cannot do this and I cannot do that. Why am I here? I would be better off dead.'' We have had intellectual conversations at times where she has had insight and can be quite academic about it, and it is very hard to come up with a reason to live.
Senator Cordy: I do not know where to start. Every time somebody says something, it raises so many more questions for me. Luckily, I have taken some notes. I guess I look at family support as being one of the key things. We have heard over and over from people trying to work through the maze of the mental health care system on their own. We had somebody from the government appear before us in Ottawa, and I can still remember the diagram of all the services that were offered. I said, "If somebody phones me, where do I tell them to start and how would a person with a mental illness know where to start?''
I guess what I would like to know is this: Is there enough support — in so many ways? First, when a child is diagnosed with a mental illness, the emotions that you as a family unit go through in trying to cope and struggle with helping your child and knowing what to do can be overwhelming. Jan, I know you spoke about Dr. Duffy including you as a family unit. Sheila, you mentioned searching for what you could do, suicide prevent courses, those kinds of things. Is there anything out there for families in that line?
Ms. Morrison: For me, it was just a girlfriend that I walked with and, recently, the QUEST team, which is a transition team for my daughter while she is moving from hospital to community. The team has been wonderful because they have gathered all 17 of the people who are involved in her care together and said, "We need a common language. We all need to be using the same vocabulary so that she is well handled and well managed in her environment.'' That was a big step. So, having a team of people with somebody at the top who could listen to the whole team and sort out the language differences and make sure we all had the same goals and the same plan, and that she was included, of course, in that, has been helpful, yes.
However, other than this transition team, it has been very lacking. I would say that over the last 15 years, my husband and I — and God bless any single parent — have been extremely private in our grief because we had no time to go find help, and it was not obvious if it was out there. I knew I could go to a private psychologist to talk to, but what is the good of that? They have to see the whole family, right? It was not about me, it was about us. I think it needs to be part of the patient's care plan to include the family, and that was never offered.
Ms. House: The Early Psychosis Program that we became a part of three years ago was really helpful, but we had already been on that road for quite a long time. That is not totally the fault of the system, either. A lot of that was getting a true diagnosis and a lot of that had to come from my daughter being able to acknowledge that she was experiencing psychotic episodes. So by the time we got to the family group, a lot of the education and so on that was going on there at the Early Psychosis Program was geared to people who were very new to the system, within the last six months. We had already been there and found a lot of the information.
Again, it was a matter of picking up any books I could read. I, too, read too many bulletin boards and anything I can get my hands on to look for help. In our personal case, a lot of it was talking to our minister because we are active in the church. I went to a meeting of the Schizophrenia Society when we first moved to Bridgewater, but I was so frightened after my first meeting there — I had to leave because I just got too upset. There were people there in their fifties and sixties — and my daughter was 18 or 19. I was scared out of my wits that would happen to her. There were no parents there. In fact, a lot of their parents were dead or not involved. I think there really is a lack of support and information.
A lot of comfort for us has come from talking to friends.It has been helpful talking to the doctors that have been involved in my daughter's case, but with even the Early PsychosisProgram, because we are such a distance away, when my daughter is in crisis, up until the last six months, I could be down here maybe a couple of times a week, driving back and forth. I had a mother-in-law who was in a senior facility, so, between the two, we were just kept moving between crises and trying to carry on ourselves. At times, it has been very difficult.
Senator Cordy: My husband's sister is schizophrenic, and from a family perspective, I know there were times when we said to the system, "We understand why so many families drop out because there is so little support for families that want to help.'' If a mentally ill person does not have family support, then they do not have much of a future or much of a hope.
Ms. Morrison: It is not just a matter of not getting support — you are made to feel unwelcome, and even my daughter was made to feel unwelcome.
Senator Cordy: One of the things you spoke about, Joyce, was medication and non-compliance with taking medication. Certainly, the needle has been a godsend in many ways — because schizophrenics particularly do not feel they are ill and will, in fact, just put the pills under their tongue until the nurse or the doctor leaves and then spit them out.
A lot of patient advocacy groups say that people who are mentally ill should not take their medication or should not be forced to take their medication. How do you feel about that?
Ms. Taylor: I know this is a very controversial subject — and I have been involved in that, too, because of the new act legislation that is coming into Nova Scotia. There is an order that a judge can make —
Mr. Chairman: A compulsory treatment order of some kind, yes.
Ms. Taylor: Yes, that is it, exactly. That is where the controversy is. In my gut, I know it is wrong to force medication on people and to lock them up — and, believe me, I have regrets about the number of times I have put my son in hospital. However, I do not see how else you can help mentally ill people — because without rationality, they cannot help themselves, and you cannot help them. So, if you can get medication into them, that is the first step. From then on, you can build. However, without medication, there is nothing to build on. That is why I would go for that compulsory treatment order. However, I know this is a very controversial subject in Nova Scotia currently.
Senator Cordy: I also wish to speak about the school system. In my other life, I was a teacher, and there were times as a teacher that it was very, very frustrating because we were often outside the loop. If you spoke to a psychologist or a doctor, it was often a case of, "Well, you are just a teacher; you really do not know what is going on.''
First, to get somebody to listen, let alone to take your word seriously, as to what the day-to-day activity of the child was and how that child interacted in a group situation of, ideally,24 children, but very often more like 30 children in the classroom, was very difficult. Secondly, to get a school psychologist to see a child often meant waiting months and months, because the school psychologist was often working in 18 schools or more.
How do we work to ensure that we do not have silos, that we do not have everybody going down parallel lines? How can we ensure that everybody works together?
Ms. Taylor: Teachers have to be taught how to recognize mental health symptoms and they have to be taught how to teach children not to stigmatize others.
Senator Cochrane: You say your son is in the film industry?
Ms. Morrison: My son is in the film industry, yes. He is not a consumer.
Senator Cochrane: Maybe he could devise some sort of an advertisement or something to give us some positive —
Ms. Morrison: I am working on him.
Senator Cochrane: Oh, good. I am glad because that is important. Sometimes it takes an initiative like that to be able to bring this issue to the forefront.
Ms. Morrison: Yes.
Senator Cochrane: Who knows? It could be sold to the CBC or other television networks.
Ms. Morrison: He produces a lot of documentaries, and we have talked about it a lot. He is currently working on something about autism. He is very interested in doing something with his sister, but she is not quite ready for that. It has definitely been a long topic of conversation.
Senator Cochrane: It probably will come.
I am going to be a little bit invasive here. I know you said your daughter's schizophrenia began when she was in grade 4. Do you think it mostly begins with adolescence?
Ms. Morrison: It varies a lot. In my daughter's case, she has a congenital syndrome, the main feature of which is schizophrenia, but most of the people with her syndrome have great physical abnormalities as well. My daughter is missing a tiny piece on a gene. It is just a fluke of nature. It might have been inherited, but in our case, it was not.
They are discovering that, with respect to people who have schizophrenia, many of them have a genetic defect, not all of them, but more than we might have thought. It is still quite unknown how schizophrenia comes to be. You may be born with a predisposition, but the symptoms do not appear usually until you are in your teens. That is the most common scenario. Some children have schizophrenia as well, but mostly it happens around the time of puberty — 16, 17, 18 is typically the story. I thought I had a normal kid until she hit 17 — but looking back, I can see that there were some difficulties.
Ms. Taylor: They are also telling us now that, althoughthe illness develops when you are around 19 or 20, thereare symptoms that you can recognize when they are around15 or 16.
In terms of training teachers to recognize symptoms of mental illness, that training should be part of their university course. At their professional development day courses, they can be informed on how to spot children they think may be in danger. They can also set up in their social studies how to combat stigma and how the children themselves can recognize symptoms of mental illness. I think this is a perfectly easy thing to do. It would not cost very much money, except that it would take a nurse, a school nurse, going around the district to make sure that things are being said in the right way and that children are being attended to.
Senator Cochrane: I wish to share a personal story with you. When my nephew was about 18 and 19 and at university, he called me one evening to ask me to pick him up at the airport. I asked him what was wrong, and he told me that he didn't know but that he had a problem. So my husband, Jim, and I picked him up at the airport — and it was obvious that he was very restless. He was all over the place.
We offered to take him to him mother and father's place, but he said he did not want to go. Finally, we did get him to agree to visit his mother and father, who lived about 30 miles away — because I did not know what the problem was and I did not know how to handle this situation. After we spoke to his parents, he was restless and wanted to leave. He told me that he wanted to leave with us, so we agreed that he could come home with us. When we got home — he was up all night and we were up all night.
The next morning, my husband had to go to work, and my nephew told me that he though I should leave the house. I asked him why, and he said, "I am afraid of what I might do.'' I said, "Do you really think so?'' He said, "Yes, I want you to leave.'' So I left and went next door to call my husband and asked him to come home right away. When my husband arrived, the two of us went into our home and told our nephew that we were going to take him to see somebody who could diagnose his problem. He said, "No, no, I am going to go with Jim.'' My nephew got into the car with Jim, and they talked for two hours.
In the meantime, I called a hospital 60 miles away, to see how to handle this situation, and they told me to bring him in. Jim and I got in the car and took my nephew back to Corner Brook, and we waited all day at the hospital. They told us that we should leave our nephew there. Do you know what they did? Even though there were so many negative things about this — they gave my nephew shock treatment. This was about 40 years ago. Anyway, he has not had a problem since.
Isn't that something? Honest to God.
Ms. Taylor: I will tell you a story. You would not think that this could happen in Canada.
When my son was on the street, I think one of the reasons he stayed away from us for such a long time was that whenever we could get him into hospital, we would, because we knew that without a diagnosis he could not be helped, and there was no rationality there to which we could appeal. We did not have an intellectual conversation with my son for about 15 years — that is how ill he was. Anyway, he was picked up somewhere on our side of the American border and he was taken to a big Ontario hospital. He must have been in his early twenties then. He told me much later that he was so frightened when he saw the place that it took four people to get him into that hospital.
We had not heard from him for a long time. Eventually, he called and said, "Mom, I am frightened.'' I asked him what was wrong. He told me that he was in the hospital, had been for quite a while, but that he was now in a forensic unit. I asked him why he was in there and he told me he did not know. You must remember that he is telling me in his words as a schizophrenic, because he is not intellectual in the way we are, but he let me understand that his companions were convicted murderers and violent criminals. I said, "Oh, my goodness, Brian.''
I called the hospital back to see if it was true, and indeed it was. That is where he was. I flew there immediately, and was there every day, all day, while he was there. He was in the forensic unit because they could not contain him in the hospital; he kept escaping. The forensic unit was the only secure place they could put him.
Actually, when I was flying up there, I was afraid that he was not in any way calm. He had not been calmed down in many, many years. I knew he did things impulsively. If he were with a lot of people who are "high,'' he could get into trouble. I know there were guards there, but you never know if someone would give him a bump over the head or something. It was really a very, very worrying time for me.
I thought, how could anything like this happen in Canada? But it did.
The Chairman: Yes.
Ms. Taylor: He had a similar experience in New Brunswick. The first time he was ever put into hospital was in New Brunswick — this was the old days, and that hospital is now closed — he was put in with people who had a variety of conditions, including mentally challenged individuals and people with special needs. He was 20 the — and I do not think he ever got over that. I am sure that is part of the reason he refuses to go to hospital.
Senator Pépin: We have been saying that the teacher has to be taught to recognize a child who is having a problem. What about medical students? We should start from there, too. When a patient goes to a hospital, let us say even to deliver a baby, that patient is asked, "Are you allergic to medication? Are you allergic to certain foods?'' Family histories are taken vis-à-vis physical diseases, such as cancer, but we are never asked about mental health in our families. Maybe it should start from there. When a child goes to school, perhaps there should be a note about a background of mental illness in his family. I do not know. That is only a thought.
Ms. Morrison: That is tricky, though, because people get labelled very easily.
Senator Pépin: Yes, this is another thing. Maybe we have to come up with another alternative, but I definitely feel that medical students should be better trained.
Ms. Taylor: However, if you take care of the stigma, then no one will be labelled.
Senator Pépin: It is true that cancer can be cured when the diagnosis is made early. With mental illness, often there is a wrong diagnosis or a late diagnosis and the wrong medication is given.
Someone, I think it was Ms. Taylor, spoke about smaller clinics. Were you speaking about a community health centre as being a place where individuals could go after they leave the hospital, or were you speaking about it as an alternative to hospitals altogether? In other words, instead of going to a hospital, an individual could go to a clinic on a regular basis to get medication. Were you thinking of something like that?
Ms. Taylor: I do not necessarily think they have to go there when they come out of hospital. In my thinking, it should be an established place, a place everyone knows about, where people could wander about on their own. They have symptoms, they hear voices.
Senator Pépin: Yes.
Ms. Taylor: It could be a place to drop into. My son has told me that he has gone to a big hospital but stopped at the entrance and would not go in. I am talking about a small place, one that is friendly and welcoming. As I say, if we try to get rid of the stigma, I think that would work much better than the system we have right now.
I know we have to have patients in the large hospitals when they are psychotic. I know there is no other way of dealing with them. However, those episodes do not last very long, so when they come out of the large hospitals they can use the clinics.
Senator Pépin: That would be great.
Ms. Morrison, you spoke about medication testing. You said that your daughter could have gotten a certain medication but that she had to take another medication for so many months because she had to go through that testing. Could you explain that, please?
Ms. Morrison: The medications for psychosis can be divided into old school and new school, and the newer ones are not covered by insurance immediately. Because the new ones are so expensive, a patient has to try the old ones first.
Senator Pépin: Is this mandatory?
Ms. Morrison: Yes. I am not sure where the power structure is, but in the case of my daughter, who really had a very poor record on medication, we were told that her best hope lies with the new drugs but that they could not administer them to her legally until she had had a trial run of the other ones, at which point we could go to the drug company and say, "She failed to recover with these medications, so we want these ones,'' and then the cost was covered.
Mr. Chairman: Yes, that same principle applies, to the best of my knowledge, in every province.
Ms. Morrison: Yes. I am probably not expressing it very well, but —
Mr. Chairman: Oh, no, that is exactly what happens.
Ms. Taylor: That is where the inequality comes in.
Senator Pépin: They do not have to pay for the medication like that.
Ms. Morrison: Yes, but it is a cost thing.
Senator Pépin: I know.
Ms. Morrison: Some of the newer ones are actually quite cheap, but some of them are incredibly expensive.
Senator Pépin: However, you have to go through that process.
Ms. Morrison: Yes.
Senator Pépin: I was not aware of that.
Ms. Morrison: When an individual begins an antipsychotic medication, it takes quite a while for the medication to build up in the person's system. You have to start small, and then you reach a peak. You find out what the therapeutic dose is, and then if it is not working, you have to taper it off. You then get to a point where you can get it low enough in the system that you can begin to introduce the next one, so it is about a six-month process.
Ms. Taylor: This is where inequality comes in, because Prince Edward Island does not have that long period of trial. You can get a letter from your doctor that says, "I believe such and such is the medication this patient needs,'' and that is enough, whereas in Nova Scotia, the patient has to go through a trial period. I think it is very unethical.
Ms. Morrison: I truly believe that my daughter suffered brain damage partly because of the medications, but also because of the illness itself being prolonged.
Senator Pépin: Ms. Taylor, you said that it is your wish that mental health would get as much attention as, say, child care. I agree with you, but it took more than 20 years to get child care on the agenda. However, it is a start and we hope it is going to be shorter than that.
Senator Cook: I do not know if you were present when I talked about the need for a national formulary for drugs this morning. This is one of our challenges, to create a national formulary across this country. If not, how are we going to have a seamless delivery of service?
Yes, Senator Pépin, in my province there are three drugs for schizophrenia. You have to fail two to get the third. As you know, the side effects of number one and two are horrible. If you do not have peer support or strong family support, an individual will often try one, perhaps two, and then give up. Often the individual will not get to the point of three.
I do not know a lot about drug companies and how they operate. My understanding is that research develops something and the drug company manufactures it. I am not too jaundiced about drug companies pushing a new product, because until everyone buys into the challenge we are all facing, drug companies included, we will not move forward. I am beginning to listen a little bit to drug company representatives when they talk about the new drugs, because my province has mandated two refusals to get to number three on one particular drug for schizophrenia.
So, that is our challenge. We hope you support us in this national formulary.
Mr. Chairman: Let me get back to the point that Joyce raised about stigma. Assuming the federal government is prepared to put money into an anti-stigma campaign, particularly one targeted at students, I think the odds on it being successful are enormous if we target it at, say, the under 25s, rather than if we target it at old fogies like us. I say that because you only have to look at the change in attitude toward homosexuality, for example, among the under-25 group. I am fascinated by the fact that, when all this business about same-sex marriage came up, university and high school-age kids were saying, "Like, what is the issue?'' All the polls showed that the under-30 group were skewed hugely to the attitude of "What is the issue?'' whereas the over-60 group were skewed at "This is a huge issue.''
The hope really is in changing the attitudes of the next generation, which is possible, I believe, if the federal government will fund it. I thought, getting back to your comment, we should at least end this morning on a note of hope.
Thank you all for attending this morning.
The committee adjourned.