Dr. Amy Bishop, accused of killing three professors at the University of Alabama and wounding two others, was never charged when she accidentally killed her 17 year old brother in 1986. It appears that her act was just swept under the carpet, no doubt by her family. The question I would like to see answered is whether her parents insisted on psychiatric intervention for her at the time. I suspect not, because Dr. Bishop went on to rack up a number of years of further academic study in a relatively short time. Getting her head in order would have come at the expense of academic achievement. Therapy would also have revealed a possible motivation in her brother’s death, therefore ruling out therapy as an option for parents anxious to put it behind them.

Redeeming herself by being academically and profesionallly successful at her brother’s expense, as her unpublished but seemingly autobiographical novel is reputed to imply, is misguided altruism in the extreme.

Reading Ron Unger’s post on the successes of the Family Care Foundation in Sweden has reinforced to me the value of staying the course with Chris, not getting stressed/worried/demanding, he will continue to be fine. The Family Care Foundation uses surrogate families and little meds. The families attend training sessions and receive group therapy and individual therapy and professional supervision. It sounds terrific, but begs the question as to why a surrogate family and not the genetically related family?

While it is generally acknowledged that a supportive family is a good predictor of recovery, it is also true that close family members, particularly the parents, are also the people most negatively impacted, i.e. feel that they have the “most to lose” if things don’t go well. This makes them in some ways not the best people to smoothly handle their child’s crisis. Looking at this another way, am I going to lose any sleep if my neighbor’s relative is not making his milestones, sleeping in and depressed or psychotic? Probably not. But I do care if it is my child and this concern will spill over, and in trying to be helpful, I may be creating further stress.

Another question that popped into my head on reading about the Family Care Foundation in Sweden, is how come it always seems to work in Sweden? I could use some therapy myself but I am not too keen on having strangers supervise me, having had to deal with psychiatrists for far too long who have turned Chris’s breakdown of spirit into prolongued medical meddling. North Americans have this view of Europe as much more sensible and humane when it comes to these matters, but is the reality really as good as they say it is? I live in a country with an illustrious past in psychiatry. The program that my son spent two years in was, in my humble opinion, no different than what you get in North America or other industrialized nations. It was all about the meds. The program was touted as being innovative (it has social workers and occupational therapists), but the reality was far from it.

Apart from the fact you are turning a personal family crisis over to management by others, the Family Care Foundation looks like a model worth emulating. Again, why just Sweden?

I am breaking my own rules about lengthy posts because I want to highlight in bold all the areas in Marvin Ross’s Sept. 2009 presentation to the Ontario Legislature where I feel strongly that he perpetuates the very reasons why people are not recovering from schizophrenia fast enough and in large enough numbers. While it is obvious that he is well-intentioned, his view of schizophrenia contributes to society’s high Expressed Emotion surrounding schizophrenia. Fear is a terrible incentive when struggling to get well. It cripples you before you can even begin. Fear has a handmaiden named guilt.

I feel that my son lost a minimum of two good years because I paid attention to the fear-mongering that I highlight below. Fear is not a good basis for making public health policy. Mr. Ross has bought hook, line and sinker what the pharmaceutical companies are peddling. He is obviously a fan of Dr. E. Fuller Torrey, who introduced me to the term “anosognosia,” a laughable term were it not taken so seriously by so many, meaning an “inability to accept the fact that you are sick.” How sad!

Of course there are too many people who need help and are refusing it or not able to access it. However, forced treatment by ineffective yet powerful drugs is no treatment at all and is a human rights abuse. There are effective treatments and strategies out there, some of which I highlight in my blog, but they are individualistic. Public health policy goes for the low hanging apples and a one size fits all approach. We have seen how successful governments are with this approach (not very).

I’m a parent, too, who couldn’t agree less with Mr. Ross’s solutions. In fact, many of the areas highlighted below I found to be simply untrue in my son’s case. My son is not a unique case, by the way. But I clung to the fear that if he didn’t take drugs he would relapse, if he relapsed he would be less and less able to recover, and the more I clung to these ideas, the less likely it was that he would recover. Fear is a not a good motivator. If you want your relative to get well, please have the courage to take issue with the status quo. This is all about your relative getting well. People should pay more attention to how well their relative is faring, and stop trying to worry about and think for others. If you want a solution imposed by society on your relative, lobby for the cheap, one-size-fits-all ones.

The presentation in its entirety can be found here.

Excerpt:

My friend, Ian Chovil, who I have written about is a case in point. He spent over ten years living on the streets with undiagnosed schizophrenia, addicted to drugs and alcohol.

In 1985, he was living in his car in Toronto when he was arrested. The courts sentenced him to 3 years probation and required him to see a psychiatrist. This he did in Guelph. He improved sufficiently that he was able to eventually get a job at the Homewood, a world famous psychiatric facility in Guelph and set up and maintain a very good informative website on schizophrenia. He is now retired. His website is chovil.com

He commented to me that “it is only too self evident to me that I have permanent damage that I must live with because I was not treated in the first six months. It is something that I think about everyday, something that I have to re-accept every morning.”

The longer that schizophrenia goes untreated, the more brain damage there is. The more frequently one has severe relapses, the longer it takes to recover and that recovery is not back to the same state the person was in before the relapse.

One of the reasons for this state of affairs is that many in society still do not recognize psychiatric illnesses as real diseases. Look at the recent report from the Ontario Ministry of Health called “Every Door is the Right Door”. A commendable attempt to improve conditions but they talk about prevention.

If they truly recognized psychiatric illnesses as diseases, they would not talk about prevention. After all, how can you prevent something when you don’t know what causes it. We can prevent a lot of heart disease, skin cancer and type II diabetes through life style changes because research has uncovered some of the factors causing those diseases.

Medicine cannot prevent diseases like Alzheimer’s, MS or ALS because it does not know the cause. Similarly, medicine cannot prevent schizophrenia or bipolar or depression because no one knows what causes them. We have theories and ideas but as of now, we do not have any understanding that could lead to primary prevention. And secondary prevention is just what I talked about a few minutes ago: early diagnosis, early and adequate treatment, rehabilitation, and health maintenance.

Schizophrenia is a disease of the brain that just happens. It is not a “mental health issue” a term that is often used. We don’t talk about people with insulin dependent diabetes as people with pancreas issues. They have a disease. Schizophrenia is a disease that causes or is caused by significant changes in the brain. There are well documented structural abnormalities, neurological abnormalities, neuropsychological abnormalities, electrophysiological abnormalities, and cerebral metabolic abnormalities.

And these changes have even been documented in people who have never been treated although the opponents of drug treatment would argue that the changes are the result of prescribed medicines and nothing else.

Imaging studies of the brains of untreated people with schizophrenia have shown that there are significant differences when compared to the brains of matched healthy people. The effect of antipsychotic drug treatment on these sick patients results in their brains gradually starting to resemble the brains of the normal healthy controls.

The people you see pushing a shopping cart with all their worldly possessions in it while mumbling incoherently to themselves, or shouting rhetoric on the street corner, or living in a cardboard carton are sick. They deserve humane care, humane consideration, and treatment.

SO WHY AREN’T THEY?

A large part of the reason is that we allow them to make their own treatment decisions – something they do not have the capacity to do. Part of their illness is their inability to understand. This is a condition called anosognosia. They are so sick and delusional that they do not know they are sick and refuse treatment.

And our society thinks that is OK. Most opponents of compulsory treatment cite John Stuart Mill’s On Liberty. Mill said that “the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others.”

When Mill wrote that, there were very few medical treatments for anything, let alone psychiatric disorders.

But, Dr. Richard O’Reilly, a psychiatrist in London, Ont and the former president of the Ontario Psychiatric Association points out that Mill also said in the very next paragraph, “those who are still in a state to require being taken care of by others must be protected against their own actions as well as against personal injury”

We do that for the elderly with serious dementia and Alzheimer’s. We do not allow granny to refuse treatment for her dementia and to live in a refrigerator box outside so why do we do that for young people with schizophrenia? It is cruel and inhumane for any caring society such as ours to allow people who are sick to remain sick.

In fact, the most effective anti stigma strategy is not to try to educate the public but to provide treatment for those who need it. Tragedies like the Virginia Tech shooting or the Greyhound Bus beheading only fuel negative views about mental illness. Preventing these events by providing treatment for those who commit them or who are likely to commit them do much better.

Psychiatrist Dr. Sally Satel, said in the New York Times that “no matter how sympathetic the public may be, attitudes about people with mental illness will inevitably rest upon how much or how little their symptoms set them apart.”

In the western world, with growing affluence, increasing attention to civil liberties, in the 1970’s mental health laws changed. They were re-written to protect individual rights. I am told that the authors of Ontario’s mental health act did not expect the result that has become so obvious over the past twenty years.

They thought the mentally ill would still get good treatment but within that right to receive treatment, their other rights would be protected. At the time cynical psychiatrists often joked about the mentally ill now being allowed to die in back alleys with their rights intact. The laws created due process, caused a careful examination of forced treatment, but were ultimately based on a fantasy that those without insight into their illness could make sound treatment decisions..

And the result has been that many seriously mentally ill have lost their right to treatment.

In several European countries, the same countries that have excellent social welfare systems, excellent systems for the care of the mentally handicapped, and countries that are renowned for their approach to civil liberties, it has been recognized that we threw away the right to treatment when our laws over-emphasized the civil rights of the mentally ill. And in these countries the laws have been modified to correct this. And it is the attitudes, resources, rules, practices and laws of these countries that we should study and emulate.

In conclusion, I would like to pass on some comments from my family. My wife suggests that if our health system cannot do a better job of providing treatment for people with schizophrenia, then we (the families) should all be given free antidepressants.

My son works for a psychiatric rehabilitation program in Hamilton as a peer counsellor. Both he and the agency are in Ms Horvath’s constituency. The government has just cut off their funding. As a result, the clients will lose their support and the peer support workers, for whom this job helps with their self esteem and feelings of self worth, will be unemployed.

Thank you for your time today and, as promised, I will leave you with a copy of my book. Please don’t feel any pressure as there will be no test if you do read it. I am also leaving you with the DVD of the feature film Cutting For Stone which is going into general release in the US in October. The film was shot in Hamilton, Ontario, written by a psychiatrist and is one of the most realistic depictions of schizophrenia that you will find. The bonus scenes added to the DVD are very educational.

Chris rang me today from his mobile to say he had, on the spur of the moment, gone to a Giacometti exhibition. He sounded very much alive. There is something exciting going on with Chris that has been building slowly for months. It is in the way he engages with others, even in the way he watches television. His voice has suddenly taken on an enthusiasm and conveys a purpose. He occasionally expresses boredom, which is a hopeful sign.

Last night I was struck by the fact that he stayed up to watch a television show, alone. While this sounds mundane, for an observant mother it is anything but. He has approached pleasure in the past with a sense of duty or out of respect for someone else. Last night he was doing what he wanted to do, on his own terms.

This building up of the personality is a long, arduous process. There are times, like with a mental breakdown, when the personality, however fragile it was, seems to completely disappear under layers of apathy.

When we sit down to dinner as a family, Chris has very little to contribute to the conversation. Alex, his younger brother by two years, usually has a great deal to say about his new job or what’s happening in the world. Alex is living at home while he saves for graduate school. Chris’s two younger brothers are reaching the milestones that we think are important for young men in their twenties – higher education and jobs are the primary ones. Chris left university after a year and a bit, not able to continue due to psychosis.

Yet, when I came home from work yesterday, Chris and Alex were carrying on an animated conversation in the kitchen as Chris prepared the chicken risotto. They seemed to find a common ground. Chris had taken it upon himself to haul out the Bachelor’s Cookbook, pick up the missing ingredients at the store and get to work on producing an excellent meal. This was after going to his one university class in the afternoon.

Everyday Chris makes his bed so well that you could bounce a quarter off it and does any kitchen clean-up that didn’t get done the night before. He sees his psychiatrist twice a week. He sees an occupational therapist once every two weeks. He sings in the church choir on Sundays and practices Thursday nights. He has voice lessons Thursday afternoon. He helps out around the church, fixing things, moving things or stuffing envelopes. He volunteers from time to time at the local soup kitchen.

It is puzzling, because despite the fact he is able to do all this, he does not have paid employment neither is he at university full time. He reads a great deal of intellectually challenging material, which is a huge relief after a two or three years when he was able to read nothing.

I wonder sometimes if he is a victim of low expectations, not ours but theirs, meaning the psychiatrist and the occupational therapist. I fought against the low expectations that I sensed were at the heart of the day program Chris was in for two years. Ian and I pushed him to audit classes at the local university when it was clear that the psychiatrists thought that this was too much. I don’t think Chris would be as far as he is now if we had succumbed to low expectations in the beginning. But since Chris’s relapse a year ago, we have stopped reminding him that he should be back at university full time or doing something meaningful with his life. I believe that our over-eagerness to get him out of the nest caused him to relapse.

He relapsed after he had been slowly and carefully weaned off his two medications. So, he is back on medications, which some maintain make it impossible for him to work or go to class. That is exactly why I wanted him off the medications in the first place. I thought he would never be able to make it on his own if he stayed with them.

The other day Chris mentioned that somebody suggested to him that he do some volunteer work. What were they thinking? Surely this wasn’t the occupational therapist or the psychiatrist suggesting this. He is doing volunteer work, lots of it. It is paid work and a full-time occupation that is eluding him.

I am not as convinced as I once was that the medications are preventing him from doing things. I’m sure they do slow him down, but I don’t think that’s the whole picture of why he isn’t fully back on track.

It is hard to be patient. I hope patience isn’t perceived as low expectations.