At the end of Mental Illness Awareness Month, the Toronto Star ran an excellent editorial at the conclusion to its series of mental health horror stories. The Star said that It's long past time that Ottawa sees that there is no excuse for letting people with illnesses fall through the cracks, and that they finally produce the comprehensive co-ordinated mental health approach we need.
Interestingly, the May issue of the Canadian Psychiatric Association Journal published a study that suggests that psychiatrists in both Canada and the U.S. do a very poor job of treating their schizophrenia patients. It is a surprising and troubling conclusion. Well, more troubling than surprising for those of us involved in the system.
The study was conducted at the University of Calgary by Dr. Donald Addington and colleagues and is titled "Conformance to Evidence-Based Treatment Recommendations in Schizophrenia Treatment Services"
All physicians are supposed to treat their patients based on the best evidence of what is scientifically proven to work. These clinical guidelines improve outcomes and all doctors should adhere to them. In 2000, Addington published an earlier study cited in this most recent one looking at how well 467 Canadian psychiatrist complied with the guidelines. He found poor adherence when it came to the use of psychosocial treatments. He asked the doctors in that study how many of them provided their patients with at least three sessions of psychoeducation, family therapy or social skills training. He found that less than 20 per cent of the patients received even minimal family therapy, less than 40 per cent received minimal psychoeducation, and less than 30 per cent received minimal social skills training.
Meanwhile, south of the border, the U.S. Agency for Health Care Policy and Research and the National Institute for Mental Health established the Schizophrenia Patient Outcomes Research Team (PORT). The recommendations they developed list five main areas that should be addressed when treating someone with schizophrenia. These are: pharmacotherapy, psychological interventions, family interventions, vocational rehabilitation, assertive community treatment (ACT) and case management.
In order for Addingtion and his group to get an idea of current real world practice in Canada, they looked at adherence by psychiatrists to these PORT recommendations in one region with 216 patients with schizophrenia. Data was compiled from patient interviews and medical record reviews. The results were compared to published adherence in the U.S.
When it came to drug treatment, the docs were great. 90 per cent of the patients received at least 12 months of maintenance anti-psychotic medications (92 per cent in the U.S.). When it came to group therapy, only 81 per cent of Canadian patients were given that although that was better than in the U.S. where it was 45 per cent. Family treatment of at least nine months duration for those patients who were in contact with their families was lower at a mere 46 per cent. That was significantly higher than in the U.S. where it was a paltry 10 per cent.
The fact that less than half the families received any help is consistent with the concern that we are shunned by the majority of psychiatrists.
Another serious complaint that both families and those with schizophrenia have about their treatment is the lack of vocational assistance and rehabilitation. Only 42 per cent of patients received vocational rehab (23 per cent in the U.S.). Again, this is consistent with what family members and those with schizophrenia have to say. Erin Hawkes, a neuroscientist with schizophrenia says in the epilogue of her book:
Not getting my voice heard made it that, ironically, I felt more stigmatized in hospitals than in the "outside world." Inside, I was first a label -- paranoid schizophrenic -- and then a patient. I was sick. I needed to be controlled. I was to be managed.
And then there is Dr. Carolyn Dobbins, a psychotherapist who also has schizo-affective disorder. At the end of her memoir she has a section called "To My Colleagues" where she says:
I want people to have every chance for freedom without ignoring the true limits their disorders place on them. Times are changing, but throughout my life, professionals often set limits on me based on diagnostics. It still goes on.
When treatment professionals do not see that their patients are more than their diagnosis, and ignore their potential to achieve, they will also ignore, as they do, those aspects of their patients' lives like meaningful work that many are capable of achieving.
The majority of those with schizophrenia who do not receiving adequate care from their doctors deserve better and the opportunity to fulfill whatever they can achieve given their limitations. Improving the lives of those who are ill requires effort on many fronts but it would be nice if the psychiatrists -- the ones who are supposed to know -- did all they could do.
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This is where psychiatrists are at a serious disadvantage compared to doctors who specialize in other areas (such as dermatology and endocrinology for example) who have a very good understanding of how the organs in question actually work. While we do understand to a large degree what is happening at the level of the individual neuron, what we don't understand is the higher level organization of the brain--how those neurons are organized to allow us to think, feel and simply be who we are.
What needs to be done is similar to what was done with the space race back in the 1960's. We need to have a crash program, a federal mandate, and spend hundreds of billions of dollars on understanding just how the brain works. We need to fund projects to try to build sentient androids if for no other reason than to understand how our own brain actually works. Research in fields such as AI, Machine Learning, Medical Imaging, Psychology, and medicine need to come together in a big way to make this happen. Such a project would not simply to help people with mental illness but would cut to the core of what it means to be human.
Families have cried out for an investigation into the lack of services and care for citizens with schizophrenia, manic depression.and related disorders of the brain. It seems that families' continual and public shaming by demanding that governments help our oved ones, with properly overseen programs to ensure they are not turned away, with throw-away words to their parents like "You can't help those who won't help themselves".This, when it is clear that they cannot help themselves.
This is a brutal injustice for citizens who suffer from no-fault brain diseases. No one should tolerate such treatment.
I hope families will continue shouting at the top of their lungs until fair minded citizens join them in demanding decent treatment,protection and compassion for our loved ones.