Families in Canada fighting for evidence-based care for relatives living with psychotic disorders should see the tenacity of the American families. And Democratic Americans abroad, like me, can let our representatives know that we want the mental health system to begin to meet the needs of people with the most severe illnesses.
Despite the good intentions of Mental Illness Awareness Week (October 5 - 11), it's pretty hard to learn some of the most basic information we need to know about mental illnesses. Many organizations, including the Canadian Alliance on Mental Illness and Mental Health (CAMIMH) encourage us to take this week to discuss mental illness, but there seems to be a puzzling assumption that we don't actually have to know much about mental illnesses in order to have meaningful discussions. I'm still looking at the website for links to the early signs of psychosis or any information about schizophrenia.
Ask any avid drug user the difference between 'molly' and 'ecstasy' and they will most likely tell you that 'molly is pure MDMA' and ecstasy was more known to be cut with other substances. In reality, this couldn't be further from the truth. And herein lies the problem. Unless you are an accomplished chemist, 'pure' MDMA is a myth.
This might come as quite a shock to the many American families I know who can't get treatment for their very ill sons and daughters whose psychotic states aren't 'passing.' These are families whose children have joined the millions of Americans living with untreated severe mental illnesses. They are homeless, victimized, and cycling in and out of jails and prisons.
People trying to help their family members struggling with severe mental illnesses don't have access to researchers. It's no surprise, then, that researchers ignore topics that reflect their perspectives on how to improve the mental health system. I hope they will consider the five areas discussed below.
Planning for the future presents serious problems for parents of people with significant disabilities; when those families are dealing with psychotic illnesses, the future is especially frightening. While it is impossible to deny that progress is being made, the simple fact is that our world, as it stands, has little desire to label people with mental illness as anything but crazy and dangerous.
There are no other evaluations of the program that I can find searching the medical literature and the number of participants they evaluated was very small. My suggestion to the psychiatric contrarians is to can the hype on Open Dialogue until independent studies do confirm your views that it is vastly better than what currently exists.
When people suffering from mental illness receive intensive treatment in programs specifically designed for them, most of them do much better. Anti-psychotic medications are understood to provide the foundation upon which any other treatments can be added. These messages are in direct conflict with the message from journalist Robert Whitaker. Robert Whitaker does excellent work describing the egregious practices of the pharmaceutical industries. However, his extreme stance against the value of psychotropic medications is scary. Any parents of a psychotic son or daughter who heard his recent presentation in Vancouver would want to keep their child far away from the early psychosis intervention programs that offer the best hope for recovery.
Advertisements and billboards around Canada are encouraging us to discuss mental health problems as part of Bell's "Let's Talk" campaign on Feb. 12. However, those of us who wish Canadians could finally receive much needed public education about psychotic disorders are disappointed. Canada is fortunate to have quite a few early psychosis intervention programs. But given the poor state of knowledge about both the early signs and the existence of programs, too many families aren't getting the knowledge they need. These are major public health problems. Let's talk about them.
Since my daughter experienced her first psychotic break while still a young teenager, she missed the kinds of gradual steps others get to take in developing work skills. Fortunately for her, Vancouver has an agency focused on helping people living with mental illnesses. But its funding might be cut back.
Current anti-stigma campaigns emphasize that most people with mental illnesses aren't violent. This is very true. They also point out that people with mental illnesses are much more likely to be the victims of violence rather than the perpetrators. Also true. But the research is clear that people with untreated psychosis are a greater danger to themselves and others than people who aren't psychotic. People with untreated psychotic disorders have a higher rate of violence than do the general population.
The annual convention of the U.S.-based National Alliance on Mental Illness (NAMI) just finished educating its 1700 participants on the latest research relevant for people living with severe mental illnesses.And what's the situation in Canada? Families here certainly aren't being led to advocate for the most helpful education programs for people living with psychotic disorders.
A mentally ill young woman, who thrived on medication and crumbled without, lobbied to be removed from mandatory treatment -- she didn't like being medicated. Her parents were very surprised when they learned that, after a year of stability, her community mental health team had decided, without consulting them, to release their daughter from mandatory treatment.
Unfortunately, the beliefs of the "psychiatric survivor" movement are having increasing influence on peer support workers. Last month my daughter participated in a program offered and was told by the peer leader that they were all there because of the trauma and abuse they had experienced as children.