Morning Zen Guest Blog Post - Susan Inman ~
As the American Psychiatric Association (APA) meetings wrap up in Toronto, it's a good time to consider the current situation for people living with schizophrenia and the families who help them.
The APA sessions didn't report any dramatic new treatments available for people with schizophrenia. Instead, the focus was on trying to do help people soon after they develop a psychotic disorder. Presentations publicized new initiatives to finally promote early psychosis intervention programs. A previous obstacle has been the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), the major funder of mental health services in the U.S. It has supported a de-medicalized approached to what it likes to call "behavioural health problems." After two years of intense Congressional scrutiny, SAMHSA has been making mild efforts to include science based ways of responding to the disastrous state of U.S. mental health care and is supporting early intervention programs for psychotic disorders.
The kinds of early intervention programs that the U.S. is developing have been well-established in Canada for many years. However, Canada, like the U.S., lacks the level of public mental illness literacy that would help the people who need this kind of treatment to access it. The pervasive ignorance about the state of knowledge about psychotic illnesses has been fostered by the competing "alternative" vision of "mental health concerns," a movement that has been well nurtured by SAMHSA's over $3 billion annual budget.
Efforts at improving mental illness literacy in both countries have been hampered by a problematic notion that education about biological aspects of mental illnesses will lead to greater stigmatizing of people with these disorders. Surprisingly, this view was supported by influential Canadian psychiatrist, Dr. Kwame MacKenzie, on a recent TVO Agenda episode on current mental health care (at 24:00 on the video link).
Fortunately, even more evidence that good quality education actually reduces stigma has recently been published. Dalhousie psychiatrist Dr. Stan Kutcher has created a sensible school based mental health/mental illness education program that includes information about psychotic brain disorders. This program has shown remarkable success in increasing knowledge and help seeking behavior. Importantly, it is also shown to decrease stigma.
Deficits in basic knowledge aren't just a problem in the level of public mental illness literacy. A huge unaddressed problem is that many programs training credentialed mental health clinicians don't offer science-based curriculum about psychotic disorders.
The "alternative" idea that all mental health problems arise from social and personal adversity has also shaped the training of the rapidly expanding peer work force. In both Canada and the U.S., guidelines for programs training peer support workers are careful to avoid any curriculum about science-based ways of understanding severe mental illnesses.
Besides inadequate education of the public, many mental health professionals, and peer support workers, there is inadequate education about their disorders for the people who develop severe mental illnesses. Outside of early intervention programs, I have yet to locate a psycho-education program that lets people understand some of the most difficult symptoms. Information is missing about common cognitive losses that accompany schizophrenia and about anosognosia, the brain based inability of most people experiencing psychosis to understand that they are ill.
There are heroic efforts to counter the widespread ignorance about severe mental illnesses. I urge interested readers to subscribe to the frequent blogs of Dr. Thomas Insel, director of the U.S. National Institute of Mental Health (NIMH), the world's largest government funded organization researching mental illnesses.
Although Insel delivers his messages in accessible and compassionate ways, he ensures that we receive the essential information we need. In his recent blog detailing current statistics about mental illness in the US, he offers the sobering truth about schizophrenia:
Among people with schizophrenia who receive treatment, approximately 25 per cent experience good recovery and 50 per cent show improvement over a 10 year period...
So, the data indicate that 75 per cent of people with schizophrenia aren't experiencing a "good recovery."
Although the NIMH data is based on people who receive treatment, that treatment is far from ideal. A key area of research for NIMH has been common cognitive losses that accompany schizophrenia and cognitive remediation programs that can help people recover abilities in more parts of their lives. However, there have been too few efforts in underfunded mental health care at implementing these programs into adult psychiatric services.
Family caregivers are in a unique position to understand how the lack of all kinds of necessary education negatively impacts the outcomes for their family member. For instance, lack of adequate public mental illness literacy and lack of appropriate training of various professionals can lead to delays in getting the kinds of medical treatments that may be necessary. And the longer durations of untreated psychosis leads to poorer outcomes.
Although the Mental Health Commission of Canada recommended that mental health systems work cooperatively with families both in dealing with ill family members and in planning and evaluating services, these changes are very slow to come. One of the sessions in the APA conference schedule that made me most hopeful was a presentation offered by staff from Toronto's Centre for Addiction and Mental Health (CAMH). The title: "Experts by Experience: Exploring Effective Methods for Involving Clients and Families as Teachers in Psychiatric Education."
If we want to begin to address the hard truths that Dr. Thomas Insel shows us about the current situation for people with schizophrenia, then we need to recognize the kinds of obstacles that continue to thwart progress. While we wait for breakthroughs in neuroscience to lead to better treatments for schizophrenia, what we can ask for is better education to make the best use of the treatments we now have.
This post was originally posted on the Huffington Post website 5-22-15
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Susan Inman's memoir, After Her Brain Broke, Helping My Daughter Recover Her Sanity (Bridgeross, 2010), has been recommended both by NAMI and by EUFAMI, which are the world's largest organizations advocating for families coping with mental illnesses. In Canada, it has also been recommended by the Mental Health Commission of Canada, the Mood Disorders Society of Canada, and the BC Schizophrenia Society. As well, it has received very positive reviews in numerous professional journals, including the Canadian Medical Association Journal. Susan's articles about mental illness have appeared in a variety of publications including the National Post, the Globe and Mail, the Province, The Tyee, the BC Teacher Newsmagazine, and CMHA-BC's Visions magazine. Susan is a past president of the British Columbia Schizophrenia Society's Vancouver/Richmond branch and a past vice-chair of Vancouver Coastal Health's Family Advisory Committee (FAC).
While a member of the FAC, in 2006, Susan drew up plans for a family conference focusing on meeting the needs of family caregivers for people living with severe mental illnesses. Susan has continued to actively participate in organizing this unique annual event which offers families, people living with illnesses, and staff an opportunity to learn about cutting edge scientific research and about evidence-based psychosocial rehabilitation programs.
While continuing to provide ongoing assistance to her daughter, who is recovering from a severe schizoaffective disorder, Susan is a very active public speaker about the situations of families coping with psychotic disorders. Susan has taught secondary school in Vancouver for over 20 years. She received her BA from Swarthmore College and her MA from UCLA.
Susan recently received a Queen Elizabeth 11 Diamond Jubilee Medal which is "a visible way to recognize outstanding Canadians." These medals "provide an opportunity to honour exceptional Canadians for their contributions to their fellow citizens, to our communities and to our country."