Susan Inman2013-05-23T17:12:06-04:00Susan Inmanhttp://www.huffingtonpost.ca/author/index.php?author=susan-inmanCopyright 2008, HuffingtonPost.com, Inc.HuffingtonPost Blogger Feed for Susan InmanGood old fashioned elbow grease.Let's Learn from the Failures of US Mental Health Policiestag:www.huffingtonpost.com,2013:/theblog//3.32558432013-05-13T09:52:27-04:002013-05-13T09:52:30-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/Prevention Week, part of Mental Health Awareness Month in the U.S. Too bad that the policies promoted by Prevention Week's creators, the US Substance Abuse and Mental Health Services Administration (SAMHSA), make it more likely that people with the most severe psychotic disorders -- schizophrenia and bipolar disorder -- will remain ill.
To see the problem, just imagine that you are the parent of someone you think may be developing or already has schizophrenia. You go to the SAMHSA website because this is the well-funded U.S. agency in charge of supporting treatment for mental illnesses.
You urgently need some kind of overview about schizophrenia. Let me know if you find it.
In looking for basic information about schizophrenia, you might not think to click on "What a Difference a Friend Makes." This is because your son or daughter's friends fled when the delusional behaviour started. Click on this anyway and you can see the one meager paragraph that I could find on the entire SAMHSA website that discusses schizophrenia. The random comments mention the use of medication.
You may have heard somewhere else that anti-psychotic medications have a good success rate in helping people recover from psychosis and maintain their sanity. I can't find any of this research on SAMHSA's site. However, there are numerous links, amidst the vast resources on recovery, to psychiatric survivor groups ready to explain why medications should be avoided. In the information on recovery, I couldn't find any links to the informative list of strategies for managing schizophrenia that are easily found on the science based US National Institute of Mental Health website.
Perhaps you hope to find information on a psycho-education program that will help your family member learn what is known about their brain disorder and how best to manage it. You'll easily find your way to information about the Wellness Recovery Action Plan (WRAP) program created by Mad in America blogger Mary Ellen Copeland. This program is widely used to educate psychiatric clients in Canada as well as the US. Actually, in Canada, SAMHSA is increasingly touted as the cutting edge leader in recovery.
However, neither WRAP nor SAMHSA mention the neurobiologically based lack of insight, also called anosognosia, which is the reason why people with psychosis often neither seek nor accept treatment. This is a significant omission since, as many people educated in programs like Vancouver's Early Psychosis Intervention program can explain, curriculum on lack of insight helped them accept and learn to manage their disorders.
Maybe you are worried that your child's bizarre behavior could lead to involvement with the criminal justice system, especially since in recent years U.S. and Canadian prisons have been inundated with people with untreated mental illnesses. You want assistance in getting the treatment your ill son or daughter doesn't understand they need. SAMHSA won't help. In fact, you'll make the terrifying discovery that SAMHSA's policies will make your situation much worse. SAMHSA , the agency the U.S. government created to help desperate families like yours, actively opposes involuntary treatment.
The impact of the kind of rhetoric, developed and promoted by SAMHSA, that opposes the value of involuntary treatment for severely ill people reaches far beyond its borders. Listen to social scientist and Mental Health Commission of Canada consultant Robert Whitley describing, on a recent CBC radio program in Halifax, that involuntary treatment is unethical. He emphasizes research condemning involuntary treatment while ignoring research like Ontario's Dreezer study. The Ontario research is one of numerous studies showing that involuntary treatment dramatically improves people's lives.
Professor Whitley's fellow guest on the CBC program was Dr. Stephen Ayer, who is the executive director of the Schizophrenia Society of Nova Scotia and someone who lives with bipolar disorder. Dr. Ayer explained anosognosia and how it prevents many people from getting treatment. Although Professor Whitley is hearing what we are hearing, he never acknowledges the existence or implications of this lack of awareness of being ill. Listeners will find the program enlightening since several of the callers relate how they probably would have died without involuntary treatment.
SAMHSA's audacity in choosing as a key slogan the message that "Prevention Works" is astonishing. Neuroscience has not yet discovered how to prevent schizophrenia and bipolar disorder, severe brain disorders that afflict 3 per cent of the population. Since SAMHSA has no public education programs on psychotic illnesses, it can't even inform families about the kind of early treatment that can prevent the illnesses from getting worse.
Although SAMHSA's slogan that "Prevention Works" does nothing to help educate people about psychotic disorders, it does shape public consciousness. It increases the stigma that parents of people with these illnesses have to confront as they look for help for their ill children. The implication is clear; parents didn't do what was necessary to prevent these disorders.
Tragically, in recent years, parents describe their worsening situations; they can't get treatment for their psychotic children who don't understand they are ill. I ask them why their local NAMI chapters aren't actively advocating for improving access to the involuntary treatment that could get their children out of psychosis and on the path to recovery. This is the path that many Canadian families, like mine, have been able to pursue. The American families have explained that the NAMI chapters fear losing SAMHSA funding to run their programs.
SAMHSA does have something very valuable to offer Canadians. We can witness the disastrous results of its choice to transform severe mental illnesses into what it calls "behavioural health problems." SAMHSA's demedicalized approach to these brain disorders has led to the untreated mentally ill ending up homeless, victimized, and imprisoned. If we carefully examine the philosophy and impact of SAMHSA, we can learn what not to do.
]]>For Psychotic People, Medication Means Survivaltag:www.huffingtonpost.com,2013:/theblog//3.28567532013-03-12T12:45:06-04:002013-05-12T05:12:01-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/neuroscience conference focusing on psychotic disorders to update psychiatrists and physicians about new research and promising practices.
Though not intended for family caregivers like me, I've discovered through the years that it's actually pretty easy to register for this kind of conference as long as you're willing to pay the steep fees. Since this popular conference is usually full, I justify to myself taking up a seat because I distribute the latest news to a community of family caregivers with whom I regularly communicate. Since many of the family caregivers I know are actually providing the bulk of mental health care for their family member, they appreciate updates.
This year's conference mostly focused on programs addressing people trapped in treatment resistant psychosis. One clear message was that when these people 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 were in direct conflict with the message that a packed audience at Vancouver's Unitarian Church recently received from journalist Robert Whitaker the author of the best-selling books Mad in America and Anatomy of an Epidemic. People leaving this event could easily believe that research demonstrates that people given the diagnosis of ADHD, depression, bipolar disorder or psychosis should stay away from medications that are suggested to them because these will often do irreparable harm to their brains.
Robert Whitaker does excellent work describing the egregious practices of the pharmaceutical industries and psychiatry's often unhealthy relationship with them. However, his extreme stance against the value of psychotropic medications is scary.
It's hard to find the logic in some of his ideas. For instance, he regularly references the groundbreaking research in the 1990s that demonstrated that schizophrenia is not the progressively worsening disorder it was assumed to be. By tracing people who left the Vermont State Hospital, researchers found that many adjusted well to community life and no longer even needed medication. This lack of need for medication by many people in later life is now well acknowledged. However, it's odd that in encouraging us to look at how well people with schizophrenia eventually did without the medications they had previously taken, Whitaker doesn't refer to his usual argument about the long term brain damage he thinks these medications cause.
Robert Whitaker's use of various research studies to support his beliefs has been carefully critiqued by research psychiatrist Dr. E Fuller Torrey. Whitaker and Torrey represent profoundly different ways of understanding and responding to severe mental illnesses or what Whitaker sometimes calls emotional problems.
One batch of research that Whitaker hasn't been interested in examining is the growing collection of studies demonstrating that psychotic people have a brain-based inability to understand that they are ill. This research is significant because if psychotic people aren't capable of understanding they are ill, why would we agree with human rights advocates who argue that all people must be free to refuse treatment?
At the entrance to Whitaker's presentation were various articles protesting the use of any involuntary treatment. Whitaker's beliefs about abolishing involuntary treatment are well represented in the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA), the federal agency designed to support mental healthcare in the U.S. Torrey argues that this organization has actually harmed the very population it was designed to help.
Although SAMHSA has abandoned the most severely mentally ill, another U.S. agency, the National Institute of Mental Health (NIMH), has been vigorously promoting the kinds of brain-based research that is needed to improve their lives. Whitaker and his followers bemoan the transition at NIMH from its previous Freudian based belief systems. However, many of us are encouraged that the largest research organization in the world dedicated to mental illness has been opening up new topics. This research includes investigations about the cognitive deficits that frequently accompany schizophrenia. NIMH states that it is these deficits that are the biggest factor in the ongoing disability of this population.
One NIMH-funded project was presented at last week's UBC neuroscience conference. Dr. Sophia Vinogradov presented her recent research in which she utilizes computer delivered programs to improve brain functioning in people with schizophrenia. Vinogradov chose a difficult population; the mean length of illness of her subjects was 19 years. Intensive work with this population over 16 weeks led to much improved ability in a variety of cognitive functions necessary for daily life. Improvements included the ability to more accurately distinguish between experiences that have been internally generated from actual events that have occurred in the external world.
The UBC conference opened with a presentation representing a viewpoint that both Whitaker and SAMHSA choose to ignore. Erin Hawkes, who has a MA in neuroscience, lived in the hellish world of psychotic delusions for years. She experienced numerous involuntary hospitalizations. Although anti-psychotic drugs helped control her symptoms, she, like many others, couldn't understand that she really has schizophrenia and would stop taking her medications. Eventually she began to understand her illness and has been able to rebuild a sane, stable, and very productive life. Both in her memoir and various articles, Erin makes it clear that she would not be alive without involuntary treatment.
Even though the UBC conference was full of inspiring accounts of progress in better treating psychotic disorders, the public doesn't hear about this kind of research. And because both Canada and the U.S. lack public education programs about these illnesses, the general population is vulnerable to messages like those of Robert Whitaker. 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.
]]>"Let's Talk" About Psychotic Disorders, Tootag:www.huffingtonpost.com,2013:/theblog//3.26643872013-02-12T12:12:16-05:002013-04-14T05:12:01-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/Bell's "Let's Talk" campaign on Feb. 12. Featuring Olympic medalist Clara Hughes, who has bravely shared her battles with depression, the campaign is a part of a multi-million dollar initiative to promote awareness and treatment of mental illnesses.
However, those of us who wish Canadians could finally receive much needed public education about psychotic disorders are disappointed. Given that 3 per cent of the population has these often life-altering illnesses, people need to understand them.
Bell iscontributing funding to a course promoted by the Mental Health Commission of Canada to train Canadians to recognize and respond to mental health emergencies.
Unfortunately, members of the public who want to take this course have to pay which may partially explain why only 50,000 people have taken it so far. The same program is offered free of charge in the U.S. Even though this program isn't a substitute for the widespread public education that is needed, easier access to it would be helpful.
The fees aren't insignificant. The program is often administered through the Canadian Mental Health Association and fees vary but the basic course in Vancouver charges $150 for the weekend training. The course for adults working with youth, seemingly an educational initiative we should be eager to promote, costs the participants $350.
Bell's contributions to mental illness research are enormous. For instance, Bell is donating $ 2 million to the Douglas-Bell Canadian Brain Bank at the Douglas Mental Health University Institute in Montreal. Ironically, however, a quick look at the early intervention program for psychosis at the Douglas Mental Health University illustrates the problems that emerge without adequate public awareness of psychosis and the resources available to respond. The website mentions how fortunate it was that a desperate family's physician happened to hear about the Douglas resources. When even physicians don't know about essential services, something is very wrong.
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.
Last week I talked with a couple whose son has been struggling with psychotic symptoms for several months. This couple is well-educated and obviously want to get whatever help they can for their ill son. However, even though they have had scattered interactions with various parts of the mental health system, including a Vancouver area hospital, they haven't been able to connect on an ongoing basis with a psychiatrist. Difficulties accessing a psychiatrist aren't unusual.
What was surprising is that during this process, no one had told them about Vancouver's Early Psychosis Intervention (EPI) program. They were astonished as I explained that they could contact EPI themselves and that they would be able to quickly get a psychiatric assessment. If their son needs ongoing care, he can become part of their program. He can access psychiatric care as needed, as well as other useful services.
The parents would be offered an education program about these disorders where they could also connect to other families. The psycho-education program for people learning to manage their illnesses provides knowledge about psychosis from a science-based perspective.
It also offers a crucial component that is not available in either of the two programs generally offered to adult mental health clients. Neither the "Wellness Recovery Action Plan" nor the Schizophrenia Society of Canada's new "Your Recovery Journey" program let people know about the lack of awareness of being ill, also known as anosognosia, that usually accompanies psychosis.
It's this dangerous symptom that creates such havoc for people living with these disorders. EPI educational programs are the only rehabilitation services I have seen in Canada that offer this critically important information.
Early Psychosis Intervention is a part of the Canadian mental system that we can be proud of. In the U.S., however, there has been little progress in establishing early psychosis intervention programs. Only now, through the work of the U.S. National Institute of Mental Health, are there concerted efforts to introduce this comprehensive approach and demonstrate its effectiveness.
Even if the U.S. develops good early psychosis programs, it suffers from the same lack of public education that limits access to programs. As well, the U.S. shares Canada's problem about lack of appropriate education of some mental health professionals about psychotic illnesses. Many social workers and counseling psychologists receive no science based curriculum about these disorders so they don't recognize the early signs of these illnesses or understand the necessary treatment.
These are major public health problems. Let's talk about them.]]>How to Make Working Work for Those with Mental Illnessestag:www.huffingtonpost.com,2013:/theblog//3.25627222013-01-28T12:15:46-05:002013-03-30T05:12:01-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/
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 long had an agency, Gastown Vocational Services (GVS), specifically focused on helping people living with mental illnesses.
Unfortunately for my daughter, this well-respected program has a long waiting list. When my daughter was ready to explore work experiences several years ago, we helped her connect to a less popular agency. Since we really just wanted assistance for her to begin to have some kind of successful experience with supported volunteer work, we didn't think much could go wrong. She obviously enjoyed several one to one sessions with an enthusiastic staff member who helped her prepare a resume and think about work she might like. Being naive, I didn't care about the exact qualifications of the workers. Eventually I realized how much damage can occur when people working in mental health locations have not had training on dealing with severe mental illnesses.
I should have paid closer attention to the description our daughter provided of the job counselor's extreme emphasis on "believing in yourself" as the key ingredient for success in work. Suddenly, without warning, the counselor decided our daughter could bypass any supported volunteer work, and she was sent to apply for a position bussing tables at a trendy restaurant. Because many parts of this job would have been impossible given the cognitive challenges of her illness, it is lucky this chance to fail never emerged. But the humiliation my daughter experienced in the interview for the job was deeply destructive.
At one point last year, when my daughter began to work with the staff at GVS, I feared a repeat of the earlier fiasco. This job coach seemed very focused on the rhetoric of self-confidence and arranged a supported volunteer position at a sporting goods store. However, this time the path to failure was avoided because GVS operates from a basic principle: encourage family involvement. My daughter was reluctant to speak up to the job counselor, but, at this agency, the counselor was trained to seek our input. The meeting that followed perhaps helped this new employee understand more about the visual and spatial difficulties that can sometimes make organizing a physical environment daunting for someone with schizophrenia.
The meeting also offered an opportunity to offer a suggestion that eventually led to my daughter's happy experiences over the past year volunteering at a local Boys and Girls Club. GVS's careful incorporation of peer support workers provided just the right amount of practical and emotional support that led to the success of this volunteer opportunity.
GVS is now partnering in a new initiative with Vancouver Community College offering a course for people with mental illnesses who want to continue their education. This supported learning environment is modeled after a well-established course at Douglas College that's been funded by a nearby health authority for many years. All these instructors are pioneers responding to the urgent need to design educational programs to meet the unique needs of people with mental illnesses. Special education programs in faculties of education have yet to acknowledge the unmet learning needs of many of the 3% of the population who live with psychotic disorders.
Last night I heard some bad news at the monthly gathering I've enjoyed for years with other mothers of people living with severe mental illnesses. Funding to GVS might be cut back. We tried to absorb this discouraging possibility. We had hoped that other agencies could learn from GVS how to go about collaborating with family caregivers since we have rarely seen this occur elsewhere.
It's definitely valuable that the media are now more actively informing the public about people living with mental illnesses than in previous years. Just this past week, the New York Times ran a profile of Elyn Saks, a law professor with schizophrenia. Through gradual acceptance of her need for anti-psychotic medication and therapy, Saks has been able to lead a remarkable life. In fact, she is a recipient of the MacArthur Foundation genius award.
Saks' story is very important but so are the much, much more common stories that are profiled in Andrew Solomon's Far From the Tree: Parents, Children and the Search for Identity. Listed as one of the New York Times Ten Best Books of 2012, Solomon's work describes the lives of parents and their children who live with unusual conditions. Solomon views schizophrenia as presenting the most difficult problems; his collection of insightful interviews of people with this brain disorder and the families who help them are the best I have ever read.
The overwhelming majority of people unlucky enough to develop schizophrenia aren't blessed with Saks' genius. They need substantial community support if they are to recover and become less of an enormous economic drain on both the healthcare and criminal justice systems. Their recovery will only occur through the maintenance of programs like GVS that continue to incorporate emerging best practices.
This spring the Mental Health Commission of Canada will release its guidelines for mental health systems to offer better family support. I hope it will include advice on how family caregivers can start to provide input on the kinds of services offered to our family members. The women in my monthly support group know that developing a mental health system that provides excellent psychiatric and psychosocial rehabilitation services would be some of the best support we could receive. ]]>Why Don't We Support Families Coping with Mental Illnesses?tag:www.huffingtonpost.com,2012:/theblog//3.21977892012-11-30T11:17:42-05:002013-01-30T05:12:01-05:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/November is National Caregivers Month.
The Mental Health Commission of Canada recognized some of the needs of these family caregivers when, in the new national mental health strategy, it suggested that the mental health system should:
Increase the active involvement of people living with mental health problems and illnesses and their families in governance, accreditation, monitoring, and advisory bodies in the service system.
Even with this supportive message, family caregivers will face daunting obstacles as they try to bring the authentic voice of families into the mental health system. They will need the support of a national organization that reflects and advocates for their beliefs. Given that the voice of people with severe mental illnesses is often taken over by the psychiatric survivor movement, it's especially important that families' views be considered.
While working to greatly expand the kind of services provided by peer support workers, consumer/survivor groups consistently fail to advocate for services requiring other kinds of expertise. For instance, I have yet to see any of these groups push for the development of cognitive rehabilitation services that are urgently needed in order to better support recovery. Advocating for these services does require an acceptance that schizophrenia is a brain disorder, a position that is unacceptable to most of these groups.
In recent decades, families have built many strong provincial schizophrenia societies. Through them, they have had a huge impact on improving mental health services, and housing, educational, and vocational opportunities for people living with psychotic disorders. They have also worked to provide the public education about these disorders that continues to be missing from public health literacy campaigns. Their work, for instance, alerts parents, teachers, and inadequately trained mental health professionals to the early signs of psychosis, a topic glaringly absent from Canada's recent Mental Illness Awareness Week.
Provincially organized family caregivers actually had a national voice for over two decades after some parents brought provincial societies together to create the Schizophrenia Society of Canada (SSC). In recent years, however, the SSC's commitment to represent the perspectives of family caregivers has gradually faded. Ironically, in its alliance with the Recovery Movement, the SSC increasingly supports positions that, in fact, impede recovery in significant ways. One of these areas of concern relates to mental health legislation.
Some family caregivers now fear the SSC because currently it is advertising, below its mission statement, that it supports "Advocating for legislative change"
Since mental health legislation is currently a highly contentious issue, I requested, but haven't received clarification on exactly what is meant by this statement. References to "advocating for legislative change" are usually coded language for dismantling mental health acts, like the one in BC, that support both inpatient and outpatient mandated treatment.
Family caregivers are finding it increasingly difficult to help psychotic family members receive the treatment necessary to return them to sanity. That's why they strongly support the use of involuntary treatment when necessary. Most psychotic people have a neurobiologically based inability to understand that they are ill.
Many people with these disorders also support this position. Since none of the consumer/survivor organizations support the need for involuntary treatment, people who want to belong to a group working to protect their right to treatment have, in the past, been able to find a voice in the SSC.
Their right to treatment in the case of psychotic relapse is clearly jeopardized by another ominous addition that has just appeared on the SSC website. The SSC "Rays of Hope" manual has been rewritten. Though it still contains useful information, it has a new section on rehabilitation which copies verbatim the core principles of another organization, Psychosocial Rehabilitation (PSR) Canada. Among the otherwise commendable PSR positions is the controversial stance that:
All individuals have the right to make their own decisions, including decisions about the types of services and supports they receive.
PSR Canada does not recognize that severely psychotic people aren't in a position to make a rational decision about their need for medical treatment. Instead of endorsing PSR Canada's stances, the SSC could educate and lobby PSR Canada to change its position, since it puts gravely ill people at risk of being left to deteriorate.
Ideally, the SCC's CEO, Dr. Chris Summerville, would be rallying the membership to publicize the dangers of current campaigns to gut mental health legislation. Instead, in a recent article, Dr. Summerville (the doctorate, to clarify, is from an evangelical seminary) focuses on advice that will shock family caregivers, but affirm the beliefs of the psychiatric survivor movement. Families are told that they should avoid pathologizing their ill family member, look for dysfunction in their caregiving behaviour and examine unhealthy parts of their family history.
As National Family Caregivers month comes to a close, some caregivers have reason to celebrate as their concerns are receiving more attention than ever before. However, it's a precarious time for some of us. The organization that families caring for people with severe psychotic disorders had created has somehow slipped away from us.]]>Hidden Lives, Coming Out on Mental Illnesses: Reviewedtag:www.huffingtonpost.com,2012:/theblog//3.20734672012-11-06T13:58:07-05:002013-01-06T05:12:01-05:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/
A new anthology, HIdden Lives, Coming Out on Mental Illnesses, is richly packed with stories that let readers confront these questions. Editors Lenore Rowntree and Andrew Boden have brought together a compelling collection of essays, mostly from people who are dealing with various psychotic illnesses. Included, however, are other eye-opening accounts.
Joel Yanofsky, the father of a son with autism, offers wrenching descriptions of parental grief. As he writes in the book:
"The future is what you are given when you have your first child. When you are a new parent you have a sense of something coming....
When you learn your child has autism, it's the future that is taken away."
Editor Lenore Rowntree, meanwhile, provides a harrowing account of the life of her sister, who has struggled with severe mental illness since childhood:
"By the mid-1980's, Beth is in her thirties and still living at home where she's left alone to rant most days because no-one can take being with her for long....When I look into her face I can see that even she can't stand to be with herself anymore."
In late middle age, Rowntree brings Beth to live in a group home in Vancouver. She describes the daunting challenges in finding ways to relate to a sibling with severe schizophrenia. Rowntree has discovered that, "To love someone who is complicated requires you not to think too deeply sometimes, to simply put on your party makeup and dance."
Beth herself has created a vivid contribution to this diverse anthology. Some of her thoughts have the power to evoke terror in any parent who knows they will eventually be leaving someone who isn't capable of independent living. Beth wonders, "I don't know where I'll live, eat, and work once my family and all my friends pass away."
The contribution by editor Andrew Boden offers superb descriptions of the bizarre interactions he has with both an irresponsible psychiatrist treating his psychotic brother and the dysfunctional procedures at New Westminster's Royal Columbian Hospital.
However, Boden's account also creates unnecessary confusion about treatment for schizophrenia. Visiting his brother in hospital, he is suspicious of the calm that his previously delusional brother is experiencing because it has been "achieved with powerful drugs, the heavy tranquilizers the pharmaceutical industry rebranded as antipsychotics."
When antipsychotics gradually restore his brother to lucidity, Boden writes that, "I believed in the system. I believed in a straight, unswerving path to mental health." This unrealistic belief is shattered when, as very often occurs, his brother is released too soon, stops taking his medications, and ends up hospitalized again. Neither the brother nor Boden seem to be getting the necessary education and support that can lead to stability for people with schizophrenia.
Boden's lack of understanding of the complicated path to recovery for most people with schizophrenia can be attributed to many causes. I kept wishing that I could rush over and give him a copy of Dr. Fuller Torrey's international bestseller, Surviving Schizophrenia, A Manual for Families, Patients, and Providers. This is the book that offered me and many others the knowledge we needed to help our family members learn to successfully manage their illnesses.
The choice of physician Dr. Gabor Mate to write the foreword is also concerning. It's understandable to want a medical perspective on the illnesses described in the book, since these are illnesses for the most part that contemporary neuroscience now understands as brain disorders. But Mate's foreword offers little besides the respect we already have for the writers.
The introduction could have been worse, though. Mate's popular book on addiction, In the Realm of Hungry Ghosts, too easily links addiction with negligent parental behaviour. Since many people with untreated or undertreated mental illnesses develop addictions, and since psychiatry no longer blames parents for psychotic disorders, it's disturbing that Mate's theories have so much influence.
I know many very responsible parents, like retired Vancouver teacher/librarian Dell Catherall, whose mentally ill children have developed addictions. Catherall's gritty story reveals the kind of torment these families experience as they try to help their very ill sons and daughters.
Andrew Boden suggests a way to understand mental illnesses that is problematic. He writes of being influenced by a professor who believes that the "difference between a psychotic state and a normal one is in degree and not in kind." I hope Boden will look at an article by Richard O'Reilly, a Canadian psychiatrist and researcher. His classic piece, "The Seven Deadly Sins of Mental Health Reform," lists the wish to normalize and thus demedicalize psychosis as one of these misguided 'sins.'
O'Reilly's observations about the current problems plaguing mental health care in Canada provide the kind of bigger picture that I wish a foreward to the book had offered. It would have been useful to help both the readers and writers of this book understand how, even given the limits of current knowledge, we can do a better job of limiting the destructive impact of severe mental illnesses.]]>What I Wish I Knew Before My Daughter's Psychotic Breaktag:www.huffingtonpost.com,2012:/theblog//3.19451582012-10-08T07:54:32-04:002012-12-08T05:12:01-05:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/Mental Illness Awareness Week (MIAW) is over for another year, how many of you learned about the early warning signs of schizophrenia and bipolar disorder?
It's not an oversight that you probably didn't receive this basic education about psychotic illnesses. The Canadian Alliance on Mental Illness and Mental Health (CAMIMH), the sponsor of MIAW, has clearly been guided by social scientists interested in de-medicalizing mental illness in its public education campaign.
There is a tendency among professionals to assume the mental health literacy of the public will increase as it aligns with professional thinking, but there are many reasons for caution about adopting this approach...
The Framework then warns about this approach, because "its emphasis on medical perspectives...can be associated with disempowerment, pessimism, and increased stigma."
Since these particular illnesses are now considered to be medical disorders by the medical community, it would make sense for a public education campaign to let us know what "professional thinking" is about these brain disorders. Limiting the dissemination of medical information on psychotic disorders actually leads to the "disempowerment, pessimism, and increased stigma" from which we're presumably being protected.
Parents who don't understand the strange behaviours that accompany psychosis are completely disempowered. Delays in getting treatment do lead to poorer outcomes, so there's reason to be pessimistic when trends in social science dominate the distribution of knowledge about medical illnesses. And the more the public witnesses the disturbing behaviours of people with untreated psychosis, the more stigma they will have about all people suffering from mental illnesses.
Currently, the strongest component of Mental Illness Awareness Week is its Faces of Mental Illness program, which profiles five Canadians who have battled a variety of mental illnesses and gone on to build very productive lives.
One of those people profiled this year is Vancouver author and artist, Sandra Yuen MacKay. Sandra has worked for years with the B.C. Schizophrenia Society to educate people about psychotic disorders. Her memoir, My Schizophrenic Life, The Road to Recovery from Mental Illness, provides an informative account of the frightening intrusion of this illness into her teenage years. Fortunately, Sandra's parents eventually were able to get her into a local hospital where her illness was diagnosed.
In a recent conversation, Sandra mentioned that if education about psychosis and if Early Psychosis Intervention programs had existed when she became ill, she might have received appropriate treatment much sooner.
Last year Sandra participated in a workshop I gave for the B.C. School Counsellors Association on how to better support students who develop psychotic illnesses. In discussions with these counsellors, it was clear that they really wanted to understand these disorders, which they hadn't learned about in their previous training. Although many were working in schools in and around Vancouver, where good Early Psychosis Intervention programs have existed for over 10 years, few knew about them.
It's not surprising that many school counsellors haven't heard about these programs. Even though in B.C., we have an excellent plan describing how EPI programs should operate, appropriate funding hasn't been allocated. At the same time that this plan was being unveiled, for instance, Vancouver's Early Psychosis Intervention program lost funding for its EPI Educator position.
This outreach worker went into the community including secondary schools where she taught counsellors how to recognize the early signs of psychosis. Counsellors also learned how to easily connect students to EPI for psychiatric assessments that are otherwise very difficult to obtain.
One of the many beneficiaries of Vancouver's EPI program is Tracy Windsor, a very articulate young woman. As Tracy says, "EPI has been the backbone of my recovery from bipolar disorder. Without the staff at EPI, I believe I would have fallen years behind in my recovery."
Tracy now shares her story through the Mood Disorders Association of B.C.'s Lowdown program. As well, she supports students with mental illnesses by coordinating the Kaleidoscope program at the University of British Columbia.
Informed by contemporary social science theories, this group wants to help students who "have been labeled with 'mental illness' diagnoses," a process the Society refers to as mentalism or saneism, to challenge "the medical model understandings of madness."
I wish public education about the "medical model" perspective on psychotic disorders had been much better 14 years ago when our younger daughter began showing signs of what developed into a severe schizoaffective disorder. Our ignorance led us to choose a therapist who has a MA in Counselling Psychology. She trained in a program at a major Canadian university that neither offered nor required curriculum on psychotic disorders. This crucial mistake on our part led to circumstances that meant our daughter unnecessarily experienced a two-year psychotic episode.
One of the sad benefits of writing a memoir about these experiences has been to receive messages from other families who are continuing to make the same mistakes we made. The one national public education campaign that we have about mental illnesses isn't helping. Early Psychosis Intervention isn't even a topic listed on CAMIMH's website.]]>Untreated Psychosis and Violence: It's Not a Stigma if it's Truetag:www.huffingtonpost.com,2012:/theblog//3.17712292012-08-14T08:04:48-04:002012-10-14T05:12:02-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/higher rate of violence than do the general population. The word "untreated" can't be overemphasized. People whose severe mental illnesses are treated do not commit more violent acts than do other people.
Acknowledging this reality is not politically correct and I can already anticipate the furious accusations of promoting stigma that this column will produce.
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 if we want the public to understand all aspects of mental illness, we need to start with the facts and the research is clear that people with untreated psychosis are a greater danger to themselves and others than people who aren't psychotic.
The Mental Health Commission of Canada's recent anti-stigma conference was missing a key notion that needs to enter the discussion; we won't get rid of stigma as long as we have the public constantly experiencing the negative impact of untreated psychotic illnesses. A comprehensive examination of stigma can be found in Dr. E. Fuller Torrey's article "Stigma and Violence: Isn't It Time to Connect the Dots?". Torrey points out that lack of appropriate treatment has led to an increased rate of violence and a corresponding increase in stigma.
Recent high profile mass murder cases have heightened the link in public consciousness between violence and mental illness. The resulting increase in stigma hurts the vast majority of people with mental illnesses who lead peaceful lives. At the same time, most news articles are not reporting basic information about psychotic illnesses, information that could lead to greater public empathy and more helpful responses.
Accused mass murderer James Holmes, a doctoral student in neuroscience, knew enough about mental illness and still had enough awareness at some point to get himself to the University of Colorado's mental health services. And psychiatrist Lynne Fenton heard enough to go to both the police and the university's threat assessment team for help. The public may cry for blood (or at least want someone to lose their job or get sued), but what we are seeing is not one university's glitch. We are witnessing a systemic problem.
There are many factors that could have contributed to the lack of appropriate action. We have become overly concerned about violating the rights of extremely mentally ill people; many argue that people must always be allowed to choose or refuse treatment despite the well-documented lack of insight that usually accompanies psychosis.
Individuals and hospitals can be sued for admitting people involuntarily. Holmes might have challenged his admission; the U.S. government's Substance Abuse and Mental Health Services Administration, which has become dominated by the perspectives of the psychiatric survivor movement, now provides federal funds to lawyers to assist patients challenging their involuntary admission.
In British Columbia, Kathy Tomlinson's CBC Go Public series last year examined the dismal state of facilities at Vancouver General Hospital and the ease with which patients walk away. The director of mental health services for Vancouver Coastal Health acknowledged that 100 beds are needed, not the current 74.
A problematic interpretation of human rights is leading to more very ill people being left untreated. Canadians need to watch carefully as the Mental Health Commission of Canada's Mental Health and the Law Advisory Committee releases an upcoming report on its Human Rights Evaluation Project and its suggestions for changes to provincial mental health acts.
This committee has been examining B.C., Manitoba and Nova Scotia to investigate possible human rights abuses in legislation and policies. We need to understand the beliefs of the well-meaning members of this committee if we want to construct the best mental health policies. Committee member Archibald Kaiser provides a good opportunity to learn about the competing belief systems that are vying to inform mental health policies. In his presentation to the Canadian Mental Health Association (pages 14 -15), Kaiser presents his position. He objects to the "medical model" where people with what Kaiser calls "mental health problems" are portrayed as having primarily "a biomedical need."
Mr. Kaiser prefers the "Social or Disability Model" which sees disability as socially constructed, not coming from some kind of individual pathology, and as being situated in society's failure to embrace diversity. This understanding of "mental health problems" leads to very different ideas about the best policies for responding to severe mental illnesses. I wonder if most Canadians believe that society should adjust better to the behaviour of people experiencing psychosis and that the people themselves should be encouraged to embrace their diversity.
The Human Rights Evaluation Project has met with many people in B.C., Manitoba and Nova Scotia about human rights abuses in mental health policies. It will be important in reading their report to see if these meetings included people like the many families I know with undertreated mentally ill people who have killed themselves. Also, we'll need to see if the report contains the underrepresented perspectives of many people like Erin Hawkes who recognize that involuntary treatment gave them back their lives. Hawkes argues in her article "Forced Medication Saved My Life" that people with psychotic disorders have a right to be protected from the illnesses that are destroying them.
The potential for antipsychotic medications to restore people to sanity has been demonstrated in other high profile cases. Following the involuntary administration of antipsychotic medication over the past year, Tucson mass murderer Jared Loughner has become legally capable of understanding the charges against him and has pleaded guilty.
Similarly, in Canada, Vince Li who beheaded and cannibalized a fellow passenger on a Greyhound bus, has responded well to treatment. His psychiatrist reports that he no longer has delusional beliefs, recognizes that he has schizophrenia, and understands that he needs medication.
If we believe, as contemporary psychiatry and neuroscience inform us, that psychosis is a treatable brain disorder, we need to ensure that people have timely access to the treatments they need. Vince Li, Jared Loughner and James Holmes' bio-medical needs have been recognized too late.]]>How Much Do Canadians Know About Psychotic Disorders? Not Enoughtag:www.huffingtonpost.com,2012:/theblog//3.16493312012-07-05T07:36:18-04:002012-09-04T05:12:15-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/National Alliance on Mental Illness (NAMI) just finished educating its 1700 participants on the latest research relevant for people living with severe mental illnesses. Both the opening and closing events focused on the important developments in cognitive remediation strategies for people with psychotic disorders.
Dr. Thomas Insel, director of the National Institute of Mental Health (NIMH), detailed for us future possibilities for people in the earliest stages of psychosis to receive cognitive retraining that could prevent full onset of this life-altering disorder.
Longtime Harvard University researcher, Dr. Matcheri Keshavan, explained the Cognitive Enhancement Therapy (CET) programs he has helped develop. He included presentations from two middle-aged people with schizophrenia whose lives have been dramatically improved following their experiences with CET.
These presentations aren't just updates. Speakers at NAMI know that this powerful organization, which was started by family caregivers and now has over 1,200 affiliates, is responsible for key improvements in mental health care in the United States. NAMI successfully lobbied Congress to order insurance companies to fund care for mental illnesses. These families have also pioneered numerous housing, vocational, and educational opportunities for people 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. In fact, they often receive messages that add to their confusion about the state of knowledge about these illnesses. My last article explored the beliefs of some of the panelists at the Mental Health Commission of Canada's (MHCC) recent anti-stigma conference who were selected to speak on the situation of families.
Panelist Karyn Baker writes about the ways she believe families are "a hindrance in their relative's recovery." In her training program for families, she wants to free them from "the limiting idea that mental illness is a disease and must be treated with medication...." Baker's fellow panelist, the controversial CEO of the Schizophrenia Society of Canada (SSC) and MHCC Board Member Chris Summerville actually blames families for their members not getting treatment.
This panel could have educated the conference audience about the lack of insight which is the real reason so many people with psychotic illnesses don't seek or consent to treatment. They could have publicized the recent groundbreaking French research that has finally identified the part of the brain involved in this lack of awareness.
Lack of awareness of being psychotic, or anosognosia, creates havoc for people with psychotic illnesses and the families who love them. An inside look at anosognosia is explored in a recentNational Post article by memoirist Erin Hawkes. Hawkes experienced years of involuntary treatment before she finally understood that anti-psychotic medications could provide the foundation for a return to a sane, stable, and productive life.
Research demonstrates that when people receive good psycho-education about their illnesses, they are more likely to continue to take the medications they may not otherwise understand they need. Current programs being used in Vancouver to educate people about how to manage their illnesses aren't including curriculum about this dangerous symptom.
Only when people are no longer actively psychotic can they benefit from the education provided in cognitive remediation programs. These programs address the predictable cognitive losses that NIMH describes as the major cause of the ongoing disability that impedes many people with schizophrenia.
Progressive psychosocial rehabilitation programs have long recognized these cognitive losses and struggled on a grassroots level to respond. Douglas College in Vancouver's Lower Mainland each year offers a course for people whose education has been interrupted by severe mental illnesses. This course, in which people relearn how to learn, is funded by both the Fraser and Vancouver Coastal Health authorities.
Knowing that these kinds of efforts would be bolstered if they had national support, some of us have requested for the past two years that the MHCC's Knowledge Exchange Centre (KEC) become a hub for gathering information about cognitive remediation research and relevant programs. The KEC advertises itself as being the means through which Canadians can share information about mental health issues. The public is even encouraged to write the KEC to suggest meaningful topics. However, the KEC continues to ignore cognitive remediation.
What explains this puzzling lack of response?
Readers' comments to my earlier HuffPost articles offer some clues. Those who adhere to the beliefs of the "psychiatric survivor" movement do not want psychotic disorders to be thought of as brain disorders. This explains the comments that accuse me of insulting people diagnosed with schizophrenia by discussing cognitive problems. Examining the commonly acknowledged cognitive challenges, according to these readers, promotes stigma.
As a secondary school teacher, I am grateful that the people advocating for students with learning disabilities and other special needs have often been successful in their efforts. These students wouldn't have been helped by well-meaning people who didn't want to call attention to their difficulties out of fear of stigmatizing them.
With appropriate support from groups like the Mental Health Commission of Canada, the long neglected cognitive challenges of many people with schizophrenia could be addressed. We might finally even get the university special education departments to notice the ignored educational needs of this population.
Neuroscientists at NAMI wanted to educate families about the incredible potential of the brain's neuroplasticity to improve the lives of people with psychotic disorders. They want families to continue to advocate for the kinds of programs that offer the best help for people burdened with these often devastating illnesses.
In Canada, however, families and many consumers of mental health services who understand the need for these kinds of programs have no place to look for support. We can only inform the public who have everything to gain by promoting science-based recovery from severe mental illnesses.]]>The New Mental Illness Stigma? Offering Supporttag:www.huffingtonpost.com,2012:/theblog//3.15688222012-06-05T07:52:39-04:002012-08-05T05:12:28-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/contains a session, offered by Canadians, with the most blatantly stigmatizing collection of ideas about families coping with mental illnesses that I have ever seen. The picture it weaves of these families has the power to shroud them in the worst shaming they have experienced since the Freudian heyday of the schizophrenogenic mother.
The ongoing political struggles that have plagued the work of the MHCC are evident in various sessions. One of the basic dividing lines is between people who believe that psychotic illnesses are brain disorders, and those who don't. The former, supported by contemporary neuroscience, think those who struggle with these disorders usually need medications as well as a variety of psychosocial rehabilitation strategies to make the best possible recovery. This group also believes that sometimes when people are psychotic and are unable to understand how ill they are, they need to be treated involuntarily. My daughter and her friends, all of whom live with psychotic disorders, have good relationships with their families and count on them to ensure treatment in the event of future psychotic relapses.
The other position about mental illness, held by the "psychiatric-survivor movement," is well represented at this conference. This group contends that the term "mental illness" itself is stigmatizing and inappropriately applied to various states of being that should be considered part of normal human experience. Sometimes people have extreme mental distress, or spiritual emergencies or existential crises (all terms used by groups attending this conference) and these should not be medicalized. Medications should be avoided and no one should ever be treated against their will. Many of us who are family caregivers feel that the "psychiatric survivor movement" doesn't represent the beliefs of our family members.
The panel session that is focusing on the family certainly has a promising title: "The Experiential Knowledge and Wisdom of Families." However, the description of the session reveals perspectives that are rare among actual family caregivers of people with psychotic illnesses.
This is not a session exploring the "wisdom" of the families coping with severe mental illnesses. The session describes how families need help in finally becoming recovery-oriented; they need to be led out of what is termed the "stigma inherent in the family movement" and its "disempowerment" of people with mental illnesses.
The major resource listed for this session is Debbie Peterson's article "Family Attitudes and Mental Illness Literature Review." This selection of studies is used to demonstrate how destructive families are to people with mental illnesses.
It may be troubling to see a large panel at a conference fighting stigma put forth such negative stereotypes of family caregivers. However, it's even more disturbing that some people on the panel are entrusted to speak on behalf of family caregivers and offer assistance to them.
The panel has been organized by MHCC Board member and controversial CEO
of the Schizophrenia Society of Canada, Dr. Chris Summerville -- the title reflects his training to become an evangelical minister. Summerville astounded many family members soon after he volunteered to be an interim CEO of this loosely organized federation of provincial schizophrenia societies. In an interview in Canadian Christianity, he spoke of families being the obstacle to people getting treatment because they don't want to let out the "family secret."
The anti-family attitudes that frequently appear in the "psychiatric survivor movement" are well explored in the writings of fellow panelist and anti-psychiatry activist Karyn Baker. Baker lays out her position that families undermine recovery in her article "Families: A Help or Hindrance in Recovery" published in Stastny and Lehmann's anthology, Alternatives Beyond Psychiatry. In this article, she presents her version of the history of the family movement. This history doesn't mention, for example, families' successes in initiating a wide variety of new services including housing, educational, and vocational opportunities for people with mental illnesses. Instead, Baker focuses on the kind of education her group, Family Outreach and Response, has created for misguided families. The families should understand "madness as part of the human experience," acknowledge their role in "wounding their relative" and stop encouraging the use of medications.
Fortunately, this three day conference does include a session that offers a less stigmatizing perspective on family caregivers. In "First Episode Psychosis: The Experience of Parent Caregivers," Alberta nursing instructors Jane Elizabeth Hamilton Wilson and Sherrill Conroy, discuss their study which involved carefully listening to parents. These researchers discovered that a major experience for parents during these turbulent times is their enduring love for their sons and daughters. Perhaps Debbie Peterson will consider including this research in her next literature review about family involvement.
For families across the country looking through the program at the many diverse offerings at this week's conference, there is hope. We are told how important protest has been to bringing change to stigmatizing and injurious attitudes.
I am protesting.]]>How to Learn About Schizophreniatag:www.huffingtonpost.com,2012:/theblog//3.15397442012-05-24T08:30:50-04:002012-07-24T05:12:07-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/
In the absence of any kind of national public education campaign about psychotic disorders, and the sensible mental health policies that are needed to treat them, this grim form of education will continue. Concerned citizens can quickly cover the basics about schizophrenia by visiting the website of the U.S. National Institute of Mental Health.
Education about psychotic disorders, which afflict three per cent of the population, would certainly help the many families who are thrown into upheaval every year when their children begin to experience bizarre symptoms. This education could decrease the dangerous delays that often hinder people from connecting to the early psychosis intervention programs that exist in some parts of the country.
Also valuable would be detailed first hand accounts of what it's like to live with schizophrenia. Until recently, these accounts have been hard to find in Canada. Now two Vancouver writers have written memoirs that let people intimately experience this agonizing brain disorder.
Sandra Yuen MacKay was one of the first people in Vancouver to share her personal story with schizophrenia over 10 years ago. Through the B.C. Schizophrenia Society's partnership education program, she has spoken to numerous groups of students. Vancouver Coastal Mental Health Services regularly employs her to sensitize new staff to the hard reality experienced by their clients. Her memoir, released last year, however, provides a much fuller picture of how a well-loved teenage girl can slip into psychotic chaos. Her book, My Schizophrenic Life, The Road to Recovery from Mental Illness, helps us understand why it can take years and multiple hospitalizations for someone to finally accept that she needs anti-psychotic medication to achieve stability.
Erin Hawkes, in her newly released memoir, When Quietness Came: A Neuroscientist's Journey Through Schizophrenia, also reveals the many years it took her to accept her need for medication. Her journey was made more difficult by the shifting array of psychiatrists who, with limited knowledge of Erin's history, kept changing her medication.
Following a psychiatrist's poor decision to lower her dose of her anti-psychotics, Erin reports that her returning voices tell her, "Pills, let them go....You are Ours...Quit them." Without medication, Erin returns to a delusional world where rats gnaw at her brain, and people on the streets appear to be decapitated or as ghostly versions of themselves.
Both Sandra and Erin, despite their long, harrowing ordeals and their ongoing challenges, are very fortunate. Daughters of the Canadian middle class, they are blessed with keen intelligence and many talents. Both graduated from university after the onset of their illnesses. However, even with these privileged backgrounds, their accounts of the treatment they have received, both in hospital and in community care, overflow with examples of mistreatment.
It's a credit to the strong foundation and ongoing support provided by their families, and the stalwart partners who entered their lives that Sandra and Erin have survived their ordeals. These, and other families like them, confront many obstacles in the mental health system when they try to be involved in caring for their ill relatives.
Also crucial to Sandra and Erin's recovery is the B.C. Mental Health Act which allowed them to receive the treatment that they sometimes didn't understand they needed. This act is under siege by groups, often funded at taxpayers' expense, that see involuntary treatment as a human rights violation. In Canada, unlike the U.S., people with illnesses who want to be treated in the event of future relapses are not represented by any groups.
These fascinating memoirs offer the public a chance to immerse themselves in the gruelling journey that many people with schizophrenia have travelled. Equally important, the stories show that people with schizophrenia really can build productive, meaningful lives. Both women work part time at jobs they like, and have enjoyed years of stability.
Until the public develops a basic understanding of psychotic disorders informed by current neuroscience, they won't insist that the mental health system develop appropriate policies and resources. These two memoirs, richly informative as they are, will have a hard time representing schizophrenia in the public mind. They have to keep competing with the stories of untreated psychotic illnesses.]]>When the Mental Health System Doesn't Worktag:www.huffingtonpost.com,2012:/theblog//3.15161852012-05-15T14:00:46-04:002012-07-15T05:12:09-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/
It doesn't make sense since her daughter's schizoaffective disorder responds well to anti-psychotic medication; the problem is that she has never had any insight into her illness.
After years of chaos following the onset of her illness, the family finally realized their daughter might be able to be part of BC's Extended Release program, a program designed for situations just like this -- people with no insight into their illness, who keep recycling back into psychosis and into expensive acute psychiatric beds, and who are released with the stipulation that they go to their local mental health service provider to receive the anti-psychotic medications they need.
This program, which involved receiving an injectable anti-psychotic medication every two weeks, worked so well for the daughter for several years that she built up a full life and functioned comfortably. She was able to maintain the condo her parents bought for her, had a full-time job as a legal assistant, and made the art she loves.
Unfortunately, she deeply resented the meds she was sure she didn't need. For several years, the mental health review panel that looked at her annual request to be removed from the Extended Release program considered the six earlier hospitalizations that occurred when she had stopped taking medications, and rejected her request.
These review panels consist of a medical practitioner, a lawyer, and a member of the community and usually help ensure that ill people get the treatment they need. However, in June 2010, the beautiful, articulate young woman, with evidence of her high-functioning life, won her case to be removed from Extended Release. The strong warnings submitted from her parents and the treating psychiatrist were ignored. They had let the panel know that the daughter had never been willing to take oral medication.
Her desperate mother, a retired news reporter with considerable knowledge of the mental health system, persevered until she was able to find out the reasoning behind the panel's decision. The panel had decided that, since her parents are so supportive, they could help out if anything went wrong. Besides, they argued, the daughter had "presented well" and assured the panel that she planned to continue taking her medication.
And maybe the daughter did take her medication for a few weeks, but soon the old pattern re-emerged. Work became too difficult, and she stopped going. She saw the family, whose support she'd previously enjoyed, as having sinister plots, and she stopped speaking to them. It would have been hard to hear them anyway because her numerous voices once again seized control, keeping her locked in her apartment, gradually starving herself.
The family had no choice, since they didn't want their daughter to die, so they called in emergency services. A traumatic intervention with police and ambulance attendants ensued forcing their deeply paranoid daughter to do what she didn't want. Fortunately, after a few weeks in the hospital she was restabilized on the medications she still didn't understand she needed.
Their daughter returned to her condo and began to slowly rebuild the life that had fallen apart. The parents, furious at the ineptitude of the mental health system, could at least know that everyone involved had learned an important lesson, even if it had to be at their daughter's expense.
They were very surprised last year when they learned that, after a year of stability, her community mental health team had decided, without consulting them, to once again release their daughter from mandatory treatment.
Once again, the parents were helpless as they watched their daughter slowly descend into the horrors of her madness over a period of months. With this current hospitalization, however, the medication, as can happen, isn't producing the same effect. After nine weeks of being hospitalized, the daughter is still severely mentally ill. The parents now wonder where their daughter should live when she is eventually released. It's not clear that she'll be able to live independently. The parents fear that their daughter may not be able to work again. After the 2010 hospitalization, the daughter was unable to return to work and has been on disability benefits ever since; these were set up with the assistance of her parents.
Numerous groups of psychiatric-survivors and their supporters in academia adamantly oppose any involuntary treatment for people experiencing psychosis, arguing that people should always be free to choose whether or not they wish to be treated. They are working hard to spread their perspectives.
If they are successful, the Howard's daughter might not have a chance to resume the life her medications allowed her to live.
*Name changed]]>How Peer Workers Can Hurt People With Mental Illnessestag:www.huffingtonpost.com,2012:/theblog//3.14443592012-05-02T11:00:20-04:002012-07-02T05:12:13-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/
However, current trends influencing the beliefs of peer support workers are troubling. Some peer workers identify with the very influential "psychiatric survivor" movement. "Psychiatric survivors" are generally anti-psychiatry; they have "survived" psychiatry. As well, many have experienced abusive parents and this has led to the negative attitudes they too frequently have about the role of parental involvement.
Since many "psychiatric survivors" have been inappropriately prescribed anti-psychotic medications they did not need for their mental health problems, the movement tends to oppose the use of these drugs. However, I see no acknowledgement in this movement, a movement endorsed by some social scientists, of relevant science-based research; the Canadian Psychiatric Association states that 90 per cent of people with schizophrenia will have a relapse if they discontinue the use of anti-psychotic medications.
There are numerous factors that lead many people with schizophrenia to stop taking medications. Many people experiencing psychosis are simply unable to understand that they are ill. This neurobiologically based lack of awareness (or "anosognosia" in the DSM-IV-TR) easily leads to homelessness, victimization, and involvement with the criminal justice system. I have never seen this symptom acknowledged by spokespeople for the "psychiatric survivor" movement.
Currently, the Mental Health Commission of Canada (MHCC), under the leadership of Lt. Col. Stephane Grenier, is setting up a plan to guide the training of peer support workers. Col. Grenier has done excellent work in educating the public about the prevalence of post-traumatic stress disorder in military veterans and the value of peer support in treating it. However, I believe his approach to responding to people with psychotic illnesses is potentially dangerous. In a recent interview Col. Grenier revealed that his program proposes that peer support workers be trained to have a neutral stance about the value of medication.
A key issue in the hiring of an increasing number of peer support workers is that focusing on their use diverts attention from the lack of other critically important rehabilitation strategies. These missing programs need highly trained and more expensive clinicians.
One of the gaps in services is the general lack of access to cognitive behavioural therapy which can help people manage many symptoms that they continue to experience.
Another omission is the lack of programs addressing the common cognitive deficits that people with schizophrenia often develop. Since one per cent of the population has schizophrenia, a significant number of people are impacted by these deficits. The U.S. National Institute of Mental Health (NIMH) states that the cognitive losses associated with schizophrenia are the largest factor that accounts for ongoing disability. These losses include, for example, problems with concentration, working and short-term memory, sequencing of steps to complete a task, and problem-solving skills.
Research into cognitive remediation and the programs that have been developed to address it has been a major focus for NIMH in recent years. However, the topic is largely ignored in Canada. Clients and families wanting help in advocating for these kinds of programs have not found any allies in the "psychiatric survivor" movement. This movement opposes the idea that psychotic illnesses are brain disorders; meanwhile, this neurobiological approach to psychotic disorders is pervasive in contemporary neuroscience.
Unfortunately, the beliefs of the "psychiatric survivor" movement are having increasing influence on peer support workers. Last month my daughter participated in a Wellness Recovery Action Plan program offered by Vancouver's mental health services. On the final day, my daughter was told by the peer leader that they were all there because of the trauma and abuse they had experienced as children and the wounds they suffered by having parents who "were never there for them."
Fortunately, my daughter has had good education elsewhere about her schizoaffective disorder, but we wondered about the impact of this message on the other participants. Given that paranoia is a frequent symptom of psychotic disorders, this unwarranted version of "education" about their illnesses can only further erode the relationships these vulnerable people have with their families. Family involvement is linked to better outcomes for people with psychotic illnesses.
This month the MHCC will reveal its new national mental health strategy. Some of us are looking for support for better funding of the highly skilled services that people with the most severe mental illnesses deserve. And we want to know that the expanding number of peer workers will not be sending harmful messages.]]>Stop Blaming Me for my Daughter's Mental Illnesstag:www.huffingtonpost.com,2012:/theblog//3.14115022012-04-12T09:34:52-04:002012-06-12T05:12:01-04:00Susan Inmanhttp://www.huffingtonpost.com/susan-inman/B.C. Teacher about the importance of educating staff in schools about mental disorders, a fellow teacher asked me if I knew what we'd done to cause my daughter's illness.
The unjustified suspicion of mental health professionals can be even more damaging. When we took our floundering teenage daughter to a credentialed counseling psychologist, we knew nothing about severe mental illnesses. As it turned out, neither did she. Her training included no material on psychotic disorders. Instead, it focused on psychodynamic theories, which look for the causes of current problems in people's early childhood experiences. Her misguided assumptions, fed by her training, led to chaos in the early years of our daughter's illness and to an unnecessarily long and dangerous psychotic episode.
Even with recent decades of robust research in neuroscience, parental caregivers of people with psychotic disorders soon learn that their interactions with the mental health system will be filled with blame. Many mental health clinicians in Canada, like our daughter's counselor, have had no science-based training on schizophrenia or bipolar disorder. Too often their interactions with families weaken the bonds that the illnesses have already frayed.
Psychiatry, for most of the 20th century, used the theories of Freud, which were never based on evidence-based research, to develop elaborate ways of blaming parents for schizophrenia. The Canadian Psychiatric Association now explicitly describes schizophrenia as a treatable brain disorder that is not caused by poor parenting.
Our relationship with our daughter's psychiatrist has been extraordinary. I believe it is responsible for her unexpected recovery. When the psychiatric team at Vancouver's St. Paul's Hospital first met her, she was one of the most severely psychotic teenagers they had ever seen. From the time that one member of this team, our daughter's current psychiatrist, began to work with her, he listened carefully to our input as we navigated the arduous path to her stability.
Even with this history of mutual respect, my husband and I were stunned recently when we were discussing strategies for managing any difficulties that might emerge during an upcoming trip. He stopped the discussion, looked at us, and said, "You guys are such great parents!"
I'm immersed in a community of parental caregivers in Vancouver and have been asking if anyone has ever been told anything like this. The answer is, "Never." These friends, who constantly inspire me with their energy, dedication and resourcefulness in advocating for their struggling children, find it hard to imagine hearing this kind of supportive response. Instead, my question is usually greeted with yet another account of the wounding of families by the mental health system.
Some parents do receive much-needed support from their own family physicians, who also provide primary healthcare to their often unstable sons and daughters. For many years, both my husband and I have freely vented, grieved, and tried to problem solve with the informed and compassionate help of our family doctor.
In recent years, the Canadian Psychiatric Association and the College of Family Physicians of Canada have begun an active collaboration including an annual Shared-Care conference. Much of the focus has been on helping family physicians become more knowledgeable in responding to the serious mental illnesses they are increasingly being asked to manage.
The upcoming Shared-Care conference in Vancouver offers richly informative sessions for family physicians. However, I don't see any sessions that provide family physicians opportunities to share their often considerable expertise in helping parents survive their daunting tasks. Fortunately, this kind of conference does invite informal communication on just these kinds of overlooked topics. Since family caregivers for people with severe mental illnesses save the healthcare system money, new ways of supporting them are well worth considering.