A major trend in the delivery of mental health services has been to turn over more responsibility to peer support workers. These workers, living with various mental health problems, can offer support and practical assistance to others who are struggling. I am very much hoping, in fact, that my daughter can eventually do this kind of work. Having emerged from a long, devastating psychotic illness, her warm presence could bring hope to people who are much less well.
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.
I agree, Peer Mentors should receive training, and there definitely should be very clear mandates and guidelines on what is said and what is not said.
I have developed my own Peer Mentor Coaching & Workshop Program, without any funding and all at my own cost. The results with clients who have tried many other means of therapy or help has been incredible.
I applaud the Mental Health Commission for their Making the Case Project.
In all therapies there are negative and positive. The Physician I first had when I they didn't know what was wrong with me took me off antidepressants cold turkey. The Psychiatrist I had while in the Psychiatric ward put me on an anti-psychotic that led to me coding.
It doesn't mean I do not support medical or professional help. This is to illustrate that everyone makes mistakes whether your a physician, psychiatrist, psychologist, social worker, coach or peer mentor.
I am of the belief that every individual will find the treatment plan that works for them, which could be different to the next person. No form of treatment in my mind is negative, as it may work for just one person.
It's about time the mental health field collaborates together vs putting each other down.
(If my spelling or grammer are off in this responce it's because I'm typing in the dark and I'm so angry I'm lucky I can type at all.
Dag nabbit!
You the author may have a lot of experience of this but how is that relevant to the whole.
The condition is widely researched and well funded and get a lot of attention most others don't.
As a psychiatrist survivor myself i hate those smug pseudo-scientific types especially the Freudian ones.After all he treated 8-9 patients and drove at least one to sucide.Pills and crackpot theory's nearly killed me as the pills i took made me unable to eat in the end i had a stark choice go cold turkey or starve and due to friends help i went cold turkey.
In the end i got some therapy from a properly qualified nurse that helped me rebuild a new life with no support,Yes i am now ill again but i had 13 years of a good life.
Now i don't get any help at all apart from being mocked by social workers and ignored by my GP.
It sounds like a peer support worker was wonderful in responding to your situation. Thank you for sharing this story; I think this is a great example of how well this program can work.
I am, in fact, very supportive of peer support programs as I try to make clear in my opening paragraph.
However, I also see some problems, which I have raised in my article, that I believe need careful examination.
Susan
While my article does describe some of the ways that I believe peer workers have valuable contributions to make, your comment doesn't acknowledge any of the significant problems that I mention.
I am uncomfortable with your use of the word incarceration which I am assuming you are using to describe involuntary treatment for people in the midst of a psychotic episode. I wouldn't call these episodes 'temporary mental distress' and I worry if the safety of people lost in psychosis is left to those who think of psychosis in this way. In fact, untreated psychosis is a key factor that leads to real incarceration which we can see in the increasing number of mentally ill people in prisons.
I don't believe that people living with psychotic disorders should receive services from mental health workers who don't have a science based understanding of these disorders.
Susan
I hope that Peer Support continues. It is an invaluable service to people who need it.
I referred to you as Katie in my last comment, sorry I had that neme on my mind.
I am a peer reovery coordinator and know in 6 years I have never hurt anyone. I had a great childhood and very supportive parents when we found out I had Schizophrenia. Knowing this to be true nobody could convince me otherwise. When you know your parents were good to you nobody can change that opinion. I am pro medication and understand that people go off there medications for many reasons, not just the survivor movement. Acceptance of your illness is key, once you do and understand that you need medication nobody can take that understanding away.
James Kindler
Adopting The Koran Algorithm for screening.
“...to reduce these diagnostic errors, Koran and his associates developed an algorithm to ..narrow down the likelihood of medical disease. Have Trauma Treatment and Relearning Stress Responses become Priorities, particularly in Child Services
“ Trauma exposure has been linked to later substance abuse, mental illness, increased risk of suicide, obesity, heart disease, and early death.”
The goal of the various cognitive l therapies is to help individuals relearn stress responses.
4: Educating the workforce - Making Information about Recovery and NON-DRUG therapies available
“A patient who is given one therapy as his only option can lose all hope if it fails. Many psychiatric patients live lives of quiet desperation, suffering side effects from meds they dislike but feeling they have no other choice.”
. For many, hope is the most powerful medicine of all”.
Despite the many obstacles, recovery from mental illness and the many symptoms which are mistakenly attributed to mental illness is currently a fact for thousands of individuals across America. Many more would recover with a knowledgeable workforce helping to create a No Wrong Door mental health system.
5: Eliminating bureaucratic boundaries including:
B. Reforming HIPAA regulations (U.S)
C. Blocking the implementation of the DSM-V while replacing it with a standard more in line with the findings of the National Institute of Mental Health
(From Creating A First Rate MH system www.approach2balnce.org)
Google: DSM-IV-TR anosognosia Associated Features
This information on anosognosia in the DSM-IV-TR is on p. 321.
The hyperlink I provided is to the article in Schizophrenia Bulletin (a publication associated with the National Institute of Mental Health) that provides a very informative overview of Javier Amador being asked by the DSM-IV-TR team to write the entry about anosognosia.
For a more thorough discussion of knowledge about schizophrenia and implications for future research see "Rethinking Schizophrenia" by Dr. Thomas Insel, Director of the US National Institute of Mental Health.: http://www.nimh.nih.gov/about/director/publications/rethinking-schizophrenia.shtml
I know you distrust NIMH.
I think your perspective assumes that people with psychosis can recover by avoiding anti-psychotic medications and participating in various healing communities. The evidence supporting this belief should be closely examined.
I have heard you speak online and, although I strongly disagree with your choice and use of evidence, I am truly sorry about the tragic loss of your son. I understand why you think that psychiatric practices led to his death. I believe that without anti-psychotic medications my daughter would be psychotic and probably homeless or in prison or no longer alive.
Susan
Why on earth would you say that you “know” I distrust the NIMH?! You don’t know me. We have never met. The fact is, I do have profound trust in at least one NIMH researcher, namely psychiatrist Loren Mosher, MD. Dr. Mosher was the first chief of schizophrenia studies for the NIMH. I quote him in a talk I did for TEDx about what fosters complete and robust recovery from psychotic disorders. Here is a link to that TEDx talk, where I quote him and numerous other psychiatrists who also believe in full recovery from psychotic disorders, and who find the use of neuroleptic (a.k.a. “antipsychotic”) drugs to be of questionable benefit.
http://tedxtalks.ted.com/video/TEDxColumbus-Suzanne-Beachy-Wha
I completely agree with you that the evidence supporting complete recovery from psychosis should be closely examined. Well said! For example, we should be examining the evidence for successful treatment models like the Open Dialogue Therapy used Northern Finland, where the rate of schizophrenia diagnoses has been reduced by 90 percent! Wow! Let’s lobby the NIMH to implement this life-saving treatment model here in the U.S.
I must say that I am confused by your statement, “I strongly disagree with your choice and use of evidence.” Why do you object to the use of evidence? Would you prefer that I make up stuff and promote it as the “truth?”
Suzanne
While on the topic of the DSM-IV-TR, if you look at the front cover, you will see that it plainly states that it is a “manual of mental disorders.” It is not a manual of “brain” diseases or mental “illnesses.” Isn’t the very term “mental illness” a misnomer? How can the "mind" have an "illness?"
Language aside, let me be very clear that when it comes to acute emotional distress or psychiatric diagnoses, I am all for promoting whatever treatment helps people to get well and stay well. According to the link you provided above, here’s what NIMH director Thomas Insel says about “Treatments, especially pharmacological treatments, have been in wide use for nearly half a century, yet there is little evidence that these treatments have substantially improved outcomes for most people with schizophrenia.”
Do YOU trust the NIMH, Susan?
Google: Eleanor Longden, Daniel B. Fisher MD, PhD, Leah Harris, or Oryx Cohen. These are just a few of the many, many people who have fully recovered from psychotic disorders. Can you discern a common factor in what fostered recovery of their health and wholeness?
The peer support worker on the Assertive Community Treatment (ACT) team explained to me that this peer support role is not about his own recovery. His job is to serve the recovery of the client. He has to separate his own recovery needs from those of the client he is serving.
He takes care of his own recovery needs when he is off the job.
That would be called professionalism, and is the approach all mental health providers are obligated to take. Psychiatrists take courses to learn how to separate their own issues from those of the client. Maybe peer support workers do/should too.
So a peer support worker caught using his or her position as a platform to further their own anti-psychiatry, anti-medication or anti-involuntary treatment views would be behaving in an unprofessional manner and should be dismissed from the job.