Now I no longer carry a diagnosis or take meds. Now I own my house, my business, a car, and the sweetest brown AND black spotted dalmation mix in Kansas City. Now I ride my bicycle across the Midwest for work trips to places like Omaha, Wichita, and Jefferson City (last week.) I ride across the city to meet homeless guys and visit places most people didn’t know existed, like our double decker train bridge, the concrete canyon blooming beyond with street art, and the worldwide ultraglobal top secret super headquarters. I’m engaged to be married in May to an awesome guy and I am finally getting the chance to be a parent that was taken away from me by my diagnosis. I’m a regionally recognized artist, have retirement savings and no debt but student loans, grow much of my own food, and have really awesome friends and hobbies and community connections. As Arlo Guthrie says, “I’m not proud, just tired.”

Tired of seeing my brothers and sisters in recovery dying. Tired of seeing them give up on their dreams. Tired of seeing people get a permanent diagnosis for a temporary problems. And mostly, I’m tired of hearing about the problems without the solutions.

My thought is that if people that were in emotional distress could pay for all of their own treatment, we can eliminate the middleman. We eliminate the need to search for charity funding or lobby for government funding that tends to be dominated by institutional recipients. We can create a model with a very minimal need for professional “help” by people with 4-10 years of student loans to pay off.  In our business, Wellness Wordworks, peers help each other with factually verified recovery information, inspirational stories, profound artistic statements, challenging exercise opportunities, and engaging community building.

Wellness Wordworks is a type of business called a social entrepreneurship. A business that helps provide benefit to our community has a better chance to solve our problems if it can pay for all its own expenses. Then the growth of the business only depends on the demand for the business, and we all can feel deeply and sorely in our hearts the huge unmet need right now for honest mental health information. Here is a description of 12 priniciples of mental health social entrepreneurship and how our program fits those. We would love to hear in the comments below about how your business fits into these 12 principles.

Mental health social entrepreneurship uses Google Fiber’s 100 times faster internet:

Pitching our mental health social entrepreneurship idea at Startup Weekend KC

We were a semi-finalist for $350,000 from Google since we are in Kansas City and figured out a possible way to use the 100 times faster internet that Google is building here. Kansas City was selected as the only city out of 1200 cities to apply for Google Fiber and it’s huge to bring the recovery movement into this project. What can you do with 100 times faster internet? Imagine getting your 40 hour workweek done in 24 minutes. Imagine driving your car across the country not in 7 days but in 1.68 hours. That’s what 100 times faster means. We are on top of something huge, so huge I haven’t even really figured it out. It’s kind of like when Edison invented electricity – no one knew how to use it. What do you do with a light bulb, anyway? And I don’t even know whether a server in KC means you get 100 times faster internet in North Dakota or not.

If you want to help us figure this out, please, please volunteer. Here’s our application form from two months ago.  Currently we have 54 volunteers working on projects like grant writing, medical research, video editing, making surveys, researching software programs, writing blogs for us, going to advocacy meetings, and creating artwork. Our economy is now the gig economy, the new economy, the rise of the creative class with up to 25% of people in the US self-employed. You CAN build your own job, and anyone in the country can help us from anywhere. When you help us, you gain skills, connections, and approaches for increasing your own income, including with our rapidly expanding programs.

Wellness Wordworks mental health social entrepreneurship has two main focus areas:

B: The second focus of our Mental health social entrepreneurship focus is to solve those problems.  We are envisioning a website that might be called Connect Power that would be able to fix mental health care for pennies on the dollar. We are also going to expand to all chronic disease like arthritis, lupus, cancer, diabetes, etc. in reasonably short order. The Connect Power Website will have three main functions:

1) peer support: people volunteer or get paid by membership fees to help share knowledge with each other via phone text, email, video, online forum, in-person etc. People can make profiles to list what they know, want to learn, and what hours and how they are available. If the video work is done locally it might use the Google Fiber network.

2) crisis care: people volunteer or get paid to let folks in urgent need of help come over to their house and couch surf for a while. People again put up profiles with what kind of crises they know and can handle, and what kind of space is open in their house.

Vickie McCarty of Maine has been following our mental health social entrepreneurship since day 1

3) health care: people can hook up with alternative health care providers and get unlimited group help like exercise, yoga, therapy, or self-improvement classes. If these clases were hosted with video on the web it would again tie in to the Google Fiber network. A higher level of help would included unlimited 1:1 help like therapy, case management, massage, Reiki, or medication advice. This recognizes the huge expense of 1:1 help, especially with people who have degrees and student loans to pay off.

The website will be grant funded initially and then paid for by membership fees. If people can’t afford membership fees they can count some of their volunteer time above for the membership fee. I’d like to start by focusing nationally on peer support (1) but locally in Kansas City market for the crisis care and alternative health care providers. Then later expand nationwide or worldwide.

I sent them to a colleague, far more experienced than I, for couples counseling. When I conferred with him, his stories of their sessions frequently bore little relation to how they each described to me their marriage.

Over the years, I’ve learned a couple of very troubling things that this situation exemplifies.

The first is obvious: a therapist cannot reasonably assume a client’s reports to be accurate.

The second is a bit more subtle: “supporting” a client’s perceptions can easily wreck lives. In this instance, supporting the husband’s understanding probably wouldn’t have worked out well for the wife, and vice versa.

In the twenty-five-plus years I’ve been in practice, I’ve often had therapists refer the spouse of one of their clients to me. Almost invariably, they’ve given me an account of what they understand the spouse’s issues to be—based entirely on conversations with their own client. I’ve learned just not to expect these accounts to be accurate. These accounts aren’t always terrible (though sometimes they are), but they’re often enough off in significant ways.

I’ve also occasionally had the parents, siblings, or significant others of my own clients come in for consultation. In almost every case, I’ve had to revise my surmises about those people—sometimes in a more positive direction, but sometimes in a negative one. One case in particular stands out in memory. A client brought in her older sister, whom she’d generally portrayed as a stalwart supporter. I was stunned to watch the sister systematically undermine, contradict, and control my client, while my client willingly submitted to being demeaned.

I remain puzzled that therapists, all of whom have some sort of graduate degree, think they can understand someone they’ve never met, based on the pained accounts of suffering clients. I’m excruciatingly vexed that therapists are routinely willing to support, encourage, or exhort their clients to actions based on such questionable views.

Even the most by-the-book, “correct” therapy can be dangerous: the client’s changes impact people outside the therapy room, who have no say in shaping the therapy. A therapy that makes a client very happy can easily wreck the lives of those he or she influences.

The direct relevance of these observations to “Mad in America” is this: The psychotherapy and counseling industries have themselves played a significant role in our culture’s willingness to embrace biological psychiatry. We will not win back the hearts and minds of the public if we keep repeating the mistakes that made people willing to leap into the arms of the pharmaceutical companies.

Many people, both people who need help and their significant others, quite rightly fear therapy. The possibility of getting relief without falling prey to the influence of therapists offers those people hope.

Two major historical phenomena illustrate the problem: NAMI, and the False Memory Syndrome.

While NAMI is sometimes portrayed as a front for the pharmaceutical companies, that’s not how it started. It started with families of the seriously mentally ill who were sick to death of being portrayed as causing the problems of beloved family members. While we can, and should, decry the perfidy of the pharmaceutical companies for many things, we can hardly blame them for supporting an organization that needed an alternative to therapists who blamed them for their own heartbreak.

And the False memory Syndrome, which was almost entirely manufactured by the therapy industries, simply disgraced talk therapy and proved that even the most highly trained therapists, at prestigious institutions, could not be trusted to abide by basic principles of logic and evidence.

While we are rightly aghast at the machinations of psychiatrists and pharmaceutical companies, we do not often enough ask why our culture has been so ready to embrace biological psychiatry. After all, “drugs” face a generally negative bias in our culture, and we have historically tended to see “facing your problems” as a moral imperative. As the most religious culture in the industrialized West, America is not naturally inclined to embrace materialist explanations of human suffering.

If biological psychiatrists have lied to us, we need to ask why, as a culture, we have been so willing to embrace those lies. Generally, we’re most apt to be conned when the con men appeal to our hopes and fears. We know that people in pain hope for relief, and the people in their lives hope that for them. What we don’t like to admit is that they fear the influence of therapy, and often rightly so. If we want to defeat biological psychiatry, we can’t just show its lack of integrity. We have to offer alternatives that deserve trust.

During the program, Irving Kirsch provided the bottom line finding from his analyses of FDA data documenting that antidepressants are not effective in treating persons scoring in the mild and moderate ranges of depression. Kirsch indicated that antidepressants are effective for persons scoring in the severe ranges of depression. What Kirsch could have said, which he said in his book, is that even for the severe depressed, there is only a 4 point (out of 51) difference between the placebo and the drug treated. Moreover, comparing those who are mildly depressed with those scoring in the severe range, the same level of improvement occurs for the mildly depressed and those scoring in the severely depressed range. The reason for the finding of better performance for the drug in the severely depressed group is that the severely depressed don’t exhibit much change in response to placebo. Ironically, Michael Thase, the exponent for antidepressants, has admitted that, on drugs, only 47% are in remission. By the way, the program could have discussed spontaneous remission, but did not. Even the severely depressed do recover. Before drugs, the average duration of an episode of depression was 6 months. Over a two year period, 80% of persons on drugs or without drugs will recover.

In the broadcast, the focus of the discussion was on the short term outcomes from the studies evaluating treatment for eight weeks. The outcomes for drugs appear even worse if one examines long term. For example in a study by Maj et al (1992), during a five-year follow-up 72 persons with 76.3% remaining on drug, 75% have relapsed. In a meta-analysis, Williams et al. (2009) reported that for those who fully recover on drug and remain on drug, 45% will relapse during a three year period. Fava and Offindani (2011) and Andrews et al. (2011) have compared relapse rates among those on drug versus those not on drugs. Those on drugs have higher rates of relapse.

Lesley Stahl correctly cautioned that people should not discontinue taking their drugs abruptly. Stahl did not detail the very dramatic drug withdrawal effects. In his book, Kirsch indicates that 20% of persons experience withdrawal symptoms when drugs are discontinued. In fact, in 1994, I argued that the very high rates of depression relapse (around 75% of persons randomized to placebo maintenance) within the 6 months after switch to placebo probably reflects drug withdrawal. The withdrawal symptoms noted in the literature include mania, motor problems in the jaw, nausea, abdominal cramping, headaches, sleep disruption, blurred vision, numbness, twitches and tremors. What is even more disturbing, although Stahl advises supervision from the doctor during withdrawal, request for assistance in drug discontinuation will find the doctor unprepared. There is a literature on how to detox from heroin, alcohol, benzodiazepines. Similar literatures are unavailable for detox from antidepressants.

There was reference to the side effects in the program, but no specification of what the side effects entail. Side effects are not trivial. Most people are aware of the diminished libido and sexual dysfunction associated with antidepressant drugs. They may not be aware of the association with suicidal ideation, for which there is a black box warning for young people and children. Long term, people lose the ability to respond emotionally both to positive and negative stimuli. (This has been verified with brain imagery.) SSRIs are associated with bone loss. (Cells in bone express the protein on which Prozac operates). SSRIs are associated with bleeding problems. (Platelets also express the protein on which Prozac operates.) SSRIs are associated with weight gain, metabolic syndrome, loss of vagal tone, an increase in inflammatory markers, and an increased risk for diabetes.

Stahl did report that the British health system is training more psychotherapists. In the studies evaluating drugs, many have included a psychotherapy control group. Psychotherapy consistently proves as effective as drugs, although drugs sometimes achieve remission more rapidly by several weeks. Moreover, persons treated with psychotherapy, in various studies, are less likely to relapse than those treated and continued on drug. As Kirsch argues in his book, psychotherapy is more cost effective as well.

Stahl also reported that the British are encouraging exercise, which has shown to be effective in preventing and treating depression. While the 15 minute segment was insufficient time to detail other alternatives, there is an emerging literature on dietary interventions (curcumin, omega-3s, Mediterranean diet) that prevent and ameliorate depression. Dietary interventions and exercise, unlike antidepressants which increases risk for diabetes and heart disease, will prevent heart disease and diabetes.

Hopefully America can learn from the British. As Americans move into universal health care coverage, we need to learn from those across the pond how to do it better and more cheaply.

Annotated Bibliography on Outcomes for Treated and Untreated

Andrews, P. W., Kornstein, S. G., Halberstadt, L. J., Gardner, C. O., & Neale, M. C. (2011). Blue again; perturbational effects of antidepressants suggest monoaminergic homeostasis in major depression. Frontiers in Psychology, 2, Article 159, 1-24. Analysis suggests greater relapse in those being treated with antidepressants

Beck, A. T. (1967). Depression: Causes and treatment. Philadelphia: University of Pennsylvania Press. Comments that in the more refined studies estimate is episode of untreated depression lasts about 6-8 months p. 51

Fava, G. A. (2003). Can long-term treatment with antidepressant drugs worsen the course of depression? Journal of Clinical Psychiatry, 64, 123-133. Fava reviewed literature on the increased frequency of episodes and shorter remission periods reported in the new literature compared to older literature. He reviewed studies finding emergence of depressive symptoms in groups who were treated with SSRIs for conditions such as panic disorder but were not depressed. He also reviewed the literature considering the precipitation of mania in individuals taking an antidepressant. He advanced the hypothesis that antidepressants may impair whatever switch mechanism the body has for maintaining equilibrium. He also considered the possibility that people may just become tolerant to antidepressants, which might be a permanent condition. He acknowledged the similarity of his hypothesis to the possibility introduced earlier (1989) by Fredrick Goodwin that drugs will accelerate a natural cycle of mood fluctuation.

Fava, G. A. (2003). Can long-term treatment with antidepressant drugs worsen the course of depression? J Clin Psychiatry, 64(2), 123-133. Speculates on reasons for worse relapse on drugs

Fava, G. A., & Offidani, E. (2011). The mechanisms of tolerance in antidepressant action. Prog Neuropsychopharmacol Biol Psychiatry. doi: S0278-5846(10)00292-7 [pii] speculates on why high relapse rates on medications

Gueorguieva, R., Mallinckrodt, C., & Krystal, J. H. (2011). Trajectories of depression severity in clinical trials of duloxetine: insights into antidepressants and placebo responses. Archives of General Psychiatry, 66 (12), 1227-1237. This study identified the curves in depression scores in those treated with placebo and drug over the 8 weeks of the trial. Both the placebo and drug responders showed a decrease in symptoms of depression over time. (About 76.3% of those receiving drug were responders). However, for the 23.7% of those on drug who were non-responders, the trajectories was either flat or with a positive slope. The authors questioned whether there is subgroup of depressed persons who are worse off on drug.

Kirsch, I. (2010). The emperor’s new drugs: exploding the antidepressant myth. New York: Basic Books.

Klein, D. F., Gittelman, R., Quitkin, F., & Rifkin, A. (1980). Diagnosis and drug treatment of psychiatric disorders: adults and children (2nd ed.) Baltimore: Williams and Wilkins. See page 410-says 8 months average duration of untreated depression

Lehmann, H. E. (1983). Clinical evaluation and natural course of depression. Journal of Clinical Psychiatry, 44, 5-10. Summary statement: “Without antidepressant therapy, episodes of clinical depression last from 2 months to several years, with average around 5 to 6 months. One-third of the patients recover within a year; probably one out of four untreated episodes last more than 2 years. Depressive episodes occur, on the average, every 2 to 3 years.”

Posternak, M.A., Solomon, D. A., Leon, A. C., Shea, M. T., Endicott, J., & Keller, M. B. (2006). The naturalistic course of unipolar depression in the absence of somatic therapy. Journal of Nervous and Mental Disorders, 194 (5), 324-329. Median time to recovery was 13 months for those who did not seek treatment; was 6 months for those who sought treatment

Spijker, J., De Graaf, R., Bijl, R. V., Beekman, A. T. F., Ormel, J., & Nolen, W. A. (2002). Duration of major depressive episodes in the general population: results from The Netherlands Mental Health Survey and Incidence Study. British Journal of Psychiatry, 181, 208-213. 20% of the subjects had not recovered after 24 months-level of treatment did not alter result.

Thase, M. E., Haight, B. R., Richard, N., Rockett, C. B., Mitton, M., Modell, J. G., VanMeter, S., Harriett, A.E., & Wang, Y. (2005). Remission rates following antidepressant therapy with bupropion or selective serotonin reuptake inhibitors: a meta-analysis of original data from 7 randomized controlled trials. Journal of Clinical Psychiatry, 66 (8), 974-981. After 8 weeks for all but one study which followed for 16 weeks, response rates across drugs range from 62% to 63% and for remission 47%, which is better than placebo with 51% response and 36% remission. Authors estimate that placebo effect may account for 75% of the efficacy in response to an antidepressant drug.

Williams, N., Sampson, A. N., Simpson, K., & Nahas, Z. (2009). Relapse rates with long term-antidepressant drug therapy: a meta-analysis. Human Psychopharmacology, 24, 401-408. Continuation on antidepressant, risk of relapse is 23% in one year, 34% in two years; 45% in 3 years

Zis, A. P., & Goodwin, F. K. (1979). Major affective disorder as a recurrent illness. Archives of General Psychiatry, 36, 835-639. A literature of studies before drug therapy. Those who never experience a second episode: Kraepelin 60%; Pollock 57%; Rennie, 21%, Lundquist, 66%, Stenstedt, 62%

Annotated Bibliography on withdrawal symptoms

Ceccherini-Nelli, A., Bardelllini, L., Cur, A., Guazzelli, M., Maggini, C., & Dilsaver, S. C. (1993). Anti-depressant withdrawal: prospective findings. American Journal of Psychiatry, 150, 165. Examined 10 individuals withdrawn from various antidepressants. Seven exhibited withdrawal symptoms which included cardiac arrhythmia, resting tremor of the jaw, tongue, and upper extremities, insomnia, chills, sweating, nausea, headache.

Haddad, P. (1997). New antidepressants and the discontinuation syndrome. Journal of Clinical Psychiatry, 58, Supplement 7, 17-21. Indicates that patients need to be on SSRIs for 8 weeks before a discontinuation syndrome will be observed; indicates that 20-86% of sample report symptoms; symptoms include dizziness, nausea, lethargy, headache, anxiety, tingling and burning sensations, confusion, tremor, sweating, insomnia, irritability, memory problems, anorexia

Lejoyeux, M., & Adés, J. (1997). Antidepressant discontinuation: a review of the literature. Journal of Clinical Psychiatry, 58 (Supplement 7), 11-15. Mentions: gastrointestinal distress, arrhythmias, anxiety, sleep disturbance, movement disorder, panic attacks, mania or hypomania, delirium, mood changes, dizziness, sensations of tingling and burning in limbs

Littrell, J. (1994). Relationship between time since reuptake-blocker antidepressant discontinuation and relapse. Experimental and Clinical Psychopharmacology, 2 (1), 82-94. This article analyzed results from 11 studies in which persons who had fully recovered from an episode of major depression had their medication discontinued. All studies found high rates of relapse (57% to 100%) within the six months following drug discontinuation. The paper argues that the high relapse rates represented drug withdrawal rather than a reemergence of major depression.

McGrath, P. J., Stewart, J. W., Tricamo, E., Nunes, E. N., & Quitkin, F. M. (1993). Paradoxical mood shifts to euthytmia or hypomania upon withdrawal of antidepressant agents. Journal of Clinical Psychopharmacology, 13(3), 224-225. Report emergence of mania/hypomania in 2% following antidepressant withdrawal in persons without a history of mania/hypomania.

Stoukides, J.A., & Stoukides, C. A. (1991). Extrapyramidal symptoms upon discontinuation of fluoxetine. American Journal of Psychiatry, 148, 1263. Report of man who had taken Prozac for 6 months, upon discontinuation was experiencing muscle spasms and exhibiting protruding tongue movements

Annotated Bibliography on Drug Side Effects

Andersohn, F., Schade, R., Suissa, S., & Garbe, E. (2009). Long-term use of antidepressants for depressive disorders and the risk of diabetes mellitus. American Journal of Psychiatry, 166(5), 591-598. Increase in diabetes

Bliziotes, M. (2010). Update on serotonin and bone. Journal of Clinical Endocrinology and Metabolism, 95 (9), 2124-4132. Recognizes that there are serotonin transporter on the membranes of cells involved in bone turn over. Indicates that SSRIs are associated with decreased bone mass, increased bone loss, and increased fractures.

Csoka, A. B., Bahrick, A., Mehtonen, O. P. (2008). Persistent sexual dysfunction after discontinuation of selective serotonin reuptake inhibitors. Journal of Sexual Medicine, 5 (1), 227-233. Discusses case reports of persons experiencing persistent genital anesthesia, loss of libido, and erectile dysfunction following discontinuation of an SSRI.

Fava, M. (2000). Weight gain and antidepressants. Journal of Clinical Psychiatry, 61 (Suppl. 11), 37-41.

Hamer, M., Batty, G. D., Marmot, M. G., Singh-Manoux, A., & Kivimaki, M. (2011). Anti-depressant medication use and C-reactive protein: results from two population-based studies. Brain, Behavior, and Immunity, 25(1), 168-173. Higher C-reactive protein, risk factor for cardiovascular disease

See Kawail, M., & Rosen, C. J. (2010). Minireview: a skeleton in serotonin’s closet? Endocrinology, 151(9), 4103-4108. Contains list of studies finding bone loss with SSRIs

Kivimaki, M., Hamer, M., Batty, G. D., Geddes, J. R., Tabak, A. G., Pentti, J., et al. (2010). Antidepressant medication use, weight gain, and risk of type 2 diabetes: a population-based study. Diabetes Care, 33(12), 2611-2616. Both weight gain and diabetes increase

Laje, G., Paddock, S., Manji, H., Rush, A. J., Wilson, A. F., Charney, D., & McMahon, F. J. (2007). Genetic marker of suicidal ideation emerging during citalopram treatment of major depression. American Journal of Psychiatry, 164, 1530-1538. 6% (120/1862) of their sample developed suicidal ideation early in treatment. Laje et al. were able to identify alleles for genes associated with the emergence of suicidal ideation

Licht, C. M., de Geus, E. J., Zitman, F. G., Hoogendijk, W. J., van Dyck, R., & Penninx, B. W. (2008). Association between major depressive disorder and heart rate variability in the Netherlands Study of Depression and Anxiety (NESDA). Archives of General Psychiatry, 65(12), 1358-1367.

Loke, Y. K., Trivedi, A. N., Singh, S. (2008). Meta-analysis: gastrointestinal bleeding due to interaction between selective serotonin uptake inhibitors and non-steroidal anti-inflammatory drugs. Alimentary Pharmacology & Therapeutics, 27, 31-40. A meta-analysis finding that SSRIs doubles risk for upper gastrointestinal haemorrhage and when combined with aspirin raises risk to 500%. It should be recognized that there are serotonin transporters on platelets and thus SSRI use can be expected to affect blood clotting.

McCabe, C.,Mishor, Z., Cowen, P. J., & Harmer, C. J. (2010). Diminished neural processing of aversive and rewarding stimuli during selective serotonin reuptake inhibitor treatment. Biological Psychiatry, 67 (5), 439-445. Cites anecdotal reports of emotional numbing to aversive and positive experiences in people taking SSRIs. Conducted  functional MRI observing the response to positive and negative stimuli in areas of the brain that are known to be activated by emotional stimuli. Healthy individuals who had taken citalopram for 7 days were less responsive to both positive and negative stimuli.

Moore, T. J., Glenmullen, J., & Furberg, C. D. (2010). Prescription drugs associated with reports of violence towards others. PloS ONE, 5 (12), ep. 15337. Analyzes the relative risk of increase in report in violence among those taking various drugs. Risk is elevated for those taking antidepressants and chantix for nicotine withdrawal.

Raeder, M. B., Bjelland, I., Emil Vollset, S., & Steen, V. M. (2006). Obesity, dyslipidemia, and diabetes with selective serotonin reuptake inhibitors: the Hordaland Health Study. Journal of Clinical Psychiatry, 67(12), 1974-1982.

Rosen, R. C., Lane, R. M., & Menza, M. (1999). Effects of SSRIs on sexual function: a critical review. Journal of Clinical Psychopharmacology, 19 (1), 67-85. Reports that as much as 80% may experience sexual dysfunction when taking SSRIs. Symptoms include anorgasmia, erectile dysfunction, diminished libido, and genital anesthesia.

Rubin, R. R., Ma, Y., Peyrot, M., Marrero, D. G., Price, D.W., Barrett-Connor, E., Knowler, W. C. (2010). Antidepressant medicine use and risk of developing diabetes during the diabetes prevention program and diabetes prevention program outcome study. Diabetes Care, 33 (12), 2549-2551. SSRIs doubled the risk of development of Type II diabetes unless an individual was also taking metformin (a drug used to treat diabetes)

Serebruany, V. L., (2006). Selective serotonin reuptake inhibitors and increased bleeding risk: are we missing something? American Journal of Medicine, 119 (2), 113-116. Indicates there are 120 cited peer reviewed articles documenting risk of platelet malfunction in persons on SSRIs.

Shah, A. (2011). Antidepressant use linked to thicker arteries. Emory University. Atlanta, GA. Retrieved 12/12/11 from http:shared.web.emory.edu/whsc/news/release/2011/04/antidepressants-linked-to-thicker-arteries.html.

I was diagnosed with schizophrenia when I was just nineteen. I am forty-three now, and I have recovered – and I use the term ‘recovery’ in its fullest sense. I have been free of medication and free of symptoms for twelve years. I have a husband, a home, and four young children – all things that I never thought would be possible at the age of twenty-five when I was informed of the diagnosis. At that time I accepted what I was told by the medical professionals; that the outlook was bleak in the extreme, that I would get worse as I became older and that I would have to be on medication for the rest of my life.

I was an extremely shy and nervous child. I had a chaotic upbringing – my mother was an alcoholic and my father a gambler. My father was also a very volatile character, and extremely verbally abusive. I found school very difficult – academically I excelled, but socially I was completely at sea. My only happy childhood years were those I spent at boarding school, but I had to leave this school prematurely because of lack of funds.

I fell into bad company and bad habits as a teenager, and became extremely unhappy and isolated. I left home at sixteen, lived in various bedsits and smoked a lot of cannabis, but managed to win a place to study Law at the University of Southampton. I found though, that with no social skills whatsoever and with very low self-esteem, I soon floundered at University. I had a breakdown when I was nineteen, was sectioned (forcibly detained under a section of the Mental Health Act) and spent three months in a mental hospital, St Ann’s in Poole, Dorset.

The treatment I received in hospital was brutal. Forced medication should in my opinion be outlawed, or saved for the most extreme cases— those who have been violent or suicidal. I was neither. The emphasis in hospital was on containment, not understanding, and this amounted to an inhumane system, notwithstanding the good intentions of some members of staff.

When I finally left St Ann’s I was keen to get on with life. I stopped taking medication gradually, under the supervision of a psychiatrist whom I saw as an outpatient. I went back to University and gained an Honours degree in Law. However, I was still extremely nervous and insecure. I found it almost impossible to relax in company, although I longed to be more sociable. I felt like an outsider. By the time I graduated, although I was academically qualified to do a professional job, I knew that such work was out of my reach.

Instead I took on work as a waitress and cleaner because it was all that I felt I could cope with. Over time my mental health deteriorated; I started to smoke cannabis again, and before I knew it I was sectioned once more and back in St Ann’s.

This time I did another three months’ stint. I hated everything about that place – the forced medication, the atmosphere of fear, the mixed wards, the humiliation of finding myself in such a situation once again. But by the time I left I was still very weak mentally, and when a psychiatric nurse visited me at home and offered me the opportunity to attend a day hospital, I accepted through lack of any other options. At least this way, I could claim benefits to pay the rent on my flat, and so I would survive.

I was now twenty-five, and it was at the day hospital that my life changed. I was told that schizophrenia had first been diagnosed when I was nineteen, at the time of the first breakdown, but that it had not been thought appropriate to tell me then. Apparently the condition was confirmed by my second breakdown. Although I was confused at the lack of proof of the illness – there was (and remains) no physical test – I was told that there was no chance of recovery unless I accepted the diagnosis. Then, in a room filled with psychiatrists, psychologists, and mental health nurses, I was told that my life was effectively over. That there was no chance of recovery anyway. They spelled out that I would have to take medication for the rest of my life, and that I would get worse as I got older.

I believe now that this dismal prognosis was the thing that most hindered my recovery. I respected medical opinion, and I believed what I was told. In the day hospital I started smoking cigarettes again (whenever I was mentally unwell I smoked; when I was better I stopped. For me, smoking is a major marker of my mental condition). I ate constantly – meals were free and plentiful and my weight and general appearance seemed to be completely unimportant in the context of the fact that I was now a SCHIZOPHRENIC.

I gave up hope. For a long period of time I travelled to the day hospital daily, took my medication dutifully and basically vegetated there. To be fair, there was some effort made towards education; we patients were told that schizophrenics are more of a danger to themselves than to others, for example, and that there was no element of split personality to the ‘disease’ that we suffered from. However, nothing detracted from my fear of what I had become, and what I might do as a SCHIZOPHRENIC.

After two or three years of this, when I finally began to recover, the impetus came from somewhere within myself. Somehow, I decided that I had had enough. I didn’t want to live like this forever. I knew that there was more to me than this. I didn’t want to be fat any more, so I began to control my food intake. I didn’t want to be unhealthy, so I gave up smoking and started exercising – I walked to the local pool where I swam every morning. I was then lucky to be offered a flat by a local Housing Association – the wife of the manager was a receptionist at the day hospital and she put in a word for me. This gave me some self-respect; I now had a decent home at a low rent, somewhere that I could be proud of and where I felt safe.

I began to work again, as a chambermaid in a local hotel. It was menial and poorly paid, but it kept me active and was as stress-free as a job could be. Eventually I found a better job, working for an insurance company in a call centre. Here I sent in an article to the internal newspaper, which resulted in some work setting up a newsletter for the home insurance department, and writing some internal communications documents for the call centre manager. I realised my vocation – I was a writer.

It took a while for things to settle properly. I met my husband, and we had a child, but I had my third and final breakdown after she was born. I was under considerable stress – my longed-for child was born a month early and was taken directly to the neonatal intensive care unit. But the breakdown was bad – I was sectioned again. It was a huge shock to my system and was regarded by everyone, including myself, as final proof of the schizophrenia.

I could not give in to the illness though, as I had done before, because I had my child to think about. As soon as I was released from hospital my husband returned to work and I assumed full care of our daughter. I looked after her diligently – played with her constantly, took her for long walks, and to mother and toddler groups. I was determined that my child should not learn to be shy, so I forced myself to start and to share conversations with other mothers at baby groups and on other excursions. And it worked! My daughter grew into a perfect little child, and my husband and I decided to cement our union with another. Fortunately this pregnancy and birth was straightforward, and I remained well afterwards. Two years later we had another child, and eventually our fourth and last, and still I did not require medication. I gradually became more confident of my ability to cope with life.

I realised over time that if I kept my life calm and quiet, I would thrive and so would my children. I am busy these days, but still based mainly at home and my life is very child centred. My children are growing up to be incredibly smart and grounded, and the pride I take in them has given me the belief in myself that I always lacked. I have a place in society now, and I carry out my daily business as a full-time mother in much the same manner as those around me.

I now recognise and respond to signs of stress; for example if I have difficulty sleeping I make sure that I step back from the source of my unease, make an effort to calm down. I eat well and regularly. I never let myself become agitated to the point where I feel I could lose control. I bear in mind that what is important in life is my family, and that is where I direct my efforts, because I know that without me the home that my husband and I have built would crumble.

I know that I am incredibly lucky to have got this far. I appreciate everything that I have now, probably because I thought for so long that it was out of my reach. My husband has been my greatest support, and I believe that my children have been my salvation. I am not sorry for anything that happened to me – I can see now that I played a part in my own downfall. I really want to help others who are in the same position now, to see that there is hope for the future. I feel strongly about a lot of aspects of psychiatric ‘care’ and I want to help to get the injustice in the system remedied.

I have been in receipt of State disability benefits for many years, and I believe that these helped my recovery, by removing financial stresses from the picture. However, the last step in my recovery has been towards work. I have written a book about my experiences, and it has had some success, which has encouraged me to follow the career I have always wanted, as a writer. I have found it hard in some ways to acknowledge that I am now well enough to work, but I realised eventually that the benefits were standing in my way; it is impossible to fully recover when you accept money for being unwell.

This journey back to work has happened very recently, and has been aided by a course of cognitive behavioural therapy. This has made a huge difference to my thinking. I have learned strategies to combat the anxiety that I have lived with for so long that I just thought it was part of my personality, and without the anxiety life is so much easier and better.

I consider myself very fortunate to have been able to manage my health without medication. Although I have had three severe breakdowns, I have only taken medication for a total of roughly five years in my life. I strongly believe that medication should be used only when necessary, and only when people agree to take it. Mental health problems can be dealt with in many other ways, and anti-psychotic medications have many extremely damaging side effects. There have been times in the last twelve years or so when I have been desperate for a magic pill to relieve the effects of stress and anxiety in my mind; but I knew that no such magic pill existed, and by exercising, eating and sleeping well, staying calm and quiet, confiding in friends and so on, I have learned to manage my own life, and I recognise that this has made me a more resilient and capable person.

I have not had a straightforward path to recovery; the stigma of the condition, the very word ‘Schizophrenia’, has been a cause of shame and has certainly contributed to a sense of low self-esteem. For many years my doctor claimed not to be able to spell the word ‘schizophrenia’ and wrote ‘nervous debility’ on my sick notes instead. I wish I had taken the hint. I have rejected the diagnosis for myself now – I do not think it is a valid label, or a helpful one, and it certainly does not describe me or my life.

In recent years I have learned to cope with stressful events, although on occasions I have feared that I would not. I see psychosis as the mind’s way of escaping from reality, when reality becomes so awful that one cannot cope. In that way it is a protective device. But the final step to recovery for me has been accepting that I am now completely healed; that I am no longer any more vulnerable than anyone else, that anyone could break down given the circumstances I found myself in, and that I am in fact now much stronger as a result of my experiences. That I am fit to work, because I am fit to live.

You can find more information on my blog at http://schizophreniaattheschoolgate.blogspot.com<http://schizophreniaattheschoolgate.blogspot.com/> or in my book ‘Surviving Schizophrenia: A Memoir’.

I would be very happy to receive any comments on what I have written here or on my blog – I am engaged at present in writing another book, about recovery from nervous breakdowns, and it is useful to hear other points of view on the subject.

An encounter from this week:

I saw a 24 year-old theater actress who was started on Lexapro nine months ago for a one-time “panic attack” and has gained sixty pounds since.  This is extremely distressing to her as her physical appearance and fitness is essential to her job.  She suspected the weight gain was being caused by the medicine, and so she went to her prescribing family doctor and he said that, no, it wasn’t from the Lexapro.  She couldn’t account for any other lifestyle changes that would cause such dramatic weight gain.  He checked her thyroid and said it was fine, and so he told her to exercise more and eat less.

At a subsequent visit, she asked him straight-up if she could stop the medicine, and he said no, because it was working so well to control her panic attacks that she should stay on it at least a year and maybe indefinitely.  He reassured her it was a very safe medicine and it was not causing her any side effects.  She tried to stop it on her own anyway, and after three days without it felt dizzy and then had a horrible panic attack.  This confirmed to her that he was right:  she had a disease and needed the drug.

Later, she told him she couldn’t concentrate anymore (unable to memorize lines), and he diagnosed her with ADD and started her on a stimulant.  In all of this, he never recommended any remedies for her mood or thought disturbances except drugs.  She lost a little of the weight after starting the stimulant and found she could concentrate better, but started having insomnia.  So he started her on Ambien.  It worked to help her sleep, but the daytime fogginess got worse, so he increased her to the maximum dose of the stimulant.  At this point, she became frustrated that he wasn’t really listening to her, sick of taking pills, but she didn’t know where else to turn.

A friend recommended that she try a new doctor, so she happened to come see me, not knowing anything about my take on mental health alternatives.  When she saw me, she was disheveled and tearful.  She now carried the diagnosis of three diseases (panic disorder, ADD, and insomnia), was taking three medications, had become suddenly obese, and most distressingly, was feeling mentally worse than ever.  She said she felt like her head was in a fog all the time.  Her panic attacks had returned along with chest pain, she couldn’t concentrate, she was moody and volatile, she couldn’t sleep at night, and the theater manager told her she had to figure out what was wrong soon or she would lose her job.  She didn’t know what was wrong with her, but felt like in a year her life had fallen completely apart.

After a long discussion and a medical evaluation, I told her that I was worried that all of her problems had been caused or worsened by the medications, and that we seriously needed to consider coming off of them.  We came up with a plan to taper over the next three months, one medicine at a time, supplementing with lifestyle changes, acupuncture and counseling.  We’ll hope for the best for her.

So the questions I ask are these:  why did her primary care doctor, who I assume had the best of intentions and did not intend to harm this young woman, jump to the conclusion that she needed drugs after she had one panic attack?  Why did he not question the need for the medicine once she started showing such known side effects?   Why did he continue diagnosing her with more diseases and adding more drugs?   Why is there no safety net to catch patients like this, who are being slowly drowned by the system, or to catch recklessly prescribing physicians?

I was fired from my employed position last year in part because I had started cautiously helping patients withdraw from drugs that seemed to be hurting them.  The hospital was concerned that my methods fell outside of the standard of care, could be harmful to patients, and thus did not represent the hospital’s interests well.  But do you think this patient’s original doctor will ever be questioned by any employer or licensing board for diagnosing and prescribing with such abandon?  No, he won’t be.  You would think it would be in the best interest of her insurance company to ask this question:  “How come this previously healthy, active young woman, in the course of nine months, now requires three medications at over $200/month, in addition to multiple office visits and blood testing?”

In short, why do we primary care doctors, who prescribe over 75% of psychiatric drugs in America, practice the way we do?

In my next letter, I’m going to offer an answer to this by offering examples of recent “Continuing Medical Education” activities that I have received, which are thinly disguised, unchallenged propaganda for the biomedical model, all coming from expert psychiatrists who have multiple ties to drug companies.

Best regards,

Mark

Editor’s note: These letters are selected from an exchange that Dr. Foster and Robert Whitaker have had since he read Anatomy of an Epidemic. They describe his interactions with his patients, and his changing thoughts about the prescribing of psychiatric medications. In all of these letters, the specific patient situations he describes are real, but all identifying characteristics have been altered or obscured, or permission has been sought, in order to protect patient privacy.

I am happy to be invited to blog here on Mad in America, and I hope to use this first post of mine to describe my personal answers to the above dilemma.  I will outline the life experience that led to me getting interested in mental health change, and then the various openings I have found to start creating such change as both an activist and as a mental health professional.  I am writing to join with others who have shared their stories, in the hopes that all of these stories will in turn inspire more people to do their own part to create the revolution that will bring real science, wisdom, and humanity into mental health care.

Early trouble: 

Like many people who later experience mental health difficulties, I had a lot of trauma in my childhood.  As do many traumatized children, I internalized much of the oppression, resulting in a defective identity and difficulty making social connections.

Personal Revolution:

I began my senior year in high school in 1972, the year the 60’s finally made it to my small town in Michigan.  Being a “freak” was suddenly a good thing, and people were experimenting with sharply different ways of seeing themselves, though this was mostly limited to taking drugs that opened their minds for no more than a few hours.  I quickly identified with this movement but saw reason to take it much further:  I saw it as a chance to be completely reborn or remade, to re-invent myself, and eventually to re-create the world as well.

From a psychiatric point of view, I was getting a bit “grandiose” or even “psychotic.”   I was not unaware of this, as I was studying psychology at the time, but I was also reading about alternative views of psychosis from people such as R. D. Laing who saw it as a possibly positive journey.  I was lucky enough to be able to discuss this with people such as my best friend at the time, a guy with his own “wild mind” with whom I worked at a nursing home that cared for many psychiatric patients, as well as with a thoughtful psychology professor at the first college I attended.  This professor informed me that he had been asked by the administration to watch out for young people who might be becoming psychotic, and that he was currently watching two people, with me being one of those; but he also said that he could see that I was currently getting by adequately and did not need an intervention.  Instead, we had long talks about the nature of reality, madness, and society, and I learned that I could make some sense out of my far out perspectives within such dialogue.

The sense that the journey could be positive kept me from developing an excess fear of madness.  Research suggests that such fear typically contributes to madness itself (Hirsch and Jolley (1989)).  One reason for that may be that the fear contributes to increased emotional arousal which in turn creates more “symptoms,” and this increase leads to more fear, etc., in an a vicious circle.  Another function of the fear of madness is to shut down curiosity and the willingness to explore divergent perspectives:  but while such curiosity may have a dangerous side when it leads a person into exploring “mad” ideas, it also is vital for preventing getting stuck in “madness,” as that same curiosity is required in order for a person to look critically at his or her “mad” thinking and eventually to transcend it.

I do recall at times having some intense fear of being truly seen as mad by others, and being dismissed as non-understandable, and denied the sorts of relationships that could affirm my newly emerging identity.  But I also feared being “normal,” not just because I sensed that “normal” culture was sick, but also because when I thought “normally” I felt defined by my past, and since my past was traumatic, that felt terrible.  Instead, I was fortunate enough to find people who could see me as “mad” in an interesting kind of way, and who had their own interest in challenging personal and cultural identity.

It was a time for many people to question the nature of reality, and I was fortunate enough to get involved with (and be tolerated by) groups such as the Institute for the Study of Consciousness founded by Arthur Young.  I learned it was possible to challenge the limits of everything we thought we knew, and at the same time think systematically.

Another group I got involved with was the San Francisco Suicide Club (the precursor group to the Cacophony Society, which in turn was the group that took Burning Man to Nevada, with my good friend John Law playing a key role in that.)  In the Suicide Club, we aimed at bizarre adventures, while needing to develop good communication and discipline in order to carry these off successfully.  That is, in order to share our creative madness with others, we had to learn how to successfully sharpen our “sanity” – for example we had to be able to deal with the technical challenges of dealing with exploring abandoned buildings, climbing bridges, etc., as well as the social challenges ranging from interactions with police to the dynamics within our own organization.

One of the events I led for the Suicide Club was a “mental health tour” of San Francisco.  The way the tour worked was that some of us played the part of mental health professionals, while others played the role of “patients” who were on tour.  Since the “patients” were already being “supervised” by “professionals” they could act as crazy as they wanted, without having to worry about being taken in by the mental health system, since they already were “patients” under control of “authorities.”  Good fun, but also a metaphor for the whole notion of exploring madness within a safe container, a concept that needs to be better understood within mental health treatment generally.

Family Mental Health Problems:

While I got through my “mad” exploration of identity and reality in a fairly successful way, without having any mental health treatment until I sought counseling in my 30’s to deal with unresolved trauma issues, many of my siblings did not fare as well.  Some were forcibly hospitalized, and while some managed recovery, not all did.  Yet, I could see that the basic outline of their journey was the same as mine – they were chaotically attempting to find a way of being in the world that made sense even given the traumas of their upbringing, and they were doing that without finding the supports that I was lucky enough to have found in my journey.  But as Eleanor Longden says, good mental health outcomes should not depend on one being lucky enough to find exceptional supports:  they should be what our system is designed to produce.

Becoming an Activist:

Moving away from San Francisco to help raise my child, I I eventually arrived in Eugene Oregon.   I met David Oaks in the 1980’s as he founded what became MindFreedom, which still has its home office in Eugene.  Though I was working at the time in fields totally outside mental health (first as a woods worker, then as the financial person for a worker owned construction company,) I slowly began speaking out against, and protesting against, the status quo in mental health care.  This took years to develop, as my interest waxed and waned, but I was gradually drawn into more activism.

What motivated me was the understanding that people similar to myself (including my own siblings) were being misinformed about what they were going through by a system that failed to understand the process, by a system that saw only bad in a process that I knew from my own personal experience could also be good.  The “treatments” that were then given were ones that suppressed the person along with the problem, and that didn’t open any doors to real healing, or even imagine that it was possible.

In the earlier days of my involvement, I would just attend events as a spectator or volunteer at mailing parties.  But then, I began participating in some protests, and also speaking to the public, and writing editorials for the local paper.

Currently, I work as a coordinator for our local chapter of MindFreedom.  We lobby for positive changes in mental health treatment locally, applying political pressure; for example, we organized to get a city council resolution supporting mental health empowerment.  We play a major role in creating progressive discussion in the community about mental health issues through the Opal Network, which brings together consumers, survivors, family members, professionals, and other interested parties, all around a mission of supporting the voices of consumers and survivors.  We have lectures, discussions, and also movie showings, to address important issues.  We also create protests, often using humor, to have fun and point toward needed changes – the Normathon, in which we all worshipped a giant pill, is only one example.

Becoming a mental health therapist:

I started doing volunteer work in the 1990s in mental health, and then began a graduate program in social work in 1997.  Social work school provided a reasonably good overview of how to help people with mental and emotional problems, that is, except for people whose problems happened to be severe.  Then, we were told, the problem was really biochemical, and we had to make sure they were given medication, and we learned nothing about how to apply our basic understanding of human beings to resolve their problems.  The professors either didn’t know how to, or didn’t dare, challenge the psychiatric orthodoxy about problems like “schizophrenia.”  I graduated in 2000, and immediately went to work as a mental health therapist working in an outpatient clinic with a mix of adults, children and families with a wide range of mental health issues.

While I spoke out some during my education, internship, and early employment, I mostly kept a low profile, so I did not threaten those who were educating me by appearing confrontational.  In retrospect, I think that was a good strategy, as it allowed me to focus on my own learning and to establish my credibility as a therapist.

A few years into my career, I was ready to take on something more challenging.  I had read about a new approach to hearing voices in the work of Paul Chadwick, who had researched groups for voice hearers run by professionals, using a CBT for psychosis perspective.  I emailed Paul and asked for particulars on his methodology, and he was kind enough to email me back with a complete guideline, which I then took to the manager of my agency and to the county mental health department, suggesting that I be allowed to organize a group.  At this time, I had no professional experience working with people who heard voices or who were diagnosed with such things as “schizophrenia” but I was lucky in that the manager of my agency, the late Martin Waechter, was a courageous guy who believed in supporting people in doing what they were passionate about, and the county was cooperative, so the group was formed.  I soon after learned about the Hearing Voices Network, and began incorporating their insights and methods into my groups as well.

I also began studying CBT for psychosis in earnest, reading lots of books and beginning to practice individual therapy with people struggling with psychotic experiences.  To avoid being alone in trying to make sense of this work, began making monthly contact with a consultant from the UK, Pauline Callcott, who was an expert in CBT for psychosis.  I found the fact that CBT for psychosis is well researched, or “evidence based,” was really helpful in explaining my work to other professionals, many of whom had been taught, erroneously, that psychotherapy with people diagnosed with “psychosis” or “schizophrenia” was generally ineffective.  I also found that CBT for psychosis as a method was highly compatible with the recovery movement in general, and some of the latest developments in CBT borrow very directly from that movement.

While I believe CBT is a great approach for “extreme states” such as those that get called psychosis, I am aware that it isn’t perfect.  Often CBT in general is taught in a somewhat narrow, dogmatic way, and some CBT practitioners see their role as being to reinforce traditional mental health approaches, including concepts of biological illness and “medications adherence” for life.  But the best CBT practitioners rise well above these defective approaches, and that is the part of the tradition that guides my practice.  I also see the heart of CBT, “balanced thinking” as being very compatible with the aim of the Open Dialogue treatment model.  Open Dialogue treatment has a remarkable success rate while being entirely non-dogmatic, as it aims simply to establish dialogue within a person’s social network.   I see this as essentially the same goal that CBT has in individual work of helping a person create a thoughtful dialogue within themselves, where different points of view can be explored.

Handling the Medication Issue:

One issue I had to confront in my work was how to handle the issue of medications.  As a non-medical professional, I was supposed to leave the medicating up to the medical people.  Or rather, what I was trained to do was to be very forthright in steering people toward medical treatment, as in “perhaps this is biochemical and you should go see a psychiatrist,” but I was never supposed to steer anyone away from medication, as that would allegedly be dangerous and outside the scope of my practice.  And yet, I knew people were being routinely lied to and made dependent on medications that in many cases were not helping or were making things worse.

While I can’t say I have developed the perfect approach to this dilemma, I have learned to take a role of supporting people to make their own thoughtful evaluations of the use or non-use of medications.  Instead of encouraging people to stay stable by staying on medications as the doctor prescribes, I suggest they can decide for themselves, but that they might be wise to make changes slowly and in conversation with various people including their prescriber.  By supporting a person’s own choices, I don’t take a medical role, but only the standard role of a therapist in helping a person to become aware of, and to choose from, a range of options.  This is tricky, as people’s ability to be thoughtful is frequently impaired by a number of factors, including their own mental health problems, the high volume of available misinformation, panic and pressure from people in the family, other professionals and people in their social network, as well as the brain numbing effects of many of the medications themselves.  But it is often possible to make substantial progress on this issue:  I have written more about this in my Guide to therapists in helping clients rely less on medications.

Changing the System through Education:

After a couple of years of organizing a voice hearers group and practicing CBT for psychosis, it was obvious I was bringing something really new to the community, and so a local managed care organization, LaneCare, agreed to sponsor a seminar for me to teach cognitive therapy for psychosis to other professionals.  This was a success, so I began doing more seminars, first just on cognitive therapy for psychosis, but then later adding a second day focusing on the (often denied) relationships between trauma and psychosis and how to help people who had experienced both.   I have sometimes been sponsored by professional groups, or by universities with continuing education programs, and I have sometimes organized such seminars myself.  I have now taught hundreds of professionals in a number of states, and I know at least some of these professionals are doing more progressive work as a result.

I am currently working with an organization, The International Society for the Psychological Treatments of the Schizophrenias and other Psychoses, US Chapter (ISPS-US), to organize web-based trainings on psychological approaches to psychosis that will be available to professionals everywhere, providing CEU’s, etc.  I am chairperson for their education committee, and we are hoping to have such trainings become available later this year.  I think the web approach will be particularly helpful for this topic, as people interested in learning alternative approaches are frequently very spread out geographically, and traditional organizations in many areas are often afraid to sponsor alternative approaches.  Those who want to be notified as these trainings become available can email me about their interest.  (The yearly ISPS conferences, and local area meetings, are another good way to learn about psychological and social approaches for psychosis.)

I also function as co-moderator for the listserv of ISPS-US.  This email discussion group covers a wide variety of topics related to the nature of psychosis, treatment, and recovery, and is a great place to get feedback on ideas or learn about new resources.

Handling Conflict:

Speaking out about the need for change can be risky in a mental health system that often reacts very defensively to criticism.  In some ways, working to change the mental health system’s beliefs and practices is very much like working to change the possibly unhelpful beliefs and practices of a person diagnosed with psychosis.  A direct assault on the beliefs of any human is likely to result in a defensive reaction that often leads to those beliefs becoming even more entrenched.  Yet going along with the beliefs as if they were true, or collusion, also strengthens those beliefs.  So what is a person to do?

In cognitive therapy, the aim is to identify the distress of the person to be helped, and then to engage in an open minded discussion that looks at all the evidence in order to better understand the distress and what can be done about it.  In this exploration, both the pros and cons of any belief can be explored, working with the middle ground between confrontation and collusion.  One comes across as uncertain, but curious, and persistently interested in exploring questions not resolved by prevailing dogmatic explanations.

To apply these methods to mental health system reform, it makes sense to first look at the areas in which the current mental health system is aware it has a problem, and then start looking to better understand those areas and to provide methods to improve outcomes.  Two problem areas even biologically oriented psychiatrists can acknowledge for example are how to help people with “symptoms” that aren’t helped by medications, and how to help people who refuse medications.  Once methods are introduced that can address such problems, one has credibility to ask other questions, such as how might we help people who currently are getting excess side effects as a result of medications, or whether we might improve outcomes if we do better at identifying people who may be able to recover without ever starting medications in the first place.

In working with people with beliefs that may be delusional, it is important to be humble and keep an open mind, exploring the evidence rather than just insisting that our own conclusions are correct:  often a detailed review finds that there is at least some grain of truth to the belief that sounded delusional, or the belief is a metaphorical expression of some truth even when it is not literally true.  I think it helps when we reformers keep the same sort of open mind and attention to the evidence when we engage in dialogue with those who defend extreme biological beliefs or the status quo.  Mental health questions are very complex, and often even those who are wrong about many things are right about some, and we all need to be learning as we go, even from our “opponents.”

It is not always clear how to find this midpoint between confrontation and collusion when dealing with the mental health system.  For one thing, it is very difficult to do so when speaking to a group, which may have very different people reacting in very different ways.  At one point, I was even “laid off” for no good reason from a part time job, after a new lead psychiatrist took offense to hearing my opinions which were expressed to a group of which he was a member.  In retrospect, I might have had more influence by speaking out more cautiously.  But while speaking out about problem areas in mental health care is risky, just colluding with defective care is not only risky but unethical.  We all need to keep experimenting to find ways to speak out which allows our message to get across.

Advocating for Change through Blogging:

I find psychosis to be a fascinating topic, which reaches into the core of what we understand about our own existence and the nature of reality.  Far from being a simple “illness,” mad experiences have within them the seeds of, both the best and the worst of what is possible for humanity.  While ideas about a possible positive side to psychosis have been criticized as being misleadingly “romantic,” there are now lots of scientific studies that are starting to explore what madness and successful creativity have in common.

Once we grasp that psychotic experiences are complex and multi-faceted, it becomes apparent that the mental health system should really be focused on helping people access the best of these experiences while leaving the worst behind, so that these individuals can eventually make their own unique contributions to the world instead of being labeled as permanently disabled and inferior.

I have been writing about these and other sorts of ideas for years now on my blog http://recoveryfromschizophrenia.org/ and I will now be contributing articles here at Mad in America as well.  I appreciate your interest, and I hope you find some of my perspectives helpful as you discover your own ways to work toward positive changes in mental health care.

In my last blog, I shared my experiences with the power of storytelling and its importance in the recovery process, my own and the hundreds of families that I have been privileged to meet over the years.

I invited readers to consider sharing their families’ recovery stories and to open to the possibility of the healing that is available when we connect with each other through this sharing. I am so thankful for those who reached out and did just that. I would like to share one of these stories with all of you.

I am grateful to the eloquent mother bear who took the time to touch my heart by sharing what was in hers. I am also grateful that she is willing to share her story here. I have changed the names below, but her story and her healing insights are real.

Dear Lisbeth,

Reflecting on the last five years, so many emotions have begun surfacing for me. I realize that I have placed myself in a sort of self-imposed isolation from the world since our trials with our Scott began. Fear of being judged or misunderstood by others has kept me there.

I have been stuck… merely getting through the days weeks and months. I have kept myself sealed in a “safe haven” that has thwarted my personal development and my ability to give back to others. In many ways, Scott’s illness has kept me in a kind of status-quo equilibrium.

At the same time, I have been enjoying the peace that has been afforded to us by Scott’s continuing recovery at CooperRiis for which I am so grateful. His recovery is mostly where I find my joy out of life.

But I am beginning to realize that I have kept myself from really living my life more fully and becoming the person I was meant to be. I want to do something that I can feel good about.

I am still very afraid to come out of this self-imposed shell, but I feel this opportunity to join with others through the Mother Bear Community Action Network is providential and has the potential to help me create some meaning out of the hell our family went through.

I am more than a little nervous but very excited about the possibility of helping other families by sharing our family’s recovery journey. I am grateful to be able to do so with the support of other mother bears like myself – those who have fought hard to find healing for our family members, often alone and seemingly against all odds.

As I write, the tears are flowing. I know I have so many built-up emotions that need to come out somehow. I know I have many stories that I still need to tell. And many stories I still need to hear.

I have begun reading the blogs on Mad in America. Your recent blog, A Mother Bear’s Story, resonated with me on so many levels. Your reassuring way of telling your story was so comforting and healing.

It made me realize that hearing from someone who has traveled the road to recovery before me, who has experienced similar challenges, helps me create a kind of road map that gives me reason to have hope.

I feel more equipped knowing what I can do today and where our family is headed. This road map, if you will, has taken some of the fear and worry out of my recovery journey. Knowing that our family is not alone in this journey gives me the confidence to believe we can overcome our obstacles together.

Thank you from the bottom of my heart,

Kelly, a newly minted mother bear

Mother Bear Community Action Network (Mother Bear CAN) is dedicated to uniting families to create a new mental health paradigm in which the whole person is supported, recovery is expected, hope is encouraged, the role of medication is carefully considered, the relationship between mental health and addiction is understood, and family and community are an important part of the healing process.

Mother Bear CAN is committed to empowering families through education about the many pathways to recovery, family-led community support, and access to recovery-oriented providers.

You can visit our growing network of mother bears (and father, sister, brother and other family bears) on Facebook at www.facebook.com/MotherBearCAN.

But in Healy’s blog, there was a reference to new data from the NIMH’s Treatment for Adolescents with Depression Study (TADS), and therein lies a much more important story.

In his blog, Healy published a table on suicidal events from the NIMH’s TADS study of antidepressants in youth, which had been prepared by a Swedish correspondent, Göran Högberg. That table put the suicidal risk associated with fluoxetine in a different light than had been presented in the published articles about the TADS study, and I thus asked Högberg where he had obtained this “updated data.” He pointed me to a 2009 article authored by Benedetto Vitiello, titled “Suicidal Events in the Treatment for Adolescents with Depression Study (TADS),” which was published in the Journal of Clinical Psychiatry. In particular, Högberg pointed me to a table titled “Timing of First Suicidal Event.”  And there, hidden in plain sight,  was the real suicide data from the TADS study.

The Background to the TADS Study

When the TADS results were first published, the practice of prescribing SSRIs to children was taking an evidence-based beating. First, in 2004 the FDA held a hearing on the increased risk of suicide with SSRIs in children, which led to a black box warning. In addition, the FDA’s Thomas Laughren reported at that meeting that these drugs—with the exception of fluoxetine—didn’t work in children either. Twelve of the 15 pediatric trials that had been conducted prior to that date had failed, as the SSRI had not bested placebo. The FDA, in fact, had rejected the application of six manufacturers seeking approval to sell their SSRIs to children.

Fluoxetine (Prozac) was the one SSRI that the FDA had approved for pediatric use. Two of the three positive studies reviewed by Laughren had come from trials of this drug. But as many critics pointed out, there was no reason to think that fluoxetine was any more effective in children than the other SSRIs. The percentage of children who responded to Prozac in the two positive trials was similar to the response rate in the twelve failed trials; Eli Lilly had simply been better at using biased trial designs to knock down the placebo response rate and thus make it appear that its drug worked. Indeed, Australian investigators who reviewed the trial data wrote in the British Medical Journal that the evidence for fluoxetine’s efficacy in children “is not convincing.” As such, they concluded, “recommending [any antidepressant] as a treatment option, let alone as first line treatment, would be inappropriate.”

The editors at Lancet came to a similar conclusion at that time: The truth, they wrote, was that SSRI antidepressants “were both ineffective and harmful in children.”

Such was the embattled status of SSRIs as a treatment for pediatric depression when the TADS investigators, in 2004, first announced their efficacy results. In the study, 439 youth, ages 12 to 17 years old, were randomized either to placebo, fluoxetine, cognitive behavior therapy (CBT), or a combination of CBT plus fluoxetine. At the end of 12 weeks, the response rate was highest for the combination group (71%), and lowest for the placebo group (35%). Although industry-funded trials hadn’t provided good evidence for the use of SSRIs in youth, this NIMH-funded study had done so, at least for fluoxetine.

At that time, several academic critics, including Jon Jureidini from Australia, noted that the two cognitive therapy groups in the TADS study were unblinded, and that in the only blinded comparison from the study, between fluoxetine and placebo, fluoxetine did not provide a statistically significant advantage over placebo on the primary endpoint, the children’s rating scale. As such, Jureidini concluded that the TADS studied showed “that fluoxetine, like all other antidepressants, is of doubtful clinical importance for children.” But this criticism was mostly ignored, and psychiatry now had its efficacy data for an SSRI in youth.

However, a safety problem did show up in the TADS study. There was an increased risk of suicidal events seen in the fluoxetine group compared to placebo, and the question of that risk hovered for a while over the trial, until it was basically dismissed in subsequent reports. However, with the publication of Vitiello’s 2009 report, and Göran Högberg’s alert reading of that study, we can see how the NIMH-funded investigators  finessed this risk, keeping its true scope hidden from the public.

The Suicide Data, Step by Step

The 12-Week Results: Then and Now

In 2006, Graham Emslie and the other TADS’ investigators published the 12-week “safety results” in the Journal of the American Academy of Child and Adolescent Psychiatry. They reported that in the 109 youth treated with fluoxetine, there were 10 suicidal events (9.2%), which was defined as either suicidal ideation or suicidal behavior/attempts. There were three such events in the 112 youth given a placebo (2.7%.) Two in the fluoxetine group attempted suicide, versus none in the placebo group.

Although this data clearly raised a concern, the investigators wrote that suicidal ideation rates had improved in all four groups during the trial, compared to baseline rates, and that nobody in the trial had actually committed suicide. Thus, the excess risk in the fluoxetine group was not seen as unduly alarming.

In Vitiello’s 2009 paper, we find slightly different data. In the 12-week study, there had actually been 12 suicidal events—rather than 10—in the 109 fluoxetine patients. There were three attempted suicides in the fluoxetine group, rather than two. Moreover, in the group of 112 placebo patients, there were 8 that were put on fluoxetine during the 12 weeks, and 2 of these 8 then suffered a suicidal event. But these 2 suicidal events in fluoxetine-treated patients were not included in Emslie’s 2006 report.

Thus, in Vitiello’s paper, we find this additional data: two more suicidal events among the 109 youth randomized to fluoxetine, one additional suicide attempt in the fluoxetine group, and two suicidal events among fluoxetine-treated patients in the placebo group.

The 36-Week Results: The Initial Report by the TADS Team

After the initial 12-week period, the study was unblinded (in the placebo and fluoxetine-only arms), and those in the placebo group who hadn’t done well were offered the choice of choosing one of the three active treatments—fluoxetine, CBT, or a combination of the two—during the 24-week followup.

In 2007, the “TADs Team” published the 36-week results for the three “active treatment” groups, but not for placebo, in the Archives of General Psychiatry.  They reported the following “suicidal events” at the end of 36 weeks:  16 of the 109 fluoxetine patients (14.7%) had such an event; 9 of 107 in the CBT-plus-fluoxetine group (8.4%); and 7 of 111 in the CBT-alone group (6.3%).

The researchers did not break down the suicidal events into their two components (suicidal ideation and suicidal attempts), and thus there is no data, in this article, on the number of youth in the study who attempted suicide. And while suicidal events were notably higher in the fluoxetine-only group, the researchers explained it away. They reasoned that CBT likely mitigated suicidal thoughts (as opposed to fluoxetine triggering such thoughts), and thus they concluded in the abstract, “adding CBT to medication enhances the safety of the medication.” (Emphasis added.)

Yet, once again, in Vitiello’s 2009 paper, we find additional suicidal data in the chart titled “Timing of First Suicidal Event,” and when it is included in the data analysis, we see that the risk of suicide, during the followup phase, was found only in fluoxetine-exposed patients.  There were no suicidal events in the CBT-alone group who didn’t take fluoxetine during this period. However,  some of the patients in the CBT-alone group were in fact exposed to fluoxetine during the 12-week-to-36-week period (we don’t know how many), and there  were two suicidal attempts in those fluoxetine-exposed patients.

Here is the bottom line: at the end of 36 weeks, of the 12 suicide attempts in the three groups, 11 were by youth taking fluoxetine.

The TADS Report on the 36-Week Results of the Placebo Group

In March of 2009, the TADS investigators, led by lead author Betsy Kennard, reported the 36-week safety data for all four groups in the American Journal of Psychiatry. As noted earlier, the 112 youth initially randomized to placebo were given the option, at the end of 12 weeks, to opt for one of the three active treatments.

The TADS reported that of the 112 youth assigned to the placebo/open group, 12 (10.7%) had a suicidal event between week 12 and week 36, compared with 32 of the 327 (9.8%) from the three active treatment groups. The researchers wrote that they had also compared suicidal events in the placebo/open group to those taking SSRIs, and the results were the same. There was no excess risk of suicide in those prescribed fluoxetine, compared to the placebo/open group.

In this article, it appeared that 15 of the 112 youth in the placebo/open group had a suicidal event during the 36 weeks (3 in the initial 12 weeks, and 12 in the 24-week followup). It was unclear how many of these events were suicidal ideation and how many involved suicide attempts, as this distinction was not reported. Then, in the discussion part of the paper, the researchers muddied things a bit more, writing that 15 of the 112 in the placebo/open group made “suicide attempts.”

Thus, the impression from this report was that there had been a fair number of suicidal events–and suicide attempts–in youth not exposed to fluoxetine. And having presented the 36-week safety data in this way, the TADS investigators drew this conclusion: Assignment to placebo during the initial treatment period “does not increase harm-related events, including suicidality.” Since placebo didn’t lead to increased suicidality, the use of placebo in research settings was “acceptable,” although “delaying the onset of meaningful treatment in non-research settings is not ethical or clinically appropriate.” Fluoxetine was safe, and in normal clinical care, pediatricians and psychiatrists should prescribe the drug as a first-line therapy (and ideally in combination with CBT.)

Now let’s return to the Vitiello paper and his table, which can tell us the real story about the placebo/open group, from start of the trial to the end of 36 weeks.

Here is the data:

Of the 112 youth randomized to placebo, 103 stayed on placebo during the initial 12 weeks, and three showed suicidal ideation during this period. There were eight in the placebo group who were put on fluoxetine during the initial 12 weeks, and two of these fluoxetine-taking youth developed suicidal ideation.

In the 12-week to 36-week followup, no youth in the placebo/open group who stayed off medication had a suicidal event. However, seven in the placebo/open group who went on fluoxetine suffered a suicidal event, including six who attempted suicide.

During the 36 weeks, no youth randomized into the placebo group attempted suicide while on placebo.

In Vitiello’s table of “first suicidal events,” there are 18 suicide attempts listed for all four groups. Of the 18, 17 occurred in youth on fluoxetine (94%). The one non-drug suicide attempt during the 36 weeks occurred in the CBT alone group, roughly at week five of the study.

In Vitiello’s table, there are 44 total suicidal events listed. Of the 44, 36 were in fluoxetine-treated patients (82%).

Here is a graphic that shows this data.

The Scandal

The TADS study has been used to justify the prescribing of Prozac—and really, by extension—other SSRIs to children and adolescents. The TADS researchers reported that the drug treatment was effective and didn’t increase the risk for suicidal events, as compared to placebo. Adding CBT to medication “enhances the safety of medication,” the TADS researchers wrote.

All the while, the real suicide data was being hidden. The TADS investigators weren’t disclosing the number of suicide attempts, and they weren’t reporting that all but one of the suicide attempts were in fluoxetine-treated youth. Instead, they made it appear that a similar number of suicidal events had been seen in the placebo group, and, at one point, even wrote that 15 in this group had attempted suicide.  The real suicide data didn’t appear until Vitiello’s 2009 article, and even then it had to be dug out from a table, which Göran Högberg did.

This, of course, is a hiding of data that puts the lives of children at risk. Maria Bradshaw is blogging on this site, and she has written how her son Toran committed suicide 15 days after being prescribed Prozac. Now imagine if the suicide data from the TADS study had been properly published.  Seventeen of the 18 suicide attempts in the study had been in youth on Prozac. Wouldn’t that have served as a warning signal to psychiatrists in New Zealand? Wouldn’t it have served as a warning signal to Maria Bradshaw? Wouldn’t it have served as a warning signal to her son, when he became agitated and aggressive?

And so we can ask: Would Toran be alive today if not for this scandal? And how many other youth have lost their lives in this way, unaware of the real suicide data in the TADS trial?

Overall the show was very good. However, for anyone who has read Kirsch’s work the idea that this is new information was a little surprising, as he first showed that there was a minimal difference between SSRIs and placebos approximately 14 years ago. The other slightly misleading part of the show was how they presented those who “disagreed” with him. At this point even within mainstream psychiatry this is virtually a non-existent debate, and it is now well acknowledged that the difference between placebo and antidepressant drug effect is minimal. If you listen closely to the scientists who 60 Minutes interviewed to get the other side even they didn’t really disagree with Kirsch’s main findings.

The current state of the SSRI debate amongst Prozac’s proponents is as follows: At one end of the spectrum, some, such as Michael Thase, a clinical trial researcher and medication proponent, say that for every ten people taking an antidepressant the drug helps one person. At the other end of the spectrum there are those who argue that it helps three people. Or put another way: Are SSRIs effective for 10% or 33% of the patients that receive them? See: http://www.psychiatrictimes.com/clinical-scales/display/article/10168/48136

Even the pharmaceutical companies acknowledge that the difference between drug and placebo is minimal. In 2001, an advertisement for Wellbutrin had a graph showing that the difference in efficacy between Wellbutrin and placebo is only 10%. This does not come from a critic, but was on wellbutrin.com in the early 2000′s.

If everyone agrees that the true drug effect is minimal then what is the disagreement about? The argument comes down to the significance of these low efficacy numbers. There are some, like Thase, who take the public health argument, which goes as follows: The medication helps one (or 2) out of every ten people which might not sound like much, but if you give the medication to ten million people then you are potentially helping a million people. This brings up the obvious point about potentially giving side-effects to the other nine million people. Or most problematically: Do patients understand their odds when they start taking these medications?

Some Background

In 1998, Kirsch compiled and analyzed data from numerous published studies that had compared anti-depressants to placebo. Kirsch’s meta-analysis found that the standard medications were only slightly better than placebo, and the difference was virtually insignificant. Not surprisingly the critics were harsh as Kirsch’s study called into question the entire rational and justification for the millions of anti-depressant prescriptions written every year. They claimed that Kirsch’s study was biased because of the studies he included in his analysis. So, in a stroke of genius, Kirsch, Scoboria, and Moore used the Freedom of Information of Act to gain access to all the studies that the drug companies had submitted to the FDA for the purpose of getting these drugs approved. They re-ran their analysis with the new data and again found that the placebo response was responsible for the majority of the effect. In the case of Prozac, the placebo response duplicated 89% of the drug response. Keep in mind that this was done with the companies own studies, so it is hard to find a more favorable database for the medications.

Where it got interesting was with the critics. The same issue of Prevention and Treatment that published Kirsch’s analysis of the pharmaceutical company data also published several commentaries-both pro and con. Kirsch’s critics did not argue with his main findings, instead they quibbled about the interpretation of the results. In their reply, Kirsch and his colleagues bluntly stated: “We are very heartened by the thoughtful responses to our article. Unlike some of the responses to a previous meta-analysis of antidepressant drug effects, there is now unanimous agreement among commentators that the mean difference between response to antidepressant drugs and response to inert placebo is very small.” One of the essays by a clinical trial researcher went on to explain that this miniscule difference between placebo and medication is commonly referred to by researchers, FDA reviewers, and a small group of critics as the “dirty little secret.”

In 2002, an interesting study in JAMA examined the effect of St. John’s Wort on depression and also seemed to confirm Kirsch’s results (2002, Vol. 287, p. 1807). The authors found that on most measures St. John’s Wort was no better than a placebo. This was blared out over the radio waves, prominently reported in the papers, and told to all Americans on the nightly news. Yet most of the early press accounts missed the more significant part of the story which was that there were three treatment groups in this study. Zoloft, one of the most common antidepressants, was also included in this study, and Zoloft was no better than placebo either.

It will be interesting to see how patients respond to these latest revelations on 60 Minutes. The facts have been around for a long time and are easily accessible on the Internet. But is this information passed along to patients when they are prescribed antidepressants?

My Voice, the Voice of Me

Becoming me, becoming Olga was a journey, a hard journey but also a journey of joy and ending in love. Journeys are strange things, you think you are going in one direction but suddenly you are on a different road in a different country, people say strange things to you which are difficult or maybe even impossible to understand.

On this journey to becoming whole, I passed through a land which was so well known yet being on the other side it became alien. The language I used to speak in this country ceased to exist, I understood their empty words but my words were seen as insanity. I was a schizophrenic they said “please remember that, oh, and while you are at it, remember to stop thinking there is a cure, you are a chronic, a chronic schizophrenic, a biological defect with an incurable disease.” I too, when I had been on the other, other side, studied the books and learned the biology, been told and believed that this was a chronic disease. But now it was me and I couldn’t believe it.

In the beginning I told them my troubles but nobody listened just writing it down. Why they wrote it I don’t know, it was not relevant and played no role. What was important was teaching me my place in the biological scheme of a medical model. Chemistry of the brain was out of sorts due to genetics and so chemicals to fix my defect was the order of the day. Orap, Cisordinol, Risperdal, Leponex were but a few of the ones that I tried on this 10 year journey. I grew big and fat, apathetic and stiff, and as for my brain, well it ceased to connect, disjointed and trapped it filled with wool creating a distance between me and my life. “It will help with your voices which are just a symptom of this serious illness, they are not real don’t you believe it” they said again and again. My feelings were blunted, my emotions were grey, the colour was gone and all I had left was emptiness, endless meaningless emptiness which filled me with despair. That I could feel. Time stretched out, slowed or probably it was, in reality, me, who ground slowly to a halt. I would sit in a chair and think “what should I do today?” and suddenly today was dark, gone, night had arrived. Another meaningless, purposeless day had passed, thank God for the pills, at least I had slept most of that day away… again.

I kept asking them -are you sure there isn’t a mistake surely it’s not possible my life will be like this for the rest of time, my time? I stopped asking when it no longer was I who heard the words of hopelessness. I drove them insane ha! ha! by asking and asking, surely there were exceptions to this horrible rule. But no, neither they, nor I had ever heard of recovery, that many before me had recovered and that yes it was possible! The silence on recovery in the system was deathly and filled the wards and corridors with hopelessness, not just for me but for us all, staff and “schizophrenics” alike. And then the hopelessness spread, after a year or was it two -my family was informed all of us together. I had asked again surely, surely this is not true and now it became imperative that reality was upheld. I had to accept once and for all that this was my life and that I must acknowledge. What better way then, than before witnesses, the witnesses of my past.  “Olga is seriously ill and will never recover” they said, “she is too fragile and requires help the rest of her days; she will never work and must of course take medication the rest of her life”. I wanted the ground to open and swallow me alive but instead my voice joined the deathly silence of the system never again to ask, surely, surely this cannot true. The voices of me though, were not quieted they did not go, ever, no matter what little round or long red or green pill I took to silence them, or was it me?

The staff were sweet and kind and they did their best they just didn’t know better and neither did I, I did after all once belong to the other, other side so I know. Diagnosis and prognosis ruled the day so meaning and understanding got lost on the way. They are the experts, they’ve been approved, they must perform and chose genetics as here they can rationalize justify why they cannot possibly, possibly be one of us. The insidious fear that’s lurking that maybe, perhaps they are not so different after all, is “experted” or is it exported away but certainly not faced.

So how did I recover? By looking death in the eye.  In my preparations to meet death, I wrote a lie, a lie that shone out of the paper and seared my eyes and I knew, even though I did not believe this strange four-worded sentence, I could not leave this earthly world on a lie. I wrote “I have tried everything” – but I hadn’t. I had not done it my way so busy was I listening to others, so called experts, experts who in reality are as much in the dark about suffering of the mind as the suffers themselves. So I prepared a plan, a concrete plan which in the beginning could be followed step by step and where belief in the plan was an irrelevant companion.

I was conventional or so I thought, though apparently in reality not really. I chose therapy with a therapist I had known from before, the difference this time was I had nothing to lose so no holds were barred and all could be told. “But therapy is not good for a schizophrenic like you” they said “it would unearth too much and make you more ill, settle down, make a scarf instead, that will help”.
I chose therapy anyway.

My therapist could see a difference in me, that I was serious and it filled her with hope, my hope, hope that began to move back into me giving me strength and light, but most important it was the start of my journey back to the living.

Medication, now that was a tricky one. For years I was told, and I truly believed, that I would feel so much worse if I stopped my little white pill or was it red, there were so many they confused my head. But now with death staring me in my face, who cared, it would just give more reason to die if I felt more pain. So they said “no do not stop” but I did it anyway- in secret – and little by little the wool receded, my head became clearer my feelings returned. I felt the pain, the anguish of my new understanding but I also felt joy and a zest for life, they had lied I didn’t feel worse I felt alive. The colour returned and here too my journey began.

I had grown fat with these pills of mine; I’d never been that, so a diet was in order in this new found cure. I started with weightwatchers, just had to mind my points it was irrelevant on what and that I could follow. I followed my points and the weight got lost, I began to move, my energy was back and then one day I had to shop. My clothes were too big and I needed new but now, suddenly, I could shop in a regular store for regular people with regular sizes. That put a smile on my face because now I could dress for this journey of mine.

I had had a dream, once. I was going to be the studier of stars the first woman in space and that required exams not permissible at this school of mine. That is until physics was suddenly allowed- private tuition no less by a teacher who said that he could see something special in this young child… only physics became physic-al and the dream died.

However with this new found plan I wanted to learn, stimulate my mind so I could at least go out with a (big) bang. So the dream was revived a course was found to study the stars, the planets and the start of existence and to my surprise I found my reason, a purpose for being. I found there’s more to life than death, that there is something bigger, greater and more meaningful and that life is no accident! So amazed was I at the grandness of the cosmic universe that I felt a transformation occur within myself and with that transformation my true journey began. My voice from my childhood returned and God came back, only now he is not God, at least not in name. He is the good one, the good voice and with his return everything changed, the balance of power, the balance of control. With him I began the journey of union, uniting the fragments joining each piece of me, to me, to finally become whole, become me, become Olga.

I got to see that entirely different course of action could light up an infinately greater runway for a child and their family instead of taking a course of actions that so often endangers a child with unforeseen side-effects, perhaps the worst of which is the meta message to the child that something is drastically wrong with them in regard to their life force because neither they or their parents or teachers can handle it – we need to make their intensity go away.

If we really saw life force/ intensity as a blessing that could be transformed into greatness we would never ever dream of doing that. Life force is precious. It is common to us all and some simply have the gift of having more than others. Without it we’d be lost. Without it we might not even be able to get out of bed. Without it we wouldn’t be able to live our dreams or live or fulfill our passionate lives. We need our future generations of children to have their intensity intact so that can do the great things we need them to do. We can’t afford for future generations to be lost with their intensity suppressed.

Besides, at most medications simply give the illussion of improvement. In a way “improvement” pale in comparison to what I found to be consistently obtainable “transformation.” Before the meds kick in and after they wear off the problems are still there – nothing has changed and there has been zero healing. Isn’t healing what we want. Don’t parents and teachers deep down simply want all along to see this child use their intensity in great ways. With medications the parent is none the wiser on how to best help this child nor is the child any the wiser on how to best help themselves. There must be a better way and there is.

The reason I can say this is that by grace I stumbled upon devising a method of helping these children that I came to eventually call The Nurtured heat Approach and that is what I will write about mostly in this blog. I will do my best to tell you how the approach came to be and what kinds of impacts it is having, as well as giving you some sense of what it is and how it works. As this is my first blog I will save most of it for subsequent notes but for now I want to say that what I found through this work has given me great hope and that is what I want to inspire in you.

I don’t want to waste my time fighting the pharmaceutical companies. Other people have that talent and I applaud that. I simply want to show over and over again that with the right kind of approach these very same children of concern can easily be “transformed” to be the best children on the planet.

I’ll give you one example for now – Tolson Elementary in Tucson, Arizona – has been using this approach now for over 10 years and in since that time, as a school with well over 80% free and reduced lunch and other demograpgics that go with an at-risk population, they went from a school with the highest rates of suspensions, bullying, teacher attrition, use of diagnosis and medications in their large school district – a school designated as failing and with a high rate of special education – to a school that is designated as excelling – going from over 15% special education to less than 2%, to almost zero bullying, suspesions, teacher attrition, with zero use of diagnosis and medications and more.

They did this because they began changing drastically the way they relate to children. This is what I will describe as these blog posts unfold and evolve.

I certainly believe in symptoms. I believe there are kids loaded with symptoms that frustrate, annoy and drive parents and teachers to distraction. However I also believe that the energy that drives these very same symptoms can be rerouted to greatness. Greatness can be awakened in the most difficult children with methods that are geared to how these children respond to relationship and energy. Then we don’t have to hope that they will find a “way” to channel their energies to activities like scouting or dance, baseball or soccor or any other activity. Not that these are bad. It’s just that there’s a better solution – where the child awakens to who they really are as a great person and as that assimilates and integrate then we will have a child who acts-out in an entirely different way – they act-out in greatness and manifest that wherever they go.

So I hope I have caught your interest and I will be back with more when the time is right.

Nowadays we’re seeing more of a top-down thing as governments are realising the cost of maintaining the biomedical model.  And the voices of survivors and people with lived experience are apparently held in higher regard although not always thought to be worth their weight in gold by the powers that be.

I’m a relatively new kid on the block in mental health activism terms although have cut my wisdom teeth on a lifetime of community development backed up by postgraduate training based on Freire’s pedagogy – “Washing one’s hands of the conflict between the powerful and the powerless means to side with the powerful, not to be neutral.”.  For most of that time I didn’t have an understanding of the political nature of my work in the community and would have said that I wasn’t at all political.  It was all about getting together with others and improving community services.  Being a natural leader I tended to be the one chairing meetings, pushing forward the ideas with an eye on the horizon.  Running ahead and taking folk with me or sometimes going on alone.  As long as I wasn’t being held back for this has always been my challenge.

I see the psychiatric system as being about maintenance as it’s working on the premise of a biological cause, a genetic vulnerability and the likelihood of recurrence or relapse.  Sort of like a machine that has a tendency to break down when X, Y and Z are present so requires regular maintenance.  If you have one episode it’s not too bad for then you might escape without a diagnosis.  In my experience the problem is when you have another episode and even another for then you are given the mentally ill label.  Which you might welcome and that is OK.  But not for me.  I want to be free to take the risk of running ahead and out of the system.

Because the mad experience is shared by most of us in my family doesn’t mean we all see it the same way.  Some have been glad of the system’s support and the help available along the way.  The diagnoses and drugs seen as part and parcel of staying relatively well.  Others of us have managed to walk or run out of the system with no recurring episodes or in spite of these.

I’ve always thought that a full recovery was preferable to maintenance so have chosen that path when able to, helped along the way by mental health services.  But I have to admit to feeling uncomfortable these days with the recovery movement from the top-down perspective rather than the grassroots one of emancipation and empowerment.  In Scotland and the UK people on benefits (government financial support) are being pressured to justify their disability or mental illness through ATOS and ESA (back to work) interviews.  Failure to attend or answer the questions can result in cuts to benefits.

The Hardest Hit campaign, organised jointly by the Disability Benefits Consortium (DBC) and the UK Disabled People’s Council, has been bringing together individuals and organisations to send a clear message to the Government to stop these cuts.   Inclusion Scotland aims to draw attention to the physical, social, economic, cultural and attitudinal barriers that affect the everyday lives of disabled people in Scotland.

Sometimes recovery from mental health problems will involve a level of maintenance by the psychiatric system and financial support from the government.  I want the right to choose my path through and out of the system and for others also to have the same rights and choices.  Therefore I contend that recovery and maintenance are not always on different sides of the fence.

The presenter explained that historically, counseling centers viewed most of the students presenting for services as experiencing adjustment problems in transitioning to adult roles.  Assuming adult responsibilities, moving away from home, pressures to achieve high grades in a competitive atmosphere were viewed as adjustments that understandably could create some temporary angst.  In contrast to the previous perspective, now more counseling centers are run by psychiatrists trained in identifying major mental disorders.

What the presenter failed to address is whether the shift in orientation has resulted in better outcomes.  More young people are being labeled and medicated; that’s a fact.  According to the presenter, prescriptions for antidepressants exceed prescriptions for antibiotics at the presenter’s university.  Since the presenter did not even address the issue of whether the change in orientation represents a good thing, I decided to do some investigating.

Suicide prevalence seemed an obvious index that might offer a barometer for assessing whether the shift in thinking is associated with better outcomes.  The CDC report informs us that suicide rates have tripled since 1950s for all persons 15 to 24 years of age.  The American Association of Suicidology reports that suicide rates for this age group remained stably high between the late 1970s and mid-1990s, but have declined by 28.5% since 1994, while still exceeding rates in earlier periods.  In contrast to rates of suicide for young people generally, suicide rates on college campuses have declined since 1960 which is accounted for by more females (who have far lower suicide rates than males) being included in later samples (Schwartz, 2006).  Others have specifically examined how antidepressant treatment availability relates to rates of suicide.  Kessler et al. (2005) contrasted rates of suicidal behavior for all ages during 1990-1992 with 2001-2003 and rates of psychiatric treatment in the two epochs.  Kessler et al. concluded, “Despite a dramatic increase in treatment, no significant decrease occurred in suicidal thoughts, plans, gestures, or attempts in the United States during the 1990s.”   Thus, there is little evidence that the dramatic shift in orientation from a developmental perspective to a pathology orientation has improved outcomes.

During the presentation, conspicuous by its absence was the lack of discussion of the black box warning from the FDA.   The FDA advisory states “Antidepressants increased the risk compared to placebo of suicidal thinking and behavior (suicidality) in children, adolescents, and young adults in short-term studies of major depressive disorder (MDD) and other psychiatric disorders.”  The finding of more thoughts about suicide in antidepressant treated compared to placebo treated was replicated in the “Treatment of Adolescents with Depression Study”, a large multisite study examining antidepressant efficacy in youth.  During the presentation there was no discussion of whether the counseling center takes any extra precautions in monitoring the students who are placed on antidepressants.  Given, that Grand Rounds are part of the training for new psychiatrists, the topic of how to discuss these issues with patients and how to properly monitor might have been appropriate.

In some states, there are informed consent laws.  Doctors are required to discuss both the benefits and potential harm of recommended treatments.  Many people remain on antidepressants for over two years.  The problem for a young person opting to take antidepressants is getting off of them.  Possible withdrawal symptoms include mania, motor problems in the jaw, depression and anxiety, and nausea (Ceccherini-Nelli et al. ,1993; Haddad, 1997; Lejoyeux & Adés, 1997; Stoukides & Stoukides, 1991).  For young people beginning careers, opting to take an antidepressant during college means that they may need time off from work later to detox from prescription drugs.  The imperative of discontinuing antidepressants is high for women.  For young women, continuing on antidepressants during pregnancy carries severe consequences.  Antidepressants are associated with increased risk of autism in the baby (Croen, Grether, Yoshida, Odouli, & Hendrick, 2011).  Antidepressants consumed during gestation are associated with heart malformations in the baby and problems in establishing proper lung function after birth (Chambers et al., 2006; Gentile, 2011; Udechuku, Nguyen, Hill, & Szego, 2010).  During the presentation, there was no indication that a cost-benefit analysis is routinely addressed prior to providing prescriptions.

Later in the week, I attended the graduate Biology seminar at another university.  The presenter discussed the efficacy of curcumin (found in turmeric) in preventing breast cancers and other cancers.  She presented her data, which were pretty convincing.  I asked the presenter about curcumin as an antidepressant, which I knew had been shown to be effective in animal work, and she told me that curcumin is being tested in clinical trials as an antidepressant.  As I sat there, I wondered why student counseling centers are not recommending interventions with fewer side effects.  There is a literature on omega-3s preventing and ameliorating depression and anxiety.  Recently, Glaser and Kiecolt-Glaser published a study showing that omega-3s are effective in reducing anxiety in medical students during examinations.  There is a literature on the antidepressant effects of exercise.  Are psychiatrists totally ignorant of these other interventions which have been proven to impact biological causes of behavioral depression?   To their credit, counseling centers do still offer counseling along with drugs.  However, there was little indication that psychiatrists give time for the psychotherapy to work prior to providing medications.  What could be the rationale for prescribing medications with black box warnings and severe withdrawal symptoms when efficacious and less harmful treatments are available?  Of course, there was also no mention of Irving Kirsch’s work on the lack of efficacy of antidepressants, anyway.  I guess the psychiatrists will have to watch Leslie Stahl’s “60 Minutes” broadcast this Sunday to learn about this.

Chambers, C. D., Hernandez-Diaz, S., Van Marter, L.J., Werier, M. M., Louik, C., Jones, K.L., Mitchell, A. A. (2006).  Selective serotonin-reuptake inhibitors and risk of persistent pulmonary hypertension of the newborn.  New England Journal of Medicine, 354(6), 579-587.

Croen, L. A., Grether, J.K., Yoshida, C. K., Odouli, R., & Hendrick, V.  (2011).  Antidepressant use during pregnancy and childhood autism spectrum disorders.  Archives of General Psychiatry, 68 (11), 1104-1112.

Kessler, R. C., Berglund, P., Borges, G., Nock, M., Wang, P. S.  (2005).  Trends in suicide ideation, plans, gestures, and attempts in the United States, 1990-1992 to 2001-2003.  JAMA, 283, 20, 2487-2495.

Kiecolt-Glaser, J.K., Belury, M. A., Andridge, R., Malarkey, W.B., & Glaser, R.  (2011).  Omega-3 supplementation lowers inflammation and anxiety in medical students:  A randomized controlled trial.  Brain, Behavior, and Immunity, 25 (8), 1725-1734.

Schwartz, A.J.  (2006).  Four eras of study of college student suicide in the United States:  1920-2004.  Journal of the American College Health, 54 (6), 353-366.

Schwartz, A. J.  (2006).  College student suicide in the United States:  1990-1991 through 2003-2004.  Journal of the American College Health, 54 (6), 341-352.

TADS (2007).  The Treatment for Adolescents with Depression Study.  Archives of General Psychiatry, 64(10), 1132-1144.

In the weeks after Toran’s death I made three medically serious suicide attempts. Given that I had been prescribed five psychoactive drugs to ‘treat’ my grief, that’s hardly surprising. And then something happened that gave me no choice but to put my plans for my own death on hold – mental health services began to target my son’s girlfriend. She was called repeatedly and urged to seek help and a prescription for Prozac to assist her with her grief. Her parents and school counsellor were contacted and urged to get her on to medication.

At that time my world was as uncertain a place as it is possible to imagine. There was no doubt in my mind however that my son would want me to do everything I could to ensure that she did not take the drug that had killed him. I began to put together the information I believed she needed to make a fully informed decision on taking the drug including information on how grief, along with most of our moods and behaviours following trauma and distress, is what makes us human, not what makes us mad.

In New Zealand there is no Black Box warning on antidepressants. The packets contain no information leaflet outlining risks and possible adverse effects. Despite being one of only two countries in the world that allows these drugs to be advertised on TV, doctors do not warn their patients of the risks of suicide, homicide, mania, psychosis and all the other potential adverse reactions known to be associated with them.

In 2010 1.3million antidepressants were prescribed to 485,000 New Zealanders. There was a 140% increase in prescribing to babies and children aged 0-4 years. These figures do not include hospital based prescriptions or prescriptions for the unsubsidised drugs that appear on our television in advertisements that exhort consumers to ask their doctor for the drug by name.

Some time later, having teamed up with another mum who had lost her child to suicide, this desire to share with others the knowledge that underpins fully informed consent and which is rarely provided to consumers, became the basis for a non-profit organisation. In August 2010 we launched CASPER, Community Action on Suicide Prevention Education & Research.

CASPER’s mission involved three key streams of work:

1.  Reclaiming suicide prevention from psychiatrists and providing information and support to families and communities who rightfully and most effectively lead this work.

2. Educating politicians and opinion leaders on the efficacy of a social rather than mental health approach to suicide prevention.

3.  Providing support for families through inquests and other inquiries into the deaths of their loved ones to ensure that truth, accountability and change are achieved.

In the past 18 months, CASPER has travelled New Zealand delivering free information presentations to communities around the country. Giving families and communities the information we didn’t have before our children died and that we believe could have saved their lives. We have met with the Prime Minister, his Chief Science Adviser, the Commissioner for Children, the Families Commission and numerous politicians. We have achieved our goal of being a go-to agency for the media for any stories associated with suicide. We have brought two international researchers to New Zealand to discuss the links between psychoactive drugs and suicide.

Along the way we have collected three skilled and dedicated colleagues, over 2200 families bereaved by suicide and supporters and joined with other families bereaved by suicide across Canada, the US and the UK.

We have published the CASPER Suicide Prevention Strategy a document that sets out the literature underpinning a sociological approach to suicide prevention, secured a million dollar sponsorship deal and most importantly given our beloved children a legacy that saves the lives of others.

That’s how we keep taking the next breath, putting one foot in front of the other and finding some sort of purpose in continuing to live. You can check out our work at www.casper.org.nz and on our facebook page at www.facebook.com/Caspercommunity

Becky Murphy
February 15, 2012

The recent reports by ABC News and the Senate Hearing on December 1, 2011, which was presided over by Senator Tom Carper, are the latest of many investigations and hearings into psychiatric drugs being used on foster children.  But the fact is that the indiscriminate use of psychotropic drugs prescribed off-label is widespread, and not limited to children in foster care. Children who live with their parents often have the same safety and protection issues as children in foster care and experience equally harmful effects from the drugs.

When children are harmed instead of helped with psychiatric drugs it is always tragic. When the child lives with his or her parents, the parents can’t understand why the help—the medication—is not helping, but hurting.

My son was diagnosed with temporal lobe epilepsy the month he turned seven years old. It is a neurological condition known to be caused by a brain injury, and can cause the same symptoms as schizophrenia.  When he was diagnosed with temporal lobe epilepsy, he also had been getting mental health treatment services for over three years and had a diagnosis of PTSD. He had this diagnosis because he had been the victim of violent assault when he was three years old and in foster care.

My children were in foster care due to my own failure to deal with the effects of my own traumatic childhood.   I placed my sons in foster care, when I became unable to care for them.   My youngest son was placed in a home that had twelve reports filed with Child Protective Services.  After he was victimized, I believe that the State of Washington attempted to cover it up, with little regard for how this would cause my son further harm. I was not informed of the trauma my son had experienced.

I brought my son home with a recommendation that intensive in-home services were needed.  For years this recommendation was never followed, and my son continued to struggle without the help he needed.   He got med management from the public mental health system.   

The drugs prescribed included neuroleptics that have been prescribed to children off-label for decades. My son was first given Risperdal when he was seven years old in 1995 to “treat” his aggression.  The betrayal of trust I felt when I learned about what this class of drug does to the human body is overwhelming.  I am outraged to know that none of the things that I should have been told before giving consent were told to me by the psychiatrist who prescribed them.

The claim that my son’s condition psychiatric diagnosis was caused by a genetic or an inherited biological defect is not supported by any available scientific evidence. Psychiatrists have been claiming that they are “medically treating” unidentified diseases without ever discovering a biological dysfunction or disease process that causes a single one of the psychiatric diagnoses.

My youngest son is one of the many children who have been seriously harmed by the bio-medical paradigm of psychiatric care that permeates the public mental health system.  I am his mother and I am painfully aware that I was misled by professionals about my son from the beginning.  The services were never based on my son’s actual needs; and they were never “family directed/child centered” as Medicaid Guidelines required.  We were given ‘help” which hurt, and were always based on the system’s needs, never on my son’s needs.  The fact that the services were not therapeutic and were in fact detrimental was never a concern.  The only concerns were the fact that the services were expensive and that my son did not improve.  The lack of improvement was his and my fault.

After five years of such treatment, which involved repeated hospitalizations and discharges recommending the same intensive services which were then never provided, the state Division of Children and Family Services claimed that my son must become a ward of the State in order to have his mental health services covered.  He, in fact, was already on Medicaid and he did not need to become a ward of the state in order to continue to be eligible. I believe the reason for this action on the State’s part was motivated by the fact that a larger percentage of my son’s care would be paid by the federal government once he was a ward of the state.

It was during this period of time that my son sustained serious injuries from the massive amounts of drugs prescribed to him, over my vehement protests. He has suffered from akathesia and tardive dyskinesia since he was 13 years old.

I have learned much about “the system,” “the drugs” and “psychiatry” from our experiences.  I have learned, much to my horror, that the same drugs that disabled my son are now being given to countless thousands of children.  I have learned that parents are still not being given accurate, unbiased information to make an informed decision and so in reality, cannot provide informed consent for treatment using psychiatric drugs.

As such, parents are being deprived their Constitutional Rights, which is their right to perform a basic moral duty for their own children.   It is a parental right to protect one’s children from grievous harm due to any cause.  Not informing parents of the well-known risks of taking neuroleptics and other psychiatric drugs prevents them from even knowing that the drugs can cause serious iatrogenic, or “physician caused,” injuries that can be disabling and even fatal.  This deprivation of their parental rights is occurring as a matter of course.

Significantly, these parents and their children are being deprived of their Human Rights to Informed Consent in compliance with the Nuremberg Code, which according to U.S. law and international Law, is the minimum standard to be met when human subjects are involved in medical research.   I state this because off-label prescribing of psychiatric drugs to children is experimental, as it is done in the absence of valid scientific supporting evidence.

I have yet to meet a parent of a child prescribed a neuroleptic or other psychiatric drugs who was given accurate information about the risks. I have met many parents who voiced concerns about their child’s deteriorating healthy once they were put on neuroleptics, but who were totally unaware that the drugs could be causing these problems. In one case, the child became obese, diabetic, had high cholesterol, suffered heart damage and became aggressive. All are well-known adverse effects of neuroleptics. But neither the 14-year-old nor his mother was told that these problems might be caused by the drug.

My research over the last dozen years has been driven by my desperate desire to find out how to effectively help my traumatized son, and my advocacy is driven by an overwhelming sense of duty to share what I have learned, and hopefully prevent another child and family from similar experiences.  No parent should be lied to or misled by mental health professionals.

A psychiatrist told me last year that any parent who objects to giving psychiatric drugs to their child would, at best, be perceived as ill-informed, and at worst, as being impaired themselves.  Implicit in this statement is a belief that no one has a right to NOT consent to psychiatric drugs being given to their children.

It is heartbreaking as a mother to know that the treatment my son received caused further trauma and disability.  It was traumatizing for his older brother and myself as well.  I know my eldest son has a burden that is not his, and so do I.  The fact that Isaac was so harmed and so traumatized—he is now disabled—leaves us feeling guilty for not being able to stop it.

I have no small amount of sorrow that the reason my son experienced what he did was the result of my own problems, which caused me to place my children in foster care in the first place.  Not a day has gone by that I don’t remember that it was my own failure as a mother that led to my son being placed in the care of someone who victimized him. It is more than a little unfortunate that my deficits which caused me to place him in foster care were the lens through which his ongoing need for treatment were viewed.   

There are times I am haunted by memories. I can remember when my eight-year-old child suddenly claimed that his eyes didn’t work, and that I was the only one who believed him. Imagine finding out a decade later that one of the known effects of neuroleptics is on eye function, and how even adults complain that the drugs make it difficult to read. My son was in third grade and could read only with extreme difficulty, and no one but his mother believed him that there was a problem with his eyes. My son was then given another diagnostic label, as his psychiatrist determined that his refusal to read and do schoolwork was because he had Oppositional Defiant Disorder.  His behaviors were then seen as further evidence of his having a genetic or biological defect in need of a psychiatric label and a psychiatric drug.  This is only one of many painful experiences that I cannot remember without crying.

I cannot change the past, and the only way I think that I will have any peace is if I share what happened, and share what I’ve learned.  My hope is someone else will be helped instead of hurt.

Some of what I have learned in my research:

Schizophrenia is a diagnosis of exclusion; which means conditions that are known to cause the very same symptoms, must not be present, or else they cannot be excluded. Temporal lobe epilepsy is thought to be caused by brain trauma.  My son was brutally assaulted in foster care.  This is acknowledged in my son’s medical record in his first hospitalization, and it was at that time that Temporal Lobe Epilepsy was diagnosed by EEG. His medical record notes that Child Protective Services were notified.

When a doctor diagnosed my son with schizophrenia, I asked him whether it was necessary to rule out the neurological condition he was diagnosed with, perhaps by performing another EEG. The psychiatrist said that it was not necessary.  I later discovered that temporal lobe epilepsy was apparently ruled out by removing the diagnosis from my son’s medical record.  

 My son was prescribed Ativan/lorazepam to “control impulses,” which is not an approved use of this drug to this day.  Lorazepam is a benzodiazepine that is highly addictive, and according to the manufacturer, is meant for short-term use only. After a decade on the drug, my son was finally slowly weaned off it. The withdrawal was horrible. My son was then put back on the drug at twice the dose, and this by a doctor who did not know my son and did not speak to anyone who did, including his primary care doctor and the mental health provider who had tapered him off the drugs in the first place. The reason that he was tapered from the drug in the first place was that my son had cardiac damage from the drug, and this was an attempt to minimize further damage.

My son was prescribed Divalproex ER, known as Depakote, “for aggression.” This was another drug prescribed “off-label” and one that is contraindicated for concomitant use with the neuroleptic drug, clozapine, which was also prescribed off-label to my son. Clozapine is still not approved for pediatric use, more than a decade after it was first given to my son.  Both clozapine and Divalproex ER are also not recommended for people with a diagnosis of epilepsy, and/or a history of brain trauma.

My memories of this time in our lives are still a wound that has yet to heal.  I thought my son was going to die.  I used to dream of hiring mercenary Marines to rescue him.   

 America’s children need us to stop investigating how bad the over-drugging of children is.  Each new investigation is a little more horrifying than the one before. Instead, we need to act. The lives of America’s children depend on us doing something about what we have found, and acting on the information we have.

We Americans pay the doctors who prescribe these dangerous drugs to children.  We have an ethical and moral duty to ensure that we are not paying for children on Medicaid to be mistreated and harmed by programs we pay for.  When one is aware of this sort of injustice and of harm being done, failure to act and to protect children makes one complicit.  We, as a society, must act without delay to help children in need of our care, compassion, and protection. 

I need to know that what was done to my son isn’t going to keep being done to other children.  The children whose lives have been lost altogether—like Rebecca Riley and Gabriel Meyers–deserve to have their memories honored.

My son needs a fair amount of assistance and he needs protection to this day, even though he is now grown.  I protect him out of necessity because of the serious damage the drugs have done to his brain and his central nervous system.  My son is terrified of clinics, doctors’ offices and hospitals. But I have hope, and believe recovery is possible. I have to work hard not to dwell on all that my son has lost, and know it serves no useful purpose to think of what could have been.  I love who he is, and what matters most is being present and aware of what is.

Dear All,

It happens more and more often that people, clients and their families contact me and my colleagues to ask if there are places like Family Care Foundation in other countries. I am not so sure about that, but if some of you know a place a bit like ours, please let me know!!!

The other thing is that I would deeply love to encourage other people to start something like our place since so many people are asking for that kind of “treatment”. I dislike the word treatment, but for lack of better alternatives it might be called that now.

I often meet people saying that they wish to start something like Family Care Foundation, Some weeks ago I met colleagues in NZ who have ideas about how to do it.  I really hope they make it come true. It is “just” to start, since it is anyhow impossible to know beforehand what will happen and what it will be like. The main thing is to have a vision, to find some people to collaborate and to realize it will be very hard at times, but that is how life and work is. And the benefits are huge. That is what I have experienced myself and it is also what people around me say when talking about our shared experience.

There is a need for places which combine a so-called “ordinary life” with therapeutic knowledge, and so many people are asking for places like that. Daniel Mackler has indeed shown an alternative by his movies. Now we have to find a way together to make it come true in a very concrete way.

Best wishes,

Carina

I see it everywhere: People with mental illness need medication.  It sounds reasonable.

Today, there are even political organizations that seek to make it easy to force a person to take it.

It’s easy to look at another and assume things like that.  It’s human.  After all, it’s compassionate to help someone who isn’t able to ask for help, right?  They’ll thank you in the long run, won’t they?

No one asks why their child, or sibling or friend refuses to take their meds.  Why bother?  It’s an illness.  It’s meaningless.  The doctors say so.  They know these things.

Have you ever questioned the logic of the phrase “She wouldn’t be refusing medication if she wasn’t ill”?

I am a noncompliant mental patient.  I have been for years.  I beg you.  Ask why.

Look into my eyes and see me.  Try to understand where I’m coming from.  Even a crazy person has a human will.

I am someone’s sibling, someone’s child, and someone’s friend.  I could be yours.

I’ve been told more times than I can count that I won’t make it without medication.  I’ve been told that I have a chemical imbalance.  My brain’s broken.  I need it.

If I refuse, it’s the side effects.  They can treat them with more medication.  If it isn’t that I lack insight.  I don’t know I’m sick.

Why would I possibly want to stop?  How could I wish to do so?  Let me ask you:  Have you ever taken these drugs?

They call it anti-psychotic medication.  It sounds good enough, but did you know these drugs are also called major tranquilizers?

They speak of side effects, but do you know what it feels like to have them?  Can you read that on the label?  On my label?

What’s that?  You learned all about this in medical school?

Can you learn what it is to be in love from reading a medical description?  Heart rate, neurotransmitters, behavior patterns.  Three criteria out of five.

Can human experience be described in such simple terms?  I bet you don’t think yours can.  Why, then, do you insist on describing mine?

I know how major tranquilizers feel.  I’ve had to.

They change a person.  The vigor of human experience fades to shades of gray.  Life becomes dull, boring, long.  Creativity slips into nothingness.  The very human spirit is dulled.  You can go from the rapture of being alive to wondering if you even are.

They will make you calm.  They will make you behave.  They might even help with your problems, but they can dampen what really matters – what makes you alive.

They majorly tranquilize.

“She prefers her mania – her madness.  It’s a symptom of the disease.”

How can you say what matters to me?  Is that your right?

For this broken mind of mine, I have been locked up.  I have been threatened.  I have been restrained.  I have suffered at the hands of a system I’m told is helping me.

And they wonder why I don’t trust them. How could I be hesitant, even bitter?

“She’s paranoid.  She won’t take her medication.”

They might be right, but all I ever wanted is to make my own choices.  I’ve only wanted to scream, “What about how I feel?!”

I am a noncompliant mental patient.  Hear my voice.

A cancer patient can refuse chemotherapy.  A religious person can choose to trust God over penicillin.  A doctor would call both irrational, but acquiesce.  All I ask is the same right.

“She’ll decompensate without it.  It’s the only thing keeping her even remotely sane.”

I stopped all my medication twice.  I was hoping once would be enough.

The first time, I failed.  I lost it.  They were right: I went crazy.  I was strongly encouraged to take my meds.  It was a fight I knew I would not win.

“Patient has been compliant – though hostile.”

A façade of normalcy regained.  High functioning.  Working, going to school, socializing.  All the things you’re supposed to do.  All so hollow.  The spark was gone.

“The medication is effective.”

But the drugs felt the same.  So, I stopped again.  Lots of people do.

“Compliance is a major problem in the treatment of mental illness.”

I was told that I’d need medication forever.  The facts spoke clearly.  I was mentally ill.  As long as I took my medication, I would be fine.  Without it, I was doomed.  Why did I want to stop?

I told them how it feels, but it didn’t matter.  I told them I would recover through force of will alone.

“Patient is grandiose.”

So, I told them I didn’t believe I was sick.

“Patient lacks insight.”

In truth I was terrified.  I believed I was insane, I had failed before, and I wasn’t sure I could pull it off on my own.  After all, the facts were clear – no one does.

But I did.

Later I learned that many have.  No one talks about them.

John Nash never took medication again – it was key in his recovery.  They left that out of the movie.

There are many others who were told no one recovers – told that they would be ill forever – but who proved them wrong.

I am a noncompliant mental patient, yet no one would try to hand me a pill today.

To get here, I had to ignore good medical advice.  I had to have poor insight and bad judgment.  Without it, I would never have achieved what I have in life.

So, now when I hear about family members who should have made sure their relatives were taking the medication, or courts that should have forced it, I think to myself about doctors who should have listened.

I often think about people who may have succeeded in stopping their medication, if only they had the necessary support instead of assurances of failure.  I wonder how many more I should be able to name.

Here are some thoughts that I wanted to share with you about how to effectively serve your clients, friends and loved ones who are having an experience of madness. These ideas may also be of help in doing self-care if you are entering or traversing a madness process yourself.

They are followed by my quite personal and un-orthodox neo-Jungian formulation of madness.

That formulation and these practical suggestions are mainly gleaned from my own un-medicated, untreated experience of madness in my early twenties, and from working daily as a primary therapist for almost 30 years with actively mad clients using a Jungian/Transpersonal, Laingian approach.

During that time I worked for over 3 years at the  24/7, alternative, 20 bed, free standing, transpersonally oriented, acute care open door program called I-ward in Martinez California where no medications or leather restraints were used or diagnoses given to consumers who were acutely mad, which I describe in my last blog- “Remembering a Medication-Free Madness Sanctuary.”

I also helped develop a similar 5 bed program in Marin County, Passages In, that was short lived. I did several months of internship at St. George’s Homes in Berkeley where a similar Jungian/Transpersonal approach was used.

After that I worked for 25 years in public sector clinics and on a mobile crisis team as well as in private practice. Even in those settings, most of the mad clients I served were not on medication.

I also am drawing on my doctoral research follow-up study done on the San Francisco based, medication free Diabasis House sanctuary for clients in acute madness, and my 20 year relationship with its founder, Jungian psychiatrist John Weir Perry.

But my early experience of serving from age 18 as a medic in the Army and Air Force Reserve for 8 years and then as a State Hospital attendant with profoundly developmentally delayed men- and for 2 years as an orderly at a nursing home with brain damaged, demented and Alzheimer’s patients, also informs my advice on how to relate with love to people in physical and emotional pain and suffering.

So, here are two basic principles for helping someone or yourself in a madness process which are distilled from my own personal and work experience and  from the study of successful Bay Area alternative programs.

1. Keep suspending your disbelief

Every time you tell yourself or believe that the mad  person you are being with, or you yourself has a tragic, lifelong, and threatening illness that has no inherent meaning or purpose- such as a neuro-biological, genetically based diseased brain, an incurable thought disorder, or chemical  brain imbalance- try to suspend your disbelief that another explanation may be possible.

Instead, hold the belief that they or you are going through a necessary, meaningful, developmental, initiatory, trans-formative, transpersonal/archetypal, symbolic and/or purposive natural process – one that is neither pathological nor indicative of a genetically inherited, neuro-biological brain disorder.

Hold the belief that, as Dr. Karl Menninger famously said, it is possible to emerge from the madness process- “Weller than well!”

2. Be Receptive

Once you are able to stay open to the possibility that this process is an important, potentially transformative natural life event, draw on all your skills of receptivity and empathy. Begin by simply listening and receiving the person or your own experience with an open, compassionate heart. Let the gentle feelings of love that you would feel for a loved one who is frightened and suffering be present within you.

As this process unfolds, gently invite and encourage the expression of both the emotional and symbolic content. People in a madness process may need to use modalities such as drawing, painting, movement and evocative music to express themselves in addition to or instead of speech. Somatic modalities of touch and bodywork can be especially welcomed and grounding and soothing.

The common and overwhelming evidence from  the Agnews project, Diabasis House, I-Ward, Soteria House and other alternative programs from all over the world, confirms the basic need for a person in such a madness process to be believed in, listened to and lovingly received and responded to in this way.

Some years ago I co-led a workshop on madness with  Loren Mosher of Soteria and Mathew Morrisey of the medication free sanctuary Burch House. We all agreed that the necessary and sufficient condition for someone to traverse a madness process into wholeness, was the presence of heart centered people around them who received the person’s emotional and symbolic process with a certain level of compassion that I would call love.. Those loving people did not need to be professionally trained.

This view was also expressed by R.D. Laing when asked- “Dr. Laing, I still don’t understand the theoretical basis of your approach to schizophrenia. Could you please explain?”

“Certainly,” said Laing- “The basis is love. I don’t see how you or I can be of any help to our clients in a visionary state unless we are capable of experiencing a feeling of love for them. Therapy, as opposed to mere treatment requires that we have a capacity for loving kindness and compassion.”

The questioner was still perplexed and asked- “But Dr. Laing, what is your clinical methodology for developing this approach?’

A recent Facebook post from a psychiatic nurse shows how the very subtle, even non-verbal communication of the energy of love can dramatically effect someone who is mad-

“I remember once bathing a schizophrenic(that was her didgnosis)woman who had not responded or spoken for 20 years. I remember feeling some affection and sadness for her as I washed her gently in the tub. All of a sudden she started to respond and called me mommy and wole up from her catatonic state. The care, the loving touch got through to her.. I will never forget that.”

It is the same very familiar feeling tone of caring love that we often feel for our children or mates as we nurse them when they are ill, that can be evoked between us and someone in a madness process if we open our hearts beyond what professional mental health training teaches.

The nurse’s story makes me remember working with a man who was almost 80 years old who was diagnosed bi-polar and who had been in the hospital many times. Even though I was almost 30 years younger, because I sat with him with my heart very open and asked for his dreams, after some time he came with a hugley healing dream.

He had been depressed his whole life and said that his mother was always vey harsh with him and had never in his childhood told him that she loved him or touched him with love or hugged him..

He reported his healing dream with tears of gratitude and joy because in it he was a young boy again, held warmly and rocked for a very long time by his mother who repeated wonderful terms of endearment and told him over and over that she loved him..

He then said-’And the strangest thing was Michael, she was bald just like you are.’

So,.in that spirit of risking to call what we may feel for ourselves or others in a madness process as being in fact love, here are observations I slowly learned for myself the past 30 years about how to more specifically make yourself available to anyone in a madness process. The list is only an attempt to begin a conversation and exploration of all the possible ways we can be of service.

• Keep a focus of energy in the hara chakra below your navel.

• With your stomach muscles relaxed, feel yourself do deep and slow belly breathing.

• Drop down your shoulders.

• Let your face become calm and relaxed–not becoming pensive or quizzical.

• Let your voice come up from your hara in lower octaves, emerging with the energy of your heart chakra as you speak..

• Let your kindly, gentle, even loving and tender feelings of empathy and compassion arise in your heart chakra for a fellow human being in distress and suffering who is sharing the room with you.

• Allow silences.

• Don’t seek direct eye contact if it seems to make the person uncomfortable.

• The person may be in a very heightened state of awareness and is processing minute inflections in your voice and body language.

• Their ability to see into you may surprise you as uncanny and psychic.

• In this state they may directly or symbolically tell you secret things about yourself that are disquieting.

• If the person is hostile increase your vigilance on your own physical and emotional markers of receptivity.

• Because you may find that you may involuntarily be holding your breath.

• You may notice your throat becomes constricted and your voice goes up in octaves.

• You may notice you are opening your eyes very widely and blinking a lot.

• You may feel the need to fold your arms across your chest or cross your legs.

• To the degree that you can be aware of these shifts in you prompted by anxiety, you can refrain from them as much as possible and remain in the open, receptive, emotional and physical posture with a potentially physically or verbally assaultive person in a madness process.

• The more you stay grounded and centered the more they will calm down, will not sense a fight or flight visceral response to them building in you.

• Being with agitated people in a madness process is kind of like practicing an internal martial art at times- a form of Aikido.

Madness is an ancient form of uncivilized wildness. It also is a sacred mystery.

Emily Dickinson said it well-

“Much madness is divinest Sense–
To a discerning eye–
Much sense–the starkest Madness–
‘Tis the Majority In this, as All prevail–
Assent–and you are sane–
demur–and you are straightaway dangerous
and handled with a chain.”

If you are given the opportunity to serve those traversing the mysterious depths and heights of madness count yourself lucky, especially if they are not emotionally anesthetized by medication.

The efficacy results from the Northern California based Agnews Project, I-Ward, Diabasis, and Soteria House all clearly demonstrate that without medication, most first time, acute madness crises will in fact be the occasion for a life changing developmental and possibly even a spiritual transformation if a 24/7 alternative, non-medical model sanctuary is provided.

My experience and research into alternative approaches for serving those in an acute madness process has led me to believe that at least 75% of the consumers who become trapped in the mental health system could have avoided that fate if acute care, 24/7 Bay Area sanctuaries like Diabasis House, Soteria and I-Ward (where I worked )were available at first contact with the system.

They never would have gone on to be labeled Schizophrenic or Bi-Polar or Schizo-Affective.

But even for those not blessed to have a sanctuary to go to during their initial excursions into madness, hope is not to be lost.

John Perry acknowledged that my utilizing Jungian dream work with consumers who had been medicated for years such as the older man I told about above, extended his work on acute episode madness into another level. He had not worked with long term consumers.

After all the sanctuaries were forced to close in the Bay Area, I got to do therapy with long term people who were mad as well as acute phase consumers in clinic settings.

Against conventional wisdom and the wishes of my clinical supervisor at work, but with the tentative encouragement of doctoral program clinical supervisors John Perry, David Lukoff and Jungian, Tanya Wilkinson, I started asking consumers to share their dreams. For many, their psyches had just been waiting to be asked!

The buried, un-experienced, un-named, un-expressed affect/emotion that was the prime causal factor in their becoming mad in the first place was re-animated as archetypal dreams of emotional power and symbolic expression came pouring forth.

It took years for some people for their psyche to do it’s work of resurrection and to allow the person to have access to the full range of human emotions without becoming mad as before, whenever too strong and intense feelings would come alive.

One of the many contibutions that John Perry made to a Jungian approach to madness, was to wonderfully re-defined the meaning of ‘archetype’ to mean- ‘affect-image.’ He meant that affect and the image are co-equals of archetypal activation and experience.

I would take that further and say that affect, emotion is the source of all imagery, every word, thought, facial expression, auditory and visual hallucination, so-called delusion.

We are first and foremost emotional beings who from conception begin to rage, weep and laugh and hide in terror and dance for joy- and seek to receive and give the emotion of love.

For me, by definition, everyone who is mad is in an archetypal, transpersonal experience, just as everyone who isn’t mad is too.

The artificial distinctions that label some mad people chronic schizophrenics and others blessed to be in a spiritual emergency don’t exist for me. The mumbling, homeless mad person is just as deserving of our seeing that they are in a spiritual wasteland where the Gods of the wasteland rule as the person who is having amazing, visionary experiences that we are inspired and maybe dazzled by,- who brings Hermes or Persephone or Kwan Yin into the room with us as often happened on I-Ward.

The New Age and sometimes Transpersonal Psychology over emphasis on defining spirituality and spiritual emergency and spiritual emergence as being only enlightening and uplifting is an unfortunate mistake. The elevator goes down as well as up.

Spiritual experience means to me the contact with spiritual energy. From my own initiatory madness some of it is dark I know. Some of it is light I know. Darkness initiates just as much as light does. It turns out that both light, love emanating energy and rightly feared dark, dangerous spiritual energies are sometimes active in bringing balance through transformative madness as well as in- ‘normal’ life.

Based on my experiences on I-Ward which I describe in my last blog, I believe that if you spend much time with people in acute madness experiences who aren’t medicated you will encounter an uncanny presence of what can be viewed as spiritual light as well as darkness.

That is another reason madness has been feared as being demonic until science/medicine said it was all in people’s heads- and came up with perverse ways to silence it that at times would make an inquisitor smile.

Jung said that: “Psychiatry has turned the Gods into diseases.”

Unfortunately Jung and most Jungians have turned the Gods(and Goddesses) into archetypes: named and minutely described denizens of the collective unconscious that we can have an ‘as if’ relationship with at weekend workshops and schoomze with once and a while in our dreams. Unless we go mad and then we know them intimately.

Traditional Jungians have identified the forms, the affect and imagery tracings of the gods from dreams and visions, but rarely ask them into the consulting room for an embodied visit.

They haven’t turned the gods into diseases, but they have not honored them through the timeless practice of ritual where the gods were fervently called forth to have their way with the initiate. The 50 minute hour with some active imagination is about as wild as it gets!

Jung greatly feared going the route of Nietzsche who died raving mad. Perry extended Jung’s work on madness because he named it as purposive if welcomed with open arms.

Jung exhorted analysts to terminate an analysis if a single dream of a patient looked like a sign of an- ‘incipient psychosis.’

Please don’t make the mistake of too greatly fearing madness or underestimating the spiritual dimension of our human birthright as you may practice your own shamanic vocation or seek to understand the mysteries of others or your own madness.

One of my favorite Jung quotes points to that mystery-

“These inner motives spring from a deep source that is not made by consciousness and is not under it’s control. In the mythology of earlier times these forces were called mana, or spirits, demons or gods. They are as active today as they ever were…the one thing we refuse to admit is that we are dependent on ‘powers’ that are beyond our control.”

In my experience, behind every image, thought and word, there is an emotion first. Behind every emotion there is a universal so-called archetypal power and emotional energy that must come forth as imagery that expresses that deep emotion. Behind every archetype is a totally autonomous living force of deity that has no historical bounds, no time bound archetypal form.

These ancient and emerging deities, that use our lives and bodies as their playgrounds and every second hold us in sway as they incarnate themselves in us, ever emerging anew, arise out of a greater unifying mystery of benevolent silence.

Weep for the prophets and so-called psychotic visionaries who are robbed of their life giving gifts from the Gods by our culture of fear and human arrogance. And weep for us that we still treat the mad ones among us as lepers when they are, and always have been a divine source of the mana we need to survive on earth.

As a first ever, initial madness process begins, the psyche is faced with such overpowering unbridled emotion that the inner emotional charge grows to become profoundly existential in nature and magnitude.

As the person faces the initiatory challenge of young adulthood in such an all pervasive liminal depth, the ego, the frail manager of consensual reality, simply is engulfed.

The ego is swamped in the soul depth liminality of an emotional power that triggers all forms of desperate, seemingly delusional attempts to give some fragmented sense of meaning to the inner experience.

It is a visceral, first chakra existential experience that seizes the individual.  It is the emotional response to being lost. It may be experienced mainly as one feeling exalted and indestructible at first or feeling totally terrified, doomed and bewildered.

The experience may also fluctuate between being plunged into the underworld and being drawn up into heavenly realms with amazing rapidity.

In these dramatic ways the process mirrors shamanic initiatory ordeals described in every cultural lineage.

In any event, if not made numb by medication, the psyche creates a mythic story along predictable lines. The drama is played out on the stage of the central archetype, the Self, where every kind of polarity may be experienced and transmuted: good/evil, dark/light, male/female, life/death, terror/serenity, grief/joy, desolation/birth.

All  the emotion generated and image fueled polarities may be contained in the mandala crucible of the relationship that you, the loving caregiver, creates with the person who is mad. In that container with you, all the polarities can be balanced into a cohesive unity.

That loving feeling toned relationship with you is crucial, it is a prerequisite for transformation and healing to occur.. Without a loving ‘other’ to make the mandala crucible which gets forged by the connection of their two hearts and psyches, the mad person spins on out of control.

Acute madness is the ultimate identity crisis and is for some, a potentially shamanic initiation. Our feeble, arrogant egos usually assume we are master of knowing “Who am I?”

As the pre-madness/visionary ego floats in this ignorant vulnerability over an abyss of the unfathomable depth of the collective unconscious and spirit world of gods, demons and ghosts, the ego is always just a few nights without sleep away from psychosis, or a drop of LSD away from psychosis, or from a psychosis triggered by a kundalini eruption, or a loved ones sudden death.

The unprepared ego of an especially vulnerable young adult facing autonomous functioning separate from their family is at risk from drowning in the depth of the affect and images of the collective unconscious.

It is remarkable that the childhood tasks of such a vulnerable ego do not overwhelm it. However, in the late teens and young adulthood comes the awareness of mortality and the knowing that physical survival and social acceptance and success depend on functioning separately from parents.

The broad range of every possible human emotion I mentioned above that is our human birthright and imperative to experience and claim, makes up the magma of the madness eruption that is too strong for the young adult.

These emotions come boiling up to the surface because the young person has hit the developmental hurdle of young adulthood.. In their families, full emotional experience and expression was not allowed and made possible for them to sufficiently master.

Now the psyche will try and rectify that through transformative madness.

Because of the power of our toxic and soulless culture to create enormous deficits in our family systems, most notably an epidemic of the lack of a strong infant-parental love bond, when faced with the often cruelly threatening social Darwinism cultural gauntlet one must traverse into young adulthood, the pre-madness ego for some is simply not prepared to traverse the hero’s journey and initiation across so much underlying liminality.

We can’t underestimate the corrosive and pervasive effects on vulnerable children and young adults that our largely loveless and spiritually barren patriarchal culture inflicts through degradation ceremonies of endless winner-loser competitions where shame and guilt and fear of punishment break the spirits and hearts of so many.

For such vulnerable young persons, an affect of an unnamed existential terror, the dreadful sense of an abyss of yawning ontological insecurity seizes them. This overpowering challenge may then trigger an attempted visionary alternative restructuring of the ego through a radical immersion in a mythical inner struggle for adult independence.

This inner heroic struggle for ones future life is carried out at the archetypal center of the Self, if the young person’s process is not aborted, if they are given sanctuary and not medication.

I have seen them come out the other side with a new, heroic ego strength that grew out of their trial by fire.

As the great R.D. Laing said after witnessing and attending many on such a journey at the Kingsley Hall sanctuary he provided:

‘From the alienated starting point of our pseudo-sanity, everything is equivocal. Our sanity is not true ‘sanity.’ Their madness is not true ‘madness.’ The madness that we encounter in ‘patients’ is a gross travesty, a mockery, a grotesque caricature of what the natural healing of that estranged integration we call sanity might be. True sanity entails in one way or another the dissolution of the normal ego, that false self competently adjusted to our alienated social reality; the emergence of the ‘inner’ archetypal mediators of divine power, and through this death and rebirth, and the eventual re-establishment of a new kind of ego functioning, the ego now being the servant of the divine, no longer it’s betrayer.’

Years experience of teaching psychiatry to medical students have made its Marmite-like properties clear … they either love it or they hate it, and year on year more fall into the latter category. Despite figures which present mental illness as an impending tsunami of disability; one in four of the population will suffer, single most common reason for sickness-related benefits, predicted greatest cause of disability world-wide by 2030, huge numbers of American adolescents taking psychiatric medication, more than forty two million NHS prescriptions for antidepressants in 2010/11, and rising, few want to do it. Despite initiative after initiative, psychiatry remains close to the bottom amongst medical students’ and newly qualified doctors’ career choices.

Those that don’t like it find it messy. One recent survey from New South Wales reported that students find psychiatry “low prestige”, that its treatments are ineffective and that it lacks scientific foundation¹. Those that do like it also find it messy, but revel in the mess. A parallel Canadian survey reported that students interested in psychiatry had an educational background in the arts and a strong social orientation². The uncertainties of diagnosis, the absence of confirmatory laboratory findings and conflicting theoretical frameworks which range from the neurobiological through cognitive behavioural to psychoanalytic and the socially constructed make psychiatry feel like a messy swamp. Not a comfortable place for the aspiring doctor wanting to practice the appliance of science.

Swamps are only a problem if you want to farm, to build a house or to drive a road across them. If you are a botanist, a bird watcher or an entomologist they are a delight, which brings us back to the Observer. It reminds us that for the wider world, mental health and illness are not just the narrow concern of specialists. Happiness, despair and confusion are everyone’s business and most people’s experience at one time or another. Attempting to shoe-horn the vagaries of human experience into the conceptually narrow confines of “illness” isn’t working and won’t prove sufficient. Of course there may yet be therapeutic gains to win from neuroscience but the same is also true for other disciplines that contribute to the study of human difficulties and how we respond to them; law, nursing, philosophy, politics, psychology, social sciences and more. If those in the field are to match wider expectations of their teaching, their practice and their research, then we have to rise to the challenge, and acknowledge that what are about is indeed a truly pluralistic enterprise.

Unfortunately one person’s pluralism can be another person’s tribal conflict. Mental health services and mental health research remain firmly hierarchic, with the medically qualified psychiatrist at the top of the tree, and with that comes a whole herd of “elephants in the room”. Certainly the most able should lead, but is that synonymous with a medical qualification? Even if it is, is the pluralism necessary to do the task justice achieved by the training currently undertaken by the medical psychiatrist? Perhaps what is most striking amongst medical students encountering psychiatry for the first time is their struggle with the credibility of “these are just illnesses like any other”. However else they might be described, on the whole medical students are bright young people. Is the honest insight of the young trying to say something we find difficult to hear?

1.Mahli, G.S., Coulston, C.M., Parker, G.B., Cashman, E., Walter, G., Lampe, L.A. and Vollmer-Conna, U. (2011). Who picks psychiatry? Perceptions, preferences and personality of medical students. Australian and New Zealand Journal of Psychiatry. 45 861 – 870.

 2. Gowans, M.C., Glazier, L., Wright, B.J., Brenneis, F.R. and Scott, I.M. (2009). Choosing a career in psychiatry: Factors associated with a career interest in psychiatry amongst Canadian medical students on entry to medical school. Canadian Journal of Psychiatry 54 557 – 564.

I’ve always understood mental health advocacy as a human rights movement, alongside user survivor involvement, a way of having a voice and being heard.  It is grassroots and user led with projects all over the country, some areas having more choice than others.  Autonomous but with the underpinning principles of independent advocacy.  United in helping people to take control or take back control of their lives wherever possible. The Scottish Independent Advocacy Alliance promotes, supports and defends the principles and practice of independent advocacy across Scotland: http://www.siaa.org.uk/

In 2000 I worked in a voluntary sector (charity) organisation in Perth, Scotland, managing volunteers in a centre for carers and hub where other projects were also based.  It was the time of the ‘The Same as You?‘ review of services for people with learning disabilities http://www.scotland.gov.uk/Resource/Doc/1095/0001661.pdf which was about helping people to be included in community life, education, leisure and recreation, day opportunities and employment.  I got involved in self advocacy groups of people with learning disabilities as they helped each other to say what they wanted.  They were invited to council meetings and spoke about how they would like services to be.  It was a great introduction to what advocacy was about and I enjoyed being part of it.  I also supported advocacy volunteers, at that time they were unpaid, and had advocacy ‘partners’ myself, people who had asked for someone to advocate for them.

One of the advocacy partners I worked with was a young man in a forensic locked ward who had come from the prison and had narrowly missed being confined in what was once called the penitentiary, now state hospital.  He needed help with writing letters and saying what he wanted to happen, to have a voice.  These letters went to hospital doctors and management.  It was also an opportunity to build a relationship with him as a person.  For I think this is an essential part of being an advocate, finding out about the person, not just their situation but their hopes and plans.  Getting alongside them.  This young man eventually was discharged into supported accommodation in the town, then his own flat.  When I last spoke to him he had started to volunteer at the base where I used to work.

Another person needing advocacy support was a young woman with Friedreich’s Ataxia, an inherited disease that causes progressive damage to the nervous system.  Under the direct payments scheme she employed her own team of support staff 24/7 rather than receive services from the statutory agencies.  I was asked to provide advocacy support and to do an inventory of her possessions, in her home where she lived in the community.  When I first met this young woman she gave me a copy of her personal story that she’d written and printed in a booklet.  This helped me to understand something of her life story up to that point.  It took me longer to work out what she was saying as her speech had become slurred.  I did worry if I’d manage to hear what she wanted but as I got to know her it became easier.

The reason for her advocacy request and inventory was she suspected that some of her possessions had been removed by a person on her care team, new items that had disappeared.  She wanted an inventory made of all the possessions in her house so that she and others would know what there was and keep a regular check on this.  We worked together on this task and I met different members of her care team during this time.  The young woman talked about the items that had gone missing, some of them gifts from friends.  She had support from the statutory agencies in managing her care team but wanted someone independent to work on the inventory task.  During the time of this task she had to go into a nursing home for respite and I visited her there.  It wasn’t the best of places and the cleanliness was suspect.  We talked about this but she was only there for a short while so didn’t want to complain.

I’ve told these stories to show the importance of ‘independent’ advocacy in the life of a person who is vulnerable and has difficulty communicating their wants and needs.  For someone in a locked ward of a psychiatric hospital where freedom is restricted and there may be seclusion rooms, forced treatment and restraint, advocacy might be the only means by which the patient can be heard.  And the project providing the independent advocacy should be ‘independent’ and that means no conflict of interests.  In Scotland mental health advocacy is mostly funded by local authorities and health boards who also fund other mental health services.  However the recent introduction of tendering of advocacy services has opened the doors to other organisations bidding for the work, including English service providers that claim they are independent because they don’t provide services in Scotland.

That’s what happened in 2009 in Fife where I live, when the local advocacy groups lost out at the tendering process to an English service provider.  And I campaigned at Scottish Parliament with the local collective advocacy group in May of that year, against the tendering process in Fife, which we maintained was not fair or transparent.

I believe that in Scotland we need to keep our historical, grassroots, user led, independent advocacy groups that can be completely free from conflict of interests.  Not aligned to service provision in any form, and that includes England.  When people are in crisis and in locked wards with the threat of restraint, forced treatment and seclusion this is when independent advocacy is crucial.  We don’t want or need a ‘chain’ of advocacy projects under the umbrella of an English service provider.  It’s up to local councils and health boards in Scotland to recognise the voice and value of the grassroots, user led, mental health advocacy projects and to uphold the independence of advocacy.

PART II – ISSUES TO BE ADDRESSED, STRATEGIES TO ADDRESS THEM

Treatment/medication compliance is the “quality of care” measure that along with “clinical outcomes” and “experience of care” will be employed to determine whether the homes’ Goal 3, “Improve Outcomes for Persons with Mental Illness and/or Substance Abuse Disorders,” has been achieved. It represents for me, and would apparently for Giannakali (1), the most dubious and yet the most instructive aspect of the mental health homes’ objectives, since it exposes the homes’ unspoken social control agenda and a potentially coercive methodology. Medication compliance will be tracked via DOH’s computerized records of prescriptions written and filled. If a specified period of time elapses – whether several weeks or months, depending on the medications in question – without a prescription for a customarily prescribed medication being written or filled, the responsible provider will be notified – it’s unclear to me whether by a State or network monitor – will be expected to provide and/or query the enrollee for an explanation and will be required to present a plan of action to continue the required treatment (2).

CARE MONITORING: SOCIAL CONTROL, VIOLENCE AND TREATMENT COMPLIANCE

This procedure has its roots in the State’s “Care Monitoring” initiative, piloted in Brooklyn in 2008 and then implemented throughout the State after an angry and apparently deluded mental patient killed a Manhattan psychotherapist (3). To quell the public outcry that ensued, a high level commission of State and City officials was formed and recommended a plan whose focus was treatment compliance, particularly as regarded medication, by persons diagnosed with serious mental illnesses. Its underlying operative assumption, publicly voiced by Commissioner Hogan at a Brooklyn meeting I attended just prior to care monitoring’s initiation, was that mentally ill persons who did not take anti-psychotic medications had a greater potential for violence than their medication compliant peers. In short, treatment/ medication compliance, care monitoring’s objective, would serve to control violent acting out behavior.

In the case management programs I was directing at the time, we experienced care monitoring as intrusive, wasteful and often unnecessary. For example, many of our clients presumed to be medication non-compliant because they had not filled a prescription at their neighborhood pharmacies in two or more months turned out to be receiving depot medications at their neighborhood mental health clinics. Further, my program supervisors spent so much time tracking down the information requested by the care monitors, who were employed by the private agency contracted to oversee the initiative’s implementation, that we did a time/motion study to document the program-time devoted to that endeavor. We reported our results to the provider advisory committee attached to the initiative, but we received only meant-to-be-mollifying assurances that everyone involved was aware of the problem. Finally, we never bought the “mental patients are dangerous” proposition. We knew after sixteen years of working with a few thousand individuals that, as per the literature, our clients were more likely to be victims than perpetrators of violence. In fact, only a handful of them over the years had committed acts of violence against others, and these were simple assaults or disputes with friends and family members that had gotten out of hand. It should be noted that a literature review undertaken by Choe, at al, in 2008 (4), showed rates of violence by persons diagnosed with serious mental lllnesses against others as ranging from 2-15%, while violence perpetrated against that same cohort as rates ranging from 20-34%. Further, acts of violence appeared correlated primarily with abuse of alcohol and drugs, not medication non-compliance, and to have taken place largely within six months of an acute hospitalization. Of true significance for me was that none of our case managers was ever assaulted by a program client.

As the literature predicted and I often reminded my staff, as many as 50% of our clients at any one time were probably not taking their prescribed medications. A literature review on medication adherence conducted by former U.S. Surgeon General, C. Everett Koop, in 2006 (5) showed rates of compliance of 50-60% for persons diagnosed with schizophrenia, as compared to rates varying from 40-90% for persons with physical ailments.
Our clients’ pacific behavior – and we worked with many individuals who had been incarcerated and had histories of violence – was very likely due to the connections, the relationships, they had formed, with friends, family members, treatment providers and their case managers. Again, as per Choe, et al, reductions in violent acts seem associated primarily with the passage of time spent by individuals in the community as well as with familial and associational links forged by them. I had also learned, after directing an out-patient Forensic DBT program for impulsively aggressive persons that those who engaged in violent and anti-social behaviors rarely if ever sought out treatment (6,7). They would never appear in a Medicaid database.

Finally, we saw care monitoring, as we did AOT, as a violation of our clients’ civil rights. After all, why couldn’t our clients refuse or walk away from treatment and prescribed medications? Two of the State- and City-approved discharge criteria we had employed over the years were “missing” – when our clients didn’t want to be found, no matter how diligently we searched, they weren’t – and “refusing [case management] services”. Were we now expected to pursue clients post-discharge? In fact, we were, but we refused to do so.

From Brooklyn, care monitoring rapidly expanded statewide. Now it’s to be incorporated into the health homes as one of its principal quality assurance measures. Medication adherence will be central to monitoring treatment effectiveness and will expanded to include all medications, including those prescribed to treat physical ailments. Again to refer to Koop, electronic health records, together with a closed pharmacy system, have proved effective in tracking medication compliance and, conversely, non-compliance. The key question is what will be done with that information, particularly that which uncovers medication non-compliance. As per Koop, the studies he reviewed cited the following as key barriers to patient medication adherence: the prescription of “complex [medication] regimens; [failure] to explain the benefits of a medication adequately … and having poor therapeutic relationships with their patients…” The studies’ collective conclusion was that “… enhancing communication between the physician and the patient is a key and effective strategy in boosting the patient’s ability to follow a medication regimen.” To paraphrase James Carville, Clinton’s old political strategist, “it’s the relationship, stupid!”

CONJOINT TRAINING: STAFF & ENROLLEES

Throughout the official documents I reviewed, those to and from CMS and the State DOH (8,9), enrollees appear to be regarded as passive recipients of services rendered, as patients in a clearly subordinate role. It’s not clear at all to me how much input enrollees will be allowed in their treatment nor, more importantly, how that input will be solicited and integrated. To be sure, the State’s plan outlines a standard assessment and planning procedure, but I also know that such procedures are observed more in the breach than in actual practice without training and ongoing supervision. I assume that the case management training program at the Hunter College School of Social Work, for which I wrote the original curricula, will continue training entering case – or care – managers, and that their supervisors will provide supervision ranging in quality from rudimentary to quite effective. I have no idea how mental health clinic psychotherapists, whose clients collectively comprise 70% of the State’s out-patient population, will elicit pertinent information and encourage active client collaboration in their treatment. Anecdotally and as per my own experience, clinic psychotherapists are notoriously ill-prepared to address somatic/medical issues. Further, both case managers and clinical therapists, emblematic of the classic mind/body split in healthcare, simply do not know how to negotiate the “body” half, the medical side of that dichotomy. More training, as well as effective supervision, is needed.

And I have my biases. My twenty-plus-years experience training peers, case management clients and case managers and other mental health professionals conjointly has persuaded me that conjoint training, with information shared equally with between the helpers and those presumably being helped promotes collaboration between the two and serves to equalize the power equation in their relationship. In the Integrative Collaborative Care Management (ICCM) training program at the core of our health care advocacy study (10), our client participants seized the opportunity – one of them christened the project “Ask Questions … Get Answers” — and presented as intelligent, reflective individuals genuinely eager to learn as much as they could to live healthy lives; and our case managers were there to witness that; which served to motivate the CMs as well as underscore their mission to help and their accountability to their clients. Most importantly, both cohorts received candid assessments of the health risks they were running and straightforward strategies for mitigating those risks. So far as I know, there are only two studies that document the conjoint training of clients/peers and case managers and its outcomes: ours, completed in 2010 and referenced below; and the first that I know of, conducted in the early 1990’s, with Dr. Peter Stastny, a community psychiatrist recently retired from the NYSOMH, as director, where a small number of peers were trained alongside prospective case managers to work collaboratively with Intensive Case Managers in the Bronx. I served as the lead trainer in that project.

The State’s plan does leave ample room for conjoint training. Its “Care Coordination and Health Promotion” section advises CMS that “The health home provider promotes evidence based wellness and prevention by linking health home enrollees with resources…” I would assume that among those resources in the West Brooklyn home will be the “Wellness Training” programs offered by several of the community-based providers in that network. While the curricula generally used are informative, I experience their tone as well-meaning yet patronizing. Hard facts, things tough to say and hear, systems issues, are not mentioned. Little is said of the barriers to accessing health care that folks known to have mental illness diagnoses are sure to encounter: condescension, outright discrimination, with somatic complaints described in idiosyncratic fashion ascribed to an individual’s presumed mental illness. Most importantly, nothing is said of the link between the atypical anti-psychotics most of them are taking and the metabolic signs and illnesses they have or run the risk of having: their expanding waistlines and increasing weight, their elevated triglycerides, blood sugar and blood pressure and their declining HDL. It’s as if the curricula and their designers subscribe to T.S. Elliot’s nostrum, “… human kind cannot bear very much reality …” (11)

METABOLIC SYNDROME & THE ATYPICALS

The NYS Office of Mental Health (NYSOMH) recently issued a concise and direct brochure, “Cardiometabolic Risk” What Is It and What Can I Do About It?” (12), which details the issues, specifies the causal links and suggests possible remedies. Will it be distributed and discussed with every health home enrollee prescribed atypicals? Will its unequivocal message be incorporated into the various wellness curricula in use? Will enrollees be given the choice to refuse to take atypicals or any other medications recommended by their treating prescribers? Will the professionals, the folks who will actually do the work that CMS and the State’s plan demand, viz., to carry out their integration/coordination functions and treat, no less view, home enrollees holistically, receive training in overcoming systems barriers, in wellness, in the metabolic risk factors? It should not be assumed that the line professionals will know these things. How ironic – yet how telling – that the two stakeholders on the ground, the enrollees and the line staff, will have such inadequate preparation to address life-threatening issues that could well be considered iatrogenic, i.e., caused by the public mental health system itself. They have been afforded very little say in what will continue to be a very complicated and bureaucratic system and will not easily gain a voice.

I like our training approach, which has a Jungian cast to it: “Where danger is, there awakens deliverance (13).” The first module, which I generally teach, lays out the essential data of the NASMHPD study, beginning with the summary statement concerning the 25 year loss of life expectancy and completes the dots linking the atypicals with onset of metabolic symptoms and consequent diseases. That module concludes with the message that all the causative factors identified in the study are modifiable, which is the focus of the seven training modules that follow. Our trainers, experts in their respective fields, proceed to teach client and case manager participants about the atypicals, their links to metabolic illnesses, principally diabetes and cardiovascular disease, and then about the prevention and management/ mitigation of those diseases, should they occur (10) .

In the middle of all that, I lead two modules entitled “How to Talk To Your M.D. (14),” which has proved to be quite popular, largely because of the immediate use to which its contents can be put to use. I have employed it on several occasions now in a peer specialist training program and am invariably informed by the peer participants how practical it proves to be in their field work when helping other peers as well as in their own personal lives. I’d be happy to make it available to practitioners in the field, whether peers or professionals, and particularly to health home providers and their component programs. It’s one of the guerilla or sub rosa tactics I’d advise providers to use whose staff members and clients/patients need and could benefit from what I term health care advocacy training. While it might not conform to the letter of ACA legislation or to New York State’s health homes plan, I would hope it does to their spirit and intent.

Ultimately, it is more than disappointing – iatrogenic? — that the State plan does not make explicit the link between the atypicals, the metabolic syndrome and the consequent metabolic illnesses, principally diabetes and heart disease, and the loss of twenty-five years of life expectancy. It does highlight smoking as a causative factor; and, indeed, the American Heart Association implicated smoking in 37% of the over 400,000 deaths in the U.S. caused by heart disease in 2007 (15). Interestingly, the NASMHPD study (16) also focuses on smoking as one of the modifiable causes of the increased mortality of persons diagnosed with serious mental illnesses, without acknowledging the role played by the atypicals ; as does New York State’s “Statewide Comprehensive Plan, 2011-2015” (17), which provides the context for its health homes submission to the CMS. It’s as if the policy elite in public mental health can say nothing that might be construed as an attack on the biomedical model. One might conclude that, despite what they know to be the facts, they hold to a steadfast belief in the ultimate efficacy of neuroleptics, particularly the atypicals. Yet, while they won’t connect the dots to the loss of life expectancy, both the State’s plan and the NASMHPD do acknowledge the link to metabolic illnesses. In fact, in the final section of its study report, the NASMHPD makes the following pertinent recommendations to provider agencies:
• That there [be] consistent monitoring of individuals receiving psychotropic medications … [and that]
• Whenever possible, avoid use of medications that are more strongly associated with … obesity, diabetes and hyperlipidemia…”

METABOLIC SYNDROME & PSYCKES

In the “Goal Based Quality Measures” section of the State’s health home plan, there is reference to the former but none to the latter. The rationale for the State’s response to both is probably to be found in a recently completed demonstration project conducted by SOMH with 18 New York City private voluntary hospitals during CY 2011, “Reducing Use of Antipsychotics with High-Moderate Risk of Metabolic Side Effects in Individuals with Cardiometabolic Conditions” (18) Data from the project was collected via SOMH’s PSYCKES system – Psychiatric Services & Clinical Knowledge Enhancement System for Medicaid (State bureaucrats have a thing for tongue-twisting titles and acronyms) — which, as per its website, is a “web-based portfolio of tools designed to support quality improvement and clinical decision-making in the New York State Medicaid population” (19). One can assume that medication monitoring data will continue to be compiled by PSYCKES. To me, that’s a remote and bureaucratic procedure, and I would be prefer that all prescribers be obliged to make use of the Metabolic Syndrome Monitoring Protocol, which I described at length in a blog posted on another site in March of last year and reference below (20), and which was developed by the American Diabetes Association in 2002 (21). But, as the results of the PSYCKES Demo clearly indicate, maybe you can’t oblige M.D.s to do much of anything.

In short, medication prescribers at 18 hospital-based mental health clinics were asked to “convert” at least 30% of all patients receiving atypicals and who were exhibiting metabolic signs and symptoms to other, presumably less problematic neuroleptics over the course of CY 2011. It is important to note that most if not all of these hospitals and their clinics will form part of the several health homes that will serve New York City. At year’s end, the average rate of conversion approximated 25%, but that appeared to be largely attributable to the conversion rates achieved by the 7 hospitals that scored at the 25% rate or higher. Two hospitals converted none; 3 converted less than 10% of their patients; and only 6 attained the 30% targeted rate, with 2 scoring better than 60% (18). So there we have it … the facts are known but the response is, at best, mixed and certainly inadequate. Accordingly, the State is not about to jeopardize its standing – and its Medicaid funding – with CMS by posing for itself a QA standard it could not meet within the next several years, if ever. Which confirms for me a contention I have been making since I started blogging a year ago, that the issues at hand require not clinical but political resolution and call for the development of a peer/survivor civil rights movement. More immediately, it validates my tactical suggestion that health home enrollees, together with their practitioner counterparts, be trained as health care advocates. Comments welcomed.

GUERILLA TACTICS & CONCLUSION

Finally, those guerilla tactics. Nothing illegal but just not officially sanctioned.
The first involves training. The NASMHPD recommends that each State establish and maintain the capacity to train the mental health staff charged with operating these integrated health care programs (16). New York State has fulfilled that obligation with its care management staff, particularly those who work in New York City, since the inception of case management in the State over twenty years ago. I assume the State will continue to fund the training program for new care managers housed at Hunter College. However, it has not done the same for the professionals who staff mental health clinics, most of which are under the auspices of non-profit agencies. Now it will have to ensure training opportunities for them as well as for those staffers from the medical side of the health home provider networks, many of whom will have had little experience working with enrollees presumed to be mentally ill. It’s not clear from its CMS proposal what the State’s training plan will be or what resources it will employ to ensure that staff get the training they’ll need to work effectively. In the event the State has no plan or that it proves inadequate, I’ve detailed above the conjoint training I believe would be useful for staff and enrollees in an integrated health care system. Providers should feel free to use all or part of it and adapt it in whole or part to meet their needs.

Secondly, training should be in line with specific programmatic objectives, which should include the following:
• Ensure staff and enrollee orientation to the health home and to the member agencies that comprise its provider network; the latter will be complex and bureaucratic and will require study and a map to differentiate its members and the services each offers;
• Closely monitor enrollees’ access to primary and chronic health care to ensure they get the care they need;
• Closely monitor the results of enrollees’ metabolic screenings, particularly those that reveal onset in enrollees of metabolic signs and symptoms;
• Promote the development of collaborative relationships between staff and enrollees to ensure they work as a team to achieve the preceding objectives. Specific attention must be focused on securing reductions in the dosages of prescribed neuroleptic medications or changes in the medications themselves should enrollees be suffering from metabolic ailments, particularly diabetes or cardiovascular illnesses, or in the event metabolic signs and symptoms arise.
• Promote enrollees’ recovery, whether recovery is defined as liberation from the mental health system and/or re-integration into the community and into a community-sanctioned role; towards which end, identify peer/survivor-led organizations, develop working alliances with them and help enrollees integrate these organizations into their social support work network (22).

Lots of work, with perhaps little support from official State and health home network entities. Just remember, “Don’t mourn, organize!”

REFERENCES:

1.- Gianakali, “Medical Compliance? Adherence? Screw That. My MDs Are My Partners,” January 30, 2012, http://beyondmeds.com

2.- NYSDOH, “The Quality Measures for Health Homes,” January 30, 2012, http://health.ny.gov/health_care

3.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 2, The Imperative for Health Care Reform,” October 1, 2010, http://www.omh.state.ny.us/

4.- Choe, J.Y., et al, “Perpetration of Violence, Violent Victimization and Severe Mental Illness: Balancing Public Health Concerns,” Psychiatric Services, February, 2008, Vol. 59, #2, pp. 153-64

5.- Koop, C.E., “Adherence to Medication,” New England Journal of Medicine, August 4, 2005, pp. 487-497

6.- Carney, J., Frankel, A., Laporte, H., Brathwaite, D., Ring, N., “Utilizing Dialectical Behavior Therapy to Treat Impulsive Aggression in Forensic Clients with Serious Mental Illnesses in an Out-Patient Clinic,” 1999

7.- Carney, J., “Outpatient DBT Treatment for Forensic Clients,” Currents, NASW, NYC Chapter, Vol. 48, #5, February/March, 2004

8.- NYSDOH, “NYS Health Home SPA for Individuals with Chronic Behavioral and Medical Health Conditions – SPA # 11-56,” September 28, 2011, http://www.health.ny.gov

9.- Social Security Administration, “State Option to Provide Coordinated Care Through a Health Home for Individuals with Chronic Conditions,” http://www.ssa.gov/OP_Home/ssact/title19/1945.htm#ftn490

10.- Carney, J., “Ask Questions … Get Answers, II – Training Behavioral Health Consumers and Case Managers as Co-Equal Primary Health Care Advocates: Summary of a Comparative Study, September, 2008 – March, 2010,” October 6, 2010 & February 2, 2011, www.behavioral.net

11.- Elliot, T.S., “Burnt Norton,” Quartet No. 1, from Four Quartets, Harcourt Brace, New York, 1943, 1st ed., and www.tristan.icom43.net/quartets

12.- NYSOMH, “Cardiometabolic Risk: What Is It and What Can I Do About It,” brochure, 2012

13.- Jung, C.K., Modern Man In Search of a Soul, (1933), Routledge Classics, London & New York, 1955, English translation

14.- Carney, J., “Communicating With Your Doctor: A Self-Advocacy Primer,” powerpoint presentation, 2008, 2011, and “Communicating With Your Doctor: A Training Guide to Self-Advocacy,” July, 2011

15.- American Heart Association, “Heart Disease and Stroke Statistics – 2011 Update,” December 15, 2010, http://circ.ahajournals.org/

16.- National Association of State Mental Health Program Directors (NASMHPD), “Morbidity and Mortality in People with Serious Mental Illness,” October, 2006, www.nasmhpd.org

17.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 4, Public Mental Health System Highlights,” October 1, 2010, http://www.omh.state.ny.us/

18. NYSOMH, “GNYHA-PSYCKES Quality Collaborative: Reducing Use of Antipsychotics with High-Moderate Risk Of Metabolic Side Effects in Individuals with Cardiometabolic Conditions,” powerpoint presentation, January, 2012

19.- NYSOMH, “About PSYCKES,” http://www.omh.state.ny.us/omhweb/psyckes

20.- Carney, J., “Helping Consumers Add Years to Their Lives, II: The Metabolic Syndrome Monitoring Protocol and Other Tools,” March 4, 2011, www.behavioral.net

21.- Newcomer, J.W., Haupt, D.W., “Metabolic Screening & Monitoring Form,” 2006, Compact Clinicals, Kansas City, Mo.
Also c.f. Appendix, NASMHPD study, 2006.

22.- Carney, J., “Answers vs. Questions: Do We Even Need a Mental Health System?”, October 6, 2011, www.behavioral.net

So why has Open Dialogue gained an almost viral appeal, especially among peers? One reason is the extraordinary outcomes reported in Western Lapland, Finland, by the group of practitioners.  During a 20-year period utilizing this approach, the frequency of schizophrenia in that region went from one of the highest in the world to one of the lowest (Seikkula, et al, 2006). These results were achieved by using a community-based, social network approach for young persons experiencing their first psychotic episode. I think, however, more than the treatment aspects, it is the philosophy underlying Open Dialogue, which is most appealing to persons with lived experience.  In fact, Dr. Jaakko Seikkula, one of the developers of Open Dialogue, has emphasized that it is a philosophy, not a program.

This distinction between a program and a philosophy may seem esoteric to we Americans who seem to focus on reproducible, manualized protocols. In contrast to most professions, we with lived experience have had a deep mistrust of programs such as PACT (Program in Assertive Community Treatment), which insist on fidelity to a single model. In fact, a long-term approach called PACE (Personal Assistance for Community Existence) (see Fisher and Ahern, 2001 for a comparison of PACT and PACE) and an acute approach called emotional CPR (www.emotional-CPR) have been more appealing to peers because they are based on the principles of recovery of a life. I think that an approach based on principles rather than programs is more appealing to those of us going through recovery because it allows us to exercise agency and experience empowerment. It is my conclusion that empowerment as reflected in having a voice in the decisions affecting one’s life is the most important element of recovery. Programs and protocols, on the other hand, intrinsically prevent the recipients from developing agency and empowerment.

Dialogue has slowly been gaining presence in the US in other ways. At the very time that professionals in Finland were developing Open Dialogue, peers started using a dialogical approach in the US to improve communication between groups having difficulty understanding each other’s world-views. I personally was engaged in a series of such dialogues sponsored by the New York Office of Mental Health (Blanch, et al, 1993) between professionals with lived experience and psychiatrists. SAMHSA has also carried out a series of such dialogues (www.samhsa.gov). David Bohm an eminent physicist, conducted a series of dialogues in the 80s to help all concerned gain a deeper understanding of the implicit levels of reality (Bohm,1996).

So what is the philosophy at the heart of Open Dialogue? The principles of dialogue date back to Plato, Martin Buber, and Paolo Friere. I believe the essence of dialogue is the creation of a space between people for free, mutual, and creative generation of new thoughts. According to the Finnish psychologists, psychosis is the result of a person retreating into monologue, or their own world. I can relate.

When I was experiencing retraumatization from an unsuccessful love relationship and deadening research, I retreated into complete monologue. I was so disappointed by the world of our war on Vietnam and mechanistic descriptions of behavior, that I stopped speaking altogether. I was hospitalized in Bethesda Naval Hospital and was mute for over a month. Medications did not touch my refusal to speak. In fact they caused me to retreat even deeper.  I only felt safe to emerge from my monologue when a corpsman, the lowest ranking member of the team, and I developed a nonverbal language of our own.  We created a dialogical space between us, which has been described by Dr. Peter Rober (Rober, 2005; Rober lecture, 2012) as “a space into which life can come.” This is the space that I believe our peer movement has been creating on a national scale through advocacy for recovery. Our collective lived experience has taught us that the essence of recovery is being able to live a free and fulfilling life in the community – a life in which we are the authors not the subjects of our destiny.  I would call this approach creating dialogical recovery space, which enables our life to come more fully into our lives.

These liberating life forces of dialogical recovery, however, face heavy resistance from the dominant, narrowly applied medical model. The medical approach as practiced by my father and his generation of doctors was more respectful of the patient’s participation in their healing. Without the high-powered medical technology, these humble doctors would say that doctors dressed the wound, but the person’s own powers healed the wound. I am not opposed to modern technology and medications used sparingly. In fact, penicillin, partly through my father’s research, saved my life when I was a year old. But present day health care professionals have the arrogance to think that they cure illnesses. Whether in mental health or physical health, medications can help relieve distress, but the healing ultimately must be through the coordinated agency of the person’s whole mind/body self. In mental health, this arrogant attitude leads to the imposition of a single story of so-called “chemical causation” of emotional distress on the whole society and the conviction that only a medication program is needed to correct this imbalance. I believe this model of so-called reality is perpetuating monologue, and thereby is keeping many persons in distress in their own world. I call this dominant explanation of emotional distress the “monological medical model.”

The following table shows the similarities in the principles of the recovery (Ahern and Fisher, 2001; www.SAMHSA.gov) and the principles of Open Dialogue philosophy. The table also shows how much the monological medical model contrasts with these other sets of principles:

See table:

In conclusion, I would suggest that the shift to a recovery-based community healthcare system could be greatly facilitated by the adoption of a dialogical recovery philosophy. This would mean an infusion of dialogical principles into all facets of daily living. This might be best carried out through the engagement of all the members of society in various sized dialogues, covering a variety of topics of great concern. In the healthcare field, for instance, we need much more dialogue between persons who have lived experience with mental health, substance use, and physical health issues, psychiatrists, and medical doctors.  This much sought after integration of these separate fields is best done by the person suffering gaining a sense of their own agency. Once the person gains a voice in their life, they can carry forth genuine person centered, whole health planning.

* I use the term Open Dialogue broadly in this article to encompass both the specific practice in Tornio, Finland and adaptations of Open Dialogue in other areas of the world, which technically speaking are dialogical practices. I have used Open Dialogue to include both practices because the US audience is much more familiar with Open Dialogue than dialogical practices. Also it is beyond the scope of this paper to explain the details of the Open Dialogue practice. Therefore, I have focused on the principles of Open Dialogue, which are similar to those of dialogical practice.

References:

Ahern, L., and D. Fisher. Recovery at your own PACE. Journal of Psychosocial Nursing 39:22–32.(2001).

Blanch, A., D.B. Fisher, D. Walsh, and J. Chassman. Consumers/survivors share insights about recovery and coping. Disabilities Studies Quarterly. Spring issue.(1993).

Bohm, D. On Dialogue. New York: Routledge. (1996).

Fisher, D., and L. Ahern. Personal assistance in community existence (PACE): An alternative to PACT. Ethical Human Service and Sciences2(2): 87–92 (2006).

Mackler, D. Open Dialogue. Video on DVD, can be obtained through the National Empowerment Center, www.power2u.org.

Rober, P. Family therapy as a dialogue of living persons. J. of Marital and Family Therapy. 31:385-97. (2005).

Seikkula, J., Aaltonen, J., Alakare, B., Haarakangas, K., Keranen,P., and Lehtinen, K. Five-year experience of first-episode psychosis in open-dialogue approach. Psychotherapy Research. 16:214-228 (2006).

Whitaker, R. Anatomy of an Epidemic. Crown Publisher, NY. (2010).

On my way home I heard voices in my head, and I realised I was over-hearing a discussion that might have taken place in the BBC when they were planning the programme.
‘Sara Maitland wants this guy Phil Thomas in the phone-in.’
Who is he?’
”I googled him. He’s a critical psychiatrist.’
‘Never heard of him. Don’t you mean an antipsychiatrist? I thought they all died off with Laing way back in the eighties?’
‘No, critical psychiatry. They’re a group of British psychiatrists. They work in the NHS.’
‘Hm, he sounds too edgy. We need to balance him; let’s get someone from the Institute of Psychiatry.’

Of course, the BBC is a public broadcaster and has a duty to ensure fair coverage, especially in contentious areas like politics, or football (what Americans call “soccer”). And here lies the problem. The English do not see psychiatry as contentious. There may be disagreements between the proponents of this theory or that theory, but in general they are happy to leave this to the experts. That’s the nature of scientific debate and progress.

So, why did the BBC consider it necessary, in the interests of balance, to involve a senior nurse from a top unit specializing in the treatment of ‘treatment resistant schizophrenia’ to appear on the phone-in? Oddly enough we got on amicably, and broadly agreed about the importance of understanding voices, grappling with their personal meanings, and the value of peer-support groups like the Hearing Voices Network in coping with the experience. What I took away from my unexpected encounter with the senior nurse was that it had more to do with confusion in the BBC’s mind about the status of psychiatry as science. It felt as though they thought that there was something not quite right about saying that many people believed the experience of hearing voices was to do with their life stories, or a deeply spiritual experience. It was like swearing in front of the vicar.

There is a view that the BBC simply reflects the public voice. If that is so, then this is a voice that fails to grasp the reality that psychiatric knowledge is contested, and the cracks in the biological fortress behind which many psychiatrists hide grow wider each day. The scientific, or technological paradigm, is crumbling. Many people inside and outside the profession are raising serious questions about its value. In a recent series of book reviews (1,2) Marcia Angell, former editor of the New England Journal of Medicine, has attacked the orientation and practice of modern psychiatry. The development of Diagnostic and Statistical Manual (DSM) 5 has been severely criticized by the chair of the DSM IV task force (3). Like other biologically based research, molecular genetics has not fulfilled its promise (4). Recent work challenges the idea that differences in brain volume between people with or without a diagnosis of schizophrenia, reflect a fundamental biological difference; quite the opposite, these differences may be related to the use of neuroleptic drugs (5, 6, 7). Technological theory and practice in psychiatry is mired through its associations with the pharmaceutical industry’s marketing strategies (8).

But dear old Auntie, our cosy colloquialism for the BBC, remains anxious not to offend ‘scientific’ psychiatry. In early November 2011, Professor Sir Robin Murray, Professor of Psychiatric Research at the Institute of Psychiatry, was granted a five-minute slot on BBC Radio 4’s Today programme, (its flagship news and current affairs programme – the Prime Minister is fortunate to be granted six minutes), to mark the launch of the Schizophrenia Commission. Sir Robin is setting this up with the help of Rethink, a leading mental health charity here in England. They claim they want to give people in the country a chance to have a say about schizophrenia. However, the last sentence of Sir Robin’s interview gives the game away: ‘We’re not expecting a lot more money, sadly…but I hope now that the brain is open to investigation, and now we can image what’s going on in the brains of people with schizophrenia, then this is the time to put money into research to understanding exactly what’s going wrong.’

Now we have it! Now perhaps you can see what I mean by English madness, this anxious collusion between the voice of the people and ‘scientific’ psychiatry. For fifty years the research councils have squandered huge sums of money in a fruitless search for the biological basis of schizophrenia. Latterly, the drug companies have taken over this role, turning scientific inquiry into a global marketing opportunity. But in England, dear old Auntie continues to peddle the myth of neutral psychiatry, the voice that no one dares to challenge. Our economies are shrinking; the research councils’ grants are being cut, even Pharma is cutting back on neuroscience research, so the BBC grants the Professor of Psychiatric Research at the Institute of Psychiatry an opportunity to campaign for funds in the guise of giving the people a voice about schizophrenia.

One might be forgiven for believing that the grand-sounding Schizophrenia Commission (9) is an official government body. It isn’t. It consists of a hand picked group of thirteen people, including two service users with diagnoses of schizophrenia or schizo-affective disorder, and two Black people, one of whom has schizo-affective disorder. Although its terms of reference seem innocent enough, a curious little graphic says a great deal. For whatever evidence is considered by the Commission it is difficult to avoid the conclusion that the background context, the shared assumptions of those involved in the exercise, is that schizophrenia is primarily a brain disorder.

Watch this space!

References:

1. Angell M. The illusions of psychiatry. The New York Review, 2011, July 14th. Accessed at: http://www.nybooks.com/articles/archives/2011/jul/14/illusions-of-psychiatry/?pagination=false on 6th Feb 2012
2. Angell M. The epidemic of mental illness: why? The New York Review, 2011, June 23. Accessed at: http://www.nybooks.com/articles/archives/2011/jun/23/epidemic-mental-illness-why/ on 6th Feb 2012
3. Frances A. The first draft of DSM-V: if accepted, will fan the flames of false positive diagnoses. BMJ 2010; 340: c1168.
4. Turkheimer, E. Commentary: Variation and causation in the environment and genome. International Journal of Epidemiology 2011; 40: 598-601.
5. Lieberman, J. et al (2005) Antipsychotic Drug Effects on Brain Morphology in First-Episode Pychosis. Arch Gen Psych, 62, 361-370.
6. Ho, B-C et al. (2011) Long-term Antipsychotic Treatment and Brain Volumes: A Longitudinal Study of First-Episode Schizophrenia. Arch Gen Psych 68, 128-137.
7. Moncrieff, J. & Leo, J. (2010) A systematic review of the effects of antipsychotic drugs on brain volume. Psych Med, 40, 1409-1422.
8. Carey B. Harris G. Psychiatric group faces scrutiny over drug industry ties. The New York Times 2008; July 12th. Available at: http://www.nytimes.com/2008/07/12/washington/12psych.html?pagewanted=all
9. http://www.schizophreniacommission.org.uk/

PART I – WHAT MENTAL HEALTH HOMES ARE AND WHAT THEY’RE NOT

On the ground reality is about to trump rhetoric. Whether you subscribe to my definition of recovery as liberation from the mental health system or SAMHSA’s as the capacity to live a self-directed life, New York’s mental health homes are not intended to promote either. The homes are health care delivery systems whose priority is the same as that for all publicly-funded health and welfare programs throughout the country– state and local governments’ financial survival. At the same time, they offer the promise of effective, integrated and coordinated health care for persons who are poor and designated as disabled. Will they deliver?

INTRODUCTION: THE DOORS OPEN

The State’s first wave of mental health homes, which will comprise the bedrock of its reformed public mental health system, has just received retroactive authorization from the Center for Medicare and Medicaid Services (CMS) to begin operating in New York State effective January 1. The State’s own official start date, its “Phase I” commencement, is February 1 (1). That’s when the first thirteen of these “homes”, actually “integrated care” provider networks linked by common cyber-information systems (Health Information Technology (HIT) networks, in bureaucratese), will begin providing treatment and related services to the residents of ten New York counties who meet the eligibility criteria for serious and persistent mental illness or drug addiction. Hence the designation of the homes as “mental health homes”. Many of these eligible individuals – at least 50% by State estimate — will also be suffering from one or more chronic medical ailments (2,3). “Phase I” will be followed by “Phase II”, affecting sixteen counties, on or about April 1, and then “Phase III”, affecting New York’s remaining thirty-six counties on or about July 1. Sometime thereafter, the two other “disability populations” specified in the Affordable Care Act, popularly referred to as Obamacare, as persons with long-term somatic ailments and those with developmental disabilities, will also receive their care via these health homes or provider networks (4).

In accordance with Obamacare and with the State’s revised Medicaid plan (5), developed to address the State’s budget-busting Medicaid expenditures at the behest of Governor Cuomo, all the homes and their provider networks will be partnered with managed care plans, which will have the responsibility to determine county residents’ eligibility for services and decide whether to reimburse providers for services rendered. Phase I’s thirteen homes/ networks are partnered with nine managed care companies which will compete with one another for enrollees. In the near future, all Medicaid-funded health care in New York, as well as in most States, will be “managed”, with all Medicaid recipients obliged to join a managed care plan of their choosing.

Finally, whatever the future of the Affordable Care Act – whether it’s implemented as is or found to be unconstitutional in whole or in part or is eventually repealed or amended by Congress — health homes are now firmly embedded in Medicaid regulations (6), in synch with the incremental nationwide implementation of health care reform, which does not become fully operative until 2014. As per the Act, states have the option to establish health homes as of January 1, 2011. So far as I know, New York is the third state, behind Missouri and Minnesota, to do so(7,8).More, if not all states can be expected to follow. Comprehensive descriptions of health homes and their attendant regulations are contained in the several documents I reference at the end of this blog(9).

I’m devoting time and space to all this because health homes will be the face of the public health care system in this country for years to come, assuming Obamacare is not overturned. They will also constitute the public mental health system in New York State so long as the Medicaid regulations that authorize them remain in effect. In sum, the homes are likely to impact everyone who reads this blog in one way or another. Their stated intent is to ensure access to integrated care – i.e., one-stop-shopping, or access to both behavioral health and primary health care – for those individuals who historically have been faced with systems barriers to requisite health care; and care that is coordinated – i.e., where all providers involved in a person’s care will know what one another is doing. Perhaps most importantly, at least politically, is that the integration and coordination features of health homes are designed to be cost effective – to save money for local, State and the Federal governments(5,6,9). As you’ll see when I talk about the “Goal Based Quality Measures” for the mental health homes in New York, no mention is made of recovery. Allusions are made by CMS and SAHMSA and in the State’s plan to “… linkage to … supports that promote recovery and resiliency …”, but such linkages are not included in CMS’s or the State’s targeted outcomes, designated in officialese as “goal-based quality measures”(6,10,11). After all, New York State’s constitution obliges State government to provide care for persons considered seriously mentally ill, with no stipulation as to the kind of care to be provided. That interpretation has been left to each succeeding generation of policy makers and politicians to decide. And while Cuomo has endorsed the concept of “integrated care” for persons with presumed disabilities – c.f. my last blog on this site and Cuomo’s support for the development of community-based services that conform to the Olmstead decision – his most pressing concern as well as responsibility is to ensure the solvency of State government (12).

Recovery and services that promote the rehabilitation of persons considered seriously mentally will remain under the purview of the New York State Office of Mental Health. As per its 2009 “Patient Characteristics Survey”, approximately 10% of the nearly 90,000 persons enrolled in its out-patient programs participated in recovery and rehab-oriented programs (13,14). Again, the health homes are a new medical care delivery system, firmly embedded in the biomedical model. They are under the fiscal jurisdiction of the State’s Department of Health, which oversees State Medicaid expenditures and is the governmental entity that negotiates with the Center for Medicare and Medicaid Services (CMS), the Federal regulatory agency, for the approval of new State Medicaid initiatives. In order to comply with CMS’s rules governing health homes, New York State’s health homes plan must pursue three primary goals: improving health care recipients’ “experience of care”; improving their health; and reducing per capita health care costs. It must also endorse several key practice principles that will underpin the plan: an holistic orientation of care; coordinated and integrated care; enhanced access to care; quality assurance and participants’ safety; and payment commensurate with services rendered. Finally, persons eligible for enrollment in a health home must have at least one chronic medical ailment, including a serious mental illness or a substance abuse disorder. As the financial carrot to induce the states to undertake the foregoing, CMS will authorize a Medicaid reimbursement rate (FMAP) to participating states of 90% — up from the usual 50% — for the first two years of program operation (3,6). (Ironically, 26 states have brought suit against the ACA, with the Supreme Court expected to hear arguments pro and con in May, declaring the Medicaid expansion crucial to ACA unconstitutional and this financial incentive “coercive”. Everything appears to be on the line[15].)

ORIGINS: HISTORY AND IDEOLOGY

Just to provide a bit of history about the homes, courtesy of the National Council for Community Behavioral Healthcare, health homes have their antecedent in “medical homes”, first developed over twenty years ago to address the complex medical issues presented by chronically ill children. Over time, the medical home evolved to signify a team or interdisciplinary approach to the provision of primary care for all persons with chronic medical conditions, and many states currently operate them. “Health home” is the appellation eventually utilized in the Affordable Care Act (16). Major impetus to integrate behavioral health and primary health care came with the 2006 publication of the landmark, sixteen-state study undertaken by the National Association of State Mental Health Program Directors (NASMHPD), “Morbidity and Mortality in People with Serious Mental Illness,” which raised the alarm at the study’s chief finding, that “Persons with serious mental illness die, on average, 25 years earlier than the general population (17).” The study’s Executive Summary went on to state that “… 60% of premature deaths are due to medical conditions such as cardiovascular, pulmonary and infectious diseases. People with serious mental illness also suffer from a high prevalence of modifiable risk factors, in particular obesity and tobacco use …” As for possible causes, the Summary underscored, among several, “Lack of access to appropriate health care and lack of coordination between mental health and general health care providers.

Closer to home, in articles published in 2009 and 2010, Mike Hogan, New York’s Commissioner of Mental Health, and Lloyd Sederer, his Medical Director, argued for the inclusion of behavioral health in the health homes that were to be a key component of the Affordable Care Act (18,19). They pointed out that as many as 60% of adults receive treatment for mental illness – essentially prescriptions for SSRIs – from primary care physicians, who often feel ill-equipped to do so. Further, persons diagnosed with serious mental illness have high rates of co-morbid medical problems. New York’s most recent “Patient Characteristic Survey” (2009) posted on its State Office of Mental Health (SOMH) website revealed that 50% of all persons who received State or Medicaid-funded services had at least one chronic medical ailment, with half of that number suffering from cardiac disease (20). In health care surveys I conducted from 2006-8 in the case management programs I directed in New York City, half of our 700 clients, all diagnosed with serious mental illnesses, also had chronic medical ailments, with, again, half of that number suffering from metabolic illnesses, principally diabetes and heart disease. More dramatically, our clients’ death rate from cardiac illness – 1.9 per 100 persons – during 2007-9 almost matched that uncovered by the NASMHPD survey – 2.3 per 100 persons – in 2006 and nearly quadrupled the U.S. incidence — .525 per 100 – in 2004 (17,21).

The rationale for mental health homes seems readily apparent to me. In an eighteen-month long three-study we conducted from 2008-10, largely inspired by the NASMHPD study and by our clients’ increasing death rate, we tracked for one year the health care experiences of 100 clients we had trained, conjointly with 50 case manager counterparts, as health care advocates. (C.F. “Ask Questions … Get Answers II — Training Behavioral Health Consumers and Case Managers as Co-Equal Primary Health Care Advocates: Summary of A Comparative Study, September, 2008 – March, 2010”, referenced below [22].) We had several objectives: first and principally, to have clients and case managers work collaboratively, with the clients taking the lead, to improve clients’ access to primary health care; then, to have these informed clients press both their primary care physicians and psychiatrists to monitor their metabolic signs for abnormalities; in which event, to press their providers to take appropriate action, including the lowering of prescribed dosages of atypical anti-psychotics, which had been implicated in the NASMHPD study as one of the factors causing its subjects’ increase in mortality; and finally, to persuade their primary care physicians and psychiatrists to communicate readily with one another and so coordinate their care. The outcomes, based on client self-report and case manager observations, were uniformly positive, with clients, corroborated by their case managers, reporting improved access to health care, improved personal health and satisfaction with their health care providers. With equal uniformity, however, they also reported an inability to get primary care physicians and psychiatrists to communicate with one another. The latter, anecdotally, were less amenable to contact their primary care counterparts, and it fell to the clients and/or their case managers to carry pertinent medical information between the two. We concluded, I believe correctly, that this was a systems issue and beyond the capacity of a single case management program to affect.

Health homes offer the promise of bridging this barrier to effective and coordinated care. Those targeted for enrollment in New York are the almost 1 million current Medicaid enrollees identified in the State plan submitted to CMS “ … as high cost/high need enrollees with two or more chronic conditions and/or a Serious Persistent Mental Illness…”(3). The “chronic conditions” prioritized in the State plan, after serious mental illness and substance abuse disorders, are asthma, diabetes, heart disease and obesity, the latter three the metabolic disorders linked to the decrease in life expectancy for persons diagnosed with serious mental illness. Given my nearly twenty years experience grappling with the fundamental case management issue of care coordination or securing the cooperation of other providers, I am skeptical about the homes’ ultimate effectiveness unless they address the several caveats I’ll posit in this blog. Before I enter that discussion, I’ll describe the composition of the provider network that will comprise the health home that will serve the western half of Brooklyn, an area that fronts New York harbor and has about one million residents, and where I’ve lived and worked for the past 40 years. I’ll also outline the contradictions that I believe the home’s providers will have to confront; hypothesize probable outcomes; and suggest the steps – guerilla tactics I’ll call them – that I would and they could take to address my hypothesized issues.

WEST BROOKLYN MENTAL HEALTH HOME (1)

I know the providers firsthand, since the first steps to establish the provider network – a common electronic health record and information system — were being discussed by the prospective providers when I retired and left the case management program I had directed for seventeen years. The lead provider is a large private voluntary hospital, where I began my career in public mental health forty years ago and where I worked for almost twenty years. It has as an important partner a second large private voluntary hospital that houses the largest Federally-funded family health care center in New York state. Both hospitals also operate psychiatric in-patient units that accept emergency admissions, known in New York as 9.39 hospitals. The seven remaining providers are large mental health/multi-service community-based agencies that operate between them three large case or care management programs, one of which is the program I directed; three large mental health housing programs; and several outpatient treatment programs. Since the geographic area this home will serve contains a large population of potentially eligible enrollees, its provider network will be among the largest in the State.

The fundamental problem affecting this home as well as all the others is its top-down, authoritarian organization and the likely infringement on enrollees’ treatment choices. I’m referring to enrollees’ choice of treatment vs. no treatment, particularly as regards psychiatric care. Of course, the lead provider, as with six of the other Phase I homes, is a hospital, so what else would you expect but a feudal organizational culture. (It should be noted that the remaining six homes also have at least one hospital in their provider networks. It can be assumed that all future health homes will have similar network configurations.) But I really have in mind the total institution, the old State hospital, that the homes are actually replacing, which is why I called the homes “hospitals without walls” when I first wrote about them this past September (23). Their three primary goals are to reduce acute inpatient hospitalizations and emergency room utilization and to secure treatment compliance, particularly as regards medication (3). That last goal immediately calls to mind a blog posted by Giannakali on her Beyond Meds website a week or so ago: “Medical compliance? Adherence? Screw that. My MDs are my PARTNERS” (caps hers) (24). That says it all for me.

The State – all states – has been attempting to reduce in-patient stays in psychiatric units since it began emptying out its large institutions. When the State’s Intensive Case Management program was launched 1988, that was its stated goal and its targeted clients were the those persons considered the “heavy users” of psych hospital and ER services, i.e., those 10% who were responsible for 90% of the State’s psych Medicaid outlay. Those are precisely the same persons – or at least the same identifiers – being targeted today. In truth, the State has achieved some success: 66,000 persons were hospitalized in State or general psych hospitals in 2001, with 60% or 39,000 re-hospitalized within 6 months, reduced to 28,000 persons hospitalized in 2009, with 15,000 or 55% re-admission within 6 months (20,25). Now, of course, it’s taking on a larger goal, the reduction of all in-patient stays, including those due to physical illnesses or injuries. A laudable goal, since the stated intent is to reduce hospitalizations that effective out-patient care will make “avoidable”. The question – and problem – is how that goal is to be achieved.

END OF PART I. IN THE SECOND PART OF THIS POST, I WILL LOOK AT THE ISSUES THAT NEED TO BE ADDRESSED, AND STRATEGIES FOR DOING SO.

References:

1.- NYS Department of Health (DOH), “Overall Rollout Plan,” January 27, 2012, http://www.health.ny.gov/health_care/medicaid/program/medicaid_health_ homes/nys_implementation.htm

2.- NYSDOH, “Chartbook on Disability in New York State, 2006,” Disability and Health Program, http://www.health.ny.gov

3.- NYSDOH, “NYS Health Home SPA for Individuals with Chronic Behavioral and Medical Health Conditions – SPA # 11-56,” September 28, 2011, http://www.health.ny.gov

4.- Social Security Administration, “State Option to Provide Coordinated Care Through a Health Home for Individuals with Chronic Conditions,” http://www.ssa.gov/OP_Home/ssact/title19/1945.htm#ftn490

5.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2011-2015, Chapter 3, Redesigning Medicaid Health Care in New York State,” October 1, 2010, http://www.omh.state.ny.us/

6.- U.S. Department of Health & Human Services, Centers for Medicare & Medicaid Services (CMS), “Health Homes for Enrollees with Chronic Conditions,” November 16, 2010

7.- Minnesota Department of Health, “Health Reform Minnesota: HCH I Health Care Homes,” January 30, 2012, http://www.health.state.mn.us

8.- Open Minds, “Missouri Health Homes Launched January 1, 2012,” January 9, 2012, www.openminds.com

9.- Henry J. Kaiser Family Foundation, “Medicaid’s New ‘Health Home’ Oprtion, January, 2011, www.kff.org

10.- Substance Abuse and Mental Health Services Administration (SAMHSA), SAMHSA Blog, “What is a Health Home,” January 30, 2012, http://blog.samhsa.gov

11.- NYSDOH, “The Quality Measures for Health Homes,” January 30, 2012, http://health.ny.gov/health_care

12.- Carney, J., “More on Recovery & Liberation …”, January 26, 2012, www.madinamerica.com

13.- NYSOMH, “Patient Characteristics Survey, 2007,” http://www.omh.state.ny.us/

14.- NYSOMH, “Personalized Recovery Oriented Services (PROS), http://www.omh.state.ny.us/

15.- Bazelon Center for Mental Health Law, “Amicus Brief in U.S. Supreme Court Defending the Affordable Care Act’s Medicaid Expansion,” February 2, 2012, www.bazelon.org

16.- National Council for Community Behavioral Healthcare, “Partnering with Health Homes and Accountable Care Organizations: Considerations for Mental Health and Substance Use Providers,” January, 2011, http://www.uclaisap.org/Affordable-Care-Act/

17.- National Association of State Mental Health Program Directors (NASMHPD), “Morbidity and Mortality in People with Serious Mental Illness,” October, 2006, www.nasmhpd.org

18.- Smith, T.E., Sederer, L.I., “A New Kind of Homelessness for Individuals with Serious Mental Illness? The Need for a ‘Mental Health Home’,” Psychiatric Services, April, 2009, Vol. 60, #4, pp. 528-33

19.- Hogan, M., Sederer, L.I., Smith, T.E., Nossel, I.R., “Making Room for Mental Health in the Medical Home,” Preventing Chronic Disease, November, 2010

20.- NYSOMH, “Patient Characteristics Survey, 2009,” http://www.omh.state.ny.us/

21.- Carney, J., “Ask Questions … Get Answers: Final Outcomes …”, Powerpoint Presentation, September 22, 2010

22.- Carney, J., “Ask Questions … Get Answers, II – Training Behavioral Health Consumers and Case Managers as Co-Equal Primary Health Care Advocates: Summary of a Comparative Study, September, 2008 – March, 2010,” October 6, 2010 & February 2, 2011, www.behavioral.net

23.- Carney, J., “Mental Health Homes as Hospitals Without Walls: New York State’s Mental Health System Reform,” September 1, 2011, www.behavioral.net

24.- Gianakali, “Medical Compliance? Adherence? Screw That. My MDs Are My Partners,” January 30, 2012, http://beyondmeds.com

25.- NYS Office of Mental Health (NYSOMH), “Statewide Comprehensive Plan 2004, Chapter 4, Utilization of Inpatient Beds,” http://www.omh.state.ny.us/

–Aurora Levins Morales

My heart beat fast as I wrote many of these words. I did the research for this article to try and make sense of this story I carry around with me about being someone who is seen as mad, who struggles with what this society considers a serious “brain disorder.” My hope is that by the time you finish reading my words you will have more tools to analyze this hyper-complicated world around you, tools to find points of connection between people you might never have thought you had much in common, tools to tear apart the psychic walls that keep us from understanding ourselves and one another. Part of building a movement, in this case what we might as well call the mad movement, is the conscious telling of our stories and history. This isn’t my personal story, but one that ties together the larger story of psychiatry and economics in all of our lifetimes. The important part to keep in mind is that it is very much a story in progress and that we all are characters in it. My hope is that we can use this knowledge to raise our collective consciousness and to write the next chapter together with brilliant colors and the visionary fire of our growing mad community. — Sascha Altman DuBrul

The biomedical model of psychiatry, or “biopsychiatry,” rests on the belief that mental health issues are the result of chemical imbalances in the brain. This is actually a very new idea, but in a short period of time it has come to be regarded as common sense by a whole lot of people all over the world. More and more, the belief that our dissatisfaction and disease is a result of our individual “brain chemistry” has been desensitizing many of us to the idea that our feelings and experiences often have their roots in social and political issues. We find ourselves with all this medicalized language in our mouths about neurotransmitters and serotonin that doesn’t actually get to the heart of so many of the problems we see around us. How this came about is important to understand if we are going to change it. In this article I will explain how there were very powerful political and economic forces, here referred to as neoliberalism, which began in the 1980′s, and played a huge role in the drastic paradigm shift in mental health care towards what today is known as biopsychiatry. I will paint a rough potrait for you of the situation, using the example of Depression, in the hopes that it inspires you to explore the story further, and I’ll conclude with some ideas about the emerging radical mental health movement you probably want to get involved in, or at least know about so you can point others our direction.

1980 Was the Year

1980 is a useful date for understanding the recent transitions in our conceptions of mental health and illness. In 1980, the American Psychiatric Association published the third edition of its Diagnostic and Statistical Manual (DSM-III). The DSM, although it was intentionally written in a style that makes it sound scientifically objective, was a creation of one particular school of psychiatrists at a particular point in history with a particular world-view slanted towards the biomedical model.[i] The 1970s were a socially volatile time: the discipline of psychiatry was under attack on all sides for both being oppressive and “unscientific.” Its makers packaged the DSM as scientific and neutral, reframing the concept of diagnosis from a loose and vague set of descriptions based on Freudian psychoanalysis to a detailed symptom checklist. Today, with the massive support of the pharmaceutical industry, it is accepted as the “Bible” of psychiatry and used as a diagnostic tool all over the world.[ii]

1980 was also the year that Ronald Reagan was elected to office in the USA, ushering in what is known as the “neoliberal revolution.” The older “liberalism” has its roots in the 19th century philosophy that emphasized minimal state intervention and free trade. The horrors of the Depression, the specter of Fascism in Europe, and a strong labor movement made the idea of unrestrained free market capitalism less attractive in the 1930’s. The period in history from the 1930s to the 1970s saw the rise of welfare states the US and UK, a philosophy that prioritized social security, public education, and welfare. The 1980s saw the liberalization of trade, business, and industry, massive transfer of wealth from public to private, enormous growth in power of multinational corporations, and the triumph of consumer culture.[iii]

Obviously these are huge topics that require much time and space to truly unravel. Right now I’m just going to focus on one example of the way biopsychiatry and neoliberalism united to affect our lives: the shifting understanding of “depression.” As I intend to show, Western cultures and increasingly the rest of the world, are coming to relate human sadness and distress to an individual’s brain chemistry. While there is absolutely no scientific proof that this is the case[iv], the biopsychiatric world view helps enable big business to maintain power and fuels the needs of the market based economy.
The Birth of the DSM: How Sadness Became a “Brain Disease”

Modern psychiatry has its roots at the beginning of the industrial revolution and it can be useful to see it as response to the massive reorganization of an entire society along market principles which undermined traditional ways of caring for the sick and older support networks and healing modalities[v], but to tell this part of the story we are actually going to begin in the 1940s. At the end of World War II psychoanalysis completely dominated the field of mental health, providing the leading explanations of mental illness and their treatments.[vi] The 1960s were a time of great social and political upheaval that reshaped the landscape of ideas of the self and what health and wellness looked like in society.[vii] By the 1970s, psychoanalytic theoretical schools, and different clinicians, had many different ideas about the fundamental nature, causes, and treatment of mental disorders. There was a growing anti-psychiatry movement that accused psychiatry of using medical treatment mainly in the interests of social control.[viii] There were highly publicized experiments showing the complete lack of reliability of diagnosis made in mental hospitals.[ix] Psychiatry’s legitimacy as a medical field was seen to be in jeopardy. It was at this point in history that the DSM-III was developed.

The DSM-III was an attempt to create a universal guidebook for psychiatric diagnosis. It was written by a school of psychiatrists who saw their mission to rid psychiatry of prejudice and superstition, by turning it into an “objective science.”[x] Their intention was to be scientifically rigorous and “theory neutral,” meaning that it claimed not to presuppose a particular theory or cause of why a patient was mentally ill. The idea was to define disorders on the basis of symptoms and not causes. “It shifted psychiatric diagnosis from vaguely defined and loosely based psychoanalytic descriptions to detailed symptom checklists—each with precise inclusion and exclusion criteria.”[xi] But in its attempt to be scientifically neutral, the DSM-III left no room for any ideas of mental distress that were not viewed as “illness” and “disease.” Furthermore, the idea of “scientific objectivity” put the power for determining well being and sanity in the hands of the psychiatrists, using a vocabulary that while sounding “objective,” was in fact culturally based in Western scientific practice. The new “objective” diagnostic criteria worked better if there were defined treatments for the “disorders.” As it turned out, this was very beneficial for the bottom lines of the pharmaceutical companies, as well as opening the door for a drastic shift in the psychiatric paradigm.[xii]

Let us now turn to the case of “Depression.” The way that the DSM diagnostic criteria for Major Depression was written fails to distinguish adequately between two types of depression: “normal sadness” and “melancholia.” These diagnoses share similar symptoms including “sadness, insomnia, social withdrawal, loss of appetite, lack of interest in usual activities.”[xiii] But the DSM fails to distinguish between normal sadness that has an outside cause, and a depressive disorder that does not. The unwitting result of this effort was a massive pathologization of normal sadness.
The Prozac Revolution

In the 1980’s the development of Prozac and the ensuing explosion in popularity of Prozac-like (SSRI) antidepressant drugs dramatically changed the landscape of treatment for depression. Almost one in four people in the United States were started on an SSRI between 1988 and 2002.[xiv] The drugs were marketed and prescribed for depression, but the shifting definition of “depression” left room for many emotional states that once were considered normal suddenly to be put into the category of pathology. The diagnosis of Major Depression, which used common symptoms such as sadness, lack of energy, or sleeplessness as indicators was well suited for the massive expansion of the market for antidepressant drugs, because it encompassed huge portions of the general population!

Meanwhile, for many people the drugs themselves, at least at first, appeared to have positive benefits. This created a situation where the seeming effectiveness of the drugs ended proving the existence of the “disease” of depression, and generally blurred the lines between happiness, and wellness and functioning in society. Suddenly it became easier and more natural to talk about brain chemicals, rather than social conditions or family issues. And this ability to “treat” sadness with a pill was a defining feature of the period. Anti-depressants seemed to quickly work their way into the lives of many people. Whether they chose to try it or not, taking an anti-depressant became a question hanging in the air, a potential option for them to choose.

In 1997 the FDA approved the use of direct-to-consumer drug advertisements, and suddenly daytime and evening television was flooded with “ask your doctor” drug ads.[xv] “Prozac was one of the first of the new psychopharmaceuticals to sit uncomfortably between a treatment and an enhancement, between a medication and a mental cosmetic.”(Brad Lewis)

The pharmaceutical industry became immensely powerful during this period, and not just financially. It became a force in determining how we think about ourselves and our happiness. The example of depression is an important one. The influence of the pharmaceutical industry extends deep into patient and family advocacy groups, such as the National Alliance on Mental Illness (NAMI), groups that promote the view that depression is a chemical deficiency that requires the use of their drugs. There are now widespread educational campaigns such as National Depression Awareness Day that offer free screenings for depression in universities and hospitals.[xvi] The pharmaceutical industry sponsors much of the clinical research on depression. Industry-academic collaborations are becoming an increasing source of funding for universities, academic medical centers, and hospitals. Never before has this “biopsychiatric” culture, which defines our health and happiness in terms of brain chemistry, been so heavily promoted through the mass media, become embedded in central institutions, and embraced by policy makers.[xvii]
Rise of the Neoliberals

During this same period, an equally complicated paradigm shift was happening in the world of economics and politics. The 1980s saw the rise of neo-liberal economic ideology: the privatization of public enterprises, the reduction of wages by de-unionizing workers and eliminating workers’ rights that had been won over many years of struggle, the elimination of many health and environmental regulations, and the dismantling of social services such as health and education and welfare.[xviii] The consequence of these policies: massive unemployment, underfunded schools, overcrowded prisons and the shrinkage of our social and economic safety nets. Along with all of these political and economic changes, has been the transformation of poverty from a social problem to an individual failure.[xix]

Similar to the ideology of biopsychiatry, neoliberalism uses scientific sounding language that talks about “free trade” and “self-regulation of markets” that on the surface appears to be neutral, but masks an ideology which benefits the powerful and already wealthy; and the two systems work seamlessly together. The notion of a chemical imbalance in our brains easily plants the seeds of doubt in our minds about our own happiness and wellbeing. One of the driving forces of the market economy is dissatisfaction – the market place would not function without a consumer culture that operates on feelings of inadequacy and lack of personal fulfillment. But what if it is actually the society itself, and the toxic world-views we have inherited, that are driving us mad and making us depressed?

“A society that is increasingly socially fragmented and divided, where the gulf between success and failure seems so large, where the only option open to many is highly demanding and low paid work, where the only cheap and simple route to carelessness is through drugs, is likely to make people particularly vulnerable to mental disintegration in its many forms. It has long been known that urban life and social deprivation are associated with high levels of mental disorder. Neoliberal economic policies are likely to further increase their pathogenic effects. By medicalizing these effects, psychiatry helps to obscure their political origin…The social catastrophe produced by neoliberal policies has been washed away and forgotten in the language of individual distress.”[xx]. (Joanna Moncrieff 251-3)

Meanwhile, both the biopsychiatric model and neoliberal economics are global. There is a lot of evidence that, with the help of the DSM and the pharmaceutical industry, the biopsychiatric paradigm is rapidly spreading throughout the world. From Hong Kong to Tanzania to Sri Lanka, Western ideas of mental illnesses — depression, schizophrenia, anorexia, and PTSD are growing, with the resulting, loss of traditional forms of knowledge and understanding of health and wellness.[xxi]

A Growing Movement at the Intersection of Social Justice and Mental Health

So the question becomes: what can we do to change this situation? One of the reasons it is so difficult to discuss is that the situation itself lies at the intersection of all these different fields: from biology to neuroscience, cultural studies, economics, history, and politics. It is very challenging to untangle the social, political, and economic hijacking of what is considered mental health and illness, when these are states we tangibly live with and have to navigate on a daily basis. What is inside us and what is outside in society? How does the language and diagnostic categories that we use to talk about each other affect our understanding of ourselves? It is a multi-layered knot of enormous proportions.

If we are going to do anything to change the mental health system we need to begin by simply acknowledging how fundamentally flawed the current model is – how little room it leaves for alternate views of health and wellness, how it privileges the knowledge of scientists and experts, and belittles the resources of local communities, families and alternative health care practitioners. We need to draw a clearer distinction between the usefulness of some modern psychiatric medications, and the reductionist biopsychiatric paradigm that reduces our emotions and behavior to chemicals and neurotransmitters. We need to talk publicly about the relationship between unhealthy economic policies, the pharmaceutical industry, and our mental health. We need to start redefining what it actually means to be mentally healthy, and not just on an individual level, but on a collective level, community and even worldwide. We need to move away from the ideology of disease and its treatment, to that of public health and disease prevention. We need to look more closely and critically at the root causes of our mental distress, because it is likely that many of the causes come from the same ideology that offers the current biopsychiatric solutions.

When I think about solutions to this mess, I envision a vibrant social and political movement made up of a coalitions of locally based community groups and professionals in the field – people who understand the importance of economic justice and global solidarity and the critical need for accepting mental diversity and not falling into the trap of trying to fit into a society that is obviously very sick. I envision a movement that has the wisdom and reverence for the human spirit and understands the intertwined complexity of these things we call mental health and wellness. I envision a movement that understands the importance of language and telling stories and knowing our history. Because the issues are so confusing and intertwined, I would love to see focus groups of scholars and activists who can help to make relevant theories and histories easier to penetrate for larger numbers of people. I see creative organizing on high school and college campuses to counteract the effects of a popular culture steeped in consumerism and intolerance of difference. I see popular education about depression and the economy: if this article were a theatrical performance of puppets, what would it look like?

Fundamentally, if we are going to shift the current mental health paradigm we are going to need a movement that both has the political savvy to understand how to fight the system, and the tools to be able to take care of each other as the world gets even crazier. I think some of the answers are going to come from revisiting the useful aspects of counter cultural movements that were questioning the mainstream models of mental health in the 1960s and 70s. From humanistic and Jungian psychology to encounter groups and gestalt therapy, from the Feminist consciousness-raising groups, to the more radical aspects of the “human potential movement,” there were many powerful ideas that came from the intersection of Eastern spiritual philosophies and Western psychotherapies and that were informed by the political charged atmosphere of the times and in the 21st century seem to have been virtually eliminated from the dominant dialog in psychiatry and psychology.[xxii] While clearly there were flaws in those young movements that seemingly got crushed in their tracks or channeled into a watered down capitalist friendly New Age market, I think it would be quite a worthwhile project to identify which of their aspects and tools would be useful to embrace in a contemporary radical mental health movement.

I find a lot of inspiration looking at the emergence of the growing community around the Icarus Project. Icarus began as a website in 2002 as an attempt to create an alternate space where people struggling with seriously mental health issues could talk about their struggles and organize local community. It has its roots in the anarchist networks of North America and although it has branched far and wide, the project has maintained it’s radical analysis and is still geared towards those of us engaged in social justice struggles. For those of us who see the critical importance of a radical analysis in understanding mental health, Icarus is an oasis of mad sanity and community. These days Icarus is run by an organizing collective and has many thousands of members all over the world. If you are looking for others to talk about these issues with, organize with, build community with, I suggest starting here: http://theicarusproject.net

Mad Love, Sascha scatter@theicarusproject.net

[i] Lewis

[ii] Watters

[iii] Giroux

[iv] Fabrega

[v] Foucault

[vi] Curtis2

[vii] Curtis3

[viii] Howwitz 101

[ix] Horwitz 98

[x] Lewis 5

[xi] Lewis 97

[xii] Thomas 23

[xiii] Horwitz 210

[xiv] Lewis 122

[xv] Horwitz 185

[xvi] Horwitz 215

[xvii] Horwitz 187

[xviii] Martinez

[xix] Brown

[xx] Moncrieff 251-3

[xxi] Watters

[xxii] Kripal 85

Bibliography

Brown, Wendy. Neo-liberalism and the End of Liberal Democracy

Theory & Event. Volume 7, Issue 1, 2003. Web.

http://muse.jhu.edu/login?uri=/journals/theory_and_event/v007/7.1brown.html

Carey, Benedict “Revising Book on Disorders of the Mind” Nytimes. 10 February 2010. Web. 6 March 2010.

http://www.nytimes.com/2010/02/10/health/10psych.html

Fabrega, Horacio Jr. “On the Postmodern Critique and Reformation of Psychiatry” Rev. of Moving Beyond Prozac, DSM, and the New Psychiatry. Psychiatry 71(2) Summer 2008: 183-196. Print

Foucault, Michel. Madness and Civilization Harper Collins, 1967. Print.

Giroux, Henry A. “Beyond the Biopolitics of Disposability: Rethinking Neoliberalism in the New Gilded Age”

Social Identites Vol. 14, No. 5 (2008) 587-620

Horwitz, Allan V. and Wakefield, Jerome C. The Loss of Sadness: How Psychiatry Transformed Normal Sorrow Into Depressive Disorder Oxford University Press, 2007. Print.

Kripal, Jeffrey Esalen: America and the Religion of No Religion. University of Chicago, 2007. Print.

Lane, Christopher. Shyness New Haven & London: Yale University Press, 2007. Print

Lewis, Bradley. Moving Beyond Prozac, DSM, and the New Psychiatry: The Birth of Post-Psychiatry

Ann Arbor: University of Michigan Press, 2006. Print.

Lewis, Bradley. “Madness Studies.” Literature and Medicine ??(2010): 152-171. Print

Martinez, Elizabeth and Garcia, Arnoldo “What is Neoliberalism? – A Brief Definition for Activists”
Corpwatch.org 1996. Web. 1 April, 2010 . http://www.corpwatch.org/article.php?id=376

Menand, Louis. “Head Case – Can Psychiatry Be a Science?” The New Yorker 1 March 2010: 68-74.

Moncrieff, Joanna “Neoliberalism and biopsychiatry: a marriage of convenience” Liberatory Psychiatry: Philosophy, Politics, and Mental Health. Ed Carl I. Cohen Cambridge University Press, 2008 235-55. Print

Shah, Anup “A Primer on Neoliberalism” Global Issues.org 1 June, 2009. Web 1 April, 2010.

http://www.globalissues.org/article/39/a-primer-on-neoliberalism

“The Engineering of Consent” The Century of the Self By Adam Curtis. BBC 2002 Television.

“There is a Policeman Inside All Our Heads: He Must Be Destroyed” The Century of the Self By Adam Curtis. BBC 2002 Television.

Thomas, Philip and Bracken, Patrick. “Challenging the Globalization of Biomedical Psychiatry.” Journal of Public Mental Health. Vol 4 Issue 3 (2005) 23-32. Print.

Watters, Ethan. Crazy Like Us: The Globalization of the American Psyche. New York: Free Press, 2010. Print

Michael Maes and colleagues have published extensively on the impact of antidepressant medications on brain inflammation. Mice exposed to antidepressants for about 6 weeks do display less brain inflammation when stressed or provoked with a pathogen. There is a parallel literature in humans who have been exposed to antidepressants for 8 weeks. Humans, taking antidepressants for 8 weeks, do show lower levels of systemic inflammation as measured by markers in blood.

The problem is that the data making the case that antidepressants decrease inflammation is based on short term exposure in people and in mice. In the last decade reports have come out on the inflammatory status of persons who have taken antidepressants for over a year. Elevations in CRP, a measure of inflammation, are noted in those taking antidepressants for over two years. Those taking antidepressants over the long term are at elevated risk for Type II diabetes, widely acknowledged to be an inflammatory disease. They are more likely to be obese and exhibit metabolic syndrome, two conditions widely viewed as promoting systemic inflammation. They display lower levels of heart rate variability, another inflammatory marker. Moreover, among those individuals with cardiovascular disease, even after equating on prior levels of depression, those taking antidepressants display greater hardening of the blood vessels, which is the result of systemic inflammation.

While short term exposure to antidepressants decreases systemic inflammation, when taken over years, the opposite occurs. The literature on depression being an inflammatory state offers proof that activation of the immune system in the periphery will result in brain inflammation. Thus, drugs that are associated with strong peripheral inflammation are predicted to induce chronic depression. In fact, the prediction is verified by the facts. The phenomenon of more relapses to depression among those taking antidepressants compared to the unmedicated has been the theme of several publications. This phenomenon was discussed in Anatomy of an Epidemic. It was the subject of publications by Giovanni Fava (1994), Fava & Offindani (2011), and Andrews, Kornstein, Halberstadt, Gardner, & Neale (2011).

The CDC reports that 14% of the 11% of Americans taking antidepressants have been taking them for a decade or longer, while 60% have taken them for two years or more. For these individuals, the prevalence of inflammatory diseases such as Type II diabetes, cardiovascular disease, cancer, and chronic depression are likely to increase. Ironically, the very condition for which they are taking the antidepressants, depression, will also be exacerbated.

Fortunately, more consistent ways of decreasing systemic inflammation are available. In coming weeks, I will be blogging on these other more salubrious alternatives.

Andersohn, F., Schade, R., Suissa, S., & Garbe, E. (2009). Long-term use of antidepressants for depressive disorders and the risk of diabetes mellitus. American Journal of Psychiatry, 166(5), 591-598.
Fava, M. (2000). Weight gain and antidepressants. Journal of Clinical Psychiatry, 61 (Suppl. 11), 37-41.
Hamer, M., Batty, G. D., Marmot, M. G., Singh-Manoux, A., & Kivimaki, M. (2011). Anti-depressant medication use and C-reactive protein: results from two population-based studies. Brain, Behavior, and Immunity, 25(1), 168-173.
Kivimaki, M., Hamer, M., Batty, G. D., Geddes, J. R., Tabak, A. G., Pentti, J., et al. (2010). Antidepressant medication use, weight gain, and risk of type 2 diabetes: a population-based study. Diabetes Care, 33(12), 2611-2616.
Licht, C. M., de Geus, E. J., Zitman, F. G., Hoogendijk, W. J., van Dyck, R., & Penninx, B. W. (2008). Association between major depressive disorder and heart rate variability in the Netherlands Study of Depression and Anxiety (NESDA). Archives of General Psychiatry, 65(12), 1358-1367.
Raeder, M. B., Bjelland, I., Emil Vollset, S., & Steen, V. M. (2006). Obesity, dyslipidemia, and diabetes with selective serotonin reuptake inhibitors: the Hordaland Health Study. Journal of Clinical Psychiatry, 67(12), 1974-1982.
Shah, A. (2011). Antidepressant use linked to thicker arteries. Emory University. Atlanta, GA. Retrieved 12/12/11 from http:shared.web.emory.edu/whsc/news/release/2011/04/antidepressants-linked-to-thicker-arteries.html.

The voices of me

It was asked of me and I subsequently felt inspired to contribute to an anthology about me and my voices, two things which are so separate and yet so together. How did I survive them and yet how could I not? I needed them as much as they needed me and together we created me, a fragmented child who became a fragmented adult who finally became whole, became me, became Olga.

I heard my first voice as a very young child, perhaps around four or five, I don’t recall. I do remember however the first time I heard him. I was sitting playing alone inside our house and he called my name very loudly. He had a deep voice which almost had an echo to it and it seemed to come from above and around. I didn’t recognize the voice and was immediately curious as to who this strange person was calling my name and started to search for him in the house. I searched everywhere and every time he called my name I would shout back “yes I am here!” or something to that effect. I didn’t find him, and I became increasingly frustrated and distraught and in the end I became very angry at his ability to hide himself so well that he was impossible to find.

Over the next period of time he kept appearing as just a voice and very quickly I accepted that he was invisible, that he was good and that he was there to help me. I also soon realized that he had the ability to, in my then small world, predict happenings and situations which I could then avoid or cope with, with his help. As time passed he became my comforter and my guide in this labyrinth of emotional turmoil which was my home and came to play a big role in surviving those early years of my life. I called him God.

My second voice who has perhaps always been there is a small child, a little girl, my little girl. Always with her back to me always alone, so very, very alone. Dressed mostly in red she never talks only screams and even then not that often. Raising her head she can scream out loud – the agonizing pain of utter abandonment – yet she never has and never will be heard. Sometimes she lets out a few shuddering sobs. Otherwise she sits there cross-legged; her back to me huddled over some secret activity which only she knows. I know she is a part of me, a secret part and I do so want to unlock that secret, yet I don’t know how to reach her, she sits there so close I can almost touch her, yet she is so far away I might as well be on another planet, where a lifetime of travel will not bring me closer. She is my enigma, the big question in the tapestry of my life, my why, why… this?

My third and fourth voice came later, much later; they came when I threw out God, why did I throw out God?  I threw out God and they came in, sneaking in like thieves in the night stealing my soul, filling my world with blackness and hatred. A seeping black pool of hatred and destruction causing me to burn my tongue and cut my arms, only that again was later much later. They were my failures, my guilt, the living proof of how spectacularly I had failed. Never good, always bad, a constant reminder of my dirt, the dirty little girl who became the dirty filthy me. Slowly or perhaps it was in reality quite quickly, they poisoned me, black tendrils stretching out moving in going deeper and deeper and then… they were stopped. They were stopped by the very thing they themselves were, failure. By being my failings, they themselves were ultimately doomed, doomed to fail in their mission, a complete poisoning of all of me. For somehow a fragment or fragments of me remained intact, were immune to their poison, remained clean, serene, strong and powerful and wouldn’t let their poison in.

They have been my constant companions always there but not always present. Sometimes they are filling my head taking over my tongue saying words I do not recognize. Recognition in the sense that that is not me, it is a stranger borrowing my mouth my tongue saying terrible things which hurt cutting like a knife into the soft part of me. Or worse, spreading out, hurting those whom I hold so dear which in turn hurts me again and again as the pain reverberates and comes back to me like waves. Other times their blackness is far, far away, covered by layers of calmness, strength, love and happiness trapping them so their black tendrils cannot escape. On those occasions they have no control, they are themselves controlled by me, a united me and their power is reduced to nothing. So how is it possible that they can still sometimes spew out black tendrils? I like to think they are an echo, sometimes a loud echo but just that, an echo, nothing more. Yet I know they are my past impinging on my present, distorting and trying to poison, always poison.

Then there’s the joker, he’s a late comer, arriving long after all the others have been here for what seems like an eternity. He’s actually quite wise in his funny sort of way and he is also the finisher, the ender of poison. I know when he comes, summarizing the whole episode in his joking jokes sort of way, that he is the bringer of peace and I welcome him. I know also that for the outside world, he is the most scary. He makes me laugh and the outside world interprets, they don’t understand and hearing my laughter their interpretation moves in, “she is insane,” they say, “lock her away”.

I like his jokes. By joking he disperses the black tendrils, making them dissolve, withdraw and neutralizes their poison. His ironic but oh so true jokes go straight to the center drawing little blood in his precise interpretation of reality, my reality. And when I understand his message, because I don’t always, he has used few words where I would probably have had to write a whole chapter to see that light. More often than not, he makes me see the absurdity of this whole episode, how completely small and insignificant it is when measured within the perspective of the rich tapestry that is my life. That episode he highlights was but a speck which for a short while was allowed to fill and opened the door to the black tendrils of poison. He shuts that door.

Finally… almost, we have the mumblers, the murmurers, never saying anything clearly always just outside the clarity of words. They are a group of an indeterminate size sometimes huge and threatening other times far away like storm clouds gathering at the edge of the horizon. They are the warners, warning of dark times approaching. Their approach can be at times so subtle that suddenly they are there like a flash storm catching you unaware, other times their murmuring is like a far distant thunderstorm rumbling getting ever closer, warning of the impending storm.

Their mumblings are confusing, their message unclear but always they are there at times of weariness or mental exhaustion, confusing me, distorting the meaning and the words of the external world. Others voices start to include dark and sinister messages and motives, hidden motives, making those people shadowy and threatening just like those storm clouds gathering. Words of kindness twist and become cruel and harsh, echoing the past where things were never as they seemed. Why should others be kind now, when I am big, strong and oh so grown up, yet cruel, using and abusing me when I was a little girl? Shouldn’t it be the other way round, shouldn’t it be not at all – do you see now? How they can confuse?

Last, but really the beginning, God came back, only now he is not God at least not in name. He is the good one, the good voice and with his return everything changed, the balance of power, the balance of control. With him I began the journey of union, uniting the fragments joining each piece of me, to me, to finally become whole, become me, become Olga.

Next week I will come with my recovery journey titled My Voice, The Voice Of Me.

The organization I worked for did not make it possible to explore and develop these and many other thoughts and questions. Maybe it would be possible to establish a foundation and in that structure realize these ideas?

FROM THOUGHT TO ACTION

An extraordinary chain of events, where my at-that-time complete ignorance of economy, organization and bureaucracy, together with something you might call conviction, luck and immense stubbornness, led to the creation of the Family Care Foundation in 1987. We received some help from the National Board of Health and Welfare in Sweden as well. Some of the family homes I had collaborated with in the project joined in, and we are still working together.

In the first years, we were two trained social workers and five family homes who worked together with the clients. One of the social workers would be talking to the family home (what we now call supervision) and the other would talk with the client (what we now call therapy). In between, we would sit together in the kitchen of the family home and talk about how they were getting along together.

This is what it looked like, and even though the organization is much larger nowadays, many of the ideas are still the same. That is to say, that it is good to be talking to both the family home and to the client, since it makes you less likely to be caught into one single way to “understand and look at the world”. The family home and their “ordinary” life remain the base of our work, but we have extended our professional rooms and work and encourage others to take part. Nowadays, we meet not “just” in the family home, but also at our office where we have team meetings including the client, her/ his family, the therapist, the family home and their supervisor. Regularly the team is expanded to include other important people who might be useful, as for example other professionals and friends.

Summer party and Christmas party are events taking place every year where all of us gather for a day to celebrate and share impressions and experiences. At this time we also invite former clients and their families. Twice a year all family homes and the staff meet for a weekend to talk about and evaluate the collaborative work.

Nowadays we work not just with adults, but also with children and youngsters. Most of the children come to us with at least one parent, many youngsters come alone, but we always engage their own family in the work. Our clients come to us since they are having such huge difficulties in life that they do not have the strength to cope on their own. Battering, confusion, drug addiction, powerlessness, feelings of unreality and terror is what they use to act or talk about at their first visit with us. Many people come to us in a crisis that has lasted for a long time and they describe how they are running out of strength, but also running out of hope for something better.

THE THERAPEUTIC CONTEXT

Family Care Foundation grows from the idea of combining a so-called ordinary life with a therapeutic knowledge. The client is both a family member in the family home and a client in the therapeutic room. Both in how she relates to herself and to how we around her relate to her. She is not the one or the other, she is both and.

The same is true for the family home. They are both a so-called ordinary family and participants in a therapeutic context. They participate in teams, big meetings and their own supervision, sometimes as colleagues of the professionals and sometimes as supervisees.

The professionals are both supervisors and therapists. In one piece of work we are the one, in another we are the other. However, we are also ordinary people with our very own experiences. This creates both possibilities and difficulties. Sometimes the one overshadows and sometimes the other. There are days and moments when just about everything seems possible and there are days and moments when you are ready to shut up shop.

Being in the world and in the therapeutic work means at any given moment asking your self: What am I doing here and what is my task? The human being unfolds in interplay with others, but also in a room of her own. She is created in relation to the other, as well as approaching her own “I”.

For nearly 25 years I have been working together with several people at Family Care Foundation in Gothenburg. Our shared vision is to try to create a good space for people to be in, to combine a so called ordinary life with a therapeutic thinking and being. Through the years the practical work has generated new knowledge and a new understanding, which we, in different ways, try to apply in our different rooms.

THE FAMILY HOME

The word family home means a kind of foster home, a family who is part of our organization and who opens their home and life for one of our clients, or sometimes for a parent and her or his children. We prefer the word family home, since it is what we in a way “offer” to the client, to take part in an ordinary family life for a while, instead of being at an institution or a hospital. Most of the people we work with do not go back to an institution or a hospital, but of course it sometimes happens. The clients used to stay for a few years, sometimes a bit shorter and sometimes a bit longer. We work with people whom have been in many institutions before coming to us. Many of them are described as “nearly hopeless” , but I am happy to say that they are not.

Tom Andersen ( Jensen, 2008) says: “Sometimes …both therapists and researchers try to create a common dominating back-ground, a consensus background. This is meant to contribute to firm and objective evidence-based knowledge, in that the therapist and researchers try to remove all of their personal issues from the background they are using as a basis for understanding. I do not only think it is a misunderstanding to believe that this is possible, but also that it is an unfortunate misunderstanding.”

This I have experienced over and over again, especially in the psychiatric world with its concepts, diagnosis and wordings about people´s ways of behaving. As if there was one objective truth. And as if the professionals didn’t influence and get influenced by the other. It is of outmost importance to be clear about that what I say is my understanding that I base upon my perception of the world and about my own experiences in life. At times my understanding corresponds with the other, but not always. It may be that the other person and me see, hear and experience things in different ways. Then – that is the way it is. Then each of us has our own understanding without the one or the other being the owner of the truth.

Language has a fundamental importance for our coming into being and our way of understanding the world. One part of my professional responsibility is to try to create a culture where we are given the opportunity to talk to each other and use language in a way which is possible to understand and make useful. In the context where I work it means to facilitate communication between the family home and the client and those around them, a language which is including instead of excluding, where people have an opportunity to recognize and participate.

When we refrain in our work from using manuals, tables and other “technical stuff,” I and the others around together create a shared work place with its different stories. What goes into that space? What knowledge and experience is conveyed? How does this happen? Not to use psychiatric diagnosis, technical models and concepts in the therapeutic work has consequences, not only for those called clients but also for me as a therapist. Together with the other, instead of watching and observing, I need to create a space for feelings, thoughts, reflections and shared creativity, a context that influences and touches both of us.

Participation and sharing are important issues in our organization, and a structure to lean on. It is not done in a second and it takes a lot from each of us, but it is worth it. When talking to people involved in our shared work, no matter if it is family homes, therapists or clients, they tell me about the importance of not being alone, to know there are others beside and to know we have a common base, a shared vision.

References

Andersen T (1996) Words are not innocent. In Kaslow, F W. Ed. The handbook of relational diagnosis and dysfunctional family patterns. New York: John Wiley & Sons Inc.

Håkansson C (2009) Ordinary Life Therapy. Taos Institute Publications, USA

Jensen P (2008) The Narratives Which Connect. Tavistock Clinic, UK