Tuesday, June 22, 2010

The Emperor's new clothes

This excellent Tracking the American Epidemic of Mental Illness - Part II by Evelyn Pringle, comes eerily close to my own perceptions of what was going on with the day program that Chris was enrolled in for two years in the European country where we live. When we joined the program in 2004, it had already been operating for ten years and was touted as a success - by the psychiatrist who ran it. As with the Portland Identification and Early Referral (PIER) program, there was no follow-up as to the real outcomes of the young people who went through Chris's program. Chris has been out of the program for at least three years, and so far we have received no follow-up asking us how he is faring. While he was in the program, we were aware of no statistics on the outcomes of the previous ten years. Like the little boy who saw that the emperor had no clothes, we were told to believe in the miracle that was happening.

Readers of this blog will know that Chris was not getting better during the time he spent in his program. My pleas to individualize his treatment, to begin by at least acknowledging that that the drugs weren't helping him, fell on deaf ears. I felt the program was off-base in getting at the real problems of psychosis. The program believed in the second generation antipsychotics, particularly clozapine. I have my own reasons for believing in a financial incentive as the reason the program particularly pushed clozapine, even though it was, by then, a generic drug.

Here is an extract from the Evelyn Pringle article.

An August 2008 article, by Charles Schmidt in Discover Magazine, highlighted the PIER program with a byline that stated: "A new mix of therapy and medication may stave off psychosis among teens at risk."

Schmidt discussed the case of Camila (not her real name), who entered the program in September 2001, when she was 14. "Camila and her family stuck with PIER for the four-year treatment program, which ended formally in 2005, and still keep in touch with counselors there," he reports.

However, "Camila's health still hinges on antipsychotic medication," Schmidt says. "In the summer of 2007 she went off the drugs for a spell and her strange feelings returned."

He notes that her reliance on antipsychotics raises issues. "On the one hand, it shows that the threat of psychosis hasn't really been removed, it's just been held in check."

"What we hope is that the benefits of treatment will be lifelong," McFarlane says in the article. "We don't have any empirical evidence to support that yet, but what we've seen is that young people who still haven't converted to psychosis after about three years of our treatment don't seem to be at much risk."

While he suggests that over time, some patients may be able to go off medications, McFarlane acknowledges that PIER hasn't developed a plan for managing that process, Schmidt reports.

"As to when or if they can go off medication, that's hard to say," he told Schmidt. "I think many of our patients don't feel a need to stop; they certainly don't feel oppressed by it. At a certain point it becomes a personal choice."

A fortune can be made from these life-long antipsychotic customers.


  1. Good Morning Rossa,
    I notice that there are no comments as a result of your recent articles. Just to let you know that reading your blog is one of the first things I do daily. I nod agreement to everything and admire how articulate you are. You are able to express my sentiments, everything you write resonates with my journey with Andrew. Know that you are followed.

  2. Thanks, Liz,
    I make a special effort to have something in front of your cereal bowl to read every day.

  3. Reading this latest submission, after reading many other posts you have offered, it occured to me that if Chris took responsibility for his condition in the manner you have he would no doubt be fully recovered by now.

    Some self examination may be appropriate. Is Chris empowered to take responsibility because he observes you taking responsibility? or, Is Chris avoiding responsibility because you assume responsibility for him?

    A fundamental objective, based upon my own experience, is the transfer of responsibility to the recovering individual where the parent progresses from owning the problem to supporting the child who owns the problem.

  4. Good point. Well, that's the crux of the matter isn't it, taking responsbility. Chris avoided responsibility as a child by looking responsbible. He didn't test himself, he deliberately flew under the radar to avoid having actions taken against him. I can claim some share of the blame there, too, because he only acted as he probably thought I wanted him to. So, he was less than a real person. For the first couple of years of his crisis, his father and I had to step in and take all responsbility because he was, for lack of a better word, incapable. We've all been there. I have dragged him down the road of self-help because he wasn't able to help himself and it might have taken him years to get to figuring it out for himself. We can't afford to go on financially supporting him for year, hence the urgency. Now, I can see it's beginning to pay off because he is taking matters into his own hands more and more and my husband and I are stepping back. He is examining himself and realizing that there's work to be done. It's a long process, though. I started from a better base (so-called sanity) and he is basically reconstructing his childhood and learning to become a personality. I wish it were a shorter process, but on the other hand, I see lots of progress.


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