Opening a Dialogue about Early Psychosis Programs in the US

40
1614

Recently I listened in to a webinar that discussed a number of key issues related to the development of early psychosis intervention programs in the United States and found that it stimulated many thoughts and raised important issues that need more discussion. I sense that we spend time mostly talking to our more like-minded colleagues and friends, but that maybe we should try to open up a dialogue with others, especially when they are acknowledging the need for growth and learning from their experience doing things outside the usual box of traditional psychiatric practices. With this in mind, I’ve collected some of the my thoughts about the evolution of early intervention projects, both potential benefits and some risks.

As a state mental health commissioner and after, I’ve had a long interest in the development of early psychosis intervention services. During my tenure in the state executive position, I worked with a number of community partners to secure $4.3 million from the Oregon Legislature in 2007 to expand the regional Early Assessment and Support Alliance program to about 75% of the state—and today, Oregon has 29 programs (more than the most populous states of California and New York). So when the Schizophrenia Research Foundation announced a webinar to “discuss the paths and barriers to widespread effective care” for young adults and their families experiencing an early psychosis, I jumped at the opportunity to sign up for it.

The webinar was held on March 22nd of this year, and is still available online here. Lisa Dixon of Columbia University led the discussion, and the other members of the panel included Rebecca Farley of the National Council on Behavioral Health, Robert Heinssen of the National Institute for Mental Health, Nev Jones of Felton Institute, David Shern of the National Association of State Mental Health Program Directors, and Andrew Sperling of the National Alliance on Mental Illness.

It is very encouraging to observe the spread of early psychosis programs to many states and communities throughout the United States. The 2016 national “Program Directory for Early Psychosis Intervention Programs” originally developed by Oregon’s coordinating and training project (EASA) and the Foundation for Excellence in Mental Health Care listed programs in 34 states. I believe there are now well over 100 local programs—we are seeing real development in services that strive to give youth and their families the right kind of support “the first time,” our primary advocacy message to the Oregon lawmakers 10 years ago.

I want to share my reactions to the webinar, and I will try to provide a balanced view.  This means I will make reference to things I strongly resonated with and also some comments and omissions that are more questioning in nature than critical.  We are still in a learning stage. I’m particularly drawn to Dr. Chris Gordon’s advice to avoid “pernicious biological certainties” in this work.

The webinar opened with an emphasis on the importance of Coordinated Specialty Care as a framework for understanding the work involved in supporting young people going through a first or early psychosis. This approach seeks to avoid long-term dependency on the “system” as well as chronicity, and it also counters the frequent alienation experienced by youth and their families. While I would have liked to hear more about the paradigm for using psychiatric medications, there was a clear concern about the negative effects of polypharmacy. Similar to Dr. Gordon’s caution about the dangers of certainty, several presenters noted that services are still evolving and that this makes the assessment of fidelity to a model a bit of a barrier to translating the work with 100% confidence.

I would like to have heard more about the research referenced on Duration of Untreated Psychosis. While I have no great doubt that most people can use earlier intervention, there is also evidence from researchers like Martin Harrow and Lex Wunderink that indicate that the type of treatment makes a big difference. Their work seems to indicate that a minimalist approach to using medications, for example, is actually associated with better outcomes, particularly mid to long-term functioning. And there are some, possibly many, who never come to the attention of the mental health system or drop out as quickly as possible, who can do quite well.

There were several issues I think need more discussion (an open dialogue, if you will). One is that diagnosis seemed to be taken seriously as a reliable guide to what is going on with young people. Given the research on reliability and the history of continually expanding diagnoses a la the DSM manuals, I would have been more comfortable with (again) greater modesty and uncertainty here. The use of the term “schizophrenia” is a practice that I have come to believe does more harm than good. I know far too many friends and colleagues who have been labeled with this and given the prognosis of limited functioning for the rest of their lives, and they have turned out to be psychiatrists, psychologists, social workers, nurses and other quite gainfully employed individuals. And they tell me they did it in spite of getting the label of “schizophrenic.”

As I noted above, I would have liked to have heard more about the risk of psychiatric medications. Again, the research is pretty clear that medications, especially taken for longer periods and at higher dosages, produce poorer outcomes. This leads to a concern that “informed consent” practices generally need a major overhaul with high quality research findings informing the process. It would be an interesting discussion to learn more about what informed consent content is being used in the various early psychosis programs. I would advocate for a great deal of openness to the idea that medications are not necessary for most people other than very limited use in crisis situations and that whatever we call psychosis is not clearly a “chronic mental illness.”

Two areas that received scant if any attention were those of trauma as a factor in the development of psychosis. Clearly, a great deal of caution must be exercised in staying away from older, outdated and unproven concepts like “the schizophrenogenic mother” and blaming the family. Yet to pay no attention to whether traumas, subtle and not-so-subtle, may be influencing the youth’s experience seems to avoid dynamics that could be healing if brought into the open. This seems to me part of the genius of the Open Dialogue model—let’s talk about everything that’s going on in the young person’s emotional and developmental dilemmas. Contrary to one statement, symptoms sometimes are not just symptoms but clues, and in some situations, there is even metaphor involved.

The other issue that was barely mentioned was the role of alcohol and street drugs in complicating the picture of early psychosis. One of the first things I learned as a budding alcohol and drug specialist with youth, early in my career, was that the use of street drugs can mimic any mental disorder. Since relatively few mental health professionals are given much information on alcohol/drugs in their training (like me), this set of problems needs much more attention. And I won’t say more other than that about 50% of people who have serious mental health issues also have the “dual diagnosis” of alcoholism, drug addiction or use of drugs that interfere with recovery. It’s not a minor issue.

My comments and reservations do not add up to discounting the great work that is going on. I hope that someday there are programs in all 50 states, not just 34, and that there are literally thousands of these programs not a hundred. They will be most successful if they integrate as many perspectives and as much quality research as possible, even if (and especially if) they take into account studies that may not support traditional models such as the chronic disease concept.

Working with youth and families in a much more caring and concerned way, as early as possible, is certainly the way of the future. We all have work to do.

And part of that work is learning from the Oregon EASA programs. Dr. Ryan Melton, the Senior Research Associate at Portland State University, will be conducting a Mad in America Continuing Education webinar on April 28th to do just that. Registration for the webinar is now open on our website.

I hope that you will join us for Dr. Melton’s discussion of a “one of a kind” historic approach to serving youth and families.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

***

Mad in America has made some changes to the commenting process. You no longer need to login or create an account on our site to comment. The only information needed is your name, email and comment text. Comments made with an account prior to this change will remain visible on the site.

40 COMMENTS

  1. Early intervention, as far as I’m concerned, is causative rather than remedial (or preventative). The propaganda has this running joke about how so many people in the system long term got there before the age of 14. Put a person in the system, and it can become very hard to get them out it. We know that there are instances where an ADHD diagnosis, for instance, led to a schizophrenia diagnosis or a manic-depressive diagnosis. When you’re going after the first episode, here you mean first episode, but of the second (or even third) diagnosis.

    “Clearly, a great deal of caution must be exercised in staying away from older, outdated and unproven concepts like “the schizophrenogenic mother” and blaming the family.”

    Families are often the people who put their family members away in institutions. Not so clearly, the family is one institution that often develops scapegoats of its own. Families locking up family members is another factor in so-called early psychosis that I would consider causative rather than remedial. I’m certain that it must be awkwardly difficult to talk about that “elephant in the room”, nonetheless, I’m also certain that it is there, and that it is not such a fiction as some authority figures would lead us to believe.

    Early intervention usually involves the use of psychiatric drugs to one degree or another. Would that it were otherwise. The effects of psychiatric drugs are, like that of street drugs, also often confused with symptoms of “disease”. I would think that early intervention often has a way of leading the way to much later intervention. Something to consider when approaching the subject of early intervention.

    Report comment

    • I especially agree about the “don’t blame the family” meme. Sometimes, in fact often, the family is a BIG contributor to any of the “mental health diagnoses” that the psychiatric profession has manufactured in order to eliminate the hard work of figuring out what would really be helpful. The Authorities are always spared and the weakest and most vulnerable always blamed. Unless that dynamic changes, there is no “healing” going to happen.

      Report comment

      • In my case my problems with my mom being overprotective did not begin till after my diagnosis and heavy druggings. I don’t blame my parents but the quacks who lied to our whole family and turned my parents against me by telling them I was hopeless.

        Report comment

    • The big question is- what kind of intervention are you doing? Simply drugging the beneficiaries of intervention into drowsy stupidity is obviously not the way to go, but being able to quantify what’s going on can definitely be helpful. I recall an incident of a gent who seemed to be descending into early “schizophrenia”, but was actually descending into early lead poisoning from a cobbled up reefer pipe where the bowl was soldered to the stem; the heat from the burning pot was also vaporizing the solder, which he was also inhaling. A few weeks after ditching the pipe, he was fine- his mood was greatly improved, and the formerly closed curtains on his windows were opened (sign of decreased or eliminated paranoid sensations and feelings). Who knows what would have happened to him without proper intervention? I dread thinking what would have happened to him, had Community Mental Health got their paws on him.

      Report comment

  2. Harrow’s study merely shows schizophrenics are:

    _ 3 times more likely to be in recovery after 2 years,
    _ 8 times more likely to be in recovery after 15 years,

    if they take NO neuroleptics.

    (Harrow, 2007, pdf p. 5, figure 2)

    There is NO study that proves neuroleptics are effective in the long term, and yet this is the STANDARD treatment for over 50 years.

    There is A LOT of studies for compart one neuroleptic to another in the sort term, but virtually NONE to compare a neuroleptic to a placebo in the long-term.

    Neuroleptics are one of the largest scientific scams in all psychiatry: lifetime treatment simply has NO evidence of efficacy, yet it is the STANDARD treatment; almost all research money is invested to compare neuroleptics AMONG THEM, while NONE prove its long-term effectiveness against placebo!

    It’s a ridiculous bullshit, just like the insulin comas that NEVER prove their effectiveness, and that have been used for decades! No science, zero science in that, and they want we take psychiatry seriously?

    You seriously believe that you can “correct” psychiatry? Medicine must get rid of psychiatry as astronomy got rid of astrology. Science demands science, and everything else must be thrown into the garbage: no money for crooks and dealers!

    Harrow, M., Jobe, T. H. (2007) Factors Involved in Outcome and Recovery in Schizophrenia Patients Not on Antipsychotic Medications: A 15-Year Multifollow-Up Study. J Nerv Ment Dis 2007;195: 406–414. DOI: 10.1097/01.nmd.0000253783.32338.6e. http://www.mentalhealthexcellence.org/wp-content/uploads/2013/10/OutcomeFactors.pdf

    Report comment

  3. the use of street drugs can mimic any mental disorder.

    Can you tell us about your experience of street drugs Robert? What actually qualifies you to write anything about these issues- how much money are you earning, to just spew out this crap and spin the literature- yawn.

    MIA please – stop people like this from posting, they need to pass some kind of insight test, rather than just bs spin world… cmon … editors?

    Report comment

    • Drug addiction can be confused with psychosis because psychiatrists essentially test deviance in a very unspecific ways.

      For example, if an addict is brought against his will to a psychiatrist, he will likely have a high score on many PANSS items, because of the circumstances and therefore be qualified as psychotic.

      It is not so much that the addict “mimics” the psychotic, but rather that the psychiatrist confuses them in the same entity: deviance.

      Report comment

    • Robert is correct, “misfitxxx”. Clinicians of all types often mis-identify active street drug use for a whole slew of imaginary “mental disorders’. The DSM-5 contains literally 100’s of such invented labels. It’s one thing to say that Robert is wrong, or question his motivations, but really, what is your criticism? How is what he’s saying here “bs spin world”? Maybe you’re being overly sensitive in regards “street drugs”?

      Report comment

  4. I am ashamed of MIA for printing garbage like “Opening a Dialogue about Early Psychosis Programs in the US.” Considering present treatment that relies 99% on the medical model and drugs, this is about like recommending an Early Lobotomy Program. How about reading Robert Whitaker’s books again, and opening a dialogue on better treatment methods?

    Report comment

    • I am actually pleased articles such as this are published here as it gives readers and researchers who have learned the ACTUAL facts about early intervention, “anti-psychotics” etc a chance to rebut what would appear to new/undeucated readers to be a plausible, reasoned piece by an expert.

      This sort of pieces appears unchallenged throughout the internet, and quite often opposing views go unpublished. Here, however, there is likely to be reasoned, researched and balanced critique that not only educates the public, but also the writer.

      The danger of NOT publishing such pieces, I believe is that MIA will become merely an echo chamber.

      To me, part of MIA’s great value lies in the fact that many of the commenters provide me with both a structure to critique such pieces myself, and facts that I can use when people in every day environments start spouting such crap about the need for more of the same, more drugs, more psych wards, more labelling, more oppression.

      I strongly disagree with the views expressed in the article, but the more such articles that get published here, the more likely it is that a wider audience will see the medical model dissembled and understand that psychiatry is a total and very dangerous scam.

      Report comment

  5. Glad to see people objecting to this sort of article in principle. This person is clearly floundering in his understanding of just about everything important; these are the sort of people responsible for lots of “well-intentioned” brain damage and ruined lives.

    Report comment

  6. Robert,

    This article is really good stuff. I will probably share it on the ISPS listserv if no one else does.

    I will add a few points to yours:

    Regarding your paragraph critiquing diagnosis, I’d say that, at the least, severe distress (schizophrenia-schizoaffective-bipolar-borderline etc) should be reconceptualized as a long overlapping continuum of related states, not as discrete “disorders”. It makes no sense to pretend that problems that vary along spectrums, that are individualized and constantly responding to the environment, are discrete “disorders”. To do that would be like a modern-day scientist pretending the sun still revolves around the Earth… really, it’s amazing how reductionist some psychiatrists and mental health workers are about diagnosis. Diagnosis is not really valid, anyway, but at least dimensions or continuums of different experiences are a more realistic way of describing how people vary in their suffering at different points in time.

    Jim Van Os writes well about this new dimensional/continuum model of psychosis: https://www.sciencedaily.com/releases/2016/02/160203090208.htm . I would say that Psychosis Spectrum Syndrome should replace schizophrenia, at the least, as a precursor to hopefullly abolishing pathologizing words for human suffering which should be the ideal goal. These are human processes, not illnesses.

    Your points about “medications” are well-taken. However, you don’t go far enough. You should ask that professionals acknowledge that these are general tranquilizers or neuroleptics, not medications treating any identified illness process. You may recall I have written about this: https://www.madinamerica.com/2016/09/rejecting-the-medications-for-schizophrenia-narrative-a-survivors-response-to-pies-and-whitaker/

    If we can’t have an honest discussion about what we are doing to people – and this includes being honest about the nature of the action of these drugs on the brain – how can we be effective in understanding and helping?… after all, if psychiatry were a truly scientific, empirical enterprise, then all new long-term prescribing of antipsychotic drugs would immediately be curtailed, since there is no evidence base for prescribing these drugs beyond one year when considering their side effects and lack of any demonstrated restorative effect on work and social functioning. The only reason not to do so, of course, is profit – cash for drug companies, income for psychiatrists, and status for psychiatrists who want to be perceived (illegitimately) as doctors treating bonafide medical illness. This is another very difficult issue that needs to be openly discussed. Psychiatrists do not have any special expertise vis-a-vis psychosis that other mental health workers do not, unfortunately, given the lack of validity around diagnosis and the lack of any bonafide medication that treats any identifiable illness process relative to psychosis. The sooner this can be accepted and psychiatrists can be demoted from leading treatment teams, the better, as John Read said: https://www.madinamerica.com/2016/03/in-search-of-an-evidence-based-role-for-psychiatry-2/

    The World Health Organization research in which people in developing nations without drugs did much better should also be discussed openly, alongside Harrow, Wunderink, and the other studies Whitaker reviews.

    And yes, absolutely trauma, poverty, discrimination, neglect, abuse should all be discussed as possible but not inevitable causes of psychosis, including in people labeled “schizophrenic”. Again, if one cannot openly discuss what is going on, how can people be understood and helped effectively. American mental health workers’ understanding of trauma as a factor in many cases of psychosis lags decades behind the research being done by John Read, Richard Bentall and others. For starters, professionals could be given copies of John Read’s book, Models of Madness, which would serve as an eye opener: https://www.amazon.com/Models-Madness-Psychological-Schizophrenia-International/dp/1583919066/

    To conclude, and to end on an unfortunately pessimistic note, Mary Newton’s comment is correct – most American early episode psychosis programs have nothing to do with Open Dialogue, and are merely disease model, drug-distribution, “illness management”, brain-washing programs which do little to enable any depth understanding of what is going on to cause distress in the young person and their family, but do much to indoctrinate young people into believing they have a brain disease and need to be on drugs for long periods. Even Oregon, which is relatively progressive, bases its programs upon a disease model (which EASA is, no doubt about it) and most states are much more committed to a disease and drug-everyone approach than Oregon. Thus, most American FEP programs serve the needs of drug companies and psychiatrists far more than they serve the needs of patients and families, and Robert’s optimism is premature in my judgement. I hope that this can gradually change. Having said this, I very much doubt such change will come from inside the profession of psychiatry / public mental health treatment.

    Report comment

    • “Early psychosis programs” are an obvious trojan horse for the “early medication programs”. It is so obvious that some psychiatrists do not hide it: Professor Patrice Boyer, former president of the European Psychiatric Association (EPA), claims an early pharmaceutical treatment before psychosis: for “bizarre”, “antisocial”, “aggressive” and “irritable” people (yes!).

      Many psychiatrists in Europe already apply this program by giving neuroleptics to non-psychotic people (i.e.: depressives, school dropouts …), and thus cause real psychosis after one or two years.

      http://francais.medscape.com/voirarticle/3603178?faf=1&src=soc_fb_170416_mscpfr_feat_EPA1

      Report comment

  7. Your goals leave out me an egghead that has schizophrenia. It’s obviously due to my central nervous system and the way messages flow to and away from my brain.

    It’s always you cool people who have mental health challenges that mimic the real thing trying to tell everybody what to do.

    Report comment

    • “Mimic the real thing?” Now you have gone too far. How do you know what the people writing here have suffered and how do you dare insult them by suggesting their suffering isn’t real???? How would you feel if someone minimized your suffering and suggested it wasn’t bad enough to be real? Just because others find different solutions than you have doesn’t make them wrong and you right. I strongly suggest you take a big dose of humble pie before you post again! BTW, I am reporting your post as a violation of the posting rules, and I am hoping it will be removed, but in any case, your insensitivity is hurtful to others who have worked hard to get where they are, even if they traveled a different path than you chose.

      — Steve

      Report comment

      • I’m prepared for me e beatdown from people here. I realize this is Mad in America.

        I hope my comment doesnt get deleted. Im standing up for the other group of us who don’t agree with you. Everytime one of us comes along we get chased away. The difference with me is I like it. I hope the moderators respect that.

        Report comment

        • The problem is that there are plenty of places for you to receive support online among people who also believe the things you do. This is one of the few places where psychiatric survivors can come and be heard and understood by others who have had similar experiences. Your commentary is received as hostile in what should be a supportive environment as you do not speak of your own experiences except to denigrate those who disagree with you.

          Report comment

        • This is not a “beat down.” You are directly insulting people who suffer from similar problems to your own and claiming they are not “really” suffering because they had different experiences than you did. That is disrespectful and hateful behavior in ANY context. I never gave you a “beat down” for your opinions and have ALWAYS respected your own experience as finding the drugs a positive for you personally, and have only argued that you can’t assume that because you personally had that experience, it meant there was scientific proof that your or anyone else’s brain was faulty. You can call that a “beat down” if you want, but I have NEVER suggested that your own experiences and suffering were not legitimate just because you didn’t agree with me! That is absolutely outrageous behavior, and I believe you owe an apology to others on this site who have suffered similar experiences to you but chosen different paths to healing/recovery or whatever word you want to call it.

          There are people here who have been to hell and back several times over and you have NO IDEA the severity of their suffering, but choose to arrogantly assume that “real mentally ill” people could never have “recovered” without drugs, despite my even providing you with some very cogent public examples of people who have.

          You are entitled to your beliefs, but you’re not entitled to insult people with impunity. And you’re not entitled to accuse me of “beating you down” when I step in to defend the folks you so blithely consigned to “fake suffering” status just because you want to protect your own ego.

          —- Steve

          Report comment

        • Pat, if you really honk me off I will simply ignore your posts. I strongly disagree with some of your statements, but the fact that I’m responding means I don’t consider you a troll or cyber bully.

          A lot of the comment makers here are critics of psychiatry or abolitionists.( I no longer believe psychiatry or therapy hold any legitimate answers to life’s problems.) Yet we come from a wide range of backgrounds. Oldhead and some others were forced into psychiatric “treatment” against their will because people thought their behavior was weird. Some of us actually sought out psychiatric “help” and despaired at what they offered.

          I started out depressed and anxious. Thanks to a bad reaction to Anafranil I wound up with the stigmatizing label of bipolar. Aside from that episode I never was psychotic. Yet the doctors were happy to sentence me to a life of segregation and disabling brain drugs. The reason the “Bipolar” diagnosis is so darn popular? My guess is it allows the shrinks more income streams. ($800 an hour just isn’t enough to live on anymore!) With “Bipolar” the worthless doctor with a cure rate of 0, is able to prescribe “cocktails” of 3-6 drugs of various classifications. Instead of just “antipsychotics” he can force feed you with at least an SSRI, a “mood stabilizer” and an “antipsychotic” to boot. No wonder schizophrenia has lost ground in popularity. Plain ole psychosis means less $$$$ from drug company kickbacks!

          Report comment

  8. I’ve said it before I’ll say it again. I’d give my left arm for the medicine I take. If I make it the promised land I’ll even visit the keeper of damned souls to put it a good word for any big pharma people that are there just for selling this medicine. You don’t get that because You’ll never understand how it feels to be that sick.

    Report comment

    • I lost 15 years of my life to being labeled a patient with SMI. I certainly know what psychosis is like. I have never said anything about wanting to fix anyone. I am still symptomatic intermittently and live in fear of being dragged back into the system. I’ve had horrific experiences as a patient. You do not speak for me. And frankly, I find your attacks offensive.

      Report comment

    • This has no bearing on your insulting remarks above. Accusing people of being “fakes” is the problem. I expect an apology to all the people whose suffering you have minimized or ridiculed because you don’t agree with how they handled it. Accusing people of fakery is absolutely not acceptable, a violation of ANY community’s standards for posting if they have any standards at all.

      Think about THAT, Pat!

      Report comment

  9. Matt wrote:

    [M]ost American early episode psychosis programs . . . are merely disease model, drug-distribution, “illness management”, brain-washing programs which do little to enable any depth understanding of what is going on. . . . [These] programs serve the needs of drug companies and psychiatrists far more than they serve the needs of patients and families. . . I hope that this can gradually change. Having said this, I very much doubt such change will come from inside the profession of psychiatry / public mental health treatment.

    Matt,

    Many people have pointed out the need to replace the “medical” or “disease” model of altered states of consciousness with a model that better supports understanding and (especially) recovery. I think a good replacement would be Paris Williams’ “ego strength” model of extreme states, described in his book “Rethinking Madness” (2012). Briefly, Williams says extreme states are on a continuum of human experience, ranging from psychosis at one end to spiritual or mystical experience at the other. How this underlying experience manifests in the individual depends on variations in the observing ego’s strength. If the ego is overwhelmed by the extreme state and there is literally no observing ego, then the result is psychosis. If the ego is strong enough to stay grounded and assimilate the extreme state, then the result is spiritual emergence or a mystical experience (in psychological terms, recovery). This model of extreme states helps explain why there is so much theoretical uncertainty over the difference between spiritual experience and mental illness, since an individual can experience either state from one day to the next, depending on the fluctuating strength of the observing ego.

    Williams’ model also opens the door to treatment modalities designed to strengthen the observing ego faced with the task of assimilating the powerful effects of an experience of altered consciousness. (Buddhism, for example, developed ego-strengthening meditation techniques for this purpose.) This is the challenge now facing western psychology: not to put a stop to potentially life-enhancing extreme states with powerful (and dangerous) drugs, but to develop treatment that nurtures and strengthens the ego struggling to deal with novel (and at times terrifying) mental experiences. At present, we mostly know what NOT to do: for example diagnose a demoralizing mental “disease,” lock the individual in a cold impersonal environment, arrange for permanent medication and dependency on others, etc.

    Unfortunately, knowing the poor results of such methods doesn’t prevent their use. What might make a difference is a new model of extreme experiences that recognizes both their dangers and their potential for enhanced functioning. Many anthropologists have pointed out that other cultures have learned to use states of altered consciousness for the benefit of their people. It’s time we did the same.

    Best,
    Mary Newton

    Report comment

  10. As someone who, as a parent, observed/participated for two years in an early psychosis program (in Europe), I’d like to make a few comments. Early psychosis programs always sound like “a good idea” and maybe these “good ideas” will eventually result in good practice, if done right, but the devil’s in the details. I’m quite encouraged by this post, but would like to add some further thoughts based on my observations as a parent of a son (schizophrenia diagnosis) who was enrolled in an early psychosis program, who, to my mind, should have been much further along the road to recovery than he was when he left it. Recovery from a severe form of psychosis is usually a lengthy, and multifaceted process. It doesn’t fit neatly into a recovery oriented program with a tight schedule and benchmarks to meet.

    The program was open to all young people between 18 and 25 who were experiencing a first episode psychosis. This means that people who had psychotic depressions were mixed in with people like my son. It is supposedly easier to overcome a depression with psychotic features than it is to overcome schizophrenia. So, a number of these young people looked like they were breezing through the program while others were the “slow learners.” Bad for fostering optimism for the individual and for the family.

    The program paid a lot of attention to building psycho/social skills, to its credit, but a lot more attention was paid to fine tuning the medication. Medication was always front and center.

    The program adopted a one size fits all mentality, which is almost a given with these kinds of publicly funded programs.

    The program paid far too much attention to psychosis induced by recreational drug use. It was offensive to those family member’s whose relative’s psychosis wasn’t brought on this way.

    These programs were run by “professionals” as one would expect. (Doctors, nurses, social workers, psychologists, occupational therapists, etc.) They considered themselves the experts, and families were there to “learn” from them. It is disempowering to be encouraged to think that others always know best, when a lot more can be done to encourage families to find solutions based on what they know. This is the way these programs are run, and will forever be run because they are making use of public resources, not just financial, but human, too.

    I’ve devoted several chapters in my upcoming memoir (to be published later this year) to the early psychosis program that my son participated in. Despite my experience with one such program, I do believe that there is always room for improvement, and I’m glad to see that Robert Nikkel is giving thoughtful consider to these issues.

    Report comment

  11. EXPOSURE TO PSYCHIATRY 1980 to 1984

    HOSPITALISATIONS
    1980 – Western Ireland Diagnosis Acute Schizophrenic Episode + Prognosis must be guarded due to the severity and duration of symptoms.

    1982 – Chronic Schizophrenia (Suicide Attempt) + Prognosis guarded

    1983 – Schizophrenia + Prognosis guarded

    1983 – Schizophrenia (Suicidal) + Prognosis of Further intervention expected

    1984 – February Schizo Affective Disorder (Suicide Attempt) + Prognosis guarded

    LAST TIME
    1984 – April Schizo Affective Disorder (Suicidal) “prepsychotic episode”… claiming medication reaction to first time injection of depixol at 40mg “..but this is highly unlikely..”

    Prognosis ..”expected back in the near future” –

    Stopped the offending medication (- and was never back).

    https://www.researchgate.net/publication/16313058_Suicide_Associated_with_Akathisia_and_Depot_Fluphenazine_Treatment

    Alternatively
    https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://ps.psychiatryonline.org/doi/abs/10.1176/ps.49.10.1361-b&ved=0ahUKEwjTs6TqyLvTAhVGuBQKHWUVCfsQFggfMAA&usg=AFQjCNF0NVIGuI0GK7TEI3PRmRWyUG8O6Q&sig2=vMY1x9YOujoE-u0Wg5qT9g

    https://www.nuigalway.ie/our-research/partners/
    @ €9.6 million

    END NOTE
    1980 – Admitting Doctor at Western Ireland Dr F#del :- “..The patient was co operative well orientated with intact memory and no evidence of any psychotic features..”

    Report comment

  12. I hope the psychiatric practitioners awaken to the reality that both the antidepressant and the antipsychotic drugs can create “psychosis,” via anticholinergic toxidrome.

    https://en.wikipedia.org/wiki/Toxidrome

    And I’ve read that the amphetamines, the ADHD drugs, can also create “psychosis.” So “early treatment” with the psychiatric drugs will likely increase the amount of “psychosis,” rather than decrease the amount of “psychosis.”

    Report comment

  13. Here in Australia we have Dr Patrick McGorry leader of the Early psychosis program
    what this means is drugs, drugs and more drugs ! he does love his drugs bet he wouldn’t give them to his own family tho ..
    the proponents are zealots -on a mission to root out any sign they consider to demonstrate psychosis . they are like the witch finder general or the inquisition.
    my family member was once asked why he was watching the trick cyclists hands answer “because you move them about a lot” (this was true i have never seen such an arm waver) this was viewed as evidence of psychosis (the watching and the answer) and drugs increased as a result! last visit to that person
    the dr was mad as a cut snake but a very powerful snake and he damaged many many people that year
    The McGorry protocol for anyone not wanting to take drugs is a community treatment order, clozapine and or ECT ! truly he wrote that as a protocol and was made Australian of the year for his efforts that year !!
    yes they are desperate the Australians like small children
    Millions was pored into this program across Australia no money for anything else that might actually help
    Those of you who have suffered on this site and say avoid the system and its servants are correct
    don’t engage with them there is no point, avoid and work out your own ways forward do not afford them any legitimacy. Turn your back on them but only after you have put two fingers up at them .. they are not fit to wipe your shoes.

    Report comment

    • madmother13
      Your comment sure helps put Bob’s blog in perspective and provides a clear vision of what we are really up against. His wish for thousands more of these “early psychosis programs” is absolutely in need of that ancient warning “The road to hell is paved with good intentions”. I wish your comment was printed large on every billboard in America including here in Oregon where the youngest of children and the brightest and most curious can be drugged on the word of a school teacher referred to the brainshrinker and taken away from the parents if they don’t comply.Oregon also the home of behavioral control units just like Guantanamo. There is one in Roseburg Oregon . There’s nothing like lived experience for real accuracy. Thank You, Fred

      Report comment

  14. There is much good information in Bob’s essay and the comments above. But I do not understand why there is such blanket neglect of the (admittedly small) amount of research on the role of nutrition. There are studies showing the addition of fish oil following a first episode psychosis significantly reduces the probability of subsequent episodes; there are case reports supported by quantitative data showing complete resolution of hallucinations and delusions by broad-spectrum nutrient formulas. I know we need many more studies, but if ‘first do no harm’ is truly the guideline for early psychosis clinics, they should be implementing these simple and safe interventions before resorting to medication. And….they should be doing research on the topic! I’m available to consult.

    Report comment

  15. thank you, Bob, for your article. I hope the ‘open dialogue’ is truly that, but as another commenter mentioned, would those of us ‘in the trenches 24/7’ be welcome to those open dialogues? I’ve taken my wife thru d.i.d. and done things the experts say ‘can’t be done.’ I was there 24/7 in every situation, and until the experts understand their limited exposure to how disorders truly work in real life, their knowledge will always be severely truncated.

    Wishing you the best,
    Sam

    Report comment

LEAVE A REPLY