So You Say You Want a Revolution Part Two

Robert Nikkel, MSW
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Two years ago I wrote a blog entitled “So You Say You Want a Revolution?” in which I laid out in general terms what I saw at that time as the key ingredients in making revolutionary changes in public mental health systems. They were 5 C’s: Commitment, Courage, Creativity, Capability, and Care.

I’ve had two more years to think about these things and have a few more thoughts on this topic. If working from the 5 Cs seemed daunting before, my ideas for system revolution are now more specific and even more challenging.

A formative experience for me was beginning to work several years ago with a large state agency that served many young people with mental health problems. A colleague from my days as the state mental health and addictions commissioner began to talk with me about my new perspectives on the treatment of people with mental health challenges. He told me that he was interested in looking at how psychiatric medications were being used in his agency. His words were encouraging: “Whatever we’re doing, I want to make sure is in the best interests of the youth in our care.” I jumped at the chance. I toured facilities, and discussed the issues and the risks in overusing medications with another former colleague who was in charge of treatment services.

The bottom line ended up being a financial equation: “If it costs a dollar to keep a young person out of trouble using medications and it costs a lot more to keep the young person under control with staffing, what do you think we’re going to do?”

That stopped the plan that I’d been cooking up which was to map the use of psychiatric medications for that agency so we could see which psychiatrists were prescribing which drugs to which youth with which diagnoses. We could then match their current practice to what unbiased research showed was most effective in the short-term and long-term outcomes.

The resistance to “doing the right thing” isn’t purely financial though. In fact, a strong case can be made for savings over the long term by a more conservative approach to using drugs. But perhaps the biggest hurdle is getting professionals and administrators to learn about and then apply the scientific findings that medications do more harm than good in the long run.

I think that what we’re talking about is the same kind of denial we see with climate change. The unbiased research on the effects of psychiatric medications is pretty clear now but our “cultures of care” are very slow to recognize this. And just as in the climate change world, this denial is well supported by commercial interests which reinforce the inertia of longstanding practices. In the mental health field I suspect that most practitioners recognize the risk of climate change but somehow not the risk associated with psychiatric drugs.

Understanding the effects of climate change suggests another parallel—we could map medication prescribing patterns too. The map would show where medications are being used, and the coordinates would be diagnosis, age, and other variables rather than geographic. But as I learned in trying to work with that state agency, there is going to be great resistance to this mapping in spite of the fact that the digital age makes the data more accessible than ever—if only the will and commitment to doing the right thing were there.

In this blog, I am going to “map out the mapping process” in the hope that it can be useful in advocacy efforts. And I will also point toward ways in which the system can be remapped.

For starters, every community mental health program should develop a register of prescribing patterns. This register would collect data on 1) which prescribers are prescribing 2) which drugs to 3) which clients with 4) which diagnoses. The data should also include 5) age, 6) income and 7) ethnicity.

Community mental health programs range from outpatient care all the way to intensive services such as crisis intervention, residential facilities, acute inpatient services and extended care programs like state hospitals and alternatives to long-term hospitalization.

A sometimes under-recognized reality is that services outside the mental health system proper prescribe a significant proportion of psychiatric medications. These agencies include all kinds of alcohol/drug programs (though they tend to be more suspicious of chemical fixes), child welfare services (i.e. foster care), juvenile justice programs, and corrections departments. In addition, developmental disability services, senior services, and educational systems are almost always involved in some way with medicating the most challenging children, youth, adults and seniors.

Finally, with the emergence of more “integrated health care” (where mental health, alcohol/drug and dental care are folded into physical health care management), this mapping must include the primary care and specialty medical services controlled by coordinated care or quasi insurance organizations. It is also the case that physical health care practitioners have long prescribed the majority of medications like antidepressants, opioids and anti-anxiety agents. None of these drugs can be overlooked in a comprehensive mapping project.

Establishing this kind of comprehensive drug review map will make possible a complete assessment of the expenditures on psychiatric drugs. I predict that these expenditures are going to surprise and concern anyone responsible for managing these costs. Just one example: I was shocked several years ago when I was in charge of a Medicaid mental health organization and learned that in just one year, a single psychiatrist had prescribed nearly $500,000 of a neuroleptic off label to CHILDREN! This information hadn’t presented itself to me because it was outside my budget—the pharmaceutical corporations have lobbied successfully in most states to keep the costs of psychiatric medication outside the regular mental health budgets. It’s a way of disguising the magnitude of these costs clothed in the language of assuring access to such valuable and life-saving drugs. They were really just paving the way for maximizing their profits.

Once the data is mapped it should be reported to state legislatures or other governing bodies and made available to all advocates who ask for it. As the actual costs and ineffectiveness of these drugs become apparent, the next set of steps I will recommend will be equally if not more challenging—and that is: what would the map of alternatives of handling mental health problems look like?

One of these would be to require the completion of online continuing education courses for all prescribers and managers on the true effects (short-term and longer-term) of major classes of drugs. The Mad in America Continuing Education project is a good start in this direction and needs to be amplified even more.

Another piece of a new map would be establishing radically improved informed consent standards so that patients and families get an accurate picture of what they can expect from medications—not just the relatively perfunctory warnings about tardive dyskinesia and dry mouth.

Every community must then create a drug withdrawal program. Any person who wants to decrease dosage or attempt to live life drug-free can do it safely, under competent medical services along with peer support from those who have successfully accomplished it and/or are going through it themselves.

Finally, to oversee this process, each state or community should create a commission to review all of the mapping data and whatever implementation issues emerge. The commission would recommend further steps to establish and sustain a new paradigm of care. These commissions would include peer advocates—at least 50%—as well as representatives from all the state and local agencies listed above that prescribe psychiatric medications. All members must demonstrate that they have the necessary unbiased knowledge about medications and alternatives. At a local level, “collaborative learning agreements” should be implemented that would facilitate the work of putting into practice the evidence-based interventions that emerge from all of the steps outlined above.

This admittedly ambitious set of steps is what is involved in moving away from a “climate change denial” paradigm of care. Daunting? Certainly—so that C (for “Certainly”) gets added to my earlier 5 Cs of Commitment, Courage, Creativity, Capability, and Care.

Is there a state or local community brave enough to start the process?

15 COMMENTS

  1. I would say the following is right on target and, frankly, a need. In the states in which I’ve resided, not only are there few to no drug withdrawal groups or programs, but there is little to no support for anybody wishing to taper off psych-drugs. This situation needs to change on a wide scale if we are to direct “patient” traffic to a route which leads to physical health, and reversing the present excesses, the “mental” stability that stems from it.

    “Every community must then create a drug withdrawal program. Any person who wants to decrease dosage or attempt to live life drug-free can do it safely, under competent medical services along with peer support from those who have successfully accomplished it and/or are going through it themselves.”

    The next part of this “revolution” then gets a little tricky and worrisome.

    “Finally, to oversee this process, each state or community should create a commission to review all of the mapping data and whatever implementation issues emerge.”

    Incorporating “consumers” into the system has become problematic. How do you, then, get them to abandon the same system? A system from which “cure” or “recovery” would mean “suspension” or departure?

    “All members must demonstrate that they have the necessary unbiased knowledge about medications and alternatives.”

    There is no “unbiased knowledge” about “medications and alternatives”, especially if you are promoting the use of one, the other, or both.

    I see system expansion taking place here, the opposite of what you are going to want if you are to get people out of the system, and I think doing so is going to require a little bit more imaginative thinking. Medicalization without medicine might not be so much of an issue, still I think we have a problem with the expanding “patient” population. Is this type of “collaboration” really going to lead to inoculation and shrinkage of that population? I wonder…Or does it just mean a more expansive and efficient bureaucracy for containing troublesome people?

  2. Robert, two years ago you wrote a piece about a revolution in psychiatry. My response then still stands:

    “Here’s a way to simplify the problem. Slay the Dragon of Psychiatry. Psychiatry is like a great dragon. It cannot be ‘changed’ or ‘tamed’ or ‘reformed’ or even ‘revolutionized.’ It must simply be slain. Do you think that Hobbits, Elves, Dwarves and the people of Laketown would have been safer with a top-down or grassroots approach to Smaug? Do you think that World War II would have ended if Churchill had joined sides with Chamberlain and sought a top-down or grassroots approach to Hitler? Enough of the lies. Slay the dragon of psychiatry.”

    Instead of the five C’s, I recommend the five S’s:

    1. Slay the Dragon of Psychiatry
    2. Slay the Dragon of Psychiatry
    3. Slay the Dragon of Psychiatry
    4. Slay the Dragon of Psychiatry
    5. Slay the Dragon of Psychiatry

      • Good idea. It’s amazing to consider that this simple proposal could save the federal government and local governments billions of dollars in mental health care spending, and that once pharmaceutical companies and psychiatry relinquish the profits that they have accumulated by harming innocent people, many billions of dollars could be put back in the taxpayers’ pockets. It’s a simple five point proposal, and it’s guaranteed to work. The only problem left to solve after that would be to find honest work for the unemployed psychiatrists, mental health busybodies, and pharmaceutical representatives, or at least for those who don’t go to prison for their crimes. Perhaps some of the funds could be invested in a program to help educate and train former psychiatrists, mental health busybodies, and pharma reps to become productive members of society.

  3. I’m ready to lobby the legislature in my state for creating new data reporting requirements and guidelines as it concerns funding and resources for people who want to safely withdraw from psych drugs. We don’t have the data I we need to make the case that we are driving up the cost of mental health services in the long run,, but we need whatever data we can get at this stage, for instance, what percentage of every states Medicaid budget goes towards mental health and more specifically, what percentage of MH dollars a goes towards drugs? I know what the pushback will be in budget strapped states. To make the case, we need a starting place. The VA has some pretty good data. Approximately.12% of the VA’s budget now goes directly to pay for drugs

  4. “This admittedly ambitious set of steps is what is involved in moving away from a “climate change denial” paradigm of care. Daunting? Certainly—so that C (for “Certainly”) gets added to my earlier 5 Cs of Commitment, Courage, Creativity, Capability, and Care.”

    I love the academic-like formulation of words here, Robert. Especially the “climate change denial,” although I am concerned with a so-called post-modern deconstruction of our climate of denial, from the well ‘initiated’ academic perspective that the world is made of words, and that people are made up of parts and these parts all have an identifiable name. But, tell me Robert, does your name give you a sense of a ‘whole’ you?

    The 5 Cs, you say so well, giving voice to words of subjective and inter-subjective ‘communication,’ while the great hero of the human potential movement, Noam Chomsky, in his book What Kind of Creatures are We? Tells us that the majority of language use, takes place in that ‘private-space’ we name our mind, and Ken Wilber, another hero of the human potential movement notes the great social taboo on expressing any form of private ideation which might bring about a state of mental dis-ease, to our well versed, consensus-reality.

    And pray tell, happens, during the motion of personal evolution, to the 5 Ss (senses) of being human? Perhaps a quote from a rather unique individual might bring a certain clarity to the yarda, yarda, yarda call for Revolution: Lose your mind and come into your senses. –Fritz Pearls

    While having gone through what Plato names metempsychosis, as natures call to understand the nature of my mind, from the inside-out. I suggest that a more ‘existential’ sense of revolution, is better persued through the perspective of Comparitive Mythology, in order to cure the well versed academics and politicians of their ‘rhetoric-is-reality,’ DELUSION. Please consider the possibility that you are not made of words and that R.D. Laing was intuitively spot-on when he said: We are all in a post hypnotic trance induced in infancy.

    In other words; “welcome to the world my child, and upon sighting yon nature, you must recall her names, if you are to fit right into an insane social world, where you must go along, to get along, and make for yourself, a living.

    And if I might paraphrase the creative lyrics of Alison Moyet, by whispering to academic head, of ‘how’ Mother Nature laments for her ‘dissociated’ children:
    Invisible – I feel like I’m invisible.
    You treat me like I’m not really there
    and you don’t really care.
    I know this romance
    it ain’t going nowhere.

    The book by Joseph Campbell, Myths to Live By, opens with:
    What is a properly functioning mythology and what are its functions? Can we “live by” myths today? Can they help relieve our modern anxiety, or do they help to foster it? In Myths to Live By, Joseph Campbell explores the vital link of man to his myths and the way in which they can extend our human potential.

    The fourfold stages of the ‘monomyth’ are, departure from the norm, initiation, return, community boon. While, despite the inevitable swoop of the predatory critics, might I suggest that the ‘boon’ phase of an heroic struggle is still awaiting, arrival of clear eyed manifestation.

    Tell me Robert, do think a tree remains a tree, if you refuse to judge it, a name? And is the post-modern myth that we truly know ourselves by our adaptive ability to recall to memory, numbers, letters and words, long past its use by date?

    Ah! The Humanity.

  5. There are some very low-cost alternatives that can be used to help the “mentally ill.” But they will never get government support money. On the positive side most are cheap and even free.

    1. Moral therapy. Something like peer respite homes at their best.
    2. Peer support groups.
    3. Talking to a clergy member or wise friend.
    4. Better nutrition and exercise.
    5. Volunteering to get out in the community.

  6. Wonderful!

    I really like folks who look at an unmet need, gather info, consult colleagues, and envision options for change while proposing action steps. Your work here is that in exemplary fashion.

    Count me in! And thank you for inspiring some pragmatically-based hope.

    Jacek

  7. Interesting thoughts on systemic change. It occurs to me that insurance companies have 90% of the data you need for your mapping project. But having completed the mapping, where do you go from there? You say “We could then match their current practice to what unbiased research showed was most effective in the short-term and long-term outcomes.” What do you expect to find by this comparison? What is “most effective in the short-term and long-term outcomes”? You anticipate that “the actual costs and ineffectiveness of these drugs become apparent” but how will this happen? The mapping will show costs, but how will it show effectiveness or ineffectiveness? And even if the mapping can show relatively low cost-effectiveness, you would need to be prepared to present a better alternative. What would that look like? You say ” a strong case can be made for savings over the long term by a more conservative approach to using drugs”. What is this case based on, and could we not make the case without the mapping? I think the “map of alternatives of handling mental health problems” is going to be the key here. Do we have such a map?

    • Great questions that will need good discussion and decisions for interpretation.

      Just about the general “where do you go from there,” the findings will help guide the answer to that. Reduced costs with no improvement will not be fully acceptable. But seeing outcome rates currently showing poor long-term “success” on average using traditional expert medical model schema and the costs to consumers and the public alike, should prompt deserving attention to the good outcomes generated by evolving engagement interventions. Those produced by Recovery and Peer services which have increased: client motivation (measured by improved involvement with supports, both short and long-term, via Intentional Peer Support and eCPR); employment through supported employment services, leading to long-term unemployed individuals gaining and maintaining employment (particularly via the evidence-based Individual Placement and Support model); self-management of psychotic symptoms via Open Dialogue and Hearing Voices support groups facilitating personal relationship development, improved housing retention rates, employment, and community involvement. If these data remain steady, and costs are compared with the exorbitant current pharmaceutical and hospitalizaton costs being paid, this venture would be historic with helping the system make “informed choices!” When the system gets healthy, it will help create a positive momentum.

  8. In my state they would never even consider creating a commission for overseeing all this. The governor and legislature have one message and one message only and that is that we all need more drugs.

    And as far as community mental health clinics are concerned the two in the city where I live do all they can to keep from helping people in any way shape or form. They are uncooperative and put roadblocks in the way of providing anyone with services. You have to know the phone number of someone high up in the system to make a complaint to before they will do anything for you. I waited six weeks for them to call me and every time I went in and asked when they were going to call they made me sit and wait for half an hour and then someone would come to the door leading into the inner sanctum and say, “Wait for our call.” It was at that point that I made my decision to never have anything to do with the system ever again.

  9. May I point out that we’ve been making these efforts as patient whistleblowers for years already? I did it myself. I confronted the prescribers and asked why every single patient on the ward was being given the same drug. Or was on the same meal plan. Or had the same diagnosis. Or was told the same lies. Or had the same treatment plan. I know nurses and others who confronted management likewise.

    The workers were usually fired, or worse. Patients were silenced, drugged, incarcerated, discredited, dead. Or disgusted with the movement for one reason or another.

    Patient whistleblowers are expendable, they kill us all the time. As I figure I’ll be found dead someday, too. Life is short, Well, there are risks we take, right?

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