Ever since Mad in America was founded in 2012, articles that have focused on psychiatric drug withdrawal have proven to be popular with our readers. There is continuing interest in personal accounts of withdrawal, descriptions of tapering and post-withdrawal difficulties, and reviews of the scientific literature.
In stark contrast to this willingness by those affected to discuss dependence and withdrawal issues, the professional discourse remains muted and indistinct.
More positively, in recent years there have been considerable efforts made to foster an increasing awareness of withdrawal from prescribed psychotropics. These efforts are coming from both a lived-experience and a professional perspective.
In the UK, the Council for Evidence-based Psychiatry has been at the forefront of influencing UK health policy by providing the secretariat for the All Party Parliamentary Group for Prescribed Drug Dependence, which in turn is contributing to NHS England’s work on the development of withdrawal services.
The popular film Medicating Normal continues to be shown at special screenings with informative panel discussions following the film. Peer support sites including Surviving Antidepressants, The Inner Compass Initiative and Benzo Buddies remain busy with many seeking help and support.
In September 2020, the FDA mandated stronger warnings for the prescribing of benzodiazepines, requiring a boxed warning to include the potential for abuse, addiction, and other serious risks.
Recent papers such as this from researcher Giovanni Fava are calling into question long-held professional beliefs about the effects of psychotropic drugs on the brain and nervous system. There also seems to be more willing to acknowledge patient experiences in official fora, including this recent Patient Voices report in the journal Therapeutic Advances in Psychopharmacology.
However, despite these welcome advances, more remains to be done. Knowledge is scattered and difficult to access and people are still forced to search high and low for reliable information to help them understand and manage difficult experiences. Prescriber awareness is growing slowly, but people often join online support groups relating that their prescriber lacked the knowledge, skills, and experience necessary to help them taper safely and slowly. In some cases, prescribers are still rejecting completely the idea that prescribed psychotropics can be difficult to stop.
In considering this substantial gap, Mad in America felt that the time was right to convene a series of town hall-style live online discussions to explore these issues. This was inspired, in part, by our experience with our Open Dialogue discussion series, which has proven to be an effective way to engage a large number of online viewers.
Our co-sponsors for this new series are the Council for Evidence-based Psychiatry and the International Institute for Psychiatric Drug Withdrawal. Each town hall will feature a panel comprised of a mix of professionals and people with lived experience. Following the discussion, there will be an opportunity for viewer questions.
This series aims to explore what we do and don’t know about safe withdrawal from antidepressants, antipsychotics, benzodiazepines and stimulants. We will seek to present and explore new understandings that are emerging from the professional and lived-experience communities. We will discuss the knowledge, skills and experience necessary to support those who may be having difficulty getting off psychiatric drugs. We will address questions of interest to both prescribers and patients alike.
The initial panel discussion will be held on Friday, January 15, 2021, at 1 PM EST (U.S.), 6 PM GMT and will set the scene for the series. What do we know and not know, what developments have there been? Where are the gaps in our knowledge and understanding? How do we make use of all the lived-experience accounts of difficult withdrawal? You can register here.
In addition, we will be asking for help from the viewing audience to assist us in deciding what are the important topics to cover in our series. As such, the intention is that the series can be developed for and by the lived experience community. Equally important, we want to encourage as many prescribers as possible to join us and to use this as a learning and knowledge sharing opportunity.
This first panel is composed of Adele Framer, founder of Surviving Antidepressants; Swapnil Gupta, a Board Member of the International Institute for Psychiatric Drug Withdrawal and a psychiatrist with a special interest in deprescribing; John Read, Professor of Psychology and Chair of the International Institute for Psychiatric Drug Withdrawal; and Luke Montagu, co-founder of the Council for Evidence-based Psychiatry and member of the NICE guideline committee for safe prescribing and withdrawal (Luke has also experienced withdrawal).
I will be the host for the series, and moderate this first town hall. The issues of dependence on and withdrawal from prescribed drugs—and my personal experience of antidepressant withdrawal—led me to create the Let’s Talk Withdrawal podcast in 2017. My aim then was to shine a light on experiences that are sometimes misunderstood, dismissed, or delegitimized, and this remains a core aim of our new series.
Lucy Fernandes, who is the administrator for the International Institute for Psychiatric Drug Withdrawal, will be moderating viewer questions and comments. Shira Collings will be managing the technical aspects of the town halls, which will be live-streamed on Facebook and provided after the event on MIA’s YouTube channel.
To help with this aim, we are seeking your input to help us organize the series. We want to know your issues that need to be addressed. Were you informed about withdrawal issues when first prescribed to? Did you know about gradual tapering? Were you able to converse with your doctors about your experiences? Did they listen and adapt their approach? Please let us know.
In addition, we are considering all the ways that we can ‘reach beyond the choir’ to encourage prescribers to engage who may not have been exposed to these issues previously. If you can help suggest ways we might reach a new prescriber community, or if you have burning issues for us to consider when designing this series, please get in touch.
We hope that these discussions will add to an increasingly detailed collection of knowledge and experiences that can inform prescribers when providing informed consent and when implementing gradual tapering regimes.
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Register here for the first panel discussion, which will be held on Friday, January 15, 2021, at 1 PM EST (U.S.), 6 PM GMT.
First off, well done MIA.
“In addition, we are considering all the ways that we can ‘reach beyond the choir’ to encourage prescribers to engage who may not have been exposed to these issues previously. If you can help suggest ways we might reach a new prescriber community, or if you have burning issues for us to consider when designing this series, please get in touch.”
I am pretty sure that I am the choir, and we already know my “POV”, so we need to really encourage professionals who in their innocence may not have been exposed to these issues? We all or hopefully all know that we are using PC language here. Of course they are exposed. And no professional should ever come to ‘learn’ on a website. They should be listening to their subjects.
So really, my burning question is, why are we pretending that they don’t know? Prescriber “awareness” is not growing. It was always there, coupled with “I don’t care”. And the word “dismissed” gives them more credit than is due. “ignored because I can”, is really at the heart of harm to those who receive scripts. Psychiatry knows they are being exposed and are slowly readying themselves to always keep on top of language and loopholes for an out. They have two sides to please. The media and possible exposure, and the APA, in other words, their jobs. The subject of their affection/disdain has zero to do with their motivations. I believe the biggest motivator is identity. Identity with their chosen life field and repercussions of looking bad or the ongoing farce they subscribed to. The “client” is the least of their concern.
Why are we speaking of “withdrawal”, when the issue is in prescribing a lie to begin with? That these are “medications”? Lived experience is the one that counts and has been purposefully ignored, and we all know this. However, we are still trying to have open dialogue with a community that holds the ultimate power. I don’t think I can even put much value on a professional who pretends to be wanting to learn about “deprescribing”, since I really have no clue what actually transpires in their practice. I am sure some “professionals” work with and support a few clients, yet highly encourage others who they deem much “sicker” to take their drugs.
The bottom line is that the drugs are all very dangerous and should not be prescribed in the first place unless a client demands them. A psychiatrist should always prescribe a drug with the warning “against my better judgement”.
It’s an awesome blog, well written and time for this series, which I think is very much needed, for several reasons. I think no one is better suited than you James, to present this town hall, and I really hope for good things to spring from it.
I do hope people all across the board participate and that honest dialogue is not discouraged. I think it might be especially helpful if we could have the issue of Kids and the aged being drugged, in which case there is NO informed consent. It is really an unethical practice happening legally. Yes I realize it has become accepted practice, and it does not make it any more ethical.
So I would hope that between now and then, you could reach the teacher communities, perhaps caregivers also, and direct them to the available recorded meeting.
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Hi Sam, thank you so much for taking the time to comment. I realise that we are talking about very big but largely suppressed issues here and I am in no doubt about the amount of effort needed to move the needle. I hope that by us having these discussions in a free to view public forum, we can try and bring people along with us. That’s easier said than done of course, especially where those who resist any suggestion that the drugs can be at fault is concerned. You raise a very important issue about kids/youth and informed consent. We are drawing up a list of subjects to tackle and this is an important one, thank you for raising it. I hope you might be able to join us for these discussions.
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Thank you James for not giving up or in. And thank you for the invites.
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James,
As someone thats successfully withdrawn from Neuroleptic Depot Injections and made Longterm Recovery as a result (and can substantiate this), can I become active in the Council and attend your Meetings?
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Hi Fiachra, firstly can I say how glad I am to hear that you managed to withdraw and make a recovery, that’s a huge achievement. As you probably know, I work for MIA but I am not a member of the Council for Evidence-based Psychiatry, being merely a lay-person. These town hall meetings allow us the flexibility to bring a range of expertise and experiences together, both professional and people with experiential knowledge, so I do hope you might be interested in viewing the discussion.
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James, Is the Council of Evidence based Psychiatry limited to ‘Professionals’?
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Hi there, it’s not exclusively professional, for example, Luke Montagu on our town hall panel is a CEP co-founder and has personal withdrawal experience.
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For me, the fundamental issue is prescriber responsibility. There is no excuse under the sun for a prescriber to give a drug to a patient that the prescriber does not totally understand. Any drug, no just psychotropics.
The prescriber has the responsibly to educate the patient, guide the patient through the process of informed consent, and where there are known withdrawal issues the prescriber has the responsibility to assist the patient during withdrawal if necessary.
This responsible process could not be simpler.
After my experience with benzo withdrawal I no longer trust any prescriber to inform or assist me. I now challenge any request by a doctor who wants to prescribe a drug for me. This has led to some interesting discussions.
I am curious to see how this town hall process will unfold. The issues to be explored are complex. I wish all the participants well and thank them for their efforts to present these issues to anyone who would care to listen.
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Hi NovaScotia, thank you for taking the time to comment. I completely agree that most of us get nowhere near understanding what we are signing up for when we are prescribed to. During the series we will get to talk more about informed consent and if it is even possible with drugs that we have so little understanding of. Thanks again.
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“informed consent and if it is even possible with drugs that we have so little understanding of”
That is the truth. And it begs the question, should there be prescribing for that which is not understood? There are many smokescreens being used by psychiatry to avoid dealing with that question… a race to keep ahead of the thing they don’t want to deal with.
Because really that question is about health and a doctors legal and ethical obligations.
And should they be allowed to continue as “doctors”?
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How were these panelists chosen? I will not spark controversy by naming offenders, but including uneducated and self-appointed experts is not wise. It enables harm because MIA’s inclusion of anyone can add credibility to less than credible people.
I have made an effort to conceal my serious concern.
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It’s your right of course to hold this view but I think I will just let the panel members speak for themselves on the day. I am confident that those watching will get a great deal from the discussion.
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Well Bananas, these discussions happen BECAUSE of the existing harm, and the fact that these harms continue.
What is an “uneducated self appointed expert”? Would that be a psychiatrist who prescribes harmful chemicals and pretends he does not know about the harms?
Psychiatry IS “self appointed”.
In fact the withdrawal communities is the only place you will find unbiased information. So I’m not sure what you mean by “educated”. Psychiatry obviously has no clue, (uneducated) or they are lying. It cannot be both.
https://www.madinamerica.com/2019/03/peer-support-groups-right-official-guidelines-wrong-dr-mark-horowitz-tapering-off-antidepressants/
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Bananas:
“Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.” — Barack Obama
I am honored to be invited to this panel. I am a very reluctant expert. As many know, I’ve given my time away under a pseudonym for more than a decade in providing what I’ve gleaned about psychiatric drug withdrawal based on interacting with thousands of people online and reading hundreds of journal articles. (I only came forward under my real name, as in this interview https://www.madinamerica.com/2020/11/surviving-antidepressants-adele-framer/)
You are correct. I have no formal credentials in the field at all, nor do I pretend to have them. I am what they call a patient expert or ePatient. You could look it up; there’s a body of research about this Internet-driven phenomenon, such as Nelson, R. (2016). Informatics: Empowering ePatients to Drive Health Care Reform. Online Journal of Issues in Nursing, 21(3), 9. https://doi.org/10.3912/OJIN.Vol21No03InfoCol01
As for my now doing public speaking: After more than 15 years begging medical authorities to attend to the issue of psychiatric drug withdrawal syndromes, I finally concluded I needed to come forward publicly myself to move the field along. The number of casualties gets larger all the time. The avoidable clinical error needs to stop. I can’t think of anyone better to state this than patient representatives. We are the change we seek.
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While I would love to attend the discussion live, as I am a fan of nearly all of the panel – being in Australia makes this impossible to be there at the right time.
It is my fond hope that these discussions will be recorded and widely available after the event.
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Yes Jan, they are always available.
I was wondering if they could be posted on any withdrawal web sites?
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Hi JanCarol, thank you so much for your message. I can confirm that we will be adding the discussions to our YouTube channel after the event. This can be found here: https://www.youtube.com/user/openparadigmproject
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