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 10 AM PT, 1 PM ET, 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 comprised 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.