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I stress, first, that it is unwise to make decisions about coming off, reducing, or staying on medication on the basis of one blog post, and that withdrawing from antidepressants typically requires tapering very gradually, especially towards the end of the process.
Preliminary data in the U.K. suggest that antidepressant prescribing may be increasing even faster during the pandemic than the usual annual rate of increase. This raises the question of whether our COVID-related losses and fears are best understood as mental health problems located in individuals and requiring chemical solutions, or as a shared set of natural reactions requiring, primarily, human care and financial support.
My previous posts have summarised the limited efficacy, considerable risks, and overprescribing of antidepressants, and documented the research showing that over half of people who try to come off antidepressants experience withdrawal effects of varying severity.
Currently, the NHS in England provides no support services for people trying to come off drugs like antidepressants, benzodiazepines, and antipsychotics. There are just a handful of small local charities in England, and one NHS unit in Wales, providing such a service. This is primarily because the medical professions, and our national guidelines have, until very recently, swallowed the drug company line that withdrawal from antidepressants, for example, is rare, mild, and short-lived. As a result, people describing their withdrawal symptoms to their doctor have often been told that what they are experiencing is not withdrawal but their original disorder returning, with drugs being reinstated as a consequence. Additionally, both our New Zealand1 and international2 surveys of hundreds of antidepressant users found that only 1 percent had been told about withdrawal effects when first prescribed the drugs.
So, in the absence of medical knowledge or expertise, how have the millions of people trying to come off psychiatric drugs around the world been coping? Presumably some have suffered in silence and isolation. Others have had the support of relatives or friends. A few will have been lucky enough to find a doctor who has read the research. Many, however, have turned to online support groups.
I have just co-authored, with Ed White and Sherry Julo, a research paper reporting on 16 Facebook support groups. The paper, "The role of Facebook Groups in the management, and raising of awareness of, antidepressant withdrawal: Is social media filling the void left by health services?" was published in Therapeutic Advances in Psychopharmacology.3
The 16 groups had over 67,000 members. Membership was found to be growing at about 28% annually. One of the larger groups, which we examined more closely, was more than 80% female. Membership was international, but dominated by the U.S. (51%), followed by the U.K. (17%). The most common reason for seeking out the group was failed clinician-led tapers.
Lead author Dr. White has himself suffered frighteningly severe withdrawal symptoms. In the media release about our article, he commented:
I was alarmed when I found tens of thousands of people online seeking help with stopping antidepressants, many of whom are in a perilous state after being tapered too fast by their prescriber.
Online peer support has become such an important avenue of care for people suffering antidepressant withdrawal and needing guidance to safely taper off these medications in the absence of medical backup from Doctors.
The groups included in the research are probably the tip of the iceberg.
Our paper concludes:
The lay people who run these groups deserve a great deal of credit. They give support to patients who want to taper off medications which they may otherwise continue to take for an unnecessarily extended period, suffering side effects, having dosages increased, or worse still have other drugs added to treat their withdrawal symptoms. Although there will always be an important role for peer support, these people are currently undertaking a complex, stressful, unpaid, undervalued role that should be provided by the original prescribers.
We were pleased that the paper has received significant media coverage in our national newspapers and on national television. We are encouraged that a recent survey of UK GPs4 reported that although there was "a marked lack of consistency in GPs’ knowledge about the incidence and duration of withdrawal effects," two-thirds said they would welcome more training on these matters.
In 2019, a comprehensive review5 of dependence on prescribed drugs by Public Health England led to some vitally important recommendations, including: "Improving the support available from the healthcare system for patients experiencing dependence on, or withdrawal from, prescribed medicines, including a 24-hour national helpline and face-to-face withdrawal support."
It is impressive that despite all the pressures of the pandemic, NHS planners have recently commenced the consultation process on how to implement this recommendation. It is particularly promising that they have chosen, for their advisory group, many people who have been committed for years to the NHS providing withdrawal support services, including Luke Montagu, Dr. Anne Guy, and myself. Luke co-founded the Council for Evidence Based Psychiatry (CEP) after being misprescribed antidepressants and withdrawn much too rapidly. CEP serves as the secretariat for the All Party Parliamentary Group for Prescribed Drug Dependence. Anne, also a CEP member, is the lead editor of the invaluable 2019 "Guidance for psychological therapists: Enabling conversations with clients taking or withdrawing from prescribed psychiatric drugs."6 I am chair of the International Institute for Psychiatric Drug Withdrawal.
Millions of people around the world have been crying out for help getting off psychiatric drugs for decades, while supporting one another to come off the drugs very gradually. Tapering strips have been found helpful by many. Ideally, people should be seeing their GPs as well as Facebook groups, but, sadly, people in these groups are saying that people on Facebook who are withdrawing are more knowledgeable and helpful than their doctors.
It is really exciting that the NHS is now planning to provide long-overdue support for people struggling to withdraw from antidepressants, benzodiazepines, and other prescribed medicines. We hope the rest of the world will watch and learn.
Examples of online support groups:
References
1. READ, J., CARTWRIGHT, C., GIBSON, K. (2018). How many of 1,829 antidepressant users report withdrawal symptoms or addiction? International Journal of Mental Health Nursing, 27, 1805-1815.
2. READ, J. (2020). How common and severe are six withdrawal effects from, and addiction to, antidepressants? The experiences of a large international sample of patients. Addictive Behaviors, 102, 106157.
3. WHITE, E., READ, J., JULO, S. (2021). The role of Facebook Groups in the management, and raising of awareness, of antidepressant withdrawal: Is social media filling the void left by health services? Therapeutic Advances in Psychopharmacology. doi: 10.1177/2045125320981174
4. READ, J., RENTON, J., GEEKIE, J., HARROP, C., DOWRICK, C. (2020). A Survey of UK General Practitioners about depression, antidepressants and withdrawal: Implementing the 2019 Public Health England Report. Therapeutic Advances in Psychopharmacology, 10, 1-14.
5. TAYLOR, S., et al. (2019). Dependence and withdrawal associated with some prescribed medicines: an evidence review. Public Health England, London.
6. GUY, A., DAVIES, J., RIZQ, R. (Eds.) (2019). Guidance for Psychological Therapists: Enabling conversations with clients taking or withdrawing from prescribed psychiatric drugs. London: APPG for Prescribed Drug Dependence.
