A majority of patients seeking medical support when discontinuing antidepressants found their prescribing doctors to be unhelpful, according to the results of the second-largest international survey ever conducted on the subject.
Published in the Journal of Psychiatric Research, the survey highlights the inadequate support and resources available to patients trying to quit antidepressants, forcing them to turn to online support groups for help. Participants in the survey also identified the need for additional resources, such as smaller doses and a 24/7 helpline, to aid in their transition off the medication.
The lead author, John Read, Professor of Clinical Psychology at the University of East London and Chair of the International Institute for Psychiatric Drug Withdrawal (www.iipdw.org), commented:
“These recommendations, by hundreds of patients who have been badly let down by their doctors, precisely echo the recommendations of the comprehensive Public Health England report in 2019. Yet, to date, the NHS has still not put in place a single specialised service, helpline, or training programme for doctors.”
Antidepressant prescription rates are high internationally, including in countries like the United Kingdom, the United States, Australia, Belgium, Canada, and Portugal. Across the U.S. and the U.K., antidepressant drugs are prescribed disproportionally to women. In the U.K., they are also more often prescribed to those from low socioeconomic backgrounds and older people.
These high rates have been attributed to increases in the length of prescription periods rather than new prescriptions, with average duration doubling in both the U.S. and U.K. since the mid-2000s. For example, half of the antidepressant users in England take them for longer than two years, and half of the antidepressant users in the U.S. take them for at least five years. Yet, what these antidepressants are being prescribed for long-term appears unknown in some cases, as 58% of individuals taking antidepressants in the U.K. for more than two years were not found to meet the criteria for any psychiatric diagnosis, and 31% lacked a clear clinical reason for continuing to be prescribed an antidepressant.
Difficulty discontinuing antidepressant use may be contributing to longer prescription durations. Stopping antidepressant use has been associated with withdrawal symptoms for more than half of those who attempt it, with about half of those individuals experiencing severe withdrawal symptoms, which can include both physical and psychological symptoms like suicidal ideation, flu-like symptoms, anxiety, and gastrointestinal symptoms, among other effects. Often, antidepressant withdrawal symptoms are confused with relapse of depression by both patients and their providers.
Lack of guidance about how to best assist patients with tapering off medication is also part of the problem. While the U.K.’s National Institute for Health and Care Excellence (NICE) recently updated its guidelines in 2022, it has been criticized for lacking practical advice regarding implementing it in clinical practice.
In the current study, 1,276 members of Facebook groups for antidepressant users from 49 countries, predominantly the U.K. (18.7%) and the U.S. (34.6%), completed an online survey. The majority of participants were white (92.4%), women (79.5%), had an average age of 45.8 years old and had completed undergraduate education (34.1%).
As noted earlier, the majority of participants found their prescribing provider to be ‘unhelpful’ in supporting their tapering off antidepressants. Additionally, most respondents reported that their prescriber was unfamiliar with withdrawal symptoms (82%) and denied that discontinuing antidepressants could lead to withdrawal (60%).
One participant shared: “I think a lot of doctors have no idea! NO ONE explained the withdrawal symptoms to me, NO ONE told me how dependent you become.”
One-third of participants did not reach out for support from their clinician to help them stop their medication, with half of these individuals expressing that they did not feel their prescribers had sufficient knowledge of how to taper safely. In addition, some of these participants reported that negative past experiences, such as being told to stop abruptly or that withdrawal does not exist, informed their decision to not seek help from their prescriber.
One participant reflected on their experience: “She just wanted me to stop cold turkey. She doesn’t believe in withdrawal.”
Moreover, only 1 in 6 participants felt their prescribers could tell the difference between antidepressant withdrawal symptoms and depressive relapse. Others discussed how their prescriber suggested increasing or changing medications instead of stopping them when participants sought their help stopping.
One participant stated their provider: “Told me that the symptoms that I knew were side effects were a relapse of the original problems.”
Another reported: “I had been on antidepressants on and off for 25 years, when I was struggling with withdrawal, I was only ever offered more antidepressants.”
Participants also expressed concern about the lack of resources available to assist with tapering. The services that patients would have found ‘very useful’ but had been unable to access include:
- ‘Smaller doses (e.g., tapering strips, liquid, smaller dose tablets) to ensure gradual reduction’
- A health professional providing a personalized, flexible reduction plan.’
- A telephone/online, video/online chat helpline.’
Co-author Mark Horowitz, a psychiatrist at University College London, added:
“Our survey respondents are using Facebook groups because their doctors did not have the skills to help them safely come off these medications. The consequence of this is much unnecessary suffering which can lead to huge impairment – including job loss and relationship stress.
We urgently need to up-skill doctors and provide them with the tools they need (like liquid versions of drugs) and time to oversee careful tapers. While this is being undertaken a telephone helpline is urgently needed to plug the gap in services that are currently failing patients.”
The article concludes:
“Our findings indicate, in keeping with previous studies, that clinicians require upskilling in safe tapering of antidepressants and that patients need specialised services to help them stop safely.”
Limitations of the study include its population of predominantly white, female participants and underrepresentation of minority racial and ethnic groups, its inability to reach individuals without access to online support, and the self-selection nature of the survey, as the participants may be reflective of a group of persons who are more adversely affected by withdrawal symptoms.
Access to support in discontinuing antidepressants is sorely needed to ensure that individuals who would like to discontinue their medication can do so safely, under the direction of prescribers with expertise in supporting them best. Increasing attention has been paid to antidepressant tapering, such as in the updated NICE guidelines discussed earlier and in recently published guidance that offers information for primary care doctors regarding how to best support their patients in stopping their antidepressants.
Antidepressant discontinuation has also received more attention in research, with current research urging that very slow tapering is the best approach to stopping antidepressant use. Additional research has highlighted risk factors for withdrawal, such as using drugs for a longer duration, at a higher dose, and using certain types of antidepressants, like paroxetine (Paxil).
As highlighted by the authors and participants of the current study, this topic must continue to receive attention and support so that people can safely discontinue their medication alongside the support and informed direction of their prescribers rather than being unnecessarily stuck on it long-term due to lack of guidance and support about how to stop.
Read, J., Moncrieff, J., & Horowitz, M. (2023). Designing withdrawal support services for antidepressant users: Patients’ views on existing services and what they really need. Journal of Psychiatric Research, (161), 298-306. https://doi.org/10.1016/j.jpsychires.2023.03.013 (Link)
Editor’s Note: Part of MITUK’s core mission is to present a scientific critique of the existing paradigm of care. Each week we will be republishing Mad in America’s latest blog on the evidence supporting the need for radical change.
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