Patients express anger at doctors’ ignorance about antidepressant withdrawal effects

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Despite the astonishing increase in the prescribing and long-term use of antidepressants, many medical professionals remain ignorant of how to support patients in safely discontinuing antidepressant drugs and navigating withdrawal symptoms.

A recently published study highlights the frustration felt by antidepressant users who have suffered from a lack of professional support and suggestions for how doctors and healthcare systems can better support people coming off of antidepressants.

Although helpful for some, antidepressants can have adverse side effects prompting many to discontinue their antidepressants. This process, however, is described as severely challenging because of antidepressant withdrawal or the “physical and emotional symptoms that can emerge days, weeks or months after stopping antidepressants, which sometimes surpass the problems for which the drugs were prescribed.”

This difficult process and the well-documented lack of support by health professionals have forced patients to seek advice from online peer support groups, where people share their lived experiences of antidepressant withdrawal and provide support to others.

The need for support is not surprising since it is estimated that “approximately half of the tens of millions of people taking antidepressants will experience withdrawal symptoms when they try to reduce or come off them,” write researchers John Read, Mark Horowitz, Joanna Moncrieff, and Stevie Lewis, who has experience of withdrawal from antidepressants and is a member of The Lived Experience Advisory Panel for Prescribed Drug Dependence.

 

To inform health services about which supports are most needed during the process of reducing or discontinuing antidepressants, an anonymous survey was administered to members of online withdrawal support groups. Seven hundred eight members completed the following sentence: “A public health service to help people come off antidepressants should include…”.

The team of researchers reviewed all responses and categorized them according to themes. Participants were from 31 countries, with more than half either living in the USA or the UK.

The following seven themes occurred most: ‘Prescriber Role,’ ‘Information,’ ‘Other Supports/Services,’ ‘Strong Negative Feelings regarding Doctors/Services, etc.,’ “Informed Consent When Prescribed,’ ‘Drug Companies,’ and ‘Public Health Campaign.’ The most common response is that doctors must be better informed about withdrawal symptoms and how to help patients discontinue antidepressants gradually and safely. Furthermore, doctors need to believe patients about their withdrawal symptoms and not assume that the symptoms are because of their diagnosis of depression.

Many respondents highlighted the need for doctors to create an individualized plan that includes scheduled tapering. Other respondents pointed out challenges related to not having small enough doses to taper, one participant explicitly noting the need for “user-friendly methods” which would be “safer than the current method of counting tiny beads or grinding up tablets and weighing powder.” Another participant expressed, “I still have no clue how I am accurately going to divide one small table into ten identical pieces.”

Some respondents also reflected on initially being prescribed the drugs and criticized doctors for advertising antidepressants as entirely safe and not providing informed consent regarding the risk of withdrawal symptoms. In reference to this, many respondents suggested a public health campaign to raise awareness about the dangers of antidepressant withdrawal. Other supports and services mentioned included 24-hour crisis support and phone lines, psychotherapy and counselling, support groups, and patient-led services.

This paper also provides 125 direct quotes from participants, which illustrates strong feelings towards an entire healthcare system, including pharmaceutical companies, which have contributed to their suffering as antidepressant users. For example, respondents wrote:

“At some point in time, somebody is going to take this fight to where it needs to be – at the throat of big pharma – I hope I live to see that day…It is actually a crime that pharma companies can have these drugs on the market for 30++ years and not make it blatantly obvious the effects they can have on the human body.”

One expressed the need for doctors to “believe that withdrawal is very real and very dangerous and can last for a very long time after cessation of the drug.”

Another shared that “Drs and the pharmacist seem to know nothing helpful, and their comments and advice regarding the effects of the medication are more harmful than good.”

It is important to note that this survey is not representative of all people who take and choose to discontinue antidepressants. Findings also do not adequately represent the opinions of all service users because most participants identified as “White/Caucasian” and had college degrees. However, findings such as this must serve as a call to action for the healthcare system to adequately educate doctors on withdrawal and support those who choose to discontinue the use of antidepressants.

Mad In America and similar allies, such as the International Institute of Psychiatric Drug Withdrawal (IIPDW), support this cause and have several resources available:

  • The MIA Drug Withdrawal Resource page has information about withdrawal guides, educational courses, research studies, and personal withdrawal studies. Here you can also find a directory of providers who help people taper from psychiatric medications.
  • MIA also has a summary of antidepressant withdrawal protocols
  • And the IIPDW now has 1-hour training video to “explain the details of how to safely taper antidepressants, which will allow [prescribing medical professionals] to convert this guidance into improved clinical care.”

 

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Read, J., Lewis, S., Horowitz, M., & Moncrieff, J. (2023). The need for antidepressant withdrawal support services: Recommendations from 708 patients. Psychiatry Research326, 115303. https://doi.org/10.1016/j.psychres.2023.115303 (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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Tiffani is a doctoral student and researcher in the Sociology department at Northeastern University - Boston. Through her research, she advocates for a mental healthcare system that moves beyond pathologizing mental distress that is rooted in the lived experiences of social injustice and inequality. In doing so, Tiffani aims to promote a person-centered mental healthcare system that respects treatment preferences, adequately addresses social and structural determinants of mental health, and provides comprehensive and continuous care.