Findings From a Survey of 530 British Antidepressant Users

I am privileged to be Chair of the International Institute for Psychiatric Drug Withdrawal, which hosts its 3rd online conference next month (October, 2023) . I have written before, here, about the over-prescribing of psychiatric drugs, including to children. I have also discussed the problem of withdrawal from antidepressant and antipsychotic drugs. International surveys conducted with colleagues found that just over half of people who try to come off antidepressants experience withdrawal symptoms. Only 2 percent of the people in these surveys had been told about the risk of withdrawal effects. Our review of all relevant studies found that, on average, 56 percent experience withdrawal, and about half of those people describe these symptoms as “severe.”

On June 19, 2023, the prestigious BBC documentary program Panorama broadcast a groundbreaking expose called “The Antidepressant Story.” Besides documenting the drugs’ adverse effects—including sexual dysfunction and withdrawal symptoms—it also revealed that the chemical imbalance notion used to justify the use of these drugs has no basis in fact, and noted the role of drug companies in promoting the drugs without telling all they knew.

Following the documentary, 530 people in the UK who had taken antidepressants for at least a month in the past five years responded to an anonymous online survey designed by the Lived Experience Advisory Panel for Prescribed Drug Dependence.

The sample was predominantly white women between 25 and 64 years old. Although self-selected, the sample as a whole did not hold particularly negative views about antidepressants in general. More described them as “helpful” (41 percent) than “unhelpful” (33 percent), with 26 percent being “unsure.”

The results speak for themselves. They are similar to those of a larger international survey.

What has been your experience with stopping antidepressants?

Able to stop with no major issues 10 percent

Able to stop with some difficulty 10 percent

Able to stop with great difficulty 34 percent

Unable to stop despite wanting to 46 percent

(for those unable to stop): Why were you unable to stop?

Withdrawal symptoms were intolerable 72 percent

Return of my underlying condition 6 percent

Both 16 percent

Not sure 6 percent

Did you experience withdrawal effects when you stopped antidepressants or reduced the dose?

No withdrawal symptoms 6 percent

Mild withdrawal symptoms 9 percent

Moderate withdrawal symptoms 15 percent

Severe withdrawal symptoms 70 percent

How long did the withdrawal symptoms last?

One month or more 85 percent

Four months or more 68 percent

More than 12 months 44 percent

How did the process of withdrawal affect your life?

No negative impacts 9 percent

Reduced social activities 70 percent

Impaired work function 54 percent

Relationship stress or breakdown 53 percent

New or increased suicidality 44 percent

Took sick leave from work 34 percent

Financial difficulties 30 percent

“Other” 24 percent

Reduced workload 20 percent

Inability to access benefits because of lack of recognition by NHS 20 percent

Loss of job 18 percent

Physical accidents 16 percent

Under “other,” 5 percent spontaneously reported PSSD (Post-SSRI Sexual Dysfunction), and 2 percent reported being bedbound or housebound for months or years.

Which of the following describes your experience with NHS (National Health Service)?

NHS services have been helpful and adequate to help me stop antidepressants 8 percent

Told I can stop in a few days or weeks without problems 45 percent

Unable to get informed advice about how to safely stop antidepressants 44 percent

Told my withdrawal symptoms were a return of my underlying condition 41 percent

Told I can stop by taking medication every other day 35 percent

Told there are no withdrawal symptoms from stopping antidepressants 31 percent

Doctor refused to prescribe liquids or other ways of making smaller doses 21 percent

How helpful did you find the NHS in helping you to stop an antidepressant?

Very unhelpful 46 percent

Unhelpful 21 percent

Neither/not sure 23 percent

Helpful 4 percent

Very helpful 6 percent

Which of the following would you like to see provided by the NHS?

Education for prescribers on withdrawal effects and how to taper safely 83 percent

Better information around the risk of withdrawal effects when antidepressants are offered 77 percent

More alternatives to medication 74 percent

Easier availability of smaller doses of medication (e.g., liquids or smaller dose tablets) 73 percent

Individualized, flexible withdrawal plan 68 percent

Specialized clinics to provide advice and support while stopping 58 percent

24-hour helpline to provide advice and support while stopping 58 percent

Were you told about withdrawal effects when first prescribed antidepressants?

Yes 3 percent

No 92 percent

Not sure 5 percent

Typical comments included:

• “Do not prescribe antidepressants for ‘situational’ depression—i.e., bereavement, relationship breakdown, etc.”
• “We need more local support for patients going through withdrawal from these drugs. Special clinics and phone helplines.”
• “The patient has nowhere to turn as withdrawal is not being recognized. It is the most isolating torture I have ever endured.”
• “More information should be given on side effects and withdrawal so that informed choice can happen.”
• “If I was battling a heroin addiction, I would be helped and told I was brave, but because I took a licensed drug from a doctor, I am left alone to suffer. Suffer so much that death would be welcome.”

In 2019, a comprehensive report by Public Health England identified that one in seven people are taking antidepressants in England, with even higher rates among older and poorer people and women. It also documented the extent of the withdrawal problem and made a series of recommendations to the NHS about the urgent need for dedicated services for people trying to come off these drugs. Sadly, none of those recommendations has yet been implemented.

On September 14, 2023, the BBC announced that the NHS had withdrawn funding from England’s only helpline for coming off antidepressants, which will close at the end of this month.

Meanwhile, in the absence of professional services, thousands of people are relying on online support groups, including:

Surviving Antidepressants

Let's Talk Withdrawal, and

Inner Compass Initiative

You may also find this IIPDW video helpful (in five languages).

The international movement for recognition of antidepressant withdrawal effects and for services for the millions of people who urgently need them grows ever stronger. You may want to attend an upcoming Inner Compass Initiative event, or our (IIPDW) conference, both in October, 2023. The conference will take a closer look at the situation in the UK for safe deprescribing services, and also offer practical advice for doctors and patients approaching antidepressant withdrawal.