Withdrawal Effects of Antipsychotic Drugs Are Still Ignored

Last month I wrote an open letter, as Chair of the International Institute of Psychiatric Drug Withdrawal, requesting that the UK’s National Institute for Health and Care Excellence (NICE) reverse its decision to exclude antipsychotic medications from the guidelines NICE is writing for "Medicines Associated With Dependence or Withdrawal Symptoms."

Here is a slightly abbreviated version of the 10 reasons we gave.

1. An important scientific paperdescribing how patients can safely come off antipsychotic medication while minimising the risk of withdrawal effects, and risk of relapse, has just been published.¹

Professor David Taylor, the study’s senior author, and Professor of Psychopharmacology at King’s College London, commented: "Antipsychotics induce long-lasting changes to nerve cells in the brain and they need to be withdrawn very slowly (and in a particular way) to allow time for the brain to reset."²

2. The first systematic review and meta-analysis on the occurrence of withdrawal symptoms after antipsychotic discontinuation found that "a weighted average of 53% individuals showed withdrawal symptoms after abrupt antipsychotic discontinuation and placebo substitution."³ A survey of antipsychotic users (the largest to date — from 30 countries) found that 65% reported withdrawal effects when trying to stop and that 51% of these described their withdrawal effects as "severe."⁴ Participants’ comments included:

“Withdrawal from the anti-psychotic was torturous and took a very long time” and

“Withdrawal symptoms were always blamed on relapse of my ‘disease.’”⁵

3. Other bodies that support the inclusion of antipsychotic drugs in the NICE review include: all four groups initially participating in NICE’s own guideline scoping, the All-Party Parliamentary Group for Prescribed Drug Dependence, and the UK’s largest mental health charity, Mind. Even drug companies Grünenthal and Pfizer support inclusion.

4. NICE’s position that "these medicines are prescribed for very specific defined conditions" and therefore the issues are dealt with by NICE guidance for schizophrenia, is untenable. The current NICE guidance on schizophrenia (CG178) relating to the safe stopping of antipsychotics only states “if withdrawing antipsychotic medication, undertake gradually and monitor regularly for signs and symptoms of relapse.” This is clearly inadequate to guide prescribers on how to stop these medications safely. We trust NICE will urgently update this guidance also.

5. Furthermore, antipsychotic drugs are increasingly prescribed "off label," e.g. for insomnia and anxiety, and for "behavioural management" in prisons and care homes. Only around 50% of people prescribed antipsychotics in the UK have a psychotic condition.⁶ The care of the other 50% will not be guided by the schizophrenia guidelines even after NICE has updated them.

6. Antipsychotic drugs are one of the fastest-growing classes of drugs being prescribed in England, increasing from 9.4 million prescriptions in 2015/2016 to 11 million prescriptions in 2019/2020.

7. Antipsychotics are often prescribed against the person’s will. This creates a particularly strong duty to carefully consider withdrawal effects when making treatment decisions.

8. Without formal guidelines for withdrawal, long-term prescription of antipsychotics is common and can cause severe, sometimes dangerous, adverse effects.

9. One reason NICE has given to justify their exclusion of antipsychotics is that the Royal College of Psychiatrists, unlike other mental health groups, opposes inclusion. We believe that NICE has been far too dependent on the views of the College for far too long and that this may have facilitated decades of denial and minimisation of the withdrawal effects of other psychiatric drugs, such as antidepressants.

10. There are already two sets of guidelines^{7, 8} that could, along with this week’s paper by Mark Horowitz and his colleagues,¹ form the basis for the development of NICE guidelines for antipsychotic withdrawal. We hope these will be helpful to you in the coming months.

Perhaps we should have listed the adverse effects of antipsychotic drugs^{4, 5, 9} which lead so many people to come off them, often with no support. They include drowsiness/sedation, serious weight gain, diabetes, cardiovascular problems, reduced brain volume¹⁰ and shortened life span.¹¹

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While antipsychotics may have some short term benefits, primarily sedation, long term use leads to negative outcomes for many people.¹²

There is currently very little research into just how slowly people should come of these drugs, and with what sort of strategies and support.^{1, 13}

The International Institute of Psychiatric Drug Withdrawal believes that it is only a matter of time before decades of minimisation of the withdrawal effects of antipsychotic drugs will cease, as has recently been the case for antidepressants. Only then can the millions of people trying to get off these drugs receive the help they need to do so safely.