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Research

Largest study of people’s experiences on antipsychotic drugs published

The study, led by Dr John Read at the School of Psychology, is the largest of its kind

A new University of East London-led study of people’s experiences with antipsychotic medication has been published today (February 12), with over half of them reporting only negative ones.

For the largest study of its kind, published in leading psychiatry journal Schizophrenia Bulletin, 650 people from 29 countries responded in an online survey to the open question: ‘Overall in my life antipsychotic medications have been ……….?’

Of the responses, 14 per cent reported purely positive experiences, 28 per cent had mixed experiences, and 58 per cent reported only negative ones.

Analysis identified three main negative themes: ‘adverse effects’, ‘unhelpful interactions with prescriber’ and ‘withdrawal/difficult to get off them’.

Adverse effects included weight gain, emotional numbing, cognitive dysfunction, sedation, akathisia, effects on relationships, and suicidality. Unhelpful interactions with prescribers included lack of information, support, or discussion of alternatives.

The two positive themes were ‘symptom reduction’ and ‘sleep’. The only mixed theme was ‘short-term good, long-term bad’.

Dr John Read, professor of clinical psychology at the University of East London and lead author of the study, said, “These 650 people confirm the findings of smaller drug trials in which antipsychotics are better than placebo for only about 20 per cent of people and cause a frightening array of severe adverse effects.

“For decades the drug companies have exaggerated the benefits and downplayed the side effects of these powerful tranquillising agents.”

The findings are illustrated by over 80 quotes from the respondents, including:

“They stopped the voices, and bought me back to reality”

“My life is hell without them”

“They are not ‘antipsychotic’ they just helped me sleep” 

“The info from the doctors is very slanted and does not fully warn you of long-term effects” 

“If I had known about the risks, I would never have taken them”

“2A disaster. Anti-psychotics took away the best years of my life”

“They dumb me down & numb me up, I have no happiness or joy”

“They made me feel less than human, dead inside” 

“It did not make the voices go away it increased the amount of voices and how often I heard them” 

“Antipsychotics made me suicidal, and I tried to kill myself. I've never been suicidal when not on antipsychotics” 

“My body is still scarred with stretch marks from the uncontrollable weight gain”

“Withdrawal from the anti-psychotic was torturous and took a very long time. I would never choose to take them again, ever”


The paper concludes, “Clinicians should pay more attention to the need for respectful and collaborative patient-prescriber relationships. This must include providing the full range of information about antipsychotics, including potential benefits and harms, the difficulty in withdrawing, and information on alternatives treatments such as psychological therapies.”