Largest Survey of Antipsychotic Experiences Reveals Negative Results

A new survey exploring antipsychotic user experience finds that more than half of the participants report only negative experiences.

Ayurdhi Dhar, PhD
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In a new international survey, the largest one to date, researchers found that more than half of antipsychotic users report only negative experiences with the drugs. The online study was conducted by John Read and Ann Sacia of the University of East London, and published in the leading journal, Schizophrenia Bulletin. Six hundred fifty people from 29 different countries responded to questions asking about their first-person experience of being on antipsychotic drugs. Researcher John Read commented:

“These 650 people confirm the findings of smaller drug trials in which antipsychotics are better than placebo for only about 20% 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 tranquillizing agents.”

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Traditionally, psychiatry has only focused on the reports of mental health professionals to declare a treatment successful or ineffective. This is especially true of the evidence base for antipsychotic drugs, which have been marred in controversy for decades.  However, antipsychotics remain the most prominent treatment for schizophrenia and other psychotic disorders, and are regularly used for other conditions like “borderline personality disorder,” “depression,” and are routinely administered to children in foster care.

While studies have attributed cognitive decline and stunted recovery to antipsychotic use, less attention has been paid to patients’ first-person experiences on these drugs. In one case where a psychiatrist tried the drugs and documented his experience, he wrote:

“I can’t believe I have patients walking around on 800mg of this stuff. There’s no way in good conscience I could dose this BID (sic) unless a patient consented to 20 hours of sleep a day. I’m sure there’s a niche market for this med though. There has to be a patient population that doesn’t want to feel emotions, work, have sex, take care of their homes, read, drive, go do things, and want to drop their IQ by 100 points.”

Other adverse effects of antipsychotics include poor heart health, brain atrophy, and increased mortality. Only recently have researchers started exploring patient experiences on antipsychotic medication. There is some evidence to suggest that some service users believe that they undermine recovery. However, these first-person reports do not play a significant part in how these drugs are evaluated.

Psychosocial approaches, like the open dialogue approach, the hearing voices movement, and other indigenous forms of help, suggest that psychotic symptoms can be addressed with minimal drug use.

This current survey touted as the largest one yet comes at a time when antipsychotics are under increased scrutiny. Six hundred fifty survey users across 29 countries answered questions on The Experience of Antidepressant and Antipsychotic Medication Survey. For this study, Read and Sacia used the responses on two open-ended questions: “Overall in my life, antipsychotic medications have been ____” and “Is there anything else you would like to say, or emphasize, about your experience with antipsychotic drugs?”

A thematic analysis was conducted, and three units of study were categorized: positive, negative, and mixed. Read and Sacia found that only 14.3% reported that their experience on antipsychotics was purely positive, 27.9% of the participants had mixed experiences, and the majority of participants (57.7%) only reported negative results.

Around 22% of participants reported drug effects as more positive than negative on the Overall Antipsychotic Rating scale, with nearly 6% calling their experience “extremely positive.” Most participants had difficulty articulating what was positive about their experience, but around 14 people noted a reduction in symptoms, and 14 others noted it helped them sleep.

Of those who stated they had adverse effects, 65% reported withdrawal symptoms, and 58% reported suicidality. In total, 316 participants complained about adverse effects from the drugs. These included weight gain, akathisia, emotional numbing, cognitive difficulties, and relationship problems. One patient stated:

“My first and only suicide attempt was because of the restlessness of akathisia. No one would believe how much pain I was in.”

Another noted: “They took away the one thing I had previously been able to rely on: my mind, and rendered it useless.”

Similar results were reported in a recent review, which found that while some patients reported a reduction in symptoms on antipsychotics, others stated that they caused sedation, emotional blunting, loss of autonomy, and a sense of resignation. Participants in the current survey also complained of the lingering adverse effects of antipsychotics, long after they had discontinued their use.

Importantly, these negative themes also included negative interactions with prescribers of the medication. Participants reported a lack of information about side-effects and withdrawal effects, lack of support from prescribers, and lack of knowledge around alternatives; some noted that they were misdiagnosed, and the antipsychotics made matters worse.

One participant said: “I was not warned about the permanent/semi-permanent effects of antipsychotics which I got.” Another noted: “Most doctors do not have a clue. They turn their backs on suffering patients, denying the existence of withdrawal damage.”

This is an important finding as previous research has shown that positive relationships with one’s mental health provider are considered essential to recovery by many patients experiencing first-episode psychosis.

Read and Sacia write that the main conclusion is that service-users want clinicians to develop respectful and collaborative relationships with them. They write that this requires:

“… the provision of full information about all possible adverse effects, including sedation, suicidality and withdrawal effects, and about alternative treatment pathways; and responding respectfully and therapeutically when patients voice the sort of concerns raised in this study and the previous 35 qualitative studies.”

The researchers note that the study has certain limitations, like the use of convenience sampling. Additionally, its online nature could restrict use to the economically advantaged, given that they have easy access to the internet.

 

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Read, J. & Sacia, A. (2020). Using open questions to understand 650 people’s experiences with antipsychotic drugs. Schizophrenia Bulletin. First published online: 12 February 2020. https://doi.org/10.1093/schbul/sbaa002 (Link)

13 COMMENTS

  1. A shrink gets a haircut. He complains about the haircut. The hairstylist says, your account of your feelings about your haircut do not matter.
    Another shrink has a meal at a restaurant. He sends his steak back. The waitress and cook refuse to acknowledge that he does not like his steak.
    Another shrink is treated by his doctor for heart trouble and high blood pressure. He experiences unpleasant effects. His doctor denies it is occurring, and adds another drug.

    A shrink is held against his will and given antipsychotics. He does not like being held against his will and finds the meds uncomfortable. He feels angry. After a while he feels depressed.
    After more time he feels suicidal. He acts irrational.
    Which really prove that he needs the meds plus more.

    Shrinks like good treatment.

  2. To the list of platents hovering over one forced on, and forcing them:

    A girl named [redacted], the reincarnation of Charlotte Bronte, working at a foster care facility, but mostly for those called “retarded” or cognitively challenged, WHY such people are put on what’s listed above finally clearly, and the rest.

    So her x-husband (don’t ask me the story, to have to repeat it without serious yowling like what happens when you swing a dead cat by the tail and it starts yowling anyhow giving sign that Jesus is around, the whole history of it which rivals a serial killers, and he, the x was Rasputin) he had stopped working at a place he was forced to dole out such “meds,” and I had the nerve to point out that this didn’t mean he didn’t have concern for the people, because he wasn’t playing the game of catch one who’s vulnerable enough to think they are being helped. This woman who followed me home, took up so much time that I wasn’t walking the dog of my parents house being a different excursion, who got her own house after making sure she made me think I would get another to rent she first sat in instead, and in the mean or somewhere after or before time invited me over to clean the apartment that wasn’t interim but before she moved who knows how many times afterwards as well with another guy or three she changed warrants for, to instead accuse me of being difficult to get close to when I didn’t want to get high with her and the guy she’d been complaining about non-stop who WAS on such meds, and wasn’t her x or another of them; But heh, I point out not handing out such meds is not a sign of not caring, and she explodes in amplified anguish embellished with turgid tears of desire, hurt that I dared not make her out to be compassionate in her devices. Since, she’s had at least two children with different guys, one of the fathers was murdered when he gave the impression of being inchoate in his sincerity; and with yet another she’s now in “domesticity”.

    It’s not just those that produce the meds, those that advertise them, those that patent them, prescribe them and stuff them down the throats of innocent victims, it’s also those that out of kindness make it seem like it’s part of a necessary ritual. If you take that percentage of brain washing out of this study, how much is left at all?

  3. Imagine that you filled a cast-iron bathroom and suddenly changed your mind about washing. The first thing that comes to mind is to flush water. But it is not known when it will be next time. Antipsychotics act on the principle jump into the water as hard as possible to free up the volume (due to the bad pipes). Psychologists recommend heating a metal surface to increase the volume and possibly partially evaporate unnecessary water. In prison you will be advised to wait for the winter so that water will evaporate naturally, but there is a risk of becoming hebephrenic. The logical way seems to taste the water and if it’s good – gradually drink everything through the drinking straw.

  4. Wow, so the satisfaction ratings for these drugs are 6% approve and 60% disapprove. So the odds are 10-1 that these will make your life subjectively worse. And that’s not even counting the long-term effects like diabetes, heart disease, weight gain and early death, which may yet effect the 6% who approve. Yet this is the standard of care?

    • mhmm, that is why shrinks make the decision with a kind of detached gestapo manner.
      “here, take these, in this much amount”
      They are SO bored out of their skulls, prescribing crap again and again. Yet they WILL NOT acknowledge people.
      They treat people like idiots, it is as if they are too unaware that people realize this. Medical doctors do this all the time. The whole establishment is so wrapped up in the power aspect. It is why the new conversations are about patient/doctor relationship.
      But those conversations are not going anywhere. We are stuck with the discontent.

      • Once my medical records were handed over, and I confronted my psychiatrist with all his misinformation about me in my medical records, proving he was the highly delusional person in the room, not I. He declared my entire life to be a “credible fictional story.” Then, at my last appointment with him, he proceeded to turn himself into a “dangerous,” further attempted murdering, “paranoid schizophrenic,” in front of my husband.

        So those psychiatrists who “WILL NOT acknowledge people,” don’t bother to actually listen to people, or don’t believe people, can be pointed out as the fools that they actually are. It was kind-of fun. My husband was quite impressed with what fools I made of that psychiatrist, and his receptionists, on my last appointment with him.

  5. Antipsychotics have not been created for the benefit of the patients but for the benefit of the hospital personnel and families of the patients. This is why little to no people take these drugs by their initiative, but forcedly. As such, they aren’t medicines. Their classification as medicines is a fraud.

    People are confused by this classification, inclusively the law makers and the psychiatrists deliberately maintain this confusion and take advantage of it.

    There must be a campaign informing the public about 1). the real purpose of antipsychotics and about 2). the physically and psychologically harmful effects of this category of toxic substances.

    – Reducing dopamine activity by 70% means every function in organism is disturbed. Forcing someone to ingest such substances should be criminalized. In fact, even their voluntary use should be made illegal.

    – The very idea of reducing the brain activity is criminal, an infringement of human rights, a crime against humanity. Psychiatrists are no less monsters than mengele or other nazies

    – Short term use of antipsychotics produces unimaginable suffering. Long term use of antipsychotics destroys the health and cognitive abilities

  6. I don’t understand that neuroleptics are a multiple billion dollar industry in the USA…and that a 650 person survey is more than a rain drop in that ocean. How many people use these drugs in the States? I heard they were being prescribed for insomia and weight loss.

  7. I’d like to add the the various class action suits against the pharmaceutical companies speak a lot louder than this survey. At first glance, it’s seems like a waste of ressources, energy, man hours, and so on and so forth. Why report it? Unless you’re doing a survey yourself. People have to stand up to the institutions and say “no”.

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