In a new opinion piece in Psychosis, psychologist Ruth Cooper of the University of Greenwich and her colleagues make a case against the long-term use of antipsychotic medication for psychosis and schizophrenia. They then advance their position that, given current evidence, the UK must explore psychosocial interventions and minimal medication approaches for patients.
Antipsychotic medication is the first line of treatment in the US and the UK. Criticisms have followed it through history and, more recently, become louder. Recent research has shown that people who stop taking antipsychotics tend to fare better in the long run and are more likely to recover. Others have focused on the numerous adverse effects of the drugs, especially their long-term effects. Most disturbingly, they have been associated with brain atrophy in children and causing decreased cortical thickness in adults.
Other criticisms have come from research on people’s experience with antipsychotics. Patients describe some benefits but also a reduced sense of self and agency. The biggest survey to date noted that most patients reported negative consequences of being on these drugs. Resultantly, there has been a push to develop guidelines on withdrawing safely from psychiatric drugs, as withdrawal effects from antipsychotic medications can be debilitating.
Cooper and her colleagues begin by citing the 1979 WHO findings that, when it came to psychosis, people in poorer countries with less access to medication did better than those in rich nations. While antipsychotics help reduce symptoms for some patients, they can be ineffective in others and have significant adverse effects. New research suggests that for every 6 people treated with antipsychotics, 1 person has improved beneficial outcomes.
There are also numerous reasons patients stop taking antipsychotics. The adverse effects can include “significant weight gain, diabetes, heart disease, movement disorders and structural changes in the brain including brain volume reduction… sedation, lethargy, emotional flattening and sexual dysfunction which can adversely impact on quality of life”.
Patients can be coerced into treatment which can impede the relationship between them and the mental health system, closing down opportunities for psychological treatments. The authors write that the UK’s NICE (National Institute for Health and Care Excellence) guidelines support shared-decision making between mental health workers and patients. As most patients retain their decision-making capacity, they have the right to choose alternative treatments if they desire. The authors write:
“Given the adverse effects of antipsychotics, ineffectiveness for some people, and further reasons for stopping described above, requests to stop or not take these drugs should be seen as a legitimate preference not, as some clinicians may assume, as ‘lack of insight.’”
The authors also note that antipsychotics became popular because they were thought to reduce relapse. Studies have also shown that stopping antipsychotics suddenly can lead to florid psychosis. However, while this was earlier confused with relapse, it is now hypothesized as a result of drug withdrawal caused by dopamine supersensitivity.
Thus, many patients want to get off their medications but have little guidance or help. Given the absence of national guidelines and pressure on mental health workers to discharge people, practitioners are often unsure about alternate interventions.
Under the pressure of service users who have developed their own resources to come off psychiatric drugs such as “The Harm Reduction Guide To Coming Off Drugs” and “The Inner Compass Initiative,” NICE has asked for further research into psychosocial interventions. More recently, the Royal College of Psychiatry also published a set of resources and guidelines to withdraw from antidepressants, signaling building support for the deprescribing movement.
The authors explore the literature around minimal medication approaches to psychosis across the world. Historically there have been numerous places where minimal medication approaches and psychosocial treatments have been attempted – Soteria House in the US and Switzerland, Kingsley Hall and Villa 21 in the UK, and currently Open Dialogue in Finland (earlier need-adapted treatment).
These places have either not used antipsychotics, or minimized their use (delaying them by 6 weeks), or used benzodiazepines for a short period instead. They focus on providing emotional and practical support and sometimes on the process and experience of psychosis.
Cooper and her colleagues write that there are two major systematic reviews of these approaches, first by Calton and colleagues in 2008 and another by Cooper and Laxhman in 2020. Reviewing 9 psychosocial treatments in 2,250 patients, the analysis found that most treatments, when compared to the antipsychotic-using control group, were at least as effective as the control group – both in symptom reduction and improving functioning. This was achieved via far less antipsychotic use and with no evidence of any greater harm in the minimally medicated patients. However, there are many limitations with these promising studies, such as the absence of high-quality research, small samples, and the exclusion of high-risk patients.
Recently an Australian trial compared, among first-episode psychosis patients, an antipsychotic group with another group that received intensive psychosocial treatment (care-coordination, CBT, psychoeducation, family intervention, and close monitoring). After 6 months, and then 1 and 2 years, no difference was found between groups. Drop-out rates were high in both groups. Cooper and colleagues write:
“Despite this, the study gives preliminary evidence that an intensive psychosocial treatment package, similar to what may be already available in early intervention services, could be a potential alternative to antipsychotics for some. A larger trial of this treatment package is certainly warranted.”
Currently, in Vermont and parts of Norway, institutions have established minimal medication approaches under pressure from service users. Formal evaluation of these initiatives has not yet been published.
The authors note that there are several approaches to alternatives to medication (or with minimal medication) that can be offered to patients who prefer them.
First, different types of psychosocial interventions can be used, such as “emotional and practical support, talking therapies and psychoeducation… ‘being with’ people who are actively psychotic, in a non-intrusive manner, practical, social, and creative activities such as exercise, art’ and animal therapy, and peer support from people with lived experience.”
Second, alternatives like The Hearing Voices Movement allow people to see their voices as meaningful and help incorporate them into their life experience by working with the voices.
Third, building a better relationship with family members and friends who are often concerned about relapse is important; this involves including them in appointments and giving them good information. They can provide essential support, and if not, then places like Soteria provide relief from difficult familial circumstances. Short-term use of benzodiazepines (less than 1 month because of their addictive properties) can alleviate some anxiety.
Lastly, plans to manage deterioration and relapse should be made in collaboration with other services. A strong plan on how to deprescribe and get off antipsychotics is important. Research has shown that a very slow taper is most effective in reducing withdrawal effects. Tapering strips are also of use. This is the period when people might need extra support and close monitoring.
Some might benefit from completely stopping the use of the drugs, while others from maintaining minimal dosage. Good information on withdrawal symptoms and recognizing and dealing with them must be given to patients and their families.
The authors conclude by noting:
“We have an opportunity now to listen and respond to service users and, as in Norway and Vermont, governments could encourage the provision and further research of minimal medication services to provide people with a genuine choice about their treatment. Further discussion, in consultation with service users, of the key elements such a service should include is needed.”
Cooper, R.E., Mason, J.P., Calton, T., Richardson, J. & Joanna Moncrieff (2021) Opinion Piece: The case for establishing a minimal medication alternative for psychosis and schizophrenia, Psychosis, DOI: 10.1080/17522439.2021.1930119 (Link)
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The authors hit the nail on the head when they say that governments need to get involved in looking at the
harm the industry of and in the name of “mental health” have been involved in.
“mental health” sounds really good and positive but there is an awful dirty business going on behind the mental health doors, governments are completely complacent and part of that dirt.
Every single person understands that the road to “mental whatever” is not some magical wand we can wave. It is a shit load of hard work and after all, who wants to be a 20, 30, 50 or 80 year old person’s handholder.
YET, that IS what we need to do is to create places where people find it easier to be standing on their two feet, and that there is not an “illness” in many people needing a hell of a lot more support than others.
Psychiatry seems to have some idealistic tunnel vision, which is really only about their own well being.
We have to decide if we are just animal, or are we capable of more than.
There seems to be a void, or an absence of thinking about the in-between slighty beyond “the minimal” and then freer and clearer as experienced by the client. The evolution of laws etched in policy directive, the management of the healthcare industry and then the singular encounters with humans whose thinking is attempted to be coralled. But if the idea is minimal, is this not a question of infinite playing with an assumption that precipitates a standard, that will be different for each person? To ahve the conversation within the self, that can be pharmacized without engaging the informed decision making of the ciitzen seems to be an issue rooted in a conversation that is just beneath the surface of a language couched with respect to the courtroom heaering.
As an expert by experience, and close to 15 years of research now. I totally agree that withdrawal from the neuroleptics can result in a drug withdrawal induced “super sensitivity manic psychosis” – even if weaned from the drugs VERY slowly (over 3 years, after only being severely anticholinergic toxidrome poisoned for six months).
But, at least in my case, that drug withdrawal induced “manic psychosis” was infinitely less bothersome to me, than the anticholinergic toxidrome induced “psychosis,” that I’d experienced while on the antipsychotics. Being “manic” just felt like having ‘God speed.’ And the “psychosis” aspect merely functioned as an awakening to my dreams, which culminated in a ‘born again’ type story.
I did deal with two drug withdrawal induced “super sensitivity manic psychoses,” since I was weaned off the drugs twice. Each lasted for approximately 3 months. The first was misdiagnosed as a “return of symptoms” during an unneeded hospital stay, and happened approximately 6 months after being weaned from all drugs. The second happened a full 2 1/2 years after, again, being weaned off all drugs.
During that hospital stay, the same doctor who “snowed” me in the first hospital, met me at a different hospital, despite her NOT being a psychiatrist that I ever chose to hire. I was able to embarrass and convince all the psychiatrists-in-training with her, that I didn’t think she even spoke English. So I was only minimally drugged, and let out without any drugs, nor need for follow up care. And the “bipolar” misdiagnosis was downgraded to an “adjustment disorder” diagnosis. But I have had no other “manic psychoses,” nor psychiatric problems, in the past 10 years.
As to other withdrawal effects I experienced, I was compelled to bang my head into my pillow, for a month or so. I did end up with a mild case of tardive diskynesia, a wiggly ankle when I wake many mornings, which still exists 10 years later. I do also still have the antidepressant withdrawal induced ‘brain zaps,’ which were originally misdiagnosed as “bipolar,” almost 20 years ago. Oh, I had a “grimace,” I thought of it as my ‘smiling disease,’ that lasted for maybe three months. There were also some odd sexual side effects, but my understanding is that sex is related to the dopaminergic system, so this isn’t too surprising. And in as much as the antipsychotics cause weight gain. A drug withdrawal induced “mania,” if properly directed towards exercise and other productive endeavors, as opposed to an unneeded confinement in a hospital, results in weight loss and lots of productivity.
I can only speak to my experience, but do know others who’ve dealt with similar benign – or even enlightening – drug withdrawal experiences, like mine. And I really think the primary reason psychiatrists are afraid of weaning people off their drugs has more to do with their income earning potential, power, and reputation; than what’s actually best for their clients.
As to, “We have an opportunity now to listen and respond to service users.” I have no doubt this goes for both psychologists and psychiatrists. Since I’ve never met any “mental health” worker who has ever listened to, “believed” and heard, a word I’ve ever said, except here on MiA.
And I will say the systemic child abuse cover uppers of the psychological industry, are just as criminal as the systemic child abuse cover uppers of the psychiatric industry. And your “partnership” with my childhood religion, has turned the pastors and bishops of my childhood religion into systemic child abuse cover uppers, too.
And since I don’t want to live in a “pedophile empire.”
Which, of course, is where we all find ourselves living, when systemic child abuse covering up psychologists, psychiatrists, social workers, et al, and religious leaders “partner” up. And create a multibillion dollar, pedophile empowerment, group of scientifically “invalid,” systemic child abuse covering up “mental health” industries. And it’s all by DSM design.
Real change is needed. And this includes both the psychological and psychiatric industries, not to mention the religions, getting out of the illegal child abuse covering up, pedophile and child sex trafficker protecting, business.
These drugs are so very dangerous. I am not sure if using one drug like a “benzo” can offset what happens during withdrawal from any antipsychotic. First, it is because of the highly addictive quality of the “benzo”; a few weeks and you are “hooked” and the highly “awfulness” of the “benzo” withdrawal experience and second, is that each person is so “individual” in response to anything added to their system. The other problem with “ant-psychotics” such as these as that they are prescribed much of the time for “non-psychotic” symptoms; such as insomnia, mania, depression, etc. or at least that is how the prescriber has decided to frame the complaints of the patient. I was taken off the anti-psychotics abruptly prescribed to me and I don’t remember any “florid” psychotic symptoms, but, it seems to tragically happen to many. One point, however, has arisen in my mind in the last several weeks is that even after a successful withdrawal from these drugs and what I personally call the “adaptation” could some of these drug’s remnants still be hiding in places in both the body and brain and still causing problems and issues for the person now trying to live free and clear of these dangerous drugs. I do not think these “remnants” could even be found in type of drug test. I will say that the idea of the article to stay away from these anti-psychotics for any alleged symptom is very healthy thinking, but who will really listen? Thank you.