Withdrawing from psychiatric drugs

(the real problem)

Psychologist John Read is currently professor of psychology at University of East London although he is well-known here as he has previously worked in Auckland, NZ, and Swinburne University, Melbourne. He has a long-term interest in causes and management of psychosis and has recently conducted a large scale survey of people withdrawing from psychiatric drugs. In a paper published a few weeks ago [1], he gives extensive detail culled from the experiences of hundreds of people in withdrawing from what are called antipsychotic drugs (aka neuroleptics, meaning ‘seizing the nerves’). This is important because huge numbers of people take these drugs, about half of whom have never been psychotic, but stopping the drugs is notoriously difficult. Unless they are stopped early, most people have no choice but to remain on them in the long to very long term, essentially meaning for life. Does this matter? Do they need to be stopped, or is it just that people are worrying about the optics of taking psychiatric drugs?

We know that the rate of prescription of these drugs is rising steadily throughout Western countries but I can’t find any reliable figures. Statistics released by the Commonwealth Government don’t include prescriptions for patients in state hospitals or state mental health services. From 2005-06 to 2015-16, the number of prescriptions dispensed per year doubled, whereas the population rose only about 6% and the incidence of schizophrenia hasn’t changed. That trend has continued or even accelerated. What has changed is that people today are prescribed antipsychotic drugs who, in the past, would not have got them.

It has long been known that people diagnosed with “serious mental illnesses” (SMI, as though some are unserious) die young. In the days when people with psychoses were simply locked up and forgotten, they died young of TB and pneumonia. These days, even though most people with major diagnoses aren’t in hospital, things aren’t much better as they die, on average, 13-25 years younger than people without a diagnosis [2]. There has been a lot of work done on why this happens and the answer is: drugs. It is a drug-related phenomenon, not related to the diagnosis itself. For people taking psychotropic drugs in the long term, the risk for practically every significant medical condition is increased, often dramatically. In particular, all of the diseases related to obesity are increased, by 300% or more: diabetes, heart disease and stroke, renal disease, chest conditions etc carry off the majority. It seems that these drugs don’t directly cause cancers, but that’s also because most of the people die before the age when cancer becomes a major risk.

Because patients are overweight and apathetic from their drugs, they don’t exercise but tend to sit around smoking, so everything gets worse as they get older. However, a lot of the increase in prescriptions for antipsychotic drugs is seen in the elderly, which means 65+. They are given very powerful drugs such as olanzapine or quetiapine as hypnotics, and this isn’t just nursing homes, it’s general hospitals as well. As soon as they get the drug, their weight goes up.

Among younger patients, beside weight gain (which can be massive), common complaints include sexual dysfunction, mental dulling and apathy, restlessness and physical agitation (akathisia), severe constipation, and a heap of less pressing problems like dry mouth, blurred vision, unsteadiness, etc. As a result, they often want to stop them but this leads to a problem in that whoever prescribed the drugs wants the patient to continue. Patients who are under treatment orders have no choice. Any reluctance to take medication is interpreted as “lack of insight,” which is used in tribunal hearings to have treatment or detention orders extended. If there is any doubt at all whether they are taking their tablets, they will be labelled “non-compliant” and given depot injections, which come with their own set of problems. This is despite knowing that people who are withdrawn early from antipsychotic drugs do better in the long run than people who continue them, as a major study found:

Participants with schizophrenia not on antipsychotics after the first 2 years have better outcomes than participants prescribed antipsychotics … regardless of diagnosis, after the second year, the absence of antipsychotics predicted a higher probability of recovery and lower probability of rehospitalization at subsequent follow-ups after adjusting for confounders [3].

People who aren’t on orders who want a reduction in dosage will usually mention it at an appointment, only to be told that they must not reduce the drugs, they have a life-long genetic illness of the brain for which drug treatment is essential. Without it, all sorts of dire consequences such as suicide and brain damage will surely follow. What they’re not told is that the drugs bring risks of their own, e.g. “…cardiovascular diseases are the commonest cause of death in patients with SMI, with risks 10-fold higher than suicide” [4]. This is not new: reporting from 25 years ago, a group found:

A cohort of 88 in-patients was followed prospectively over a l0-year period and predictors of survival sought among demographic, clinical and treatment variables … Over the decade, 39 of the 88 patients (44%) died, with no instances of suicide [5].

Whoops. This is the point where John Read’s study picks up: faced with medical obstruction, what is the experience of people who decide to get themselves off psychiatric drugs? What helps, and what doesn’t? It was an on-line survey, with all the inherent problems such as self-selection, people with an axe to grind, etc., but the fact of its size (over 500 patients in 29 countries) and its novelty mean that it has to be given some weight. 71% of the respondents were female, and ages ranged from 18-76, with average 43yrs. 56% of them had taken drugs longer than 3 years. Where the diagnosis was given, only 58% had a diagnosis of psychosis, meaning a lot of people taking antipsychotics probably shouldn’t have been. As had been previously reported, 72% of them experienced withdrawal effects when they tried to stop, with over half reporting “severe” effects: “Duration of treatment was significantly related to withdrawal symptoms. Withdrawal effects were unrelated to gender, education or income” [1, p670].   

Before the study, it was clear that patients trying to withdraw from psychotropic drugs were handicapped in different ways, most significantly, not knowing what to expect and not knowing who could or would help. Many of the respondents had tried and were aware it doesn’t go well. They also knew that family and friends tend to get nervous if they don’t take their drugs and will put a lot of pressure on them to continue, so they often do it secretly, which is risky, but people felt they had to take the chance.

The paper is not technical and gives the patients’ statements of their experiences verbatim. The first and most helpful impact came from feeling better, such as clear in the head, losing weight and recovering their sexuality. People became more active and more interested, and were able to read, study, exercise and link with friends and family after years of inertia. Support from family, friends and professionals was important, as well as having access to internet information on drug withdrawal and/or contact with groups of people with the same experience. Other people found support in different things ranging from cannabis to diet to prayer.

On the other side, the list of unhelpful factors is long, and top of the list is “unhelpful doctors and psychiatrists.” The range of comments is simply appalling:

Doctors who do not know what they are doing…

The doctors trying to stop me and putting me in pressure to resume but no support.

Being met with utter disbelief and dismissal from my psychiatrist(s).

Psychiatrists. Because they think those drugs are the answer to everything.

Belligerent and narcissistic attitude of the psychiatrist. I was being uncooperative. My life experience and trauma history were not taken into account.  

What comes through is not just the lack of professional support, but the active hostility of medical and other professionals to the idea that somebody may actually want to stop their drugs. Bearing in mind that at least half the people taking these drugs, especially those on large doses, were involuntary patients at the time and had no say at all; and that the great majority of all patients taking them were not given anything like sufficient information to make a proper decision; and that psychiatrists force treatment on patients that they know, or ought to know, will seriously shorten their lives as well as gravely affect the quality of life; and that they then refuse to assist patients trying to make a major life decision, we have to ask: What’s going on?

The answer is very clear: the patients have said it themselves. Psychiatrists, and medical practitioners in general, believe with unwavering determination that:

1.      they know what is wrong with the patient and thus …

2.      they have the correct treatment which, while perhaps a little unpleasant in some minor respects, is life-saving but …

3.      they have no evidence to support these beliefs so …

4.      they conceal their professional and personal inadequacy behind a fog of disinformation [6] and walls of bluster or hostility, buttressed by legislation which is in breach of fundamental human rights [7].  

Put that way, it’s not a pretty picture but before there can be any improvement, there has to be a realistic acceptance of the status quo. As John Read’s report shows, from the psychiatric patient’s point of view, the status quo is bad. For example, psychiatrists won’t accept that their drugs cause dependency and withdrawal symptoms. Narcotics have withdrawal symptoms; psychiatric drugs have "discontinuation syndromes.” Even when they (reluctantly) admit that yes, ceasing drugs can be troublesome, they deliberately minimise it, saying it is minor and lasts only a few weeks, which is patently false (see John Read’s stoush with the UK Royal College of Psychiatrists over this point; they lost but with bad grace). People taking these drugs quickly gain weight, sometimes doubling their weight or more. They say things like: “I come to at 2.00am, with the fridge door open and shoving everything I can reach into my mouth. I know I shouldn’t but I can’t stop.” Psychiatrists tell them to discipline themselves and not to eat so much, i.e. the blame is shifted back to the patients.

Sexual side effects are very common: loss of interest, genital anaesthesia, anorgasmia, failure of ejaculation, etc. but most patients won’t mention it unless directly asked and most psychiatrists don’t ask as they believe it’s trivial and will soon pass off. Most haven’t heard of persistent sexual dysfunction. My experience is that practically all people under about sixty who are given full information on this side effect will immediately refuse to take the drugs. Psychiatrists brush it off, although I strongly suspect it’s a big factor in why so few psychiatrists actually take their own drugs: if mental disorder is genetic, their incidence should be the same as everybody else.

The problem is clear cut.

1.      Psychiatrists do not know what is wrong with the patient, or whether it’s actually wrong. They have no theory of mind, no model of mental disorder, no theory of personality and no theory of personality disorder. Their manuals (DSM5, ICD-11) are descriptive only, with no explanatory content. The patient who said: “Doctors who do not know what they are doing…” was right.

2.      Therefore, they don’t know what is normal and what abnormal, but rely on statistics to decide, or social pressures (“homosexuality is a mental disease,” until it wasn’t).

3.      Their drug treatment is mostly terrible and ultimately dangerous.

4.      Their use of the expression “evidence-based practice” is based on selective reporting, especially of side effects and lack of efficacy of drugs [8].

5.      All this is concealed behind walls of obfuscation and denial [6,9] because all psychiatrists want is to be seen as “real doctors” and not as trick-cyclists.  

Well, that’s a jolly little dump, isn’t it. Let’s finish with some good news (make the most of it, there isn’t much lately):

Further to the post on the MAD bill last week (“misinformation and disinformation bill”), Greens senators decided on Friday to oppose the vote today (Monday). As a result, the government has withdrawn it. I’ve had a number of emails from Senate offices saying information from various experts and specialists swung their vote. For example, the government had not taken into account the point that excessive use of ECT in Australia is driven mainly by its financial returns, but publicising this would qualify as “disinformation.” Nice to know they actually read the letters that are sent to them. Perhaps there’s hope for democracy after all.

References:

1.      Read J (2024). What is helpful and unhelpful when people try to withdraw from antipsychotics: An international survey. Psychol Psychother Theory Res Pract. 97:665–685. https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/papt.12551  (free download)

2.      De Hert M, et al (2011). Physical illness in patients with severe mental disorders. I. Prevalence, impact of medications and disparities in health care. World Psychiatry 10:52-77.

3.      Harrow M, Jobe T, Tong L (2021). 20 year effects of antipsychotics in schizophrenia and affective psychotic disorders. Psychol. Med. 2021 Feb 8;1-11.  doi.org/10.1017/S0033291720004778

4.      Corell C et al (2015). Effects of antipsychotics, antidepressants and mood stabilizers on risk for physical diseases in people with schizophrenia, depression and bipolar disorder. World Psychiatry 14 (2) 119-136.

5.      Waddington J, Youseff H, Kinsella A (1998). Mortality in schizophrenia: Antipsychotic polypharmacy and absence of adjunctive anticholinergics over the course of a 10-year prospective study. Br J Psychiat 173: 325-29.

6.      McLaren N (2018). Questioning the Integrity of Psychiatry. https://www.madinamerica.com/2018/05/questioning-integrity-psychiatry/

7.      WHO/OHCHR (2023). Mental health, human rights and legislation: guidance and practice. HR/PUB/23/3 (OHCHR). Available at: WHO/OHCHR.

8.      Le Noury J et al  (2015) Restoring Study 329: efficacy and harms of paroxetine and imipramine in treatment of major depression in adolescence. BMJ 2015; At: https://www.bmj.com/content/351/bmj.h4320

9.      McLaren N (2023). The Biopsychosocial Model and Scientific Deception. Ethical Human Psychology and Psychiatry, 25: 106-118.doi:10.1891/EHPP-2023-0008