Liam Kirk tells us what happened when he took part in the RADAR trial to try and come off anti-psychotic medication.
Regular readers of Asylum may have wondered how Dr Joanna’s Moncrieff’s RADAR trial fared, that is, Research into Antipsychotic Discontinuation And Reduction. Well, for me dear reader, there was no fairy-tale ending. I wanted to show the public that it was possible to live a drug free life and create awareness of the harm of psychiatric drugs. Sadly, in my case, the same old problems keep on recurring, dealing with the same old issues again and again and again.
Dr Moncrieff is known for disliking the label ‘antipsychotic’ as it gives a misleading impression that these chemical compounds somehow specifically target psychosis in the brain, in the same way that antibiotics target the microorganisms responsible for bacterial infection. She represents hard truths that, maybe, psychiatry is not ready for.
In the consulting room at the start of the trial, I yearned to talk with my Responsible Clinician about ‘supersensitivity’ and the notion of brain plasticity. I wanted to ask, ‘Has years of antipsychotics consumption resulted in my brain rewiring? Do I now possess abnormal regulation of my dopamine system with my brain growing an unnatural proliferation of D₂ receptors?’ I really wanted to open up to my consultant, my future depended on it. But, catastrophically, I had entered territory that my consultant would not entertain, he is a conventional psychiatrist who does not believe in withdrawal syndrome. According to him, if an individual loses lucidity months after stopping an antipsychotic, or even a cocktail of psychiatric medications, the individual is unwell from an underlying psychiatric condition (not as a result of the drugs leaching from the body thereby holding in abeyance a withdrawal-induced psychosis that comes to the fore once the individual’s system is free from psychoactive substances).
As a willing subject for research, I was put into a group to have my drug regimen discontinued. I was under the impression that the drugs I was taking would be gradually reduced, slowly decreasing down to a microdose (that is, a specially prepared dose, smaller than the commercially available tablets), eventually tapering to zero, resulting in a drug-free patient. I thought all this would take around a year. Instead, my consultant psychiatrist made me go cold turkey with a sudden stopping of all drugs.
I had gambled on a meticulous process of medication reduction. Instead, my withdrawal syndrome denier consultant was not playing ball. An abdication of duty. I remained under the care of my Responsible Clinician, and Dr Moncrieff’s research relied on the goodwill of participating consultants. I contacted Dr Moncrieff expressing concerns over a lack of essential tapering. She was powerless. If my consultant wanted to exercise neglect by forcing me to go cold turkey, there was nothing anyone could do about it.
For four months I lived a life of fearful rumination. Then, as the last of the antipsychotic leached from my brain tissue, the chemicals in my brain went haywire and I suffered from psychosis rebound. I was quickly Sectioned and hospitalised, effectively losing my rights. An entirely predictable turn of events.
I spent four months in a locked ward then discharged under a Community Treatment Order (CTO). There was no way to escape this penalty. The impact on me was cataclysmic. At the formal hospital hearing of my CTO I was not offered any legal representation; no-one was available to offer a defence against the issuing of the Order; and there was no official in the room to whom I could plea for the protection of. It was unfair, an abuse of process, and I was the victim of a miscarriage of justice. We should all be alarmed at how vulnerable we are to professional cynicism and the whims of a psychiatrist. Viewing the wreckage, they probably feel vindicated in the efficacy of the drugs, but I would argue that my psychotic reaction gives Dr Moncrieff the evidence she needs on the effect of sudden withdrawal.
Every fortnight, a horrible man called Redek Dopey (name changed), a Community Psychiatric Nurse (CPN), came to my home to inject me with zuclopenthixol decanoate (Clopixol®). This left me unable to do anything. Lockdown did not change my routine; I was living the life of a humourless recluse. The effects of the depot injections were so severe that I was unable to travel on a bus due to induced anxiety. I took to my bed for weeks on end, only popping out for essential food shopping. At the two-month stage, I had an outpatient appointment with my consultant, who prioritised control and would not lift the CTO.
One year passed, and despite being aware of my pathetic state, Redek Dopey wanted my CTO to be renewed for a further 12 months. I appealed. A Mental Health Review Tribunal was arranged.
My understanding is that tribunals sit to determine risk and not to establish if the individual is lucid or, to use the terminology, has capacity. I learned from Psychiatric Rights Scotland that a panel member is paid over £400 a day, that’s a cost to the tax-payer of £1,200, plus a hearing. Nice work if you can get it.
CPN Dopey, who is meant to be a caring nurse, created a document for the Tribunal Panel which painted me in the worst possible light with suggestions that I was dangerous and possessed no insight into my actions. The danger I individually represented was unclear. The NHS’s disregard for the sudden withdrawal was not recorded, nor seen as attributable to my situation.
I was represented by Edwards Duthie Shamash Solicitors. Due to Covid precautions the hearing was to be held remotely. I declined to use my home computer due to an unreliable internet connection. It was arranged for me to attend the building of the Community Mental Health Team. Unfortunately, I was not the only one with an unreliable internet connection, CPN Dopey could not establish a connection and the hearing was adjourned.
The second attempt of the Tribunal hearing was cancelled due to CPN Dopey taking the day off sick. To compound matters, Dopey hadn’t called in sick and no-one was aware that I would be attending the building.
At the third attempt, and at the last moment, my consultant decided to go on annual leave. A locum psychiatrist phoned me at home in preparation for the hearing. On the day of the hearing my solicitor advised me to ask for an adjournment on the basis the psychiatrist does not know his patient. The panel had ordered a new doctor’s report, but none arrived.
On the fourth attempt, Redek Dopey was on annual leave, and the deputising nurse could not answer any question put to her. This worked to my advantage. In addition, my consultant proved to be very lazy: first, he supplied a report that was just a cut-and-paste regurgitation of CPN Dopey’s report, then he failed to submit an up-to-date report, despite being directed by the panel to do so. The solicitor ensured that a very rigorous review was performed, with questions raised of research misconduct. Based on the evidence supplied via video link – I won my appeal. The CTO was instantly lifted.
Following my success, my community mental health team was reorganised. I am now under the care of a different psychiatrist. But she is also a withdrawal syndrome denier. The general discouragement of medication reduction remains the same, and she has decided there will be no repeat discontinuation of my medication.
I am no longer on zuclopenthixol decanoate (Clopixol®). It is a tricky time. The last of the Clopixol® has leached from my brain tissue, and some of my functioning has returned, although my brain chemicals are reacting and there are moments I doubt my own sanity. I am now taking olanzapine and putting on weight. My ability to write has returned and this report represents the first time since the CTO to record my experiences.
I still want to live a drug free life.
This is a Sample Article from Asylum 28(2) – Summer 2021. Subscribe to Asylum Magazine