A Mental Health Trust denies and deletes evidence of years of harm and misconduct.
The writer of this blog wishes to remain anonymous. Image by Photo by Hans Eiskonen on Unsplash
To Do List
- Begin to taper
- Complain
- Lobby
- Sue
- Make something good come of this shit show.
The last item on my list made me smile for the first time since June. It was in that June of 2023, that I finally realised the cause of the debilitating symptoms that had plagued my life for the last six years. The fatigue, breathlessness and brain fog. The inability at times to sit upright, and headrush when I stood up. The strange, slow shuffle when I tried to walk that would miraculously disappear without warning and return without reason. During those six years, all of this had been diagnosed as ME, also known as Chronic Fatigue Syndrome, a diagnosis with no known cause, cure or treatment.
Until now. The actual cause was long-term withdrawal from ‘antipsychotics’.
‘Antipsychotics’ taken as prescribed, tapered off as prescribed – my compliance as a patient for the first six years after being diagnosed with ‘psychosis’ was indisputable.
The “Psychosis” Delusion
Psychosis: a word that struck terror into my heart when first given the label. It’s often thought of as a discreet medical illness with a known biological cause and treatment. In fact, the idea that I had a chemical imbalance that needed to be corrected with drugs was emblazoned in my mind when I first walked into the doctor to ask for help. But this is not the case at all. Psychosis is more an umbrella term for any kind of state of mind deemed unacceptable. Two people labelled with psychosis may have entirely different experiences: in my case I had no hallucinations, no voice hearing, simply at times my imagination was running riot due to stress. My imagined conversations felt so visceral that I had come to wonder if they were in fact memories (spoiler, they weren’t).
In the mental health clinic where I was referred, I was given the choice to take a drug to help me. I was told it was safe. I was told if I had unacceptable side effects, I could simply stop taking it. Nothing could be further from the truth.
Begin to Taper
June 2023. A simple task on my “to do” list. I rang my GP to inform her that I had found the cause of my condition. This debilitating condition had kept me in bed and out of work for six years. I wanted two things. A diagnosis of protracted (long term) withdrawal syndrome and a prescription for liquid Aripiprazole so I could taper off it at a rate recommended by researchers.
I explained how all psychotropic drugs cause the brain to adapt structurally and chemically over time in order to counteract the effects of the drug. This leads to a strong physical dependency on the drug. When the drug is withdrawn, the patient can suffer severe dysfunction, whether physical, emotional or intellectual. This is known as withdrawal. These effects are wide ranging and can be devastating.
I pointed her to the website https://iipdw.org/ which collates research on the subject. Research linked from this website indicates that up to 72% of people prescribed antipsychotics suffer from withdrawal symptoms when tapering off their drugs. Unusually, this survey of over 500 patients was conducted by independent researchers without involvement of pharmaceutical companies.
She contacted my psychiatric consultant. I waited. And waited. Several weeks later he became available to talk to her. He told her that it was likely I was suffering from delusional psychosis again, and that the idea that an ‘antipsychotic’ could cause withdrawal was probably simply a delusion of mine. My GP informed me that I would need to wait for an appointment with a psychiatrist before anything would be done.
August 2023. The psychiatric trainee agreed to prescribe liquid Aripiprazole in order to taper off but refused to diagnose me with protracted withdrawal syndrome. Politely, she informed me that this idea that I had withdrawal may be a delusion, and should it become a delusion in the future, she would forcibly reinstate me on the original dose of the drug that I believed caused the withdrawal.
Terrified of saying another word, I took my prescription and left.
Complain, Lobby, Sue
Shaken by my experience of trying to inform my doctors about drug harm, I resolved to change attitudes like theirs by changing the mental health system. No other patients should suffer needlessly. To achieve this, I would target the source of the misinformation—the pharmaceutical company that failed to warn about dependency.
When I first approached law firms, I felt hopeful. I had clear evidence of harm: six years of debilitating symptoms caused by withdrawal, and research showing that this harm is not rare. But without a diagnosis of protracted withdrawal syndrome, no lawyer would touch my case. Each firm told me that only a psychiatrist could provide the necessary credentials for my claim. And every doctor in the mental health field that I approached dismissed my concerns.
Despite my compliance with their recommended dosages and tapering methods, psychiatrists refused to acknowledge the injury caused by their prescribed treatments. This refusal wasn’t an isolated incident—it was symptomatic of a system that shields its own, prioritising professional solidarity over patient accountability. Without their admission of responsibility, pharmaceutical companies like Jansen, manufacturers of Risperidone, could continue marketing drugs as “safe” while avoiding accountability for the very real harm they cause.
This cronyism creates an impenetrable wall for patients seeking justice. It leaves people like me trapped—facing both the consequences of medical harm and the system’s refusal to acknowledge it.
So I decided to simply lodge a formal complaint with the NHS Mental Health Trust that had harmed me. I had a lot to complain about, but my main issue was that for three years the Trust had prescribed me a drug that made me physically dependent on the said drug. This central nervous system injury caused withdrawal so severe that I could no longer work and I needed help looking after my son. For much of those three years I had been force drugged with an injection of antipsychotics.
The response took six months. Reading it, my chin hit the floor. They failed to even mention withdrawal.
Deny, Delete, Disavow
Much of the response waffled about all the harm that the antipsychotics could have caused me, but didn’t. It contained extensive mention of the checks they carried out on everything but the actual injury that I was complaining about. I couldn’t believe it. This was their defence? Listing the harms that they didn’t do?
Incredibly, they also claimed that they didn’t force drug me. After two years of coming to my house to inject me with harmful drugs under the threat of being sectioned, they claimed my medical notes indicated a collaborative approach.
Accessing my medical notes online after my subject access request, I discovered something deeply troubling. My medical notes had been drastically changed.
A whole consultation with a doctor where I was refused the right to taper off my drugs had been removed. Another consultation where I requested that they stop injecting me so I could safely conceive another child had been altered. This made it look like I was satisfied with the response that they would simply inject me with a different antipsychotic.
Other notes that I had quoted in my complaint had been removed or altered. The complaint response curtly informed me that these references could not be found in my medical notes.
A year and a half after this response, I am still waiting for action from the ombudsman. I received a second response to my complaint that took two lines to state that my care team didn’t think they had caused withdrawal. No second opinion, no justification. I am still at the mercy of this same care team while I taper off this poison. I still suffer from crippling fatigue and breathlessness.
I am not alone
I am part of a large international support group of psychiatry survivors, fighting for our lives, for our safety and for our voices to be heard. Inner Compass Exchange has been a lifeline when the world turned its back on my suffering. On this online social app, members share their experiences with psychiatric harm, offer each other support and find detailed information on safer tapering that many of our doctors failed to even mention. There are moderated zoom calls tailored to forging connection and healing. This non-profit, peer led forum provides the support and guidance many of us have been denied by the mental health services.
The stories I hear about harm inflicted by the mental health services are many and varied. Rarely is anyone held accountable.
Yesterday, a friend texted our group, intent on getting proof of harm that will prevent mental health services from drugging her in future. After an ordeal in a mental health hospital, she just wants to feel safe. And I told her the horrifying truth that I have spent three years discovering.
The harm caused by ‘antipsychotics’ is well-documented, and the evidence is undeniable. Yet, the system remains indifferent, shielding itself behind guidelines and policies that prioritise protocol over accountability.
In the UK, as in much of the rest of the world, as long as prescribers follow National Health Service guidelines, they face no consequences for the outcome of their actions.
In the midst of scaremongering about chemical imbalances and mental ill health, we have sleepwalked into allowing gross violation of our human rights. We have already seen what seemingly benevolent institutions do without consequences to keep them in check. From the Catholic Church, to the British armed forces, it takes the struggle of many survivors to shine a light on the abuse of power that destroys lives.
This struggle, often accompanied by much adversarial reaction, has already seen tremendous results.
New books written by psychiatrists critical of the misinformation and medicalisation within mental health have lent credence to the growing body of patients harmed by their prescribed drugs. Books like “The Maudsley Deprescribing Guide”, “Searching for Normal”, and “Chemically Imbalanced” shed light on the misinformation within the mental health system, while survivor memoirs like “Unshrunk” offer hope and guidance.
Online social media informed-consent advocates use tags like “#prescribedharm” or use organisations like “Drop the Disorder”, “Medicating Normal” and “ERNI” to share vital research and experience.
Among the members of my support group, it’s often this advocacy that has given us the courage to advocate for ourselves. During my last three years of tapering, while I’m still suffering from continuing withdrawal, it’s the growth of this community that has given me hope, and a constant reminder of the light at the end of the tunnel.
So, I and others need to share our stories. As the saying goes, sunlight is the greatest disinfectant.
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Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.