Consent Denied

 In May 2024, President Cyril Ramaphosa signed the National Health Insurance Act, Act No. 20 of 2023, into law. It was published in the Government Gazette on 16 May 2024, promising South Africans a healthcare system built on ethics, accountability, and the rights of the patient. I want to tell you what that promise looked like for me from the inside of a locked ward in Mpumalanga.

I believe in something that seems simple: that a person's body belongs to them, and that consent is not a formality to be worked around when it becomes inconvenient. What happened to me between April and December 2024, across two hospitals in the province, Barberton Hospital and Rob Ferreira Hospital in Mbombela, tested that belief in the most direct way possible.

april 2024: taken from my home

I live on the outskirts of Barberton, in the Ehlanzeni district, in an area called KwaMadakwa Ndlovu, the same region that shaped the late Deputy President DD Mabuza. One morning in April 2024, after I missed an outpatient appointment to refill my prescription for managing my ADHD. methylphenidate and other treatments my doctor had approved.

That missed appointment was enough. That morning, I had had a heated argument with my mum, who I live with about my medicines. Unbeknown to me, she secretly called in the Calvary and shortly thereafter,  three people from Barberton Hospital arrived at our home, put me in a vehicle, and took me to the hospital against my will. A neighbour who witnessed what was happening to me and tried to intervene was pushed aside and removed from the scene.

At the hospital, a nurse who dealt with my case on this particular day, refused to identify herself. A rather friendly black male doctor told me I would be held for 72 hours for observation. He said my condition, as it had been described to him, was chronic. He said I would never again be allowed to miss an appointment, and that while my illness could not be cured, it is manageable. Nobody asked me for my version. My own account of my body and my treatment history counted for very little in that room.

72 hours later, I was discharged and I returned home on my own. So clearly the danger that had prompted my being rushed to the hospital three days earlier was inconsequential. Had they only listened to me. 

october 2024: the injection i never agreed to

Months later, on 4 October 2024, I found myself back within the same system, this time I personally took myself there to avoid facing being dragged to the facility, this time, facing a different doctor, a white woman, who arrived at the mental health ward in civilian clothes. What followed was a conversation I remember almost word for word, because every sentence of it mattered.

She approached and said simply, "Please."

I retorted, "I am not your friend."

"It's really better for you that you get it," she said in reference to an injectable drug I was soon to learn to be Clopixol Depot (Zuclopenthixol Decanoate).

"What is it for?" I asked.

"You are in a manic state," she told me.

I pushed back: I had been running around all day due to my ADHD medication, not because I was manic. I told her plainly that there was no need for an injection; that my body belonged to me, and the choice was mine to make.

She insisted I was a danger to myself. I told her I loved myself, that I had high self-esteem, and that this had nothing to do with danger. She replied that if I did not consent, they would give it to me anyway, seeming to imply use of force.

Faced with that ultimatum, I allowed the first injection on my shoulder. But that was not the end of it. The doctor came back and decided it was not enough. She called in the guards, who held me down while I was injected again; this time entirely without my consent, by force.

The medication was Clopixol Depot, administered to me on the claim that I had bipolar disorder and was "manic." I disputed that diagnosis. I also want people to understand what this drug can do: I later learned that among its documented risks are serious effects on eyesight. I was given a long-acting antipsychotic injection against my will, on the say-so of a doctor who was not, by her own admission, familiar with my case or my medical history; though she claimed to have read my entire hospital file.

Had she read my file properly, she would have noticed that the claimed bipolar disorder, was an earlier misdiagnosis of years ago when I was still a journalism student at Rhodes, and had been corrected by Grahamstown physicians. Knowing how the misdiagnosis had nearly led to my premature death, the mere mention of bipolar was traumatic enough for me to start regretting having visited this hospital in the first place. 

what came after

The next day, I was transferred by force, in an ambulance, from Barberton Hospital to Rob Ferreira Hospital. On the way, I passed through the outpatient section where a middle-aged diabetic woman with kidney issues sat awaiting consultation with a nephrologist regarding a much-needed dialysis; an ordinary scene, a reminder of what healthcare is supposed to look like when it isn't being used to override an individual's will.

I remained locked up at Rob Ferreira Hospital’s mental ward for two months two weeks (ten weeks). Days after I was discharged, the hospital staff went into a damage-control mode; they denied the incidents ever happened as I had experienced it, denied the doctor's presence, and denied that any of it ever happened the way I described it. My experiences at the institutions had somehow been erased. I even for a moment started doubting myself. I was being gaslit to the highest degree possible. ‘Could I really be indeed crazy’ I wondered silently to myself. But it happened as I have been able to prove it, I had recorded bits of it on my smartphone. The ambulance involved in the transfer wasn’t self-driven, the driver was and still is a living human and being a public ambulance, the logs could not be deleted. So why am I telling this story now? Because the record deserves to reflect what actually occurred, “We the people” should not live in that Orwellian ‘Nineteen Eighty-Four world’. Institutions should not dictate how we live and move. Didn’t our older generations already rejected that by 1994? Yes, A few years before I was born! Yes, I am a proud New Dispensation baby. Besides, multiple laws have since been enacted to protect people like me. I believe this should never have happened to me. 

why this matters under the law

The National Health Insurance Act is explicit about what the health system owes its patients (including me). It empowers the NHI Fund to act against corruption, fraud, and "unethical or unprofessional conduct or abuse of users." It also requires that accredited health establishments comply with the codes of health-related ethics and the laws of our Republic; and allows for consequences when they don't.

I am cognisant of the relevant provision of the Mental Health Act No 17 of 2002, but I must clarify that my ADHD is not a mental illness, it’s a neurological development condition and trying to tell any doctor that, is considered being argumentative because they know best what is afflicting me.

I was denied my right to provide informed consent as per the 1964 Helsinki and 1948 Geneva Declarations both of which, the Republic of South Africa has ratified and somewhat domesticated through various laws. I was kidnapped, restrained, detained and medicated against my will by a public ‘doctor’ who, by her own actions, overrode my objections without any explicit legal authorisation, rather than pause to consider my views and desires. Two doctors were involved in my case over the course of these months, and what I experienced was not an isolated lapse; it is a system that treated my consent as optional the moment it became inconvenient.

For those readers who don’t know ADHD can involve very rapid emotional reactions; I do become argumentative within reason and sometimes get angry or excited and may return toward my baseline relatively quickly. I know that. Since my ADHD diagnosis, I have learnt a lot about the condition and it is surely not a mental illness. It is a neurodevelopment condition, but at our rural setup, it is a mental illness and must be kept restrained in a lunatic asylum if they could; We are not ‘the crazies’ the society takes us for.

This is not simply my story. It is a test of whether the new South Africa and its new health legislation mean what they both state, or whether this new law is meant to protect will keep discovering, one locked ward at a time, and that the promises do not reach them.

There is already enough stigma associated with mental illness to go around the country and back, adding more grouping of people into this bin would not make the problem go away. Just try telling a doctor who has spent five years studying medicine that you know your rights, is enough for guards to be called on you.