Life Esidimeni: My Reflections on Freedom

In 2016, 144 people with mental illness died. They died in the care of the South African public health system from neglect, starvation, torture and abuse. In 2015, the government had announced the termination of the Gauteng Department of Health’s contract with Life Esidimeni and that they planned to move nearly two thousand patients receiving chronic psychiatric care. The South African Depression and Anxiety Group (SADAG), affected families and SECTION27 protested and tried to stop the move. But government would not listen.

In the end, the 144 people died as a direct result of the careless and callous move of patients to ill-equipped NGOs. Families searched for their loved ones, sometimes for months. In February 2017, a report by the Health Ombud recommended that families be compensated through a dispute resolution process. The arbitration lasted 5 months, from October 2017 to March 2018, with Deputy Chief Justice Dikgang Moseneke finding in favour of the families. He ordered the state to pay compensation to families who lost loved ones as a result of the “marathon project”. He also recommended serious accountability for those responsible.

The judicial inquest into the Life Esidimeni tragedy began in July 2021 and has been ongoing for ten months now. It will determine whether there can be any criminal liability for the deaths of 144 mental healthcare patients who died in the care of the South African public health system. The inquest is being held via Zoom and is often mired in legal debates and technical mishaps.

So, it can be easy to forget that people are at the heart of this horrific human tragedy. Justice for the families matters. Christine Nxumalo’s sister Virginia Machpelah died under terrible circumstances. Christine is part of the Life Esidimeni Family Committee and has fought tirelessly for justice for what happened to her sister and the other loved ones who died.

This is the story of her ongoing fight for justice.

I consider myself an accidental mental health activist. I was plunged into the mental health world because of my sister Virginia Machpelah’s diagnosis and subsequent institutionalisation in the Randfontein Life Esidimeni facility. But it is a journey that started long before the Life Esidimeni tragedy, just trying to find an answer to what was wrong with her. My family and I were born and raised in Kimberley. My sister remained in the family home and considered Kimberley as home. My sister was someone who did not get sick much, but had a tendency to forget things, little things, so much that we would tease her about it.

Later, when I was in my early thirties, she developed alopecia, a disease which saw big chunks of hair falling out. It really made her sad and self-conscious and not as bubbly as she used to be. I would cut her hair and treat her scalp in an attempt to channel her sadness into a new look and see herself differently. Besides her forgetfulness and her hair loss, we never really got a sense that her condition was deteriorating until my big brother’s stabbing in 2008. Her daughter Shanice had to live through this and go through the process of identifying the perpetrator.

Then, in 2009, we lost our father, who had been living with Virginia and Shanice at the time of his death, which was followed by our baby brother’s death in 2020, due to complications related to HIV/AIDS. It was after these events in our lives that we started seeing significant changes in my sister. Irrational behaviour that would be unlike her. But when you would talk to her about it, she would provide a response that sort of made sense. She did not like being fussed over and she would always pull the “big sister” card if I tried to take it to the next level.

She attended clinics to get treatment for her alopecia in Kimberley and when she would visit, we would visit the local clinic with the hope of getting better help and a better understanding of what was wrong.

Finding Answers

Things then took a massive turn when she went missing for three days in 2013. A search was launched, and a missing-person report filed. We were fearing the worst. The police eventually found her and, that very day, we brought her up to Johannesburg to stay with me and my family.

Trying to find a diagnosis for her was a constant back-and-forth process that took months. Initially, we were forced to go to our local clinic, which really did not assist us with anything except providing pain and anxiety medication. I had to keep insisting on being referred to the next level of the healthcare system with the hope of getting help or better medical treatment.

Our next level referral took us to Edenvale Hospital. Unfortunately, that turned out to be even worse. We spent hours moving from one section to another. We were even redirected to the wrong area and then had to join another long queue. We eventually saw a doctor who did not even take a minute asking questions. Without even looking at my sister, he prescribed Prozac. I remember thinking that this was an American drug. But then I thought, “What do I know about depression?”

I went to collect the medication and, after reading the script, the pharmacist was visibly annoyed. “How can this doctor prescribe a drug we do not have in the country?” He mumbled, “That is what happens when government does not listen to us as professionals.” He recommended a local drug to replace the Prozac. But, as I was to learn later, my sister was not suffering from depression at all.

We left Edenvale Hospital and I vowed never to return. I decided that I need to take my sister to the Charlotte Maxeke Academic Hospital, where we found mental health professionals who helped us. Finally, in 2014, Virginia was diagnosed with early-onset Alzheimer’s disease. She was only 48 years old.

Virginia had to be institutionalised at Life Esidimeni Care Centre in Randfontein. The photograph of my sister with her daughter Shanice was taken there on 30 June 2016. At the time, she had been living there for close to two years. She looked so well that day. And Shanice was so happy to see her mother. Little did I know it would be the last time I would see my sister alive.

Missing

A few weeks after that visit, I received an SMS that read “The facility closes today. Please to visit Virginia Machpelah at Cullinan Care and Rehabilitation Centre. Call 012734700 to check on her. Aaron 0116933615”.

We frantically called the numbers but they were never answered. We then had to find another number for Cullinan Care and Rehabilitation Centre (CCRC). It would ring endlessly. A few days later, someone answered the phone. We were told that she was not at CCRC. I was then provided with two cell numbers of two other NGOs operating on the same premises and, eventually, her name was found on the register of an NGO called Anchor.

This back-and-forth process took place for a few more weeks of frantically trying to locate her. During this time, I reached out to the WhatsApp Family Group, which was started by Ms Cassey Chambers at SADAG. I was overwhelmed when I realised that many other families were going through the same experience.

“Your sister is dead”

I only discovered that Virginia was moved to Atteridgeville on 25 August 2016, when I received a call from Ethel Ncube. She told me that, after being transferred from Life Esidimeni Randfontein to CCRC and then to Anchor, Virginia had been a resident for six weeks at an NGO that she operated called Precious Angels Home. She then went ahead to inform me that she had passed away on August 17.

We at once made our way to Atteridgeville and, instead of being allowed to see my sister’s body, Ethel eventually called to say that the caretaker of the mortuary had left and we unfortunately had to return the next day. This happened for the next few days.

On August 29, on Ethel’s instruction, a funeral parlour called Put U 2 Rest met us outside Kalafong Hospital and drove us to the mortuary. When we arrived, the owner told us that my sister’s body had to be moved to Hebron, a storage facility, because she had been there too long.

The owner said we could follow him to the storage facility where we were able to identify my sister’s body. We were then requested to drive back to Atteridgeville from Hebron to make the necessary arrangements to release the body. But we were expected to first agree to the funeral arrangements before they could share any information. We were then told that no post-mortem had been done and that Ethel was refusing to release Virginia’s ID document and, as a result, they could not apply for a death certificate.

On August 30, we went with Warrant Officer Mokhari to Kotelo Funeral Services in Hebron to retrieve my sister’s body and request an inquest into the death of my sister at Precious Angels Home.

While waiting for the forensic services to arrive, Ms Kotelo reacted with visible emotion and concern. She told me that Ethel Ncube had, in a space of two months, brought six bodies to her establishment from Precious Angels Home. She opened a large blue record book on her desk to confirm. Given the genuinely concerning circumstances surrounding my sister’s death and serious concerns about activities and conditions at Precious Angels Home, we then said that it was necessary to conduct inquests into all the deaths at Precious Angels and that an urgent investigation of Precious Angels needed to be done to protect the health, rights and lives of its residents.

I worked hard with other affected families during this entire six years. Looking for our loved ones, trying to get answers from government officials, organising protest marches so that we could be heard, cooperating with the investigation of the Health Ombud, Dr Malegapuru Makgoba, and the implementation of his recommendations. There was a great deal of preparation and build-up to the arbitration. Then, on the first day of the arbitration proceedings, my niece tragically died. Shanice, Virginia’s only child, collapsed and died suddenly. The doctor who declared her dead believed she had died of broken heart syndrome. Shanice had celebrated her 21st birthday the day before she died.

A Failed System

At the primary level of the healthcare system, the government failed my sister. For years, we had been going to the local clinic with the hope of getting treatment before her condition got worse. We were left in the dark and did not understand what was happening to her. There was no access to any quality mental health service.

Our government, and the health department in particular, has the wrong attitude. They provide health services to the majority of South African people with the attitude that they are doing us a favour rather than treating it as a right to access. To add insult to injury, mental health is viewed as the unwanted stepchild of health. Much needed resources are just squeezed out, even after the Life Esidimeni tragedy shocked the country.

The stigma associated with mental health is not just from uninformed communities. There are medical professionals who see nothing wrong in name-calling and degrading patients who try to access clinics or hospitals. People in need of mental health services do not return to clinics for fear of being publicly embarrassed by a medical professional, which leads to someone like my sister not being diagnosed at an early stage when she needed it.

Our Constitution clearly states that freedom also means access. But not just access: access to quality service, be it education, housing or health services.

Unfortunately, in South Africa, “quality” seems to be reserved for those who can afford to pay for what they need. I also tried to reach out to my fellow comrades in the ANC. I had been an active member in my branch for many years. But instead, even immediately after my sister’s death, I was met with the cold face of the ANC. Instead of support, I was attacked and told I should not be working with “those NGOS like SECTION27 and the South African Depression and Anxiety Group”.

I am convinced that Virginia was murdered, purposefully killed, simply because government was concerned with other things. I have also been taken aback by the callousness with which these officials have dealt with all the families’ loss, pain and anguish. They wanted me to abandon my quest for justice.

This was my big sister who had been killed by the people tasked to ensure that she was safe and taken care of. They consistently ignored our cries before the closure took place and after our loved ones died.

Following the arbitration ruling, the Family Committee has struggled to get straight answers about anything: the monument, the audit of families paid to date, the status of the implementation of Gauteng Province’s Mental Health Strategy and Action Plan 2019–2023.

When the Covid-19 pandemic hit South Africa, mental health took an even further back seat. While the Family Committee continued to struggle to shine the light on the true magnitude of the Life Esidimeni tragedy, we also had to work extra hard to get the National Prosecuting Authority to agree to host a judicial inquiry to ascertain the facts. We kept the pressure on. We would not let up.

Now, six years later, the inquest is finally underway.

The Inquest: Reliving the Pain

In July of 2021, we were granted the Life Esidimeni inquest that is currently being heard by the Pretoria High Court. As grateful as we were that it was finally taking place, we knew that it was another difficult phase. We would be reliving the horror of the deaths of our loved ones. Only, this time, we hoped to find more pieces of the puzzle of what really happened. This includes the court listening to the post-mortem evidence, which, in all honesty, was terribly difficult to listen to and very emotional.

I was fortunate (or unfortunate) that SECTION27 had prepared or informed me that my sister’s post-mortem was to be presented as evidence on 22 February 2022. It was a difficult period leading up to that date. I was nervous. I struggled to sleep, not sure if I wanted to listen at all and if I would cope. I eventually forced myself to listen to how my sister died. I am struggling to wrap my head around the words of Dr Onoya, the pathologist who gave evidence.

“She was so weak that she couldn’t even eat. She was force-fed, either just before or after she died. She had to have been without water and no food for weeks,” he said.

And all that keeps running in my head are the words “no water and no food for weeks”. Why could they not just have given her back to me? Why could they not have just called me, knowing I was looking everywhere for her?

My Sister Was Murdered

I have been struggling since Dr Onoya’s testimony because now, more than ever, I am convinced that my sister was murdered. It may not have been with a gun to her head. But watching someone die with no water and no food for weeks is premeditated murder. Force-feeding her, knowing she was about to die, was an attempt to cover their tracks. I thank God for little miracles. Dr Onoya was thorough and even analysed the food found in my sister’s stomach and oesophagus and was able to determine that the food was not chewed.

To know and to hear the truth is just as painful and it haunts you for an awfully long time before healing can begin. But at least, I pray, we are edging ever so closely towards justice.

The Broader Mental Health Crisis

We will continue to appeal to the Gauteng Department of Health to address the desperate situation of mental health care in our country. Among others, we demand that the Department:

• offer mental health services at primary levels of the health system, which will help to address the early-detection problem
• accept the offer of additional assistance from mental health professionals from civil organisations and establish good working relationships with them
• bring attention to the mental health crisis brewing at the Helen Joseph Hospital.

Finally, the government needs to grasp the magnitude of the problem in Gauteng and South Africa and ensure that budgeting reflects the mental health crisis we are facing every day in our country.

My sister’s horrible and inhumane death and the deaths of the other 143 mental healthcare patients still matter. We must continue to hear their stories and fight for justice so that this never happens again.

The Life Esidimeni tragedy and the stories of the loved ones left behind are also available on the website: www.lifeesidimeni.org.za.