The Life Esidimeni tragedy: My long and unfinished journey to justice

Christine Nxumalo at Life Esidimeni in 2017. Her sister Virginia Macapelah was one of those who lost their lives. (Photo: Joyrene Kramer)

By Christine Nxumalo

18 May 2021

For five hard and often merciless years, Christine Nxumalo has been one of the stalwarts of the family committee for people who died as a result of the closure of Life Esidimeni. Her sister was one of those who lost her life. Her sister’s daughter died on the first day of the arbitration overseen by former Deputy Chief Justice Moseneke. Below, she recounts that unfinished journey.

My journey began in earnest in January 2016 at a public meeting called by the Life Esidimeni Randfontein facility. It took place following a holiday we had taken, as a family (my five kids, my husband and I), a holiday, we desperately needed having come to terms with my sister Virginia’s condition of Alzheimer’s disease and getting used to her need to be in the Life Esidimeni mental health facility on a full-time basis.

This new normal had taken a serious psychological toll on us as a family, but more so on Shanice, her daughter. Our only comfort was the fact that she was getting the help she needed and deserved, and she was in a good facility.

Shanice was finally able to breathe. She had been through an intensely tough period accepting her mom’s illness and the fact that she had to live without her.

Christine Nxumalo holds a photo of her late sister Virginia Macapelah and her daughter Shanice. (Photo: Mark Lewis)

During the public meeting, which was chaired by Barney Selebano, then the head of Gauteng Health and attended by Makgabo Manamela and a representative of Life Esidimeni Group. The former Health MEC, Qedani Mahlangu, was supposed to be in attendance, but never showed up.

The room filled with families of the mental healthcare users (MHCUs), who resided in the Randfontein facility. They were emotional, angry, and left confused and perplexed with the news of the facility closing and the fact that it had to be closed in March 2016, basically in less than three months.

“What was the hurry and what was the alternative plan?” they wanted to know.

One after the other, the families stood up to tell the Gauteng Department of Health (Gauteng Health) that the Life Esidimeni facility had provided comfort and protection, unlike the proposed NGOs. Families even addressed the Life Esidimeni representative directly to get clarity or answers about what was so difficult that they could not reach an agreement. The representative simply said the issue was on the side of Gauteng Health.

It is during this meeting that I met John Stephens and Sasha Stevenson from the health rights NGO Section27 and a few of us got to understand the case that had appeared before court a few months earlier and the role that the South African Depression and Anxiety Group (SADAG) played at that stage.

Myself and others were then requested by the families to volunteer to represent them in meetings with Gauteng Health and our responsibility was to report back to the families on a regular basis. We attended a few “Life Esidimeni Termination Meetings”, which took place at No 1 Rissik Street on the seventh floor of the Penmore Towers in Johannesburg.

Invitations were always sent by Frans Thobane, a deputy director in the Mental Health Directorate within Gauteng Health. The first meeting was scheduled for 18 February 2016, the next meetings would happen and then not happen or be replaced at the last minute with visits to NGOs, which were deliberately chaotically organised.

We soon realised that the meetings were being used as a rubber-stamping process because no matter how loud we shouted or how intensely we raised issues, the tone and attitude were of tolerance and pretence. Seeing that these meetings were not getting us anywhere as families, we scheduled several protests and served a list of demands. But at that stage, there was very little media coverage and very little pressure was felt.

It was an intense back and forth because more and more families were reporting their loved ones being moved, and some were struggling to find out where they were.

Our only hope was to desperately get the closure of facilities delayed or postponed from the March 2016 deadline and to try to help the families who needed help. We later learnt that they had postponed the closures for a month on paper only, but in truth, the transfers continued and soon thereafter the deaths started occurring.

The outcry for help from families intensified, wanting to report that their loved ones had either been transferred or had passed away. SADAG was fantastic in helping families with grief counselling, offering us facilities to make calls if we needed telephone facilities and in many other ways. Our relationship with Section27 intensified because we then found ourselves referring families to them for representation, in the midst of all of this and after we had visited my sister a few times.

But on 31 May 2016, I received a message that she was being moved that very day to Cullinan Rehabilitation Centre (Cullinan) in Pretoria. A number was provided, which went unanswered every time I called. So, for two weeks, I spent my time looking for my sister because when I called Cullinan, according to a very unpleasant woman called Daphne, she was not there. Daphne instead provided me with cellphone numbers for two NGOs.

Eventually, I learnt that she had been sent to Precious Angels from these two NGOs, as per Mahlangu’s instruction following her visit to the Cullinan.

It was only when Mr Jack Bloom, the DA spokesperson for health in Gauteng, issued a statement asking the then Health MEC how many deaths had occurred at that stage that she reported that 37 deaths had occurred, which of course was significantly higher than the number supplied by Mahlangu in the legislature.

A few months prior to that, on 25 August 2016, I had learnt about my sister’s death which apparently had occurred on 17 August 2016, already.

I spent several more days trying to get my sister’s body, which eventually resulted in me approaching the police to open a case and for the police to assist me in collecting her body. On the day we went to collect her body, while waiting for the pathology team to arrive, the undertaker’s wife said that my sister was lucky because eight other bodies from Precious Angels had already been in storage for two months.

Christine Nxumalo at Life Esidimeni in 2017. Her sister Virginia Macapelah was one of those who lost their lives. (Photo: Joyrene Kramer)

That was the moment I called Section27 and reported what I had just heard and the fact that this was said in the presence of the investigating officer and yet there was no reaction from him or his colleagues. When the pathology team arrived; they scolded us for calling them so late to the “crime scene” and the fact that we had moved the body.

We then requested a post-mortem be conducted on my sister’s body.

Soon thereafter with Section27’s help, we requested NPA to conduct an inquest… but our request was either outright ignored or we never received a response.

The then health minister, Dr Aaron Motsoaledi, had by then appointed the Health Ombudsman to investigate the matter and by February 2017, his report was released and then the work to relocate the MHCUs back to safe facilities began.

But before we got to this stage we continued to raise alarms about the NGOs to which our loved ones were transferred to.

To get a true sense of the numbers, while we were waiting for the Ombudsman’s report, we suggested a healing session and for it to be successful, we needed to reach out to all the families of the deceased, which meant that we needed the list from Gauteng Health. I was told I could only get that list if I personally signed an affidavit stating that I was responsible for it and that it should remain confidential. This then gave us a clear sense that the number was much greater than the 37 reported.

The journey has been intense and incredibly personal and emotionally draining. In the midst of grieving and attempting to bury my sister, I had the responsibility of ensuring that Shanice was okay and was coping with all of this. All the while ensuring as the Family Committee that we were acting in the families’ best interest and making sure they were factually informed, while also making sure that the public was informed.

As the Family Committee, we went through several processes, such as the first meeting in December 2016 with Premier Makhura following his announcement in the legislature that he would be meeting with families; there were three healing sessions, interviews with the Health Ombudsman, meetings with the premier and his team regarding the Ombudsman’s recommendations, relocation of the MHCUs back to the safe and legal facilities, meetings with the premier and the legal teams regarding the arbitration process, the meetings with the NPA and continued emails requesting for the inquest to take place, the continued family meetings and not forgetting the interviews, and so on.

Sadly, Shanice passed away on the first day of the arbitration. She died literally of a broken heart. She was only 19.

When I returned to my provincial government job I was welcomed with a letter claiming that I had absconded from work and had to go through a process of setting the record straight.

A few days ago, I received my sister’s post-mortem report — after five years of constantly begging for it. Reading the report was truly traumatising because it painted an exact picture of how she died, and it was a process of absolute suffering and torture, purely evil in my view.

This filled my heart with anger and made it difficult for me to sleep.

The next stage is the joint inquest scheduled to start on 19 July 2021.

Will this new public stage in our journey be the final stage of us publicly mourning our loved ones or are we removing the scabs from a wound that has started healing only to find no one will be held accountable for the deaths of the 144 MHCUs, who died during the Life Esidimeni Tragedy? DM/MC

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