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A personal reflection on the Life Esidimeni tragedy

Maverick Citizen

PERSONAL REFLECTION

Life Esidimeni: Mental health is still the ‘stepchild’ of health and remains underfunded, underresourced

The writer Christine Nxumalo with a picture of her late sister Virginia Machpelah. (Photo: Mark Lewis / Life Esidimeni Advocacy Project) | Christine Nxumalo. (Photo: Gallo Images/ Beeld / Felix Dlangamandla)

This road was unexpected, hard and emotionally draining. Sometimes, I did not know whether I was coming or going. What made it hard was watching my niece come to terms with her mom never being able to live with us again… and it is not going to get better.

Thus began our road in the space of mental health. 

It started with my sister getting lost in Kimberley for about three days. We were running back and forth to clinics and hospitals before she was eventually admitted to Charlotte Maxeke Hospital. Her stay should have lasted a maximum of three days, but instead ended up being three months. The doctors struggled to diagnose her because she presented unusually rare symptoms. This resulted in test after test being conducted and an international research team being invited to observe her because they were doing research on dementia and Alzheimer’s.

We were then called in and counselled about her diagnosis and were told that the best situation was for her to be admitted to the Randfontein Life Esidimeni. When we asked if we could not take her home and care for her, the doctors advised us against it and insisted on Randfontein Life Esidimeni because of the type of care she required. 

This was difficult to accept — so much so that we had to go for counselling in order to cope with the only decision we had to make, or rather accept. 

She had to go through a “settling-in” process before we could visit. When we first saw her after the transfer, we were not sure about the Randfontein Life Esidimeni, but the environment was welcoming and staff were always providing updates, informing us about doctor’s visits, clinic visits, physical therapy, medication, etc. Even when we called, we would receive amazing updates. 

In all those months at Life Esidimeni, she honestly improved physically and her interaction with us was like she was getting better. She enjoyed it when we brought cake and chicken, for those were her favourite foods. She would smile and sometimes even giggle, but I loved how she would light up like a Christmas tree when her daughter would walk into the room. 

The worst came when we were told about the closure of the facilities. We received an SMS telling us that she had been moved and later received a call from Ethel Ncube, the director of Precious Angels, informing us of her passing. She did not even have the common decency to tell us the real date of my sister’s death and she then proceeded to lie about the cause of her death. She even prevented us from gaining access to see or collect her body for over five days, until we had to get the police involved. 

We then decided to get a postmortem because nothing made sense. Then we learnt that she shared a morgue in Hebron owned and run by Put U to Rest funeral parlour with eight other Life Esidimeni Mental Healthcare Users, who had obviously suffered a similar fate at the hands of Precious Angels in Atteridgeville and Danville. 

One of the few positives that came out of this tragedy was meeting Section27 and telling them about the eight other bodies. They provided me, the other families I met throughout all of this, with support.

Just when I thought things couldn’t get better, we were blessed by Prof Malegapuru Makgoba’s work and amazing report. It was the first honest thing to come out of our government, which was followed up by the former Chief Justice Moseneke’ s arbitration award and recommendations. These have not been fully complied with — the “living” monument, or place of remembrance, has not been set up despite the many “ignored” calls for updates. The healing sessions were great because they allowed families to tell the Department of Health what had happened to their loved ones and to tell their stories. 

Six years later and nothing has changed, mental health is still the “stepchild” of health and remains underfunded, underresourced. Nothing has changed with the Mental Health Review Board and the issues regarding the NGOs’ licensing still persist. The Department of Health has made no strides in creating mental health awareness and hosting educational campaigns to ensure that mental health facilities are built, professionals are employed and are accessible in all regions at a basic level. An incentive like that could help with “early detection” of mental health problems. So, instead of people eventually being institutionalised because of never being diagnosed, more people could be taught how to manage their mental health and be given the opportunity to live a “normal” life, while drowning out the stigma attached to it.

Sadly, the Department of Health, both at national and provincial levels, have said and done very little about mental health. This worsened with the discovery of Covid-19, as the families of those who survived struggled because they were once again forgotten and never really kept updated, even though there were many requests for updates sent to the Office of the Premier and Gauteng Department of Health. 

The inquest did not come easy. While most people thought things had quieted down, with the support of Section2, we had continued knocking on the NPA’s doors. We didn’t stop until Minister Ronald Lamola made the announcement in January 2020 that he had asked North Gauteng Judge President Dunstan Mlambo to appoint a judge to conduct an inquest. Judge Teffo was appointed, and the Life Esidimeni formal inquest hearing started on 19 July at the High Court in Pretoria.

Shortly after it started, it was marred by postponement after postponement, which left families worried and anxious that it may be indefinitely delayed — especially after learning from a reliable source that the NPA was at some point affected by political interference, which may or may not have resulted in the inquest not happening until now, six years later. 

The January 19 testimony was especially difficult for me because I got to hear Dr Wadvalla’s report about my sister, but more difficult was me reliving those absolutely horrible moments; it left me feeling depressed, sad and angry. DM/MC

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