Here, Health-e has only profiled 10 former Life Esidimeni (LE) patients, and the circumstances around their deaths, but it provides a glimpse into the dignity denied to both mental health care users and their families before, during and after the fatal move.
Died: 18 July 2016
How long in LE: 10 years (Randfontein)
Moved to: Cullinan Care and Rehabilitation Centre
When: End of June
Cause of death: Death certificate stated ‘natural causes’ and death notice stated ‘cardiopulmonary arrest’ and ‘[ineligible] lung disease’.*
Bongane Sithole explained that his brother Bekumuzi – known as Bheki by his family – first became unwell at the age of 18. “He started doing funny things like opening a tap and just sitting there,” said Bongane. After a stint at Sterkfontein Hospital he was admitted to LE Randfontein, where he remained until 2016. In June that year Bongane received a call to say LE would shut down and could he take his brother home. But Bongane did not have the means or capacity to take care of Bheki, who needed the help of professionals. He said he was informed that Bheki would be transferred to an NGO in Meyerton. The next communication he received about his brother “was to say he was dead”. Just three weeks after the move Bheki had died. When his family visited him at Cullinan they were shocked to see Bheki chained to his bed, with the shackles causing wounds to form on his ankles and left wrist. Bongane said he believed that the staff couldn’t control Bheki because he was usually hyperactive. “We used to say he was like a springbok,” remembered Bongane. He said he suspected this maltreatment caused his death. “We buried him with those wounds.” Bheki was buried on 25 July 2016.
Died: 15 July 2016
How long in LE: At Randfontein for ‘years’ and Waverly since 2014
Moved to: Rabafenyi Care Centre
When: End of May 2016
Cause of death: Death certificate stated ‘natural causes’
Christopher’s brother Lucas Mogoerane said he was called the day before the transfer happened in late May. The news came as a surprise as there had been no prior consultation. He said Christopher looked “traumatised” by the change, when he went to visit him the following week. “I know Christopher as I know myself. But on that day I couldn’t recognise him. He was so thin [and] he cried like a baby,” said Lucas, testifying at the arbitration hearings. When he went to visit, other patients surrounded his car as he handed out fruit. Some were so desperately hungry they ate bananas without peeling them.
Lucas said he was told his brother had died after a fall during the night. This was discovered by the facility’s manager when she came in on the morning of June 15. He said he believed his brother suffered a stroke and suggested that patients weren’t monitored at night – resulting in the many hours passing before the death was reported and the paramedics called out. “After the funeral I got a call from a private number saying Ms Qedani Mahlangu wanted to see me. In my mind I said it is too little too late,” he said.
Died: 24 July 2016
Diagnosis: Unknown mental illness which makes him violent sometimes. He was also a diabetic double amputee who had developed gangrene in both legs.
How long at LE: 2 years (Randfontein)
Moved to: Takalani Home
Cause of death: Death certificate stated ‘natural causes’
As a double-amputee Joseph got around in a wheelchair bough for him by his younger sister Ntombifuthi Dhladhla. She used to visit him once a month, which was all she could manage with her small salary as a domestic worker. “He was a good person but I was the only one in my family who managed to understand him. He was good to sit with and talk to,” she said. Like most patients Joseph was moved from LE without his medical records. Joseph’s sister looked for her brother from April 2016 after he was moved from LE. She didn’t find him for months. On February 10 this year she was told by a Gauteng Health Department social worker during a visit to their offices in Johannesburg that her brother had died on 24 July 2016. Heart-broken, Ntombifuthi eventually found her brother’s decomposed body at Mamelodi Hospital eight months after his death. Their mother has since suffered a stroke. In tears, she said: “It hurts. Especially now coming up to Christmas. I’m thinking so much about the things we used to do together at this time of year.”
Died: 26 March 2016
Diagnosis: Intellectually disabled.
How long in LE: About 36 years (Randfontein and Witpoort)
Moved to: Takalani
When: March 2016
Cause of death: Death certificate stated ‘unnatural causes’ and the Notice of Death states ‘asphyxia due to the aspiration of blood’
About twice a year Deborah’s mother Maria would take her home for a month, armed with all the medication she would need for the stay and a detailed letter from LE on how to best take care of her. She also visited Deborah as much as she could between these long stints and had planned a visit on Easter weekend in 2016. But on Good Friday she received a call telling her that her, otherwise healthy, daughter was dead. Nurses from the NGO told Maria that her daughter had suddenly become ill and vomited before she was placed on oxygen. She had then died. Trying to find her medical records proved frustrating as the family went back and forth between LE and Takalani with no luck. But when the family went to identify her body they were truly appalled. “I was so shocked. I nearly died when I saw my daughter lying there, her face was full of blood,” said Maria, testifying at the arbitration hearings. She said that just two weeks before this Deborah “was fine”. Deborah’s family was one of the lucky few to have received a post mortem report into the death of their loved one, yet it still hasn’t brought them closer to finding answers. A week after she buried her daughter she went to Takalani and was “horrified” by what she found: her daughter has died in a musty room, filled with spiders and two beds with no mattresses. The post mortem revealed Deborah had died with plastic and brown paper in her stomach. Maria wondered if her daughter had been left alone, starving and had resorted to eating whatever she could find. “I want answers,” she said. “I won’t be okay without those answers.”
Died: 22 July 2016
How long in LE: 15 years (Randfontien)
Moved to: Bophelong
When: Mid-June 2016
Cause of death: Death certificate stated ‘natural causes’ and the Notice of Death stated ‘lower respiratory tract infection’
Diagnosed with an unknown mental disorder roughly two decades ago, Billy – as he was known to his loved ones – could become aggressive and violent if untreated. His father, Reverend Joseph Maboe said he used to run away from home and “not know where he went” which was “traumatic” for the whole family. He was treated at three facilities before going to LE where he was stabilised and received the “constant care” he needed, to his family’s relief. But, when well, Billy would jokingly “tell me to behave and ask me to be like Bishop Tutu”, Joseph told Health-e News. Already in 2015 when the GDoH announced their plan to shut LE facilities down, a concerned Joseph wrote to them saying he is too old to take care of Billy at home and that he “needs the services of Life Esidimeni or a place like it”. He was “ignored” and Billy died. Joseph saw his son in LE towards the end of June where “was happy and looked well”. A month and a half later, with no assistance from the GDoH and only with the help of the South African Depression and Anxiety Group, he tracked him down to Bophelong. He said his heart sunk when he saw his son. “I saw death in his eyes.” Billy was dirty, hungry and he looked depressed. Although the family wanted to take him to a doctor immediately, staff at the NGO said they would have to wait two days for a social worker or doctor to release him. The family took him to hospital that Monday but it was too late. Billy died in hospital four days later. Testifying at the arbitration hearings Joseph said: “The government doesn’t really care about us. The words ‘Batho Pele’ written in government offices don’t mean anything to them.”
Died: 7 August 2016
How long in LE: About three years (Randfontein)
Moved to: Mosego Home
When: Second week of January 2016
Cause of death: Death certificate stated ‘natural causes’
Frederick’s wife Marie last saw her husband over Christmas in 2015. She returned him to LE Randfontein, where he was a patient, but two weeks later, when she called the facility she was told he had been moved. She was able to visit him once a month at Masego and called him every Sunday but the conditions weren’t good. There was no nurse on duty over the weekend and, at one point, Frederick was reported sick but was never taken to hospital. Disturbingly, the staff seemed to have tried to cover up Frederick’s worsening condition. She said that in the last three weeks of his life, whenever she called, the staff would “make excuses” like he was sleeping or eating. In mid-July a staff-member called Marie about her husband. “She said ‘You better come now because your husband is about to die’. I asked why? Why? A month ago he was fine,” said Marie. She believed the staff member called from her cellphone so as not to get into trouble and that the NGO was hiding something. When Marie and her son arrived at Masego shortly after the call they found Frederick in a terrible state: he had lesions on his forehead, nose, arms and feet. They were told he was not eating and had fallen down – something which had not happened before. That same day Marie called repeatedly to ask if Frederick could be taken to hospital. She was told that he was sleeping and the nurse would check on him the following morning. When Frederick’s eldest son called the next day the nurse hung up on him. He called back and she said: “Don’t you know that he is dead?”. “They’ve taken the best part of my life away from me forever. I don’t know how I’m going to go on,” she said. “All the guilty must go to jail.” Frederick was buried on 10 August 2016.
Died: 15 August 2016
How long in LE: Two years (Randfontein)
Moved to: Cullinan Care and Rehabilitation Centre, Anchor Home and Precious Angels
When: June 2016
Cause of death: Death certificate states: “Under investigation”. A post mortem was conducted, but the results have not been communicated to her family.
When Christine Nxumalo visited her sister Virginia in LE towards the middle of June 2016 she did not know that this would be the last time she would see her alive. On this visit Virginia was happy, “jolly” and “even made jokes”. Two weeks later she received an SMS telling her Virginia had been moved, but when she called the NGO identified she was told her sister was not there. She tried numerous other NGOs with no luck. It was only on 25 August that Christine discovered Virginia had been moved to Precious Angels, after brief stays at two other facilities. She was called by Precious Angels Director Ethel Ncube who informed her that Virginia had died. This was 10 days after Virginia had passed. Christine was told that a post mortem had been conducted and that Virginia was in a mortuary in Atteridgeville. Both of these were lies as the family discovered. They contacted the police to open an inquest into Virginia’s death but have not been updated. Christine had seen her sister in good health a month before her death. Despite the Alzheimer’s, Virginia was “in good spirits”. The explanation given to Christine by Precious Angels was that Virginia died during “stimulation treatment”. She does not know what this treatment is nor did she authorise it. Whatever the true cause of death, Virginia passed away and, said Christine, “she shouldn’t have”.
When testifying at the arbitration hearings Christine told how she had to call the police for help to have Virginia’s body released by the funeral parlour Put U 2 Rest. She had to fight for a copy of Virginia’s identity book in order to get a death certificate and have a post mortem done.
On the first day of the hearings Virginia’s 21-year-old daughter Shaniece collapsed and later passed away.
Died: 3 July 2016
How long in LE: 7 years (Waverly)
Moved to: Precious Angels
Cause of death: Death certificate said ‘natural causes’
Christopher’s sister Elizabeth Phangela testified at the arbitration hearings that they were only notified of Christopher’s death at Precious Angels almost two weeks after it occurred. This was also the first time the family found out he was at the NGO after being told he would be transferred to a different NGO in Randfontein. In October last year Health-e met with Elizabeth, who was nervously setting out to identify her brother’s body and was disturbed by what she encountered. “I knelt down and checked him and discovered he was so stiff, as if he’d died long ago – and he was very, very, very thin,” she recalled, her eyes moist with tears.
Died: 24 October 2016
Diagnosis: Intellectual disability
How long in LE care: 41 years.
Moved to: Takalani Home
When: 1 April 2016
Cause of death: Dearth certificate stated ‘natural causes’ and Notice of Death stated ‘neuroglycopenic brain injury’ [shortage of glucose in the brain]
Maureen was born with an intellectual disability and was admitted to LE Randfontein just after she turned 20. Her mother could no longer take care of her and earn an income for the family. But every Christmas Maureen would spend about three weeks with the family for a holiday in their home in Soweto. At first the family was happy that Maureen would be moved closer to home. Their joy turned into sadness after one visit to Takalani Home by her sister, Luleka Lorraine Khunjwa. There she found that Maureen had lost a lot of weight within a short space of time, was unstable on her feet, appeared dehydrated and not well-fed. During her time at the NGO Maureen was in and out of Chris Baragwanath Hospital. No-one seemed to know what was wrong and Luleka was told there were problems with her digestive system. But, she said, they were “clutching at straws”. One time Luleka found Maureen with bruises on her body and she appeared to have had epileptic fits for the first time. They took her back to LE in January 2016. “That was the last time I saw my sister really walking and healthy,” said Luleka. “When I saw her next in June I couldn’t believe my eyes. She couldn’t even stand,” she said. “The government was insensitive moving our family members like chickens from one shed to another – people who we loved very much.” Maureen was buried on 29 October 2016.
Sophia Molefe (23)
Died: 12 September 2016
How long in LE: 1 year
Moved to: Family’s home in Soweto
Cause of death: An overdosed on her medication.
Bertha Molefe’s daughter, Sophia, was diagnosed with schizophrenia and placed in care. When the LE contract was terminated she was sent back to her family home in Soweto where her mother Bertha struggled to look after her. “She doesn’t want me to control her so how can I help her? I’m her mother I want to help her. Who will help her?” Bertha told Health-e News already in August 2016, before Sophia died. Sophia refused to take her treatment and became delusional. Bertha said that her daughter began to see everything as a threat including her attempts to help her. The Department of Health stepped in and promised to organise an adequate facility for her but she died before the promises could materialise. One day Sophia took most of her remaining pills and was rushed to Leratong Hospital, but the overdose could not be reversed.
*Note: Both a death certificate and death notice (DHA-1663) are legal documents. A death notice is more detailed and is usually used to register the death at Home Affairs to receive a death certificate, however not all families possess a notice.