South Africa

South Africa

Life Esidimeni: Families of mentally ill patients blame MEC for deaths

Families of psychiatric patients at Life Esidimeni repeatedly raised concerns about the future of their loved ones after the Gauteng Department of Health announced they would be relocated. They say they’ve been frustrated and neglected. Barely three months after 1,300 patients were relocated to NGOs, 36 have died. Relatives are still worried while the opposition is calling on Gauteng health MEC Qedani Mahlangu to resign. By GREG NICOLSON.

“My sister died at your NGO on Wednesday, 17th and they only tell me today, 25th,” began Christine Nxumalo in her August e-mail to Gauteng mental health director Makabo Manamela. Her 50-year-old sister was being treated at Life Esidimeni’s Randfontein facility before she was transferred to an NGO called Precious Angels. “I know you do not give a fuck about us the families of the deceased and families of the patients,” she continued. “It is clear that you do not give a damn, never have and certainly not now.”

Nxumalo’s sister is one of 36 patients who have died since the Gauteng Department of Health ended its contract with Life Esidimeni to save costs and relocated around 1,300 patients to NGOs in June. Government has said only an investigation and autopsy reports will determine who is at fault. But relatives of those who were taken out of Esidimeni, as well as psychiatric professionals, have suggested the fatalities could have been avoided if only their pleas had been heard.

Nxumalo later found out that her sister actually died on 15 August, meaning it was 10 days before she was told by the NGO entrusted by the government to take care of her sister.

As a patient, it wasn’t easy to get into Life Esidimeni. The institution took the most serious cases of mental illness, those who needed committed treatment, who had either done something drastic or had been through other facilities and nothing else had worked. Most of its patients were there long-term, or probably even there for life. Many came from poor backgrounds. Gauteng’s deal with Life Esidimeni was based on a public-private partnership, with the provincial government paying the hospital to take patients for decades. Last year, Mahlangu said it was costing too much, taking too high a proportion of the health department’s resources. She ended the contract.

The MEC’s decision was in line with policy. The department wants to reduce dependence on institutions and increase community care so the mentally ill can be treated closer to home or, if possible, at home. But the policy was envisaged to come into full effect in 2021. Mahlangu’s cutting of ties with Life Esidimeni meant it would be implemented in 2016, seeing patients disbursed to NGOs or going into home care.

Professor Anthony Pillay, president of the Psychological Society of South Africa, warned in January that “upon discharge without the same level of structured care and supervision there is a high probability of relapse and disintegration of the rudimentary coping skills, resulting in a need for more intensive mental health treatments than previously required.” Patients’ relatives panicked at the prospect of taking care of their loved ones, who required specialised attention, but Gauteng health reassured them that qualified NGOs would be able to absorb the patients not ready to go home.

Stakeholders outside of government knew the risks, knew any plan involving patients going to NGOs would have to be checked. It was clear, the NGO network at the time couldn’t cope. The issue went to litigation; there was a protest. Civil society groups and relatives wanted to know the patients would at the very least receive the same level of care they got at Life Esidimeni. The provincial department assured them NGOs were ready or being renovated to cater for the patients. A settlement agreed patients would at least receive the same level of care they got previously and discussions led the families to believe they would be able to inspect all the NGOs and know where their relatives were going, when.

Families now blame the Gauteng Department of Health for the deaths, and in some cases patients’ ongoing poor care. They say the government failed to communicate important details and went ahead with their plans despite a promise to include the families.

Nomvula Nonjabe’s 25-year-old sister was moved to GoitseModimo Care and Support Group and Skill Development. She doesn’t have a problem with the facility, but is concerned about reports someone escaped recently. Before becoming a patient at Life Esidimeni, her sister was at an NGO and escaped four times. Staff at GoitseModimo denied the escape report and ended the conversation, while government wouldn’t confirm it, she said, leaving her worried the facility might allow her sister to escape.

“They don’t know how to communicate with us,” said Nonjabe on dealing with the Gauteng Department of Health. It didn’t provide the full list of NGOs of where the patients were sent. “They just say they will do it and you don’t see them do it.” After one relocated patient from Esidimeni was reported to have died, Nonjabe said they raised the issue with the department and expressed concerns some of the NGOs don’t have adequate medical supplies and were giving patients insufficient or rotten food. The department was adamant only one person had died, while Nonjabe now believes the number might even be higher than 36.

“Had they attended to these things we wouldn’t have 36 people dead already,” she said. “If we could just get co-operation and communication from them it would be so much better.”

Families also complained about how the patients were moved. In June, patients were suddenly herded like cattle on to buses, said some family members, taken, without notifying relatives, to facilities they had not approved or even heard of. Nonjabe had earlier been told her sister was being taken to a facility far away, which she refused. She was next told of her sister’s relocation on the day she was to leave Esidimeni.

The government said it had ended its contract with Life Esidimeni because it was too expensive, but on Wednesday Mahlangu said conditions there weren’t all “hunky-dory”.

“To all the families, to us, everything at Life was hunky-dory,” said Nonjabe. “It’s all their fault.”

Lesego Baloyi’s sister was transferred to Takalani in June after being a patient at Life Esidimeni since 1983. Baloyi didn’t know her sister was moving until a friend went to visit and found her in a line for a bus. “She’s not well,” Baloyi said of her sister’s deteriorating condition at the new facility. She doesn’t eat well at Takalani, it’s cold, and her complexion has darkened from sitting in the sun all day. Baloyi tried to raise the issues with staff, but when media reports emerged of problems relocating the patients, they stopped responding to her.

At Esidimeni, Baloyi’s sister was in a women’s ward. Now she’s mixed in with men and children. There are no uniforms and there’s a tavern nearby. “They’re smelly and they’re dirty,” Baloyi said of the patients at the new facility, worrying whether their clothes are washed. She is worried her sister might escape and won’t be able to be recognised as a patient.

Ivan Lukhele was one of the leaders of the family committees dealing the with Department of Health. While the relatives fought the decision to relocate the patients, it was clear they weren’t going to persuade the government and they focused on buying time and ensuring their loved ones would receive adequate care at other facilitates. He was one of the relatives who went to inspect the NGOs where the patients would be sent. Most looked good, although they later found out worrying details; one was “shocking” and cut from the list. But the relatives were using their own resources to travel across the province. After what appears to be apathy on the state’s side and the difficulty to commit and pay their own way from the families’ side, the visits stopped. They’d only seen about six sites, while patients were sent to 122 NGOs.

“Why are people being shipped out of these hospitals to places we don’t know?” Lukhele said. Their protests went unheeded. “The department has failed the group,” said Lukhele. “We wanted the department to look out for the needs of people who are mentally ill. They’re the most vulnerable people in society.”

“The treatment that the patients at the Takalani centre receive is beyond human imagination because the current staff members abuse the children psychologically and emotionally,” TimesLive quoted a former staff member at the facility where patients have been sent.

Jack Bloom, Democratic Alliance shadow MPL for health in the province, found out the 36 people had died after questioning the MEC in the legislature. “I’m now calling for the MEC to resign,” he said. “She pushed ahead despite a plethora of warnings.” It’s still unknown where and how the 36 people died. Mahlangu didn’t offer the information, but Bloom said he had reliably learnt that eight died at Precious Angels, while others died in Takalani and Cullinan.

There’s no information online, or in some NGO registries, about a Precious Angels NGO in Gauteng. Sources said Precious Angels was registered as an NGO in June, when Esidimeni patients were to be relocated, and had operations in Atteridgeville and Danville, both in Tshwane. “We can’t trust the lives of seriously ill people to anything other than well-established NGOs,” said Bloom.

Daily Maverick was unable to speak to Precious Angels, Takalani or the Cullinan facilities on Wednesday. Mahlangu has said Life Esidimeni complicated the patient relocations and did not provide medical records for patients being transferred. Questions to Esidimeni also were also not answered on Wednesday.

Daily Maverick also could not get comment from the Gauteng Department of Health, but on Wednesday Mahlangu told media not to prejudge the situation. “I am not going to discuss in public the outcome of these things because we are beginning to encroach into a private doctor-patient relationship and that can’t be correct‚” she said. “Let’s not get into the merits of the causes of death. Let’s allow the professionals to do that work. Then we can have a conversation‚ not about what the causes of death are‚ but about whatever the issues that will come out.”

Demands that the MEC must be accountable will continue before then. Health Minister Aaron Motsoaledi has asked the health ombudsman to investigate the case. Considering the number of civil society organisations already involved, there will likely be calls on the provincial government and medical authorities to investigate the issue.

Christine Nxumalo, however, has been busy trying to bury her sister. She received a terse response to her irate e-mail, but, effectively, it was ignored. “It was a nightmare and no one should be put through that,” she said. “I’m angry at the way she died. I’m angry at the people they sent her to… She wasn’t sick.” DM

Photo: Gauteng MEC for Health Qedani Mahlangu (Flickr)

Read more:

  • Gauteng: Contract cancellation may force 2,000 mentally-ill patients out of care homes in Daily Maverick
  • Gauteng health department accused of shirking mental healthcare rights in Daily Maverick