Why did my sister die in a South African care home?

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Media captionCare home staff 'did not know what to do with patients'

The silent deaths of 94 mentally ill patients in South Africa is symptomatic of their place in society, but their families want explanations, writes the BBC's Pumza Fihlani in Johannesburg.

Virginia loved music. She had an infectious laughter. She loved her family.

Even with Alzheimer's, parts of her had not been lost. Her family still cannot believe she is gone.

"She was murdered. That's how we see it. Decisions were made by people who had no regard for my sister and any of the other families, in the end they killed them," says Christine Nxumalo.

Her sister, 50-year-old Virginia Machpelah was one of the 94 psychiatric patients who died following a move from facilities run by Life Esidimeni, a private healthcare company last year to various care homes in Gauteng province, around Johannesburg.

Many were transferred without the knowledge of their families.

About 1,900 patients were transferred to these centres after the Gauteng Health Department cancelled its contract with the private institution in 2015 to save costs.

Christine Nxumalo:

"She looked so thin - she wasn't the Virginia I knew. She was in good spirits, she didn't want us to leave - we spent hours laughing. She could even remember who we were."

The mass transfers were made between March and June last year, scores of deaths followed but they were not reported, not even to the families, according to an independent report.

The department was paying for the patients' upkeep - from medication to specialised therapies - because the families couldn't afford them.

And the families were happy.

So what went wrong?

Image copyright Christine Nxumalo
Image caption Virginia Machpelah had been making progress before she died

It emerged that the department, against all advice and two court cases to stop their plans, moved the chronic patients into community facilities, which didn't have the staff, facilities and proper equipment to care for them.

The report says that of the deceased, 77 died in 27 facilities which did not even have valid operating licences. Some of these centres were a little more than a house with a few hospital beds, if that.

This tragedy has shocked many in South Africa.

This is the first such case reported in the country - the challenge now for all those involved would be how to prevent such a tragedy from happening again.

Some have suggested better monitoring of care homes to make sure they are inspected before patients are sent there. They argue this could have saved many lives in this case.

While the national Health Minister Aaron Motsoaledi has been praised for calling for the investigations, he says he is "very angry and heartbroken" over the deaths, especially because they could have been avoided.

'Proud mother'

A damning report titled No gun: 94 silent deaths and still counting by Health Ombudsman Malegapuru Makgoba revealed that many of the patients had died from dehydration, starvation and diarrhoea.

Uncontrolled seizures and pneumonia were also listed in the report, suggesting that the patients were refused medication. Only one death was directly attributed to mental illness.

The provincial health department had been adamant that the move was in line with the country's 2002 Mental Health Act to "de-institutionalise" the patients - move them from psychiatric facilities to home-based centres.

Key findings from the report:

  • 94 people died between March and December last year, and not 36 as the Gauteng provincial health department had reported
  • Of the group, 77 died in 27 unregistered NGOs in parts of Gauteng province
  • There had been numerous attempts from 2015 by families an advocacy groups to halt the move, to no avail
  • The report found that decision to move patients was "irrational, unwise and inhumane"
  • Many of the facilities lacked staff, facilities and equipment to care for the chronically psychiatric patients
  • Most died of unnatural causes included starvation, dehydration and diarrhoea
  • The planned never shared with a number of senior officials include some in the National Health Office
  • There is a prima facie evidence that a number of officials may be guilty of human rights violations

Source: No gun : 94 silent deaths and still counting

The department also said that the move would save money, but this claim has been dismissed by the ombudsman's report - and so it remains unclear why the former provincial health minister Qedani Mahlangu approved the transfer.

Ms Mahlangu resigned just hours before the report into her department's handling of the matter was made public and has not spoken since.

But for Virginia's family, no explanation will ever suffice.

Ms Nxumalo says her sister appeared to have lost weight when she viewed her body in August, lying lifeless on a mortuary table.

The thought that she may have suffered before her death is too gruesome to bear.

"She looked so thin - she wasn't the Virginia I knew. When we last saw her before she was moved, she looked good," says Ms Nxumalo, tears streaming down her face.

"She was in good spirits, she didn't want us to leave - we spent hours laughing. She could even remember who we were."

Searching for answers

The next news she heard of her sister was in a phone call in August telling her she had died - she wasn't only shocked to learn of her death but that she had been transferred without the family being told where she was.

"The woman we're talking about was a fighter," her sister tells me. "She was the proud mother of a 20-year-old daughter who thought the world of her.

"She took great care of herself, didn't drink or smoke because she believed 'your body is the temple of God'."

But in the end, Virginia was stripped of all dignity - her body was one of a number dumped at an overcrowded morgue, unclaimed for weeks after her death because she had been taken there, once more without the family's prior knowledge or consent.

Image copyright ELIZABETH SEJAKE, Rapport

She died at Precious Angels, a centre in Attridgeville which recorded one of the highest deaths in one place in this unfolding scandal. It's in a township in the capital Pretoria.

According to records, it was only registered in June last year as patients were being moved. It has since been shut although it's not clear when.

The two-floor brick house, which looks like any other suburban home on that street, is now home to some tenants.

"When we moved in late last year, some rooms hadn't been used for months, there were no patients but there were hospital beds outside," one tenant told me.

Christine Nxumalo:

"Do you know how many lives could have been saved had the government listened? They cannot get away with this."

Three other tenants are peering through the window at this point - they tell me they've been overwhelmed by families calling at the house, in search of answers.

In a terse phone call, the woman registered as the director of Precious Angels, Ethel Ncube, refused to comment on the matter, saying she was co-operating with the investigators.

A total of 18 people died at her facility.

When the story first made headlines, in September last year, the provincial health department put the death toll at 36 but this report suggests the deaths were already at 77 - a fact concealed by authorities.

'No mercy'

The families' relatives say their loved ones were treated as "less than human" by people working for a government voted in to end inequality and discrimination - people who themselves knew oppression under white minority rule.

Now new regional health minister Gwen Ramokgopa and a task team have been appointed to clean up the mess and help restore the public's faith in the care of South Africa's mentally ill patients.

They need to locate where all the patients are, inspect the conditions they are living in, investigate how many deaths remain unreported and work out how many patients are still alive.

Image copyright AFP
Image caption The family members of some of the 94 mentally ill patients who died last year have been talking to lawyers about legal action

Opposition parties are calling for criminal charges to be laid against Ms Mahlangu and her officials over the deaths.

In the past, mental illness has been neglected in South Africa, resulting in inadequate budget and resource allocations.

But since 1994, the country's mental health laws have been brought into line with WHO standards but how the policy is carried out on the ground often falls short due to corruption, especially in public facilities, according to experts.

"We haven't learnt from previous mistakes in that the money did not go to the correct places, and did not provide adequate care for the most vulnerable in society," Daily Vox quotes University of Cape Town's head of Public and Community Mental Health, Professor Crick Lund as saying.

The families will meet with their legal representatives to decide how they can ensure the responsible are held to account and whether or how they want to proceed on issues of compensation.

Ms Nxumalo and other families are working with advocacy group Section 27 to bring those responsible to book.

"They were showed no mercy. They had no voice, no matter how hard we tried we failed," she tells me.

"Do you know how many lives could have been saved had the government listened? They cannot get away with this."

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