The figures for mental health conditions such as depression are sky-high, but investment in mental health resources and policy implementation have not changed significantly since the Life Esidimeni tragedy in 2016, as other high-burden diseases are prioritised.
Christine Nxumalo’s sister Virginia Machpelah died after being moved from the Randfontein Life Esidimeni facility. Nxumalo says the arbitration hearings in 2017 highlighted the cruelty of government and other facilities contracted to care for those with mental health impairments, but the 2021 inquest that resumed on Monday 17 January is answering questions left unanswered during the hearings.
Although Nxumalo wants more information about her sister’s death, she says it is difficult to deal with because it is so personal. “It’s so intense because we didn’t get the full story. So when you listen to this, you think, oh, here’s a puzzle piece, it fits here … The arbitration filled in certain parts, now the inquest is beginning to fill that space and it’s becoming emotional because you see just how horrible everything was. It’s like these people were not people, they were just things.” She adds that mental healthcare has been dealt with in the dark.
Almost 60 former Life Esidimeni patients are still missing today, after the botched move of more than 1 000 patients from Life Esidimeni psychiatric facilities to ill-equipped, fraudulently licensed and unlicensed non-governmental organisations (NGOs). A criminal case was opened for the missing patients, but nothing has happened since.
At least 144 people died after being moved from the specialist facilities when the Gauteng health department ended its contract with Life Esidimeni. A number of health organisations were against the rushed move, in part because there were few facilities able to care for these patients.
Nxumalo speculates that a lot more people may have died at NGOs and been given paupers’ burials.
The National Prosecuting Authority (NPA) said in September 2019 that it did not have enough evidence to charge government health officials and NGO owners for the 144 deaths. It announced the judicial inquest instead that resumed at the high court in Pretoria under Judge Mmonoa Teffo. The families hope the NPA will use the evidence given at the inquest to initiate criminal proceedings.
Nxumalo says the testimony of Hannah Jacobus, the former provincial deputy director general for mental health services who was in charge of the transfer of patients to NGOs, has been revealing. “The attitudes of those people who were involved have not changed. You would have thought people would have been shaken up, frightened, wanting to do the right thing … but everything is just normal and that’s what makes families angry.
“Ours died, but there are so many who survived and there are so many still coming into this space. That’s why we are pushing so hard on this inquest because maybe, just maybe, if someone is charged, attitudes will change.”
Nxumalo thought the Covid-19 pandemic would give authorities more impetus to prioritise mental health, but “it’s almost like Covid is one thing and mental health is unrelated to it”. Those with relatives in mental healthcare facilities weren’t being updated when visits were halted during lockdown.
“They weren’t communicating to the families … It’s a different thing when your loved one is in hospital and you can talk to them, call them and check up on them. But with mental health patients, that wasn’t happening. You were getting updates about everybody else, but you were getting nothing on mental health and we wrote several times to the premier [David Makhura] asking why is this? Don’t the families of the people in those facilities need to know about their loved ones? Especially because a lot of them can’t phone them to check on them,” says Nxumalo, adding that communication was through a social worker.
The 2018 Life Esidimeni arbitration recommendations included compensation, funeral costs and family counselling. Only a portion of the money has been paid out, the recommended memorial has not been built and there has been no tangible increase in investment in mental health or the general health system in South Africa.
“Mental health … is non-existent in the public space … That’s why for us a monument is important, because if it was going to be a stone, that’s just a waste of money. We want a living monument where our deceased can actually contribute to the existing situation right now,” says Nxumalo.
In lieu of a memorial, she says, people in need of treatment need to be able to access it at a community level. Mental conditions need to be picked up early on. “We need every major clinic in each district with a wing dedicated to mental health, so we can pick up the illnesses earlier and people can continue to live with them … [They can] help the family to manage. So when the family [member] is diagnosed … that family has got this clinic to come to and collect their tablets, and do their check-ups … It’s closer to people.”
Nxumalo says there is a Life Esidimeni scandal taking place every day. Durban and Coastal Mental Health has been mired in allegations of neglect, mistreatment and abuse since 2018. And across the country, there are not enough beds or dedicated wards for patients with mental health conditions. Transferring patients from 72-hour observation wards to psychiatric facilities is also a lengthy process because of insufficient beds and administrative hurdles.
Because of the bed shortage, facilities release to their families patients who are not ready, says Nxumalo. “And the person relapses and comes back, and when you relapse the situation is worse than it was before.” This happens regularly, she adds.
The stigma and nursing
Nxumalo says the stigma around people with mental health impairments spills over to staff members, who avoid working with such patients because of safety fears, for instance.
The Gauteng health department said in November that the turnover of nurses at mental healthcare facilities was high and it had a number of vacancies to fill.
“As a nurse, you are really vulnerable, so I think people are also scared of that. A person with mental health, it’s not like they deliberately choose to hurt you,” says Nxumalo.
A South African Human Rights Commission report on the state of mental health in South Africa, published in 2020, said there were system-wide failures and a prolonged neglect of mental health at the level of policy implementation.
The national mental health policy framework and strategic plan aims to integrate mental health into general health, while a 2019 treasury document says one of the objectives of its programme is to strengthen “district mental health services by facilitating the establishment of at least 30 district mental health teams in provinces by March 2022”.
“Part of closing down the facilities and actually bringing the patients closer to home is the policy, but what they are supposed to be doing is training NGOs and teaching them how to look after people with mental illness,” says Nxumalo.