The 2016 Life Esidimeni tragedy was a watershed moment for mental healthcare – and should have been a wake-up call. Why it wasn’t is a sober realisation that what comes next may look a lot like what came before, writes Ufrieda Ho in Daily Maverick.
An occupational therapist who has worked in the Gauteng public health sector for more than 20 years says that seven years later, she still hears the cries of the mental health patients who became victims of bad government decision-making that turned into a horror story.
Tracy, who has asked for anonymity because intimidation keeps government employees like her silent, has her own timeline after two decades: personal witness to mental healthcare failings, the pinnacle of the dysfunctional system being the 2016 Life Esidimeni tragedy.
In 2015, the Gauteng Department of Health decided to end its contract of 30 years with private mental healthcare service provider Life Esidimeni, ostensibly to save money. Its decision meant about 1 500 mental health patients were placed into 27 alternative facilities.
The resulting neglect, starvation, abuse and inferior care of these patients would be exposed as leading to the deaths of 144 people.
Subsequent investigations resulted in the Health Ombud’s report of 2016. It found that all 27 NGO facilities were unlicensed, that the cost-cutting rationale undermined patients’ rights to mental healthcare and that there was evidence that “certain officials and NGOs and some activities within this department led by the then Health MEC Qedani Mahlangu violated the Constitution” and contravened the National Health Act and Mental Health Care Act.
An arbitration process between the government and families of the Life Esidimeni deceased followed and a judicial inquest is ongoing.
For Tracy, the tragedy still haunts her. She remembers standing in a converted horse stable with no windows – one of the facilities approved by the department as fit for care for 12 patients.
“It was owned by someone who was approved to take care of these patients. I just stood and cried,” she says.
She feels the deaths should have shaken and shamed authorities to take responsibility and commit to action and change.
“Things are not much better now: mental health still comes last in healthcare – we are always told there are not enough resources.”
Tracy sees about 90 patients a month, more than double what’s recommended in the hospital where she works. OTs in mental health play an essential role to help patients function optimally in their daily activities. It can be skills to cook for themselves, to manage finances, recognise triggers and to have routines for their medication regimes.
A revolving door of care
“The number of people who have mental illness is far more than what we can handle. The system is overloaded. We are always playing catch-up, while the backlog keeps growing,” she says.
Not enough posts are being created and vacancies remain unfilled. Admission protocols at her facility also only allow male patients a maximum of a 12-day stay. For women it’s 20 days – both hopelessly short, she says.
“Once the patient is medicated and can speak nicely to you then we let them go, even though we need 30 days to assess if they are coping. A few weeks after being discharged, we see that same person again, needing institutionalisation.
Tracy, like all mental healthcare workers, currently works with no National Mental Health Policy Framework and Strategic Plan in place. The last framework and strategic plan was for 2013 to 2020.
It’s now three years overdue for approval and implementation.
Mental health review boards that are supposed to have a watchdog function protecting patients’ rights have been non-functioning for years, say patient rights groups.
A decade ago already, the then policy framework acknowledged that “mental health continues to be underfunded, under-resourced… despite neuropsychiatric disorders ranked third in their contribution to the burden of disease in South Africa”.
The government document also recognised challenges like the lack of “accurate routinely collected data regarding mental health service provision and huge disparities in how different provinces addressed mental healthcare needs and allocated spending”.
A decade on, the same challenges continue. Disaggregated data to establish expenditure on mental health from general healthcare budgets is lacking – as the authors of the 2019 report, An Evaluation of the Health System costs of Mental Health Services and Programmes in South Africa, found.
“The government does not track or specify dedicated budgets for mental health services provided through lower levels of care… We do not know how much is being spent…
“This is important when future efforts are to be focused on decentralising care away from the specialised care level to district, primary and community levels,” report authors Sumaiyah Docrat, Donela Besada and Crick Lund found.
They called it “alarming” that there was a treatment gap of 92%, meaning “fewer than one in 10 people with a mental health condition receive the care they need”. In 2019, the estimates were that 5% of the total health budget was spent on mental health service, which is lower than international benchmarks, they reported.
How did mental health become so grim?
In the mid-1990s, the new government looked to de-institutionalise in favour of channelling patients into a community-based framework of care – in line with WHO guidelines to more dignified, integrated care for mental health patients. On paper, a good move.
Professor Lesley Robertson, a psychiatrist working in the Sedibeng District health service, who was part of the expert panel for the investigations by the Health Ombud in 2016, says: “Life Esidimeni was a culmination of several decades of a policy to de-institutionalise but the process proceeded at a rapid rate countrywide without any increase in community services.”
Robertson says as the Gauteng Health Department shifted to close long-stay institutions that also included “halfway houses” as step-down facilities, the mandate was for “funding to follow the patient into districts and communities”.
The plan was to provide multi-disciplinary specialist teams operating in a primary healthcare setting, with NGO residential and day-care centres being established. A partnership with the Department of Psychiatry at Wits University was also shored up to expand community-based services.
But over the next decade, “human resource allocation was not sustained”. Without a strong community-based network the programme failed, people fell through the cracks – and still do.
There are still only 16 beds per 100 000 people for acute mental health admissions, a significant shortfall considering just under a quarter of inpatient psychiatric expenditure is spent on readmissions within three months of discharge.
“The community-based care model has not made people more functional,” Robertson says. As people are considered “society misfits” they can become increasingly isolated, neglected and stigmatised by family, friends and also by law enforcement and clinic staff.”
Without the national strategy framework for mental health in place, there is no clinical programme guideline. Mental healthcare staff simply “don’t know what they’re supposed to do”. It means less accountability and less cohesion in planning for patient care.
Costs of care
Eric Buch was deputy director-general of health in the GDoH in 1995. He says that by the mid-1990s the costs of the Life Esidimeni contract were already under “major scrutiny”. But the department decided to keep the contract going, knowing community structures to support deinstitutionalising were not in place.
Buch left the government in 1999 and is now chief executive of the Colleges of Medicine of South Africa (CMSA) and a professor in health policy and management at the University of Pretoria. He says there has been a slide since the 2000s, worsening to the decision-making in 2015 by Mahlangu’s administration to proceed with their Gauteng Mental Health Marathon Project, leading to the Life Esidimeni disaster.
Buch says decisions made in the early days of democracy came off a low base, given the priority to deracialise healthcare.
“You could make dramatic challenges without doing much because there just weren’t decent services for most people before democracy.”
But by the next decade the honeymoon period was over, with a decline in the rand’s value and global attention shifting from South Africa, as the new rainbow nation lost its gloss. Budgets didn’t grow, health system inefficiencies couldn’t be sorted, and corruption took root.
“One never thought there would be this kind of looting in the health sector,” he says.
But there has been, and the Gauteng Health Department and the national Health Department are notorious for the corruption, inefficiencies and collapses that go unfixed.
The Gauteng department has, for years, been a “site of capture”, says Kavisha Pillay of NGO Corruption Watch and a member of the National Anti-Corruption Advisory Council, “because of the large amounts of money flowing through it”.
Intricate webs of corruption
Pillay says there are intricate webs of corruption in the Health Department, from syndicates that loot using illegal tenders and procurement deals through to smaller scams, like false overtime claims by doctors; data capturers who change details for a few hundred rands or those siphoning off pharmaceutical supplies for illegal trade.
“There’s political interference too,” she says, including appointments of incompetent, underqualified candidates to key positions.
There’s also violence, including assassinations and intimidation of whistle-blowers and investigators, with no action from law enforcement.
Pillay adds that corruption also relates to lack of follow-through on investigations or implementation of recommendations meant to clean house or improve patient care, and tactics to stall the wheels of justice.
Laetitia Rispel, a professor of public health at the University of the Witwatersrand who has researched corruption in the GDoH, says key informants report that “corruption has – for years – been rampant and reached uncontrollable levels”.
Corruption means blind eyes are turned when it comes to compliance, including with occupational health and safety standards – the kind of basic oversight that should have taken place at facilities where the Life Esidimeni patients were sent.
"It’s a typical South Africa syndrome, where you go from one inquiry to the next but see no consequences for people’s action or any sustainable change.”
Inquest
The inquest into the deaths of the 144 patients is still under way, aiming to establish grounds for criminal prosecution of officials and owners of the “care” facilities. It relates to key findings in the Health Ombud’s report.
There are 18 legal teams involved in the inquest. SECTION27 represents 44 bereaved families. Sasha Stevenson, SECTION27 head of health, says the costs for the state are huge – an almost ironic circle-back to the supposed “cost-cutting rationale” for initially ending the Life Esidimeni contract.
For her, these intertwined failings make the seven-year process of arbitration, the successful litigation that came with the awarding of damages on the basis of a violation of patients’ constitutional rights and the ongoing judicial inquest, even more critical to targeting dysfunction in the health sector.
“These are incredibly valuable accountability mechanisms, forcing people to come before a judicial officer … to explain and be cross-examined.
“Without these, we would have a blank space, which is often the case where there has been a huge human catastrophe in South Africa.”
What comes next, Stevenson says, must be continued vigilance and sustained pressure to demand better solutions.
SECTION27, with the South African Depression and Anxiety Group, the South African Federation for Mental Health, the South African Society of Psychiatrists and the Life Esidimeni Family Committee, formed the South African Mental Health Alliance in 2015.
They were among the civil society groups that in 2015 urged the GDoH to reconsider plans to move patients, or at least to plan better for the department’s so-called Gauteng Mental Health Marathon Project.
For Leon de Beer, deputy director of the South African Federation for Mental Health, the lessons from the Life Esidimeni tragedy must be a catalyst for a full package of services allowing for effective de-institutionalisation.
These must include enough beds to give people proper long-term care when needed; tailored services for children and teens; better management to prevent drug stock-outs; and teams of professionals, from psychologists, psychiatrists and occupational therapists, to counsellors and social workers at primary healthcare level.
He adds: “Nurses and all staff within clinics need to undergo human rights and anti-stigma training. Nurses are sometimes the perpetrators of stigma and discrimination against mental healthcare users.”
De Beer says a new Mental Health Policy Framework and Strategic Action plan must be implemented and mental health review boards revived. There also needs to be monitoring for adherence and consequences for transgressions.
MentalHealthReport
Daily Maverick article – Looking back on Life Esidimeni – ‘Mental health still comes last in healthcare’ (Open access)
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Life Esidimeni victims, families, paid R405m
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Life Esidimeni: former Gauteng mental health boss denies concealing information
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