Opinionista Helen Zille 22 March 2018

From the Inside: Western Cape’s efforts not to repeat Life Esidimeni tragedy

The provincial Department of Health began a hunt for unlicensed facilities – and before long had tracked down around 200, many operating in informal circumstances. That is a huge number, carrying massive potential risk, and it sparked focused action and immediate intervention.

When a crisis erupts anywhere in South Africa, for which the relevant provincial government is responsible, one of the first questions I ask my colleagues is: could that have happened here?

Why and how did the tragedy occur? Could it have been prevented? If so, how? What is the situation in the province where we are responsible? What are we doing to ensure that the similar tragedy does not occur here?

And so it was with the Life Esidimeni disaster, during which at least 144 people died and 44 are still unaccounted for, after mental healthcare patients were “de-institutionalised” and taken in by various NGOs. As a result, scores of vulnerable people succumbed to neglect, dehydration, hyperthermia and hunger. A more gruesome story of human suffering would be hard to find.

As the initial details emerged from Gauteng, where the tragedy unfolded, the Western Cape Minister of Health, Dr Nomafrench Mbombo, and the Head of Department, Dr Beth Engelbrecht, interrogated our systems thoroughly.

They told me that de-institutionalisation of patients with intellectual disabilities, in inadequate circumstances, had resulted in this tragedy. De-institutionalisation was national policy, they stressed, with which the Western Cape was also trying to comply.

This is not necessarily a bad thing. It is in line with international trends – considered to be best practice by many in the field. Executed badly, it is a disaster, as Life Esidimeni tragedy illustrates.

The policy is primarily motivated by the interests of the patients, who have the right to live in as normal an environment as possible, with human and social contact outside of institutional walls, particularly with their families.

Another motivation behind the policy is to limit “institutional dumping”, which is a major problem, not only in the mental health field. In one of our best Western Cape institutions accommodating patients with psychiatric illnesses and intellectual disabilities, over 90% of the residents never have contact with their families – sometimes for as long as 40 years.

As a result of the new focus on “de-institutionalisation”, many NGOs have been formed (which are registered by the national Department of Social Development) to fill the void and help resolve this challenge.

This system apparently works well in many parts of the world; but, as often happens in South Africa, we have First World policies with Third World implementation capacity and very little money. The result is that “progressive” policies often have unintended consequences. And the 144 Life Esidimeni deaths are the victims of this.

The first thing I learnt about the NGOs in whose “care” patients had died was that they were unlicensed, begging the question: do we, in the Western Cape, have any unlicensed organisations caring for these vulnerable patients?

Yes, we do, I was told: the Mental Health Act does not require NGOs to be licensed to accommodate these patients.

However, I also learnt that if community facilities take in five people or more, the Provincial Department of Health is required to ensure that they qualify for licensing – and then license them. The big problem is that we do not necessarily know how many such facilities there are, or where they are. Many people with mental health and intellectual challenges have been placed in these facilities by their families, and not because they are being “de-institutionalised” from the government system.

The Western Cape department would not “de-institutionalise” patients into unlicensed facilities. But there are clearly many operating that way because the law does not require them to be licensed before taking people in.

So the provincial Department of Health began a hunt for unlicensed facilities – and before long had tracked down around 200 of them, many operating in informal circumstances. That is a huge number, carrying massive potential risk, and it obviously sparked focused action and immediate intervention.

These facilities were caring for 4,000 people between them – so if we had closed them down we would have had 4,000 intellectually disabled or psychiatrically ill people without accommodation and no alternative. This constituted a crisis.

So the head of the provincial health department consulted the Mental Health Review Board as well as provincial lawyers. They all agreed that, given that licensing criteria are established by provincial guidelines, the Province was at liberty to establish a provisional licensing system to temporarily legalise these facilities, even as we supported them to move towards fully compliant licensing.

Of the 200 facilities, 95 met the criteria for immediate licensing, according to the Western Cape guidelines. These include detailed stipulations on 1) quality of care; 2) good governance; 3) patient safety. Compliance with municipal by-laws is also required.

The Western Cape, I learnt, was the only province that was actually licensing these facilities at all because no other province had formulated clear procedures and criteria to do so.

After many months of concentrated focus and effort, there are still 39 facilities (that we know of) that are not yet fully licensed, but making significant progress.

We are not out of the woods yet, but we are confident we can resolve the challenges at all of them, except one.

This facility (housed in a formal structure in a middle-class Cape Town suburb) will not be able to qualify because of certain unresolvable issues. We needed to make alternative arrangements for the 30 people living there.

The provincial department contacted the families of its 30 residents, and convened a meeting to discuss the future of their loved ones. A small number came. There are always some families who care deeply, but others do not. By the end of the meeting we had six signed forms authorising us to move the patients to a more suitable facility. As we were trying to track down the remaining families we received a lawyer’s letter demanding that we “cease and desist” from our attempts to close the facility down. Now we have to let the process wend its way through the courts. Meanwhile people are still in this facility.

This is not the first time we have been required to intervene. Not long ago, I received a personal tip-off about unsatisfactory conditions in another facility for people with serious intellectual disabilities. The information did not come from the families. It came from a neighbour who had seen and heard worrying signs over her wall, as well as a professional who works in the intellectual disability field. I paid an unannounced visit and learnt that one resident had been burnt by a food trolley in an accident, and another had died in the middle of the night by choking. These events were attributed to accidents, not neglect.

I nevertheless met the governing board (which included prominent community members) and left reassured that the place was properly run. I learnt that many of the residents rarely, if ever, had any contact with their families.

But the neighbour’s complaints persisted. In the end I sent in mental health experts from both the private sector and government who, after an in-depth investigation, recommended some crucial changes, including replacing the head of the institution, which duly happened.

There had indeed been problems that I, as a lay-person, could not detect, and that the governing board, as committed as they were, had not identified.

But there are additional challenges in the mental health field. The most pressing is that the demand for care grows by the day. A great deal of the increasing demand can be attributed to the abuse of illicit substances that sometimes trigger mental and psychological illnesses. The worst offender is tik (methamphetamine), the use of which has reached epidemic proportions in the Western Cape. But dagga and Mandrax and other drugs also play a part.

And then there is foetal alcohol syndrome. In a recent disability survey, I was shocked to see that researchers had identified 30% of residents in a particular community on the West Coast as having a “disability”. When I enquired further, I learnt it was primarily due to debilitating levels of foetal alcohol syndrome. Many people with this 100% preventable disability require life-long and costly care.

At the other end of the spectrum, thousands of bright and intelligent children come to the Western Cape every year, looking for a place in our schools and a better chance in life. This week, I made unannounced visits to schools and saw classrooms where one teacher is battling to teach 79 children who are sharing desks. There is hardly room to move, which is a hazard in itself. We just do not have the money or the resources to accommodate 25,000 additional children (the equivalent of 25 new schools) in existing Western Cape schools every year. Something has to give.

As I have often said (to the outrage of many): The first thing we have to do is to put much more effort into preventing preventable conditions that cost us billions each year. Among these are substance-induced intellectual disabilities or mental illnesses. We are losing the war. Making the trade-offs between competing needs in a context of shrinking resources is a terrible, often gruesome part of drawing up annual budgets.

As the demand for mental healthcare grows, so our resources shrink. Permanent “institutionalisation” is no longer viable, affordable nor desirable in most cases, even when it is high-quality. We have to find an efficient and effective model that enables families to retain contact with their loved ones in a “half-way-house” context, where these patients can receive the support and care they require, while continuing to have contact with their families, who must raise the alarm if things go wrong.

People sometimes accuse me of having an empathy deficit. They are profoundly wrong. I have enough empathy to know that hand-wringing does not cut it. Asking the right questions and taking the hard decisions does. Taking personal responsibility does. Having a capable, competent and efficient department does.

This means appointing the right MEC to head the department and the right professionals in the right positions, who are dedicated enough to go way beyond the call of duty, tooth-combing an entire province to find unlicensed facilities to make sure they are brought up to scratch. That is real care, not sentimentality.

Because no other province has had a licensing regime, who knows how many other people have perished in unlicensed facilities without anyone raising the alarm? The Life Esidimeni tragedy may be the tip of an iceberg.

It’s time that more people in South Africa asked the hard questions – all the hard questions – so that we can prevent tragedies like Esidimeni happening again. DM

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