Community mental health care can be better for patients and health systems if it’s done right. Find out how one organisation is making it work.
It’s Monday morning in Port Elizabeth. As the city’s commute gets underway, Gary Thomas* hears a familiar “ping” from his phone — a new What’sApp message. It’s a Bible verse from his pastor.
For Thomas, 51, every day is hemmed in prayer.
He makes his bed, smoothing a dark green blanket over a small twin bed. Above it hang framed photographs of two little girls — their sun-bleached hair matches his in a photo taken around a breakfast table with their grandmother.
It’s almost 9am. Like clockwork, Thomas heads out the door and down the stairs to the games room of Care Haven Psychiatric Care Centre in the port city’s downtown. In the converted garage, he sets out black metal chairs between the gym equipment and the ping-pong tables. The centre consists of a mix of semi-detached houses and flats joined together.
Thomas expects about eight fellow residents for his weekly Bible group.
As they trickle in, the sound of security gates locking clicks throughout the row of old, converted flats that make up the centre. They’re not meant to keep people in; they’re meant to keep them out.
“Our people come and go as they please. We have very few rules, but one of the main ones is that between nine and 12 we expect people to be out of the bedrooms. We have gated systems because people will slip back in and they will just want to sleep the whole day,” the centre’s psychologist, Grant Willatt, says.
He is one of Care Haven’s 26 staff members that care for its 70 residents with mental disorders. There is a full-time nurse, a registered counsellor, a social worker and three certified caregivers who come in three days a week.
Most residents have one of five disorders: schizophrenia, bipolar or other mood disorder, or general depression and anxiety.
Willatt says: “It’s quite a common thing [for residents] with chronic schizophrenia to want to sleep during the day. Over time, you’re asleep in the day and you’re awake at night. If you’re alone and awake at night, that’s when there’s more potential for symptoms of the condition to come to the fore. Hearing voices is one of the main ones.”
Studies have shown schizophrenia makes it difficult to distinguish between what is real and unreal, think clearly, manage emotions and relate to others.
Care comes closer to home
Thomas has bipolar disorder. He was diagnosed 15 years ago and has been living in Care Haven for almost two years. Before he moved there, he lived with his wife and two daughters. He had regular episodes of mania and depression — periods of euphoria and deep lows. Eventually, he was unable to work and his wife divorced him.
His ex-wife pays for his room. Private patients pay up to R4 210 a month for a room.
The Eastern Cape department of health pays about R80 000 a month in subsidies for 60 state patients at the centre, but patients are expected to contribute towards the room and board.
Thomas is a private patient; he comes from a middle-class family. Although private health insurance covers members’ medication, it does not cover accommodation at Care Haven.
“Even though we’re a welfare organisation, we run it like a business. There’s no profit per se but I still have to think of the staff who have to be paid and food that has to be bought,” says social worker and director Dianne Robb.
Care Haven, which relies heavily on donations, is one of South Africa’s 39 licensed community-based mental healthcare facilities where patients can live, according to South Africa’s 2013 national mental health policy.
There are no such centres in the Northern Cape, the North West or the Free State, leaving many patients like Thomas, with severe mental disorders, with nowhere to go. The families of such patients are often unable to provide them with the care they need and there are simply not enough beds in psychiatric hospitals.
The goal of places like Care Haven is to care for some mental health patients outside of psychiatric hospitals. The approach, often referred to as “deinstitutionalisation”, has gained in popularity internationally in the past 50 years or so.
“The old model of providing mental healthcare was that people had to be removed from society to be treated, but that’s really not necessary anymore. We have medication that can help most people live a fairly normal life even if they suffer from severe conditions like schizophrenia or bipolar disorder,” says Crick Lund, the director of the University of Cape Town’s Alan J Flisher Centre for Public Mental Health.
“The whole thinking is to try and integrate mental healthcare into normal community life. It’s a contravention of human rights to remove them from society and it also leads to greater stigma to keep people in psychiatric hospitals,” he says.
Community-based mental healthcare can lead to better care for patients
Community-based care can take many forms, from that found at Care Haven to models in which trained community health workers provide care in tandem with specialists, Lund says.
Some African countries, including South Africa, have piloted community health worker-based programmes for mental health. But not many have evaluated their effect on patient health, according to a 2010 review published in the World Psychiatry journal.
But Indian researchers conducted a randomised controlled clinical trial to find out just that. They paired about 200 patients with schizophrenia with specially trained community healthcare workers. These workers provided care close to home in between patients’ visits to specialists at facilities.
The study found that patients with community health worker support were less likely to show symptoms of the illness, which include audio and visual hallucinations. They were also almost three times more likely to take their medication regularly than patients who only received care at facilities, according to the 2014 study published in The Lancet medical journal.
Although this approach is being piloted in South Africa, it is not widely available.
Instead, South African mental health patients have been moved out of hospitals at a faster pace than the country has been able to create community-based organisations to house them. The country’s national mental health policy admits that “deinstitutionalisation has progressed at a rapid rate in South Africa” … leading to a high number of mentally ill people living on the streets or in prison and those in “revolving-door patterns of care”.
Rushing community-based care risks ‘disaster’
In Gauteng, the results have been fatal. In June last year, the Gauteng MEC for health, Qedani Mahlangu, announced that the department had started what she called “cost-containment measures”, including cancelling its contract with private hospital group Life Healthcare for the care of almost 2 000 long-term, state-funded psychiatric patients.
Despite civil society protests, patients were sent home to their families or transferred to community-based nongovernmental organisations. At least 36 of the transferred patients have died following the move.
“Some of the big challenges are at provincial department of health level. For example, the decision to close the Life Esidimeni facilities in Gauteng without setting up adequate community-based care has really been such a disaster,” Lund says. “We have a very good policy, which advocates for community-based care but, at the provincial level, the budget allocations are not happening.
“The principles that we have learnt from high-income countries is, when you go through a process of deinstitutionalisation and closing psychiatric hospitals, the money has to follow the patients into the community. But that has clearly not been happening.”
According to The Lancet study, a way to cope with the lack of facilities is to use community healthcare workers to care for patients at their homes.
But for many in South Africa this isn’t an option.
Sometimes, going home is a journey
“By the time the people get to us, they are very broken and hurt,” says Robb. “Families have rejected them. They’re done with them, and they have had enough. They have hit rock bottom, and we have got to start building them up from scratch.”
For Thomas, mania felt so good that he likens it to an incredible drug. Some people living with bipolar will even try to ride the mania for as long as they can to keep that feeling going, but there is a steep price to pay. For every high, there is a low.
“The longer you stay manic or high, the longer the depression period lasts. You wake up in the morning, and you don’t want to get out of bed. You just want to sleep all the time.
“That was one of the reasons why my wife said she divorced me — because I just slept,” he says.
He would have celebrated their 21st wedding anniversary in March. Instead, he has to cope with the aftermath of a divorce. His 17- and 19-year-old daughters are struggling to come to terms with his illness and have stopped communicating with him.
“My pastor and my close friends have all said to me ‘just give it time with the girls’. I have never cried as much in all my life as I have cried here at Care Haven. I’m heartsore for my girls,” he says.
André Niemand has been Thomas’s pastor for 11 years. He says it’s not just Thomas’s family who don’t understand his condition. His former preachers also failed to comprehend it. “One of them almost destroyed him. [This pastor] just told him he was demonically possessed. He did all sorts of rituals on Gary, and eventually Gary ended up thinking he was the anti-Christ.”
A network of support
Thomas hasn’t been psychotic since he arrived at Care Haven almost two years ago. He experienced one manic episode but he was able to get help quickly.
“I recognise it now and I am very careful. Fortunately, they [Care Haven] had two of the injections that they normally give me and I was only manic for about two to three days.”
Care Haven residents have weekly therapy — a luxury often not found in the public sector.
“With Grant [the resident psychologist], we have our therapy session once a week where he monitors me and we discuss how things are going, so [when I became manic] it was only once,” Thomas says.
Care Haven’s staff liaises with private and public facilities in the area to ensure that patients see psychiatrists at least twice a year to have their scripts reissued as is law and that other conditions such as high blood pressure and diabetes are controlled.
When Thomas isn’t leading his prayer group, he sits with Neil*, a recent arrival at Care Haven. The two work in the room near the top of the old wooden stairs just opposite the sewing room overlooking the sea. Thomas writes his book — a Christian take on living with bipolar — and Neil sketches scenes out of surfing movies with surfers riding big waves alongside jet skies.
Neil had a rough time when he got to Care Haven and Thomas took him under his wing, introducing Neil to the bipolar support group that meets nearby. “He loves serving other people. It’s his passion,” says Niemand.
For Thomas, part of that has been about becoming part of a support system for other residents like Neil.
“He feels like he’s adding value. The worst thing you can do to a [person living with] bipolar is to devalue him. He’s a human being and he still has skills that can be useful to society,” Niemand says.
“Gary is like an evangelist. The evangelist takes a simple message of hope and takes that to people who are hopeless.”
*Not their real names