The government is determined to release most mentally ill patients from the institutions where they are confined and to return them to society, but it has not allocated the resources to ensure they are adequately cared for in their new homes.
Many are bound to end up on the streets, homeless, without treatment or care, committing violent crimes or being violated themselves.
South Africa’s first mental asylum was established on Robben Island in 1846, when “lunatics — shouting, deluded and morose”, were shipped in from jails on the mainland.
Over the years many more of these institutions were established, typically large grey buildings separated from residential communities by walls, derelict neighbourhoods and distance. Patients were often warehoused 50 or 60 to a dormitory, medicated into submission and strapped into straightjackets when they stepped out of line.
“People with mental illnesses were historically put into asylums for two reasons: firstly because of prejudice, and secondly because during the 18th and 19th centuries, when asylums came into place, there was no effective medicine to treat these people,” says Ray Lazarus, project manager for chronic mental health care at the Gauteng provincial health department. “The intentions were good. Rather than having people thrown out on the streets or being abused, this was the best way of managing them and putting them in a safe place.
“Today we have medication that can control the symptoms. If they take the medication and they have support from their family and the community, they can lead a relatively normal life,” she says.
“In other parts of the world there has been a process of deinstitutionalisation, but because inadequate preparation had been made, these patients landed up in the streets.”
Since the 1950s advocates of deinstitutionalisation have sold the concept as a recognition of patients’ rights and as a cost-cutting strategy. But the realisation of patients’ rights has a spotty record everywhere deinstitutionalisation has been tried; cutting costs has been more successful.
Sebolelo Seape, principal psychologist at Sterkfontein hospital outside Johannesburg, says that deinstitutionalisation will cause problems if the proper resources aren’t put in place.
Stefy Bove, senior counsellor for the Schizophrenia Foundation in Johannesburg, says most deinstitutionalised patients would do fine if they kept taking their medicines. Patients who stop taking their medicines usually relapse, which sets off a chain of events that leaves many on the streets, where they become victims or perpetrators of violent crimes.
Lazarus says the government has tried to avoid repeating what happened in many parts of the world, but she says it lacks the resources to make the transformation a total success.
Discharged patients should see a psychiatric nurse once a month with whom they can discuss problems. Some have been in asylums for so long they don’t have the identity documents they need to apply for disability grants.
Nurses seldom have vehicles to visit these patients and to check how they are taking their medicine, as well as how they are doing in the community. Lazarus says there are no resources for staff to visit patients’ homes regularly.
“We’ve totally done away with home visits because we don’t have transport,” says Primrose Bonkolo, a psychiatric nurse at Zola clinic in Soweto.
The staff of two doctors, two registered nurses and one nursing assistant at Zola attend more than 1 000 mentally ill patients every month.
Solly Mokgata, national director for the South African Federation of Mental Health, says he’s all for deinstitutionalisation, but concedes that out-patients face health-care neglect after they’ve left asylums and hospitals.
“The idea is that mental illness can be helped. People who are sick can be well again and can be put back into society. But mechanisms need to be put in place to ensure that the care given at the institutions follows them home. This is not happening,” he says.
Central Johannesburg is filled with homeless people who have come to the city to find a better life. Medical personnel estimate that already 10% of street people are mentally ill. Many more are bound to land up on the streets without the care and treatment they need when deinstitutionalised.
Anna Makhamba (53) lives in Newtown, part of central Johannesburg now being gentrified. She came to the city to find a job so she could feed her 34-year-old mentally ill son Xolani. While she is away collecting cardboard boxes, plastic and anything else she can sell, her seven-year-old nephew Senalo looks after Xolani in a shack in Dobsonville, Soweto. Senalo doesn’t go to school because his aunt can’t afford to pay the fees. She returns to the shack on Fridays to ensure they have food for the week.
“I have to stay here [in Newtown] so that I can feed the kids. My son has been hospitalised at Baragwanath hospital in Soweto a number of times. They give him medicine, but he stops taking it and then has relapses.”
Xolani was first hospitalised six years ago. “He spent three years in hospital and when he came back he was fine. After some time he stopped taking his medicine and became sick again,” Makhamba says.
Lerato Mothibe* is a bi-polar manic depressive. She lives with her family in Protea, a privileged suburb of Soweto, went to a private school and received a tertiary education.
Mothibe had her first episode of depression when she was 15 after she failed an exam. She was sent to Baragwanath hospital for three months.
“I basically just sat around doing nothing. You just eat, sleep and take your medication,” she says.
When she was discharged, Mothibe says nobody bothered to explain her condition. She was just told she had been mad. She thought she was cured, but suffered a relapse six years later.
Mothibe was taken to the up-market Milpark hospital in Johannesburg and admitted to the psychiatric ward.
“That’s when I found out that I had manic depression. That place was nice. I could go swimming and they made you do all kinds of things to keep you busy. I was given anti-depressants and I was doing well. I was discharged after two weeks,” she says.
Two weeks later she had a another relapse. Mothibe tried to get readmitted to Milpark, but was told she had exhausted her medical aid funds. So she went to Johannesburg General hospital, where she was referred to a specialised hospital.
“I was put on a waiting list for Tara [a mental hospital in Johannesburg] and after six weeks I was admitted,” she says. “That place is humongous. There are trees and little mountains there. It’s very peaceful; it’s a place where you can relax far away from the madness of Johannesburg.
“There are doctors and nurses who look after you. Everybody there is concerned about your well-being. They are able to identify signs of depression very early on,” she says.
“They train you to look after yourself. They tell you that you are normal and that you just have an imbalance that other people don’t have and you just need to take care of it. They tell you to treat medication as part of your meal every day and they monitor you and teach you about your mental disability,” Mothibe says.
After being discharged, Mothibe heard she had been fired because of her illness.
She says she’s now doing well and that she learnt much about her disease at Tara. Now she recognises the symptoms of a relapse and readmits herself to hospital if she suspects an episode coming on.
She makes sure she takes her medicine every day and goes for a checkup once a month.
* Not her real name