By Kathryn Strachan
The wind has picked up and blows the sand, swirling in patterns, across the dirt roads and barren yards of Madadeni township. It batters relentlessly against the walls of Joseph Gumede's* iron shack, rattling the windows, and he has to raise his voice to be heard above the din. But sheltered from the dust storm. Joseph feels that he has at last found his way home.
Joseph was one of the first patients to be sent home under South Africa's fledgling programme to move long-term psychiatric patients out of hospital and into the community. Madadeni Hospital, which lies in the bleak flat expanse outside the industrial town of Newcastle in the province of KwaZulu-Natal, was chosen as one of two pilot sites to test the policy of deinstitutionalisation.
This policy is in line with international standards of health and human rights and is required by recently-introduced health legislation in South Africa. But the lesson that comes through starkly from this experiment is that unless it is accompanied by upgrading community psychiatric services and close supervision, patients could fall between the cracks.
Joseph now lives with his wife and two daughters. He was eight years old when he first went into a psychiatric hospital, and was in and out countless times before being discharged under the new plan four years ago.
"I don't like staying in hospital because you are locked up and guarded. I want to be free to go where I like. Here at home I feel free. I like staying with my wife and daughters because we can laugh together, we can talk together. I can see that they love me and they can see that I love them," he says.
Since his discharge, he has stayed well, going to the clinic every month to collect treatment for the schizophrenia which burnt his life. "It's like your mind is a light, it dims and dims and then it is finished," he explains of the time when he was sick.
For Elizabeth Mkhize, the road home has been more difficult. There are two sets of wedding pictures on the wall of her home. The first is grainy black and white pictures taken in 1971 of a young couple, their wide eyes looking straight ahead. He is in a dark suit and she in a white wedding dress and tiara. The second set is of the same couple taken over 30 years later. This time, their faces are tired and their eyes look away from the lens, but the bride's dress is just as elaborate as before.
The first thing that Elizabeth did when she came out of hospital was to start planning for her wedding. She had married George in 1971 in a church ceremony when she was 20 and they had gone on to have five children, but as George had not finished paying lobola (bride price) they could not have a traditional wedding and so their marriage was never finalised. With Elizabeth out of hospital and the bridal dues paid, they could finally have their traditional wedding.
Elizabeth brings out the photograph album which records the day, with its slaughtered cow, the gathering of relatives, and the triple-tiered cake.
George visited her during all the years that she was in hospital, and now sits quietly by her side in their simple home, its mud floor covered with cowhides, as she tells her story. She tries to wipe the tears away with her shirt. She feels sad, she says, "because of all the things I do when I'm sick ... I feel I can't do anything for myself."
Her disability grant is not coming through and the family survives on only the milk from the single cow outside in the yard. She sits alone all day and would feel better, she says, if she had some wool to make traycloths. Concerns about how her family will survive keep her awake at night.
These signs of relapse were picked up by community nurses who visited the previous month, and Elizabeth was to go to the hospital so that her medication could be altered. She has not gone, she says, because she never had the energy to wash her clothes and couldn't go to the hospital in dirty clothes.
Initially patients who were released joined projects run by three community organisations, but these have fallen away and most of the patients are left at home with nothing to do. Shifting responsibility for care to the family and community often places the patient back in the context that contributed to their breakdown in the first place, and if patients are not supported in the community they could be left vulnerable to abuse and neglect.
If Abigail Zulu could choose, she would go back to hospital -- she cannot because she has a son to take care of and has to stay outside for his sake. Abigail's difficult life is etched on her face, she looks broken and lost.
She has been in and out of hospital seven times. Her 18 year old son Sipho was also admitted earlier this year, and the two of them stay in a house with her brother, who is also on psychiatric medication. Her brother uses his disability grant to buy drugs and the house has become a centre for the bad element in the neighbourhood. If staying well outside the hospital gates depends in part on a stable living environment, this house could not be worse.
Melvin Freeman, a consultant to the World Health Organisation who led the initiative to get the deinstitutionalisation process underway, says it was not just about getting patients out of hospital, but of building up community-based care at the same time.
"They are still in the healthcare system. There still has to be medical care and treatment, but it now has to include the element of social care," he said.