“Panados? The ones I can buy at the store?” asks Fakazile Mhlamvu scornfully. “I was expecting something better than that!” Hearty laughter shakes her skinny body.

Mhlamvu’€™s head is covered with oozing sores caused by an infection called impetigo. Sister Francisca Dladla, a professional nurse with the South Coast Hospice, rubs Mhlamvu’€™s head with antiseptic cream.

“Now you are really making me ugly,” chides Mhlamvu.

“She is so brave and lively, that one,” says Dladla as we leave Mhlamvu’€™s homestead in southern KwaZulu-Natal. “She has been with us since 1997. Now that she is mostly bedridden we need to see her every week.”

Nomonde* is waiting for the hospice vehicle on the road. She extends her whitish tongue, and complains of pain down her throat. “Thrush,” diagnoses Dladla from the car window, while community caregiver Aggressia Maluleka notes down the woman’€™s details, dispenses a drug and, after asking after Nomonde’€™s children, includes a bottle of multivitamins.

Happiness* probably became infected with HIV when she was raped two years ago. Today the 17-year-old is breathless, her sweet, high-pitched voice laden with tears as she gasps out her problems: chest pain, stomach pain, general weakness.

Dladla is concerned by her condition, and gives the fragile, skeletal girl an injection for muscular pain. “If she doesn’€™t feel better tomorrow, she must go to hospital,” Dladla tells her mother. To get to the hospital, Happiness’€™s mother will have to carry her child to the local clinic some kilometres away, which will then arrange transport to Port Shepstone some 50km away.

Skin rashes, thrush, Kaposi’€™s Sarcoma (a skin cancer), diarrhoea, tuberculosis. Treating these opportunistic illnesses common to those with HIV, or simply easing people’€™s pain when they reach the end of their lives, is routine for hospice’€™s dedicated community care-givers.

They offer a high standard of care that clearly makes a difference to patients ‘€“ most of whom are unemployed, live far from health facilities and are battling with a multitude of illnesses that prey on depressed immune systems.

Lungeleni Mhlamvu, who lost her husband to AIDS last year, says she “looks forward” to visits from the carers. “They encourage me, and help me with the vitamins and sometimes food parcels.”

She and her children, Sibonelo (7) and Sikelela (3), are all HIV positive and the children are severely stunted from malnutrition.

“Some of the families are very lonely,” comments Dladla. “They get encouraged just by our presence.”

Sister Beauty Mtshaka, who works at the local Elim Clinic, says the hospice’€™s AIDS outreach programme “has really helped to remove the load from the clinic”.

“These patients need love and care. They are desperate for somebody to show respect for them. The big problem here is the malnutrition and HIV. We have no multivitamins to encourage a person. At least the hospice people can offer vitamins.”

Terry Gilpin, the superintendent of Murchison Hospital in Bhoboyi outside Port Shepstone, estimates that the hospice’€™s work has halved the hospitalisation of people with AIDS, resulting in significant savings for the state.

Over four million South Africans are living with HIV. For most, home-based care is the only way in which they are going to get any level of care when they get sick and die.

State hospitals are already overburdened. Patient care costs an average of R618 per day. Harsh though it may seem, in a country with limited resources it would be irresponsible to devote hospital beds to the terminally ill at the expense of those citizens who can recover.

But unless money is pumped into home-based care, it will become the cruellest form of privatisation ‘€“ where the burden of care for people with AIDS is transferred from the state to poor communities and untrained carers are at risk of becoming infected.

Government is already grappling with how to set up a huge network of care organisations that can support people with HIV, care for the sick and help orphans. But at present, everything is confined to discussion as different models are debated and costed and existing structures are audited.

“None of us should underestimate the challenges of getting a programme of community and home-based care off the ground,” Health Minister Manto Tshabalala Msimang told parliament recently. “Each care network is unique and complex and each needs strong co-ordination. We must find the means to generate hundreds of these networks in a very short time.”

According to a joint report by the Departments of Health and Social Development, the country will need 2 400 community home-based care teams to provide “full coverage of vulnerable communities” (based on the calculation of one team per needy community of 17 000 people).

By March next year, government wants 300 such teams in place nationally and 600 by March 2003.

The South Coast Hospice is highly regarded as a model home-based care organisation, and its experiences have been written up in a “best practices” booklet published by the Department of Health.

It’€™s success, says director Kath Defilippi, lies in three things:

• A core of highly skilled community caregivers, supervised by a doctor, professional nurses and a social worker, who are able to support some 80 community volunteers and ensure that care is of a high standard and the needs of children, particularly orphans, are addressed.
• Strong links with the Port Shepstone and Murchison hospitals and their associated clinics. This relationship is two-way: the health facilities refer patients to the hospice, and the hospice gets certain medical supplies from the hospitals.
• Strong networking with local organisations. The Networking Action Group meets twice a month, and brings together a range of bodies from the local council and government departments to traditional leaders, churches and income generating projects. Together, they identify vulnerable families and discuss how to alleviate their suffering.

But while some of the methods of the South Coast hospice can be replicated — particularly its rigorous training of carers — for many, the hospice offers the “Rolls Royce” model of care.

Last year, it spent R682 384 on its community care programme, which reached 960 patients (R710,82 per patient per year, still cheaper than two day’€™s hospitalisation). Major expenses are vehicles and salaries.

Dr Nono Simelela, head of government’€™s HIV/AIDS directorate, says that while the hospice model “is too expensive to be rolled out everywhere, that does not mean that we will not support hospice as an organisation.

“Ideally, we are looking for rural non-governmental organisations to work with communities to find carers and counsellors, train them and pay them and so on,” says Simelela.

Dr Helen Schneider from the Centre for Health Policy at Wits University says government has to accept that home-based care “is going to cost money”.

Home-based care projects that rely simply on unpaid volunteers and community goodwill are “unsustainable”, warns Schneider.

Simelela agrees, and says Cabinet has accepted that carers must be paid a stipend. It is now a question of setting the stipend and suggestions vary from R500 to R1000 a month.

This year, the departments of social development, health and education have a joint budget of about R250-million to address HIV/AIDS ‘€“ and getting home-based care established is a priority.

Provinces have been given a choice of five different home-based care models, says Simelela. All structures need to be able to support those with HIV to live healthily, treat opportunistic infections, provide end-of-life care and care for orphans.

Ideally, paid carers would manage a network of volunteers who could walk to the homes of those in need and train their families to deal with their daily care.

“I strongly believe that local government needs to be given a budget to drive home-based care. We cannot drive this from national,” says Simelela.

For Schneider, government’€™s best bet is a “middle-of-the road” type of structure that can both maintain a certain standard of care and allow local initiative.

“But if government is to go to scale, it will need to set up serious partnerships with big non-governmental organisations (NGOs) such as the Red Cross and Hospice, which can help to support community-based care organisations. And government has not been very good at these partnerships in the past,” adds Schneider.

Professor Leana Uys of the University of Natal’€™s School of Nursing also warns that government should be careful not to opt for something that looks cheap now but works out more expensive in the long term.

Uys gives the example of vehicles. According to her calculations, about 10 percent of AIDS patients will be inaccessible to home-based care organisations without vehicles. By 2010, if each of these out-of-reach patients spends a week in hospital it will be far more expensive than if vehicles to ensure care at home had been bought.

Heading a community-based care programme is not easy. As Dladla concedes, “We get very sad sometimes. More especially when somebody we have built a relationship with dies.”

Staff and volunteers need constant “debriefing” so that they are not overwhelmed by their sadness. They also need sound basic training in care and treatment. Skill is also needed to negotiate tricky dynamics that can develop between the paid and the volunteers.

South Coast’€™s Defilippi says her organisation is prepared to train, support and even help with the financial management of community care organisations. But to do this they need government funds, which have not been forthcoming this year. Neither has Lotto money.

“We strongly believe that terminally ill people need, and have the right, to the highest possible standard of quality care,” says Defilippi.

* Name changed at person’€™s request.