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Editorial
The angels of mercy are mostly unpaid and female. They live in townships like Daveyton or Mamelodi, small towns like Mzinoni and in rural areas like Tugela Ferry. The vast majority is religious, deriving sustenance from their God as they clean and care for people who are certain to die.
These are the home-based care volunteers some of whom are paid a little stipend or get some money for travel costs alone. Others volunteer out of a desire to help, and get no material rewards for their efforts. Day in and day out, they watch over people dying, mainly of AIDS-related diseases. The very old and the disabled also benefit from their care, as most home-based care (HBC) organisations want to protect their patients from the stigma of AIDS, so have expanded their services.
Many HBC initiatives were started by church organisations or concerned individuals, particularly retired nurses. Responding to a growing need, they often expanded way beyond their capabilities. However, getting access to additional resources both financial and human has often proven difficult. This is particularly the case when HBC organisations try to access government resources. Not only are funds scarce and take a long time to reach the projects, but the accounting mechanisms required by the bureaucracy are sometimes far too onerous for volunteer-run organisations. In some provinces, relations between HBC organisations and government are good. Gautengs HIV/AIDS directorate has a fulltime staff member devoted to liasing with HBC organisations. While HBC organisations get limited financial support from Gauteng, they are offered organisational training and can go to the directorate for advice.
However, the picture is vastly different in Mpumalanga, where last year the Health MEC, Sibongile Manana, closed down the Mpumalanga Project Support Association, an umbrella organisation consisting of 28 community home-based and orphan care projects, as well as a number of community-based peer education projects.
Mananas actions apparently stemmed from a fall-out she had with a senior member of her staff who was involved in the association, and indicates the tenuous nature of non-governmental organisations (NGOs) relations with government.
As yet, there are no national guidelines for provinces on how to deal with HBC, or how to work with existing organisations. However, there is widespread official support for step-down facilities that ensure that terminally ill people are taken out of hospitals and cared for in their homes. Research undertaken by both the SA Red Cross and South Coast Hospice indicates that HBC is substantially cheaper than hospital care. Not only does it save hospitals money, but it also frees beds for patients who can be cured. It can also be better for terminal patients, who have a supportive home environment, as when they die they are surrounded by family and friends. However, if state health facilities are simply going to discharge AIDS patients and assume that they will be cared for at home, HBC will simply be a brutal form of privatisation where the poorest communities are expected to bear the greatest burden of the epidemic.
If HBC organisations are going to do the work of hospitals, but at a cheaper rate, some state money needs to be diverted to the HBC organisations. Dr Nono Simelela, head of governments HIV/AIDS directorate, says that as many South Africans are already HIV positive, governments campaign is shifting to care and support strategies for those infected.
Finally, government is paying serious attention to HBC. At a meeting between the health minister and provincial MECs (MinMEC) in January, the only item on the agenda was home-based care. A follow-up MinMEC in February also discussed HBC, which the department believes can save it millions of rands. Health department spokesperson Jo-Anne Collinge says an integrated plan on how provincial health and social development (formerly welfare) departments should approach HBC will be released very soon. Collinge added that the plan would include different models and options, as we need to acknowledge the different conditions in the provinces. In some cases, the local authorities will also be drawn in to build HBC.
At a joint health and social development MinMEC meeting last year, provinces were presented with five different models of care, ranging from exclusively government-run organisations, to community based care centres and hospices. The subsequent MinMECs have further refined these and provinces are currently discussing what would work best in the different contexts. From discussions with a range of home-based care volunteers, a basic wish list emerges.
- Volunteers need to get some material compensation for their efforts.
- Volunteers need proper training. They are responsible for training family members to care for terminally ill patients so need to be well prepared to handle a range of medical problems as well as psychological challenges such as bereavement counselling In some cases, government departments offer a mere five days training. However, Sinosizo, a Catholic HBC organisation in KwaZulu-Natal, has ongoing training for its members over six months. Mamelodi-based Tateni in Gauteng is in the process of increasing its volunteer training to a year.
- HBC works best when combined with support groups and counselling for people with HIV (not AIDS) and their families, so that HIV positive people do not see the disease as an instant death threat, but are encouraged to live healthily and responsibly.
- There needs to be a good relationship between the local health facilities and HBC organisations. If this exists, people with HIV/AIDS can be referred to the HBC structure by the health authorities and have access to their support and care services early on in the disease. In addition, the health facilities can supply the HBC volunteers with latex gloves, basic medical supplies (including morphine) and offer them expert advice.
- Volunteers need regular debriefings as the work that they do is draining and can be very depressing.
Given the stretched resources of both the health and social development departments, ensuring that communities are involved in HBC and not simply dumped with all the responsibility, is going to be difficult. National government has an important role to play in monitoring the relationship between different levels of government and communities involved in HBC, as well as ensuring that certain basic standards of care are met throughout the country. |
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