Jakarta, capital of Indonesia, is South-East Asia’s largest city with a population approaching 12 million. In 2011 as many as 5,555 women and babies were identified to be living with HIV and AIDS in the city. Stigma and lack of knowledge means that at present only 5 to 10 % of people living with HIV are being diagnosed. To encourage people to be tested and treated, the Jakarta Health Authority has launched a free service for all medical care related to HIV and AIDS for residents of Jakarta in community health centres and hospitals.
However, according to the International Children’s Palliative Care Network Facebook posting Joan was shocked to find HIV positive children dying in pain. She said that it reminded her of the dark days in South Africa before the roll out of anti retroviral therapy.
At present Rachel House children’s hospice is the only home care programme providing palliative care for children with cancer and advanced HIV. Rachel House children’s hospice has been providing care at home to children nearing the end of life, with both cancer and HIV, for three years. Five nurses, cover the four regions of Jakarta caring for very sick children and supporting their families, with compassion and expertise.
During her visit Joan spoke at the inaugural meeting of a network of organisations caring for children with HIV, arranged by Rachel House and reports that presentations on the need for palliative care for children with HIV elicited very positive responses from those attending. Further presentations at the RSUD Tarakan Public Hospital in West Jakarta, the RSPI Sulianti Saroso National Infectious Diseases Hospital, and the Clinical Research Meeting of the Indonesian Association of Physicians in AIDS Care provided an opportunity to stimulate interest in palliative care for children, as well as in the community care model of Rachel House.