Increased access to paediatric palliative care services for children and teenagers in the rural communities of Luri County – Jubek state, South Sudan.
The project is much needed basing on the fact that about 80% of children in Africa die at home without seeing a health worker. Each year there are approximately 166,000 children diagnosed of worldwide, 84% are from developing world. Each year there are at least 80,000 deaths from cancer in children, while HIV/AIDS is responsible for 332,000 child deaths in Africa. Our experience in implementing Paediatric Palliative Care in South Sudan has indicated that there is immense need for these services in many states of the country that we are currently not able to reach. Almost 80% of the patients enrolled on Women Relief Organisation health programme are poor with low income levels and poor living conditions thus, can’t afford or access quality Palliative Care due to persistent and continued civil wars.
With such economic impoverishment patients’ most patients report late for investigation due to lack of funds for medical treatment and cannot afford transport to referral health centers or food while in referral hospitals and other health centres, their children miss attending schools. With the ending 1 year funding from Medair South Sudan, Women Relief Organisation under the Paediatric Palliative Care project, 550 children in and around Jubek state have receive treatment for HIV/AIDs and/or cancer and as a result have had their lives extended. In addition their parents no longer need to spend scarce resources on herbalists and witchdoctors. 20 health workers have been trained in good practice in palliative care for children. This is has been the first service of its kind specifically for children in Jubek state and probably South Sudan. The APCA project is coming to an end this year and as a result, there is urgent need to continue this project of Paediatric Palliative Care with people at the fore front of demanding their government for increased services in palliative care services to all in need.
Program Coordinator, Women Relief Organisation