22 January 2022

Reports in the Mail & Guardian & Daily Maverick highlight lack of progress in providing palliative care to children in South Africa and appropriate support to their families

Journalist Chris Bateman has written two excellent reports on the devastating consequences of inaction by our health authorities to prioritize pallaitive care for children.

The articles describes how South African children with life-limiting diseases and debilitating conditions are poorly catered for, too often enduring insufficient, impersonal and inappropriate state care, forcing non-government organizations (NGOs) to step in with specialist and home care, and also providing distressed families with support. They also raise the issue of possible legal action to be taken to

Stumbling blocks

According to the article: “Two of the country’s top paediatricians and government advisers on child health, Professor Neil McKerrow, head of paediatrics and child health for KwaZulu-Natal, and Professor Haroon Saloojee, head of the division of community paediatrics at the University of the Witwatersrand, agreed that there are several long-standing stumbling blocks.”

Our chair, Dr Michelle Meiring says in the article: “Children die, usually without any form of palliative support and so suffer unnecessary pain and discomfort. Parents are left to grieve and get on with their lives, also unsupported. Nobody really complains. There’s a lot of emotive lip-service, but no real implementation.”

Read the Mail & Guardian article here: https://bit.ly/3tDm2Ov

The report featured in the Daily Maverick on 20 January quotes our Vice Chair, Joan Marston, who says: “We do everything to ensure that babies are born healthy and kept that way — but we leave their dying to churches and NGOs. Thousands are dying in unnecessary pain and are not being reached.”

Nothing has been done

In the same article, Mark Heywood, founder of Treatment Action Campaign, Section 27 and editor of Maverick Citizen states: “Here you have a palliative care policy passed by the health department and all stakeholders in 2017 — for which nothing has been done. Numerous attempts by the NGO community to engage with the department, the Human Rights Commission and provincial health departments have come to nothing.”

He goes on to say, “This case is begging to be brought to a court and, if necessary, ultimately to the Constitutional Court. It’s over-ripe and has unassailable legal merit. Government has a duty to provide quality palliative care to children and to create the healthcare systems to do this.”

Both reports call for ‘ring-fenced’ funding from the government for children’s palliative care which should not be seen as an ‘optional extra’ but as essential as any other health services.

Read the Daily Maverick report here: https://bit.ly/35r6QKr