For children diagnosed with serious life-threatening and life-limiting illness in South Africa their families are usually shocked to discover there are so few services available to help them cope. In 2014 South Africa was co-sponsor of a World Health Assembly Resolution calling on all member states to include palliative care within their health systems, including paediatric palliative care. In 2017 South Africa’s first national policy on palliative care was passed by the National Health Council but the implementation of the policy has stalled, due to a lack of funding.
The Minister of Health appointed a Steering Committee to guide the Department of Health to implement the policy and on 18 March 2019 a subgroup of this Committee called a meeting to consider how to move forward on the stalled policy, particularly for children.
This meeting was co-hosted by PatchSA (the SA Children’s palliative care network) and the Department of Health and opened by the Chair of the Minister’s Steering Committee, the MEC for Health KZN Dr Dhlomo. The MEC said that little attention had been paid before to children and that we needed to start focusing on children from today. The MEC told of a patient who had died without pain thanks to palliative care. He felt the aim is to make sure that this is not for the few, but for all of us.
The veteran health rights campaigner, Mark Heywood addressed the meeting and pointed out that the current situation is unlawful. The Constitution requires the government to implement the national policy so children have palliative care as part of basic health services. Section 28 of the Constitution aligns with international human rights holding that children’s rights are of paramount importance. Mark explained there is a duty on government to implement the policy immediately to protect children from harm and government may not incrementally implement the policy over time according to available resources. Currently without implementation, children across the country do not receive palliative care. It is estimated that more than 1 million children are likely to be in need of palliative care although there is little data on the problem.
In addition, many parents living in poverty, give up work to look after seriously ill children. At the meeting the tragic story of a small child was shared, who was terrified to die, knowing that if he did, the Care Dependency Grant, the only income of their family, would stop. At the meeting it was recommended the Department of Social Development extend the Care Dependency Grant by three months into the bereavement period to support grieving parents as they attempt to return to work. It was also heard that children who are temporarily disabled due to treatable malignancies (needing 2 – 3 years of treatment), do not qualify for the Care Dependency Grant despite their serious illness. This grant is only currently available for children who are permanently disabled.
South African Human Rights Commissioner (SAHRC) for Children, Angie Makwetla addressed the meeting and would like to see the next government centralise children’s rights and return the Office on the Rights of the Child to the Presidency. The SAHRC role is to support democracy and hold the state accountable. Angie said there is a lot of work to be done and none of us can achieve it single-handedly. She invited the children’s palliative care community to approach her for assistance.
The meeting heard that the Essential Medicines List used by doctors in public health care facilities to prescribe medicines, does not include suitable medicines for neuropathic pain in children. The meeting recommended that neuropathic pain in children be recognised, and that suitable medicines to address this suffering be included in the list as recommended by expert opinion.
Delegates attending the meeting committed to support a Declaration calling on government to remember the ICPCN Declaration of Cape Town of 2009 and to :
- take immediate steps to realise the new policy including leveraging funding for paediatric palliative care,
- establish eight key regional posts in the public sector,
- distribute the paediatric palliative care guidelines, and
- monitor the ordering of morphine nationally.
For further information please email Nicky GunnClark at firstname.lastname@example.org or contact her on 082 898 8561