You are asked to sign a declaration made by PatchSA (the SA children’s palliative care network), calling for palliative care for every child with a life-threatening or life-limiting illness in South Africa.
The declaration originated at a High Level National Stakeholder Meeting for children with serious illnesses held near Johannesburg earlier this year and articulates the need for children’s palliative care (CPC) to be recognised and for palliative care services for children to be implemented across the country.
Estimating the need
It is estimated that more than a million children in South Africa need palliative care, however, families of these children soon discover there are very few services available to help them. This, despite South Africa being a co-sponsor of the World Health Assembly Resolution calling on all member states to include palliative care within their health systems, including paediatric palliative care in 2014.
In 2017 South Africa’s first national policy on palliative care was passed by the National Health Council and the Minister of Health appointed a Steering Committee to guide the Department of Health to implement the policy but the implementation of the policy has stalled due to a lack of funding.
CPC should be part of basic health services
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. The meeting was co-hosted by PatchSA and the national Department of Health.
Addressing the meeting, veteran health rights campaigner, Mark Heywood, called the current situation in South Africa “unlawful” explaining that the South African constitution requires the government to implement the national policy so children have palliative care as part of basic health services.
Heywood described how Section 28 of the Constitution aligns with international human rights, holding that children’s rights are of paramount importance, stating “there is a duty on government to implement the policy immediately to protect children from harm.” He insisted the government may not incrementally implement the policy over time according to available resources.
Currently, without implementation of the policy, hundreds of thousands of children across the country do not receive the palliative care to which they are entitled.
The additional burden of poverty
In addition, many South African parents living in poverty have to give up work to look after their seriously ill children. A tragic story was shared at the meeting of a small child terrified to die, knowing that if he did, the Care Dependency Grant, the only income for their family, would stop. Recommendations that 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 were tabled.
No neuropathic pain medicines for children on the Essentials Medicines List
The South African Essential Medicines List used by doctors in public health care facilities to prescribe medicines, does not include suitable medicines for neuropathic pain in children. As a result an additional recommendation was agreed that neuropathic pain in children be recognised, and that suitable medicines to address this suffering be included in this list.
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.