A high level national stakeholders meeting was held in Johannesburg, South Africa, on Monday 18 March. The meeting highlighted the constitutional imperative to address the need for palliative care for children, provided information on the national palliative care policy and set goals to achieve better provision of children’s palliative care across the country. Key stakeholders in children’s health and welfare in government and the NGO sector attended the meeting convened by the Children’s Task Team, a sub-group of the Minister of Health’s Steering Committee on Palliative Care, and PatchSA.
Speakers who addressed the meeting included KZN MEC for Health, Dr Sibongiseni Dhlomo, Dr Michelle Meiring, chair of the national children’s palliative care network – PatchSA, Huyaam Samuels, representing the voice of a person receiving palliative care, Mark Heywood, Executive Director of +Section27 an organisation seeking to achieve equality and social justice in South Africa and Dr Charmaine Blanchard.
Background to the meeting
In a press release sent out earlier, PatchSA provided background information to inform the context of the meeting.
More than a million children are dying from – or living with – incurable conditions, sometimes in great pain. The state has a duty to protect children from suffering, especially the hidden suffering of seriously ill children.
Although South Africa can boast a comprehensive palliative care policy, it has not yet been implemented. This means that very ill children are suffering unnecessarily with their families in great distress.
In May 2016, the Health Minister, Dr Aaron Motsoaledi, appointed a 12-member steering committee to develop a palliative care policy. The policy was approved by the National Health Council in April 2017 and by 2018, an implementation plan had been proposed. The strategic framework included :
- Specialist palliative care teams in all major tertiary hospitals and large district hospitals.
- Access to Palliative care beds in hospices, sub-acute facilities and some hospitals.
- The Essential Medicines List to include up-to-date palliative care medications and to make them available to all patients who need them.
- Palliative care training for all health-care officials, including doctors, nurses, allied health care practitioners, pharmacists, social workers and clergy.
A budget for the implementation of the plan was created but not approved or allocated. The goal of the meeting was to move things forward and explore how to implement the policy in an affordable and effective way.
“We have shown that palliative care is cost-effective,” says Dr Michelle Meiring, chairperson of PatchSA. “With the proper support, patients can be cared for at home and in the community. Proper palliative care improves patient’s quality of life, can decrease unnecessary readmissions and helps families cope. It can assist in avoiding costly futile treatment and also has positive spin offs for the health system in that it can improve health professionals capacity to cope and also has been shown to decrease litigation through improved communication.
“It has been shown internationally that the money saved through better palliative care and advanced care planning can be used to fund palliative care teams.”
Report back on the meeting
Busi Nkosi, who attended the meeting as a representative of ICPCN, reported that the welcoming remarks were made by Dr Dhlomo, the chairperson of the steering committee that developed the South African Palliative Care Policy Framework and Strategic Plan, followed by talks by Dr Michelle Meiring and Huyaam Samuels to introduce the purpose of the meeting.
She writes “it was an honour to have Mark Heywood present on Children’s Palliative Care – The Constitutional Imperative as he was one of the leading activists of the Treatment Action Campaign (TAC) that made ART available in South Africa by taking the government to court. He is such an eloquent speaker and does not mince his words.”
In his address Mark Heywood expressed the opinion that the department of health has no reason not to budget for children’s palliative care, is obliged to do so by Section 28 of the SA Constitution and can be taken to court for violating this provision. He reiterated this by saying, ‘Palliative care must be embedded as part of all care but not watered down. Collaboration is essential. Accountability is built into our constitution, we may demand it. We are not begging for palliative care for children. We are asserting its importance.’
Panel discussion
After lunch a riveting panel discussion was facilitated by Joan Marston. Presenters on the panel included Kelly du Plessis, founder of Rare Diseases SA and Melissa Platt – both parents of children who have received palliative care, pharmacists, officials from the Department of Health, (DoH), the registrar of the South African Medical and Allied Health Council, registrar of the Council for Social Workers, the commissioners for Human Rights and Sandhya Singh, Chief Director of the Non Communicative Diseases.
In summary
In providing a summary of the meeting Mark Heywood made the following important points, amongst others:
- Children’s palliative care is a priority for the country
- Resolutions should be taken beyond the meeting
- Palliative care should be embedded in the mainstream health care system
- There are areas of specialisation and should be linked to equity
- Collaboration is essential
- Palliative is a human right and must be provided by government
- There is no excuse not to have a budget for it
- Palliative care should be integrated into both the public and private sector
- Listen to the voices of the children
Specific considerations going forward should include:
- Extending the child dependency grant to 3 months after the death of the child
- Extending the present disability grant to children with life-limiting illnesses
- Palliative care should be integrated into basic health training
- Make use of the Human Rights Commission
- Develop a palliative care ‘think tank’ that will deliver accordingly
More information on the meeting will be made available on the PatchSA website in due course.
