On World Hospice and Palliative Care Day, South Africans face the stark reality that fewer than five children have access to palliative care.
Johannesburg, South Africa (08 October 2021) – An estimated one million South African children have a diagnosed illness or condition requiring palliative care, yet this essential aspect of healthcare for neonates, babies, children and adolescents reaches fewer than five of them.
World Hospice and Palliative Care Day is an annual unified day of action to celebrate and support hospice and palliative care around the world. One of the greatest needs in this sector is assisting young children, particularly in the time of COVID-19.
While there are gaps in this area in South Africa, more healthcare workers are being trained to deliver much-needed care.
Palliative care from birth to death – a basic human right
The National Policy Framework and Strategy on Palliative Care 2017-2022 says that palliative care should be available to all patients as needed from birth until death at all levels of healthcare service. In short, everyone should have access to palliative care in South Africa and the Discovery Fund supports organisations in line with this national imperative.
“The Discovery Fund – an arm of Discovery CSI – supports the need for palliative care by primarily targeted at strengthening the delivery of quality health services through human capital and skills development,” says Ruth Lewin, Discovery’s Head of Corporate Sustainability.
“There is an urgent need to train healthcare professionals across the country to integrate a holistic paediatric palliative care approach into the public healthcare sector to improve the quality of life of all neonates, babies and children suffering from complex chronic, life-threatening and life-limiting illnesses so that unnecessary suffering is avoided, and families are better supported,” Ruth explains.
“Our approach is to fund the training of healthcare workers in palliative care through the national body of the Hospice Palliative Care Association (HPCA) and Palliative Treatment for Children South Africa (PatchSA),” she says, “and to expand the reach of palliative care resources across the country.”
Discovery and PatchSA release a book on palliative care
In May 2017, PatchSA partnered with the Discovery Fund to publish the Bettercare© book, Palliative Care for Children: A Guide for Improving the Quality of Life of Patients and their Families – a first of its kind in South Africa.
“Our vision is to make sure every child in South Africa has access quality palliative care,” says Sue Boucher, PatchSA’s Project Manager. “The book was written by a team of local experts, then used as a resource to develop one-day, three-day and five-day face-to-face training courses on children’s palliative care.”
“The plan was to roll out these courses around the country. But with the arrival of COVID-19 and the national lockdown, the remainder of 2020 proved to be a challenging year, particularly for organisations providing palliative care services to children.”
Face-to-face training was impossible. But, as Boucher explains, “It gave us the opportunity to find a more innovative and relevant way to provide accessible distance learning in children’s palliative care.”
Patch Academy makes its mark
This led to the development of Patch Academy, an online learning platform offering self-directed study courses in key elements of children’s palliative care.
Patch Academy was officially launched on 15 February 2021. To date, hundreds of volunteers, healthcare workers and allied professionals have accessed these courses. The academy also developed a course called Supporting Grieving Children in the Time of COVID-19 in response to the effects of loss during the pandemic.
“Patch Academy has been so well received and all our courses have been accredited for continuing professional development (CPD) points by the Colleges of Medicine of South Africa,” Boucher says.
“Thanks to the Discovery Fund, the work and practice of healthcare providers, counsellors, psychologists, social workers, spiritual leaders and teachers has been enhanced and empowered by their interaction with our training – through the Bettercare© book, webinars and online learning,” she adds. “And they in turn touch and improve the lives of thousands of children.”
Dr Julia Ambler, a tenured lecturer at the University of KwaZulu-Natal and co-author of Palliative Care for Children, has made it a requirement for all fourth-year medical students at this institution to complete the Patch Academy course titled Introducing Children’s Palliative Care.
Expanding the reach of palliative care resources
With continued funding from the Discovery Fund, they are planning more courses and the publishing of another Bettercare© book, Boucher explained to Good Things Guy.
“We’ll also be developing a nine-month accredited blended learning course on children’s palliative care in 2022, which will include a two-week practical placement at a PatchSA partner site in each of the nine provinces of South Africa.”
“I’m really inspired by the positive messages from the recipients of training, including those at Knysna Sedgefield Hospice,” she adds. “They wrote: ‘Together with the training you did in March, this little book, Palliative Care for Children, has been really helpful. To date, the two books we purchased have not been in our library, they are permanently with the nurses. Thank you for this gem.’”
“We are incredibly grateful to Discovery for this opportunity and believe that we are creating a product that will be a gamechanger for accessible education in children’s palliative care in South Africa,” Sue concludes.