Children’s Palliative Care is in crisis. Today, the 8th October, is HatsOn4CPC (children’s palliative care) day. It is an awareness day with the theme #LeaveNoOneBehind. While even adults are being left behind, especially in rural and impoverished areas, the plight of children living with serious illness is desperate.
In her recent article in the Daily Maverick, Dr Julia Ambler, clinical director of Umduduzi Children’s Hospice explains that there is only one single, official palliative care post in the whole South Africa while an estimated 1 million children qualify for this additional layer of medical support. There are many barriers to access palliative care, but the overarching problem is one of money.
“One could not imagine a cardiothoracic surgeon having to delay an important operation because she had to attend a funding meeting or create a social media campaign to secure her income through charitable donations.”
Doctors like Dr Julia Ambler and Dr Michelle Meiring (Chairperson of PatchSA, Palliative for Children South Africa) have worked tirelessly to advocate for children’s palliative care. At the same time they are offering clinical services, training other healthcare professionals and fundraising for their own salaries. This is immoral, unsustainable and at some point people will lose steam. As Dr Ambler notes in the article: “One could not imagine a cardiothoracic surgeon having to delay an important operation because she had to attend a funding meeting or create a social media campaign to secure her income through charitable donations.”
Palliative Care is an essential service, a human right, part of Universal Health Care and a recognized medical speciality in many parts of the world. South Africa has an existing National Policy Framework and Strategy, which was signed off in 2017. To date very little has been done to put action to this policy. Certainly no funding has been allocated by the government.
In the same vein, few medical schemes offer comprehensive Palliative Care benefits to children, and when they do the rates reflect neither the time spent nor expertise offered by Palliative Care teams to patients.
The problem for Palliative Care providers is that they have very little leverage, because they do the work anyway. It is meaningful work and practitioners are drawn to it the same way they were probably drawn to medicine in the first place. If someone in need calls and you have the skills to assist, how does one say no? However, few practitioners are prepared to, or can afford to work for so little reimbursement or none at all. Then there are many other more viable, even lucrative, options in medicine.
Without funding (not donor funding) the field of Paediatric Palliative Medicine will never grow and there will be fewer providers to offer services to a growing number of children living with serious illness. Paediatric Palliative Care services are in crisis.