In the past few weeks, with the world’s attention on the case of baby Charlie Gard, the importance of children’s palliative care and hospice care has been highlighted.
PatchSA (Palliative Treatment for Children South Africa) www.patchsa.org is the South African national network dedicated to advancing access to children’s palliative care throughout the country through advocacy, education, research and mentorship. PatchSA is an organisation that works together with family members, health care workers and communities to promote the rights of children to access hospice and palliative care
The aim of palliative care for children (which includes infants, children and young people), is to relieve suffering, improve quality of life – and provide support for their families into the bereavement period. It often includes, but is not limited to, care at the end of the child’s life where the aim is to ensure a peaceful, pain-free death. however often in the case of life limiting illnesseses, the course and outcome of the disease is difficult to project and as such the palliative team is there to walk the journey alongside the family, however long or short that may be. For maximum support, palliative care should be provided from the point of recognition of any serious illness, since an actual diagnosis can often take months, sometimes even years.
Palliative care can happen in the child’s own home, hospital or hospice. For maximum support palliative care should be provided from the time of diagnosis of any serious illness.
South Africa both advocated for and signed the World Health Assembly Resolution 67:19 May 2014 calling for governments to integrate palliative care into health systems. On the 6 April, 2017, the national policy for Palliative Care which included children was approved for adoption by the SA National Health Council. The adoption of this policy means a commitment to integrate palliative care into public health care. It includes for example, government support of hospices and the creation of palliative care teams and centres of excellence in hospitals and the training of healthcare professionals across South Africa.
According to research carried out by UNICEF and the International Children’s Palliative Care Network, in South Africa there are over 800 000 babies, children and young people with serious illnesses and life-limiting conditions who would benefit from palliative care and access to a children’s hospice, yet less than 5% are receiving it through a small number of hospital-based and children’s hospice programmes, mainly in Durban, Cape Town, Bloemfontein and Johannesburg.
To ensure that the goals of palliative care are reached – pain & symptom control, psychosocial & spiritual support and bereavement support – government, civil society, health care providers, families and community members must work together to protect the rights of children to live as well as possible despite a life-limiting condition.
By joining or supporting PatchSA you can help these over 800 000 children in South Africa achieve their best possible quality of life and support those caring for them.
Contact: Fiona McLennan PatchSA Information Officer