Inspiration, innovation and integration: highlights from the third ICPCN conference on children's palliative care, 30 May to 2 June 2018, Durban, South Africa.

Julia Downing,Barbara Steel,Busi Nkosi,Alex Daniels,Julia Ambler,Lorna Sithole,Tracey Brand,Elizabeth Gwyther,Michelle Meiring,Sue Boucher,Zodwa Sithole

doi:10.3332/ecancer.2018.870

Abstract

The International Children’s Palliative Care Network (ICPCN) held its third international conference on children’s palliative care in Durban, South Africa, from May 30 2018 to 2 June 2018. The conference—inspiration, innovation and integration—brought together 250 participants from 41 countries and was held in conjunction with local partners—Umduduzi Hospice Care for Children, Palliative Treatment for Children South Africa (Patch SA) and the Hospice and Palliative Care Association of South Africa. It built on national and global developments in palliative care such as its inclusion in Universal health coverage (UHC), the Lancet Commission report on pain and palliative care and the sustainable development goals (SDGs), and aimed to raise the profile of children’s palliative care in KwaZulu-Natal (KZN) and nationally. Seven pre-conference workshops were held prior to the conference on topics such as pain and symptom management, children’s palliative care within a humanitarian crisis, perinatal palliative care, research, developing programmes, ethical issues and difficult conversations in children’s palliative care. Delegates were welcomed in true Durban style at the welcome reception hosted by the City of Durban and uShaka Marine World. The opening plenary included entertainment from the Open Air School and Hillcrest Primary School, and inspirational talks from the Member of the Executive Council (MEC) for Health, a representative of the World Health Organization (WHO), the Chief Executive of ICPCN and the Noble Peace Prize Nominee Dr MR Rajagopal from Pallium India. Plenary sessions were interspersed throughout the conference with 56 oral concurrent presentations and workshops, six ‘Meet the expert sessions’ 100 poster presentations and the South African Premier of the film ‘Hippocratic: 18 Experiments in gently shaking the world’. There was a great feeling of networking and learning throughout the conference, with the conference being well evaluated, and an increase in the level of presentations and research from previous conferences demonstrating the steps that are being taken in children’s palliative care globally.

Highlights

The International Children’s Palliative Care Network (ICPCN) held its third international conference on children’s palliative care in Durban, South Africa
Universal health coverage (UHC) cuts across all of the health-related sustainable development goals (SDGs) and brings the hope of better health and protection for the world’s poorest’ [3]. This emphasis on UHC is important for the ongoing development and implementation of children’s palliative care, and was the theme for the 2017 World Hospice and Palliative Care Day—‘UHC and Palliative Care—Don’t leave those suffering behind’ [5] which saw the launch of the Lancet Commission report ‘Alleviating the access abyss in palliative care and pain relief—an imperative of UHC: the Lancet Commission report’ [6]
It was good to see that the standard of the research presented, abstracts and papers was much higher than on previous occasions

Summary

Introduction

The International Children’s Palliative Care Network (ICPCN) held its third international conference on children’s palliative care in Durban, South Africa. Two other plenary sessions were held throughout the day—before lunch Kelly du Plessis, Founder of Rare Diseases South Africa, shared her experiences of being a mother of a child with Pompe disease, and the importance of integrating palliative care into the care of children with rare diseases She talked about the journey that she had been on in terms of accessing palliative care, and when is the right time to do this, and how the fact that we are moving forward in the field of caring for children with rare diseases, this does not mean that we need to avoid introducing palliative care as ‘palliative care is a way of dealing with a situation that increases/betters the standards of life of patients jointly with their families, through stopping of (suffering) and the alleviation of pain and discomfort’. One participant wrote: ‘I thought the level of presentations and research much improved on previous years, the research was more relevant and useful to practice, a very well balanced programme and range of topics, really well done’

Conclusion

Findings

12. UNIADS Country factsheets