The International Children’s Palliative Care Network (ICPCN)’s 3rd bi-annual conference came to a successful end on Saturday 2 June. The conference, held in partnership with local organisations Umduduzi Hospice Care for Children, PatchSA (Palliative Treatment for Children in South Africa) and the Hospice Palliative Care Association of South Africa (HPCA) and themed ‘Inspiration, Innovation, Integration,’ magnificently fulfilled its promise of providing a platform to learn, share and network for all those working with and caring for children with life-limiting or life-threatening conditions across the globe.
With delegates representing 43 countries, at the close of the conference one international delegate wrote “Never before have I felt so much at home at a conference. Never before have I been surrounded by so many brilliant, kind, compassionate, unassuming and warm souls all at once. People who refuse to take no for an answer, for whom no wall is too high, no boundary impervious, no child less important than the others. People who insist on looking for the humanity that unites us all.”
The conference began on Wednesday with a full day of pre-conference workshops covering an array of important topics including the effective treatment of pain in children, research in children’s palliative care, ethics in children’s palliative care, children’s palliative care in humanitarian situations and difficult conversations in children’s palliative care. The workshops were facilitated by respected experts in the field of children’s palliative care including Prof Julia Downing, ICPCN Chief Executive; Dr Sat Jassal, author and editor of the Rainbows Children’s Hospice Symptom Control Manual, co-author of the Oxford Handbook of Paediatric Palliative Medicine and chair and editor of the APPM Master Formulary; Dr Michelle Meiring, founder of PaedsPal, a children’s palliative care service in Cape Town, and chair of PatchSA; Dr Richard Hain, editor of the Oxford Handbook of Paediatric Palliative Medicine; Joan Marston, ICPCN Global Ambassador and co-founder of PALCHASE; Dr Julia Ambler, co-founder of Umduduzi Hospice Care for Children in KwaZulu Natal and Professor Danai Papadatou, Professor of Clinical Psychology at the School of Health Sciences, Dept of Nursing, of the National and Kapodistrian University in Athens, Greece.
The opening plenary session on Thursday included rousing performances by the Open Air School choir and the Djembe Drummer Troupe from Hillcrest Primary School, followed by presentations from Prof. Julia Downing, Chief Executive of the ICPCN; Dr MR Rajagopal, 2018 Nobel Peace Prize Nominee and Founder of Pallium India, as well as Dr Marie-Charlotte Bouesseau from the World Health Organization. KZN Health MEC, Dr Sibongiseni Dhlomo presented on the recently published palliative care policy for South Africa, specifically a commitment to children’s palliative care. He challenged each province with a heavy burden of disease burden to assess where they are in providing palliative care for children.
Conference delegates representing 43 countries, were served a wealth of information from leading experts in children’s palliative care, including presentations on treating pain and managing difficult symptoms in children and young people, perinatal palliative care and transitioning from child to adult services. On the morning of the second day delegates were addressed by Huyaam Samuels, a young adult accessing palliative care services in Cape Town and heard the moving testimony of two Durban families who had been supported by Umduduzi Hospice Care for Children through the illness and deaths of their respective children and who continue to be supported by this organisation as they through the bereavement period.
A highlight of the conference was the South African premiere showing of the film, “Hippocratic: 18 Experiments in Gently Shaking the World” produced by Mike Hill and Sue Collins of Moonshine Agency and which featured the ground breaking work of Dr MR Rajagopal, 2018 Nobel Peace Prize Nominee and founder of Pallium India. “That was the most inspiring movie I’ve ever seen!” reported one of the audience members. Dr Rajagopal joined ICPCN’s Chief Executive, Prof Julia Downing, as a keynote speaker during the opening plenary on the first morning.
Two posters were judged the best posters on show for the day for the first and second days of the conference. These were The Need for Sustaining Hope during Communication of Unfavourable News in the Care of Children with Palliative Care Needs: The Experience of Mothers and Health Professionals in Jordan by Maha Atout and Safely Navigating the PICU/NICU A Parents’s Survival Guide: Inspired By Our Brave Son Samuel John Frederick Platt And His Incredible Journey by Melissa Williams Platt
ICPCN Chair, Sabine Kraft, ended the conference on a motivational note when she encouraged and motivated the delegates to join Germany in organising Children’s Lifewalks (Kinder-Lebens-Lauf) in their own countries. From July to October this year thousands of people living in Germany will walk, cycle or run thousands of kilometres – for all the families with a child who suffers with a life-limiting illness. Her organisation, Bundesverband Kinderhospiz e.V. will be recruiting people to join them in touring Germany on foot, by bike, wheelchair and even in hospital beds to take them past their member hospices and supporters of children’s hospices. Delegate representatives from each country at the conference were given a beautifully made ‘Angel torch’ donated by her organisation. Ms Kraft challenged delegates to arrange something similar in their respective corners of the world.
Extremely positive feedback from delegates including organisers being told by numerous delegates that the 3rd ICPCN Conference was the best children’s palliative care conference they had ever attended. In closing, Prof Julia Downing challenged delegates, asking them to “step out of our comfort zones, move forward and see how we can come together, collaborate and share ideas to ensure the over 21 million children in need of palliative care can receive it.”