The International Children’s Palliative Care Network was established in 2005 as a network of individuals and organisations working together to support the development of palliative care for children across the world.
The ICPCN is a registered charity in the United Kingdom with a subsidiary organisation in South Africa, to manage the employment of the small staff. It is governed by an International Board of Trustees with representation from all world regions. The present Chairperson is Prof Mary Ann Muckaden from Mumbai, India. Barbara Gelb UK has been the co-chair and will stand down to become Past Chair in June 2014. The present staff consists of Joan Marston, Chief Executive; Sue Boucher, Director of Communications; Prof Julia Downing, Director of Education and Research; Busi Nkosi, Director of Advocacy and Policy; aand Barbara Steel, Business Administrator.
The staff are supported by permanent Working Groups with representation from a variety of countries and smaller, time-limited Task Teams for specific tasks.
ICPCN now has a steadlily growing membership from 106 countries at present, and has a development strategy based on three primary sets of activities – Communications; Education and Research; and Advocacy. We have set up a Virtual Learning Environment with a growing number of e-learning modules on elements of paediatric palliative care linked to practical placements. These are translated into French, Spanish, Portuguese, Russian, Serbian; with Manadarin and Dutch translations in progress and Arabic translations planned for later this year www.icpcn.org/icpcns-new-elearning-programme/. A UK university is assessing the modules for accreditation.
We have carried out a Delphi study to identify global research priorities in Paediatric palliative care; as well as research in Africa with UNICEF, to begin to identfy the global need for children’s palliative care, looking at prevalence rather than mortality. The Report is available on our website www.icpcn.org
ICPCN manages the International Edition of e-Hospice www.ehospice.com and is represented on the Worldwide Palliative Care Alliance.
We have a vision of a world where all children needing palliative care will receive quality palliative care from trained professionals and volunteers and to this end we are planning a global awareness campaign for our 10th “birthday” in 2015.
At last EAPC board of director held on 5-6 April 2014, in Budoni (Italy) it was agreed to support Barbara Gelb and Anna Garchakova for a further term as the European representatives, their first term of office expires on the 31 May 2014 and they are both eligible for re-election to the ICPCN Board. They should feed back to EAPC board meetings report on activities in Europe.