A global journey of advocacy, collaboration and care for children with life-limiting conditions
2025 marks the 20th anniversary of the ICPCN, culminating in our special celebration conference Milestones & Horizons' taking place in Manila, 12–15 November. With so many people involved in ICPCN from countries all over the world and so many milestones reached, we are delighted to share reflections from some of those involved right at the beginning – and a message from our Chief Executive on the future horizons for ICPCN.
“Children and young people with life-limiting conditions have very specific palliative care needs which are often different to those of adults...”
— Founding Statement of Korea, 2005
The beginning: claiming space for children
Joan Marston, founding Chair and CEO of the ICPCN:
"Children were often the “implied” or forgotten group in international meetings; and when Barbara Gelb (Chief Executive of the Association of Children’s Hospices UK) and myself were invited to a Global Palliative Care Summit in Korea we discovered that there was no mention of children on the agenda, although we were told they were “implied”. As we knew that “implied” meant “often forgotten” we fought for dedicated time and ended up with 3 sessions where wonderful children’s hospice and palliative care practitioners and advocates from 15 countries decided the time for action had arrived! A decision was taken to write the Founding Statement of Korea which was presented to the conference in the final session and received everyone’s approval and support."
Building the network
"The time was ripe to form the ICPCN and a small initial Steering Group was set up that included Barbara Gelb, Peter Ellis and Lizzie Chambers from the UK; Dr Daniella Mosiou from Romania; Rev Piotr Krakoviac from Poland; Dr Lisbeth Quesada Tristan from Costa Rica; and myself from South Africa. Mary Callaway from the USA and Sharon Baxter from Canada kindly agreed to be Advisors. As the network established itself, we invited others to join and participate in this exciting initiative. Chaired by myself, with Barbara and Lizzie as vice-Chairs we worked together as a team with Prof Mary Ann Muckaden (India) Dr Rut Kiman (Argentina); Sabine Kraft (Germany); Dr Anna Gorchakova (Belarus); Dr Hanneke Brits (South Africa); Dr Deiia Birtar (Romania); Dr Ross Drake (New Zealand); Prof Sue Fowler-Kerry (Canada); Sue Huff (USA) and Julia Downing PhD (African Palliative Care Association). This group became the first Board of Trustees of the ICPCN with the addition of Richard Carling as Treasurer."
Projects, advocacy and global impact
"We grew and developed partnerships through projects such as the Beacon Centres in South Africa, Tanzania and Uganda; a five-year DFID-funded project supporting development of children’s palliative care in Malawi and Maharashtra; assessing the global need for CPC together with UNICEF; the first mapping of the development of CPC worldwide; research, e-learning and ongoing education; membership development and strong advocacy. After contributing to the World Health Assembly (WHA) Resolution on Palliative Care (2014) in 2015 we presented the first WHA side-event on CPC. When reflecting on what made establishing the ICPCN a success, external support, collaboration, communication and respect were key.
Voices from the frontlines
Barbara Gelb, former Chair of the ICPCN:
“In Seoul we really had to fight to get recognition for a separate voice for children’s palliative care and we had to work hard to retain our commitment to that vision. We put a huge amount of work into ICPCN. It was collaborative and were all deeply committed. There were groundbreaking moments, with ICPCN supporting and mentoring people in different countries to bring children’s palliative care to come to the fore for the first time. ICPCN’s achievements are incredible.”
Sue Boucher, Information Officer 2007–2019:
"It was an enormous privilege to be the very first employee of ICPCN, appointed to the position of Information Officer in December 2007. Despite being the lone employee, much was achieved in those very early years, including the first publication of the ICPCN Charter in 25 languages in 2008. In 2009 we partnered with Children’s Hospice International (CHI) to bring the first international congress on children’s palliative care to Africa. This congress, held in Cape Town, inspired The ICPCN Declaration of Cape Town 2009. One of my most significant contributions was to collaborate in the development of what has become a widely recognised day of advocacy – that of ‘Hats on for Children’s Palliative Care’. Watching how the day continues to spread international awareness every year, is deeply satisfying and I hope it can one day become officially recognised. I’m so grateful to have been given the opportunity to play a role in the work and establishment of ICPCN up until 2019 and wish them great success in the future as they celebrate 20 years of working towards ensuring that children’s palliative care is accessible everywhere in the world to all children who need it."
Looking ahead: milestones and horizons
Prof. Julia Downing, CEO of the ICPCN:
“2025 is an exciting time for the development of children’s palliative care and the work of ICPCN globally. It feels like there is a strong coming together of organisations, working in different ways, in different countries, but with the purpose of strengthening children’s palliative care, in the knowledge of the African proverb “If you want to go fast, go alone; if you want to go far, go together” it feels like we are now in the position to go far."
"Yes we still have a long way to go, but as we look back on the past 20 years, we can see how far we have come, the foundations upon which we were built, the lessons that we have learnt, the opportunities that we have taken and built upon and the importance of all those we have gone along the journey with us."
"The theme of our 20th Anniversary Conference being held this year in Manila, Philippines is that of ‘Milestones and Horizons’. This signifies the huge strides that have been made in the development of children’s palliative care around the world in the last 20 years, but also the need to keep our focus on the horizon and what we need to do to make quality children’s palliative care accessible for all the world’s 21 million children living with life-limiting or life-threatening conditions.”
Join the celebration
ICPCN will be sharing Anniversary Stories throughout the year.