From a small idea at an international summit to a global network: ICPCN marks 20 years of progress in children’s palliative care. Looking back at key milestones, the journey toward accessible care for every child continues.
2025 marked the 20th anniversary of the International Children’s Palliative Care Network, a year that culminated in our 4th International Conference in Manila, Philippines. The theme of the conference, ‘Milestones and Horizons’, reflected the significant progress made in children’s palliative care worldwide over the past 20 years. It also highlighted the need to keep looking ahead and to continue working towards making high-quality children’s palliative care accessible to the more than 21 million children living with life-limiting or life-threatening conditions worldwide.
ICPCN has achieved many milestones over its 20-year history. The idea for ICPCN first emerged in South Korea at an international palliative care summit. Joan Marston, who later became our first CEO, noticed that children were only “implied” in the programme. Knowing that this often meant they were “forgotten”, Joan, together with future trustees Barbara Gelb and Peter Ellis, advocated for dedicated time on the programme. This set the wheels in motion to establish an international network dedicated to palliative care for children.
Following the conception of the ICPCN in Seoul, ICPCN was started in 2005 and was subsequently registered as a Charity in the United Kingdom and South Africa. After 11 years as Chief Executive, Joan Marston retired in 2016. Professor Julia Downing then took on the role, having previously worked as our Research and Education Consultant.
Over the past 20 years, ICPCN has achieved significant progress across the five areas of its strategy:
Communications
Throughout our history we have played a key role in building a network of individuals and organisations to create a global unified voice for children’s palliative care. We now have 7,570 individual and 617 organisational members. We have supported this network with regular communications and opportunities to share news and developments, via our website, newsletter, socials and the ehospice website which was launched in 2012, with ICPCN editing the international children’s edition.
Over the years, we have published a range of key resources, including:
We were proud to initiate #HatsOn4CPC as the global day for children’s palliative care in 2013, which has now become an annual awareness raising campaign on the second Friday of October, with worldwide participation and a platform to celebrate the wonderful people and organisations who work in children’s palliative care.
Advocacy
ICPCN really values the many partners with whom we have collaborated to provide a unified voice to further the cause of children’s palliative care. We worked with a range of partners to secure inclusion of children in a landmark resolution on palliative care (2014), and following this we presented the first WHA side-event on CPC (2015) at the 68th World Health Assembly. Another key advocacy achievement was the collaboration with the WHPCA and IAHPC to develop The Berlin Declaration: a collaborative roadmap to advance global hospice and palliative care. Most recently we have been involved in the publication of two papers looking at inequities in access to controlled medicines for children, one of which reviewed the scope, determinants and consequences of inequitable access, and the other addressed policy issues and intervention priorities. Our advocacy continues with the launch of a new global Position Paper campaign to be launched in 2026!
Research
Recognising the importance of evidence to underpin service development, research has been a cornerstone of our work and we have been leading and actively participating in research that is of strategic importance to our mission. For example, a Systematic Review (2011) revealed that 65% of countries have no CPC provision, a Delphi Study Priorities for global research into CPC (2012) set out priorities for global research into children’s palliative care, ICPCN’s Research into the Global Need for CPC (2017) estimated that >21 million children need palliative care of which >8 million need specialised care and also in 2017 ICPCN co-authors the Lancet Commission Report ‘Alleviating the access abyss in palliative care and pain relief’ and recently led on a paper looking at serious health related suffering in children.
Education
Education and training has always been a key part of ICPCN’s work. Initially we focussed on providing tailored in-country education programmes in many countries around the world. In order to achieve greater reach of CPC education we launched our E-learning Programme (2011) with a first pilot course on ‘Pain management in Children’. In 2024 we launched a new ICPCN Education & Membership Hub to bring together all our educational offerings, recordings of webinars and e-learning courses and in2021 we launched ICPCN’s monthly webinar series, attended by delegates from more than108 countries.
Conferences
We have held many conferences over the years, firstly co-hosting a conference in Cape Town with Children’s Hospice International and HPCA (2009) where we launched the ICPCN Declaration of Cape Town to call for CPC as a basic human right. Since then we have put on four conferences of our own: our 1st International Conference in Mumbai (2014) when we received a beautiful message from Pope Francis; our 2nd International Conference in Buenos Aires (2016), our 3rd International Conference (2018) in Durban, with messages from the Princess of Wales and Archbishop Desmond Tutu and of course our most recent conference in 2025 in Manila, Philippines.
Strategic Development
We have secured several grants over the years which have enabled us to develop strong partnerships to spearhead the strategic development of children’s palliative care within countries. We have led projects such as the development of Beacon Centres in South Africa, Tanzania and Uganda (2009-10); a five-year DFID-funded project The Two Country Project (2010) supporting development of children’s palliative care in Malawi and Maharashtra; and most recently a major ongoing project ChilPalCareGhana which is now being rolled out across West Africa in partnership with World Child Cancer.
Over the years we have carried out mapping surveys to enable us to understand how children’s palliative care is developing worldwide. Our first mapping in 2005 showed that children’s palliative care in 94% of countries was non-existent or at the lowest level. Our most recently published Mapping of Children's Palliative Care (2023) showed that only 42% remained at the lowest level. However, this is still not good enough and we have also sadly seen some countries struggling to provide children’s palliative care, particularly those impacted by humanitarian crises and armed conflict.
However, we are filled with optimism. Awareness of children’s palliative care is growing, education initiatives are expanding, and the evidence base is strengthening.
As we look back on the past 20 years, we can see how far we have come, the foundations upon which we are built, the lessons that we have learnt, the opportunities that we have taken and built upon and the importance and contributions of all those who have travelled this journey with us. As the African proverb says “If you want to go fast, go alone; if you want to go far, go together” it feels like, with your continued support, we are now in the position to go far together.
Read our special 20th Anniversary Impact Report