Members of the EAPC Reference Group for Children & Young People, Prague, 2024.
During it’s 20-year history ICPCN has forged strong partnerships with many international and regional organisations. Partnerships have been, and always will be, key to our advocacy work, helping to amplify our calls for the development of children’s palliative care through far-reaching networks. This article looks at one of our key regional partnerships with the European Association for Palliative Care (EAPC).
From the outset ICPCN has been closely involved in developments in pediatric palliative care within the EAPC. As co-initiator of the Taskforce that later became the EAPC Children and Young People’s Reference Group.
Lizzie Chambers, Programme Manager at ICPCN recalls the early days of setting up what was then called the EAPC Children and Young People’s Taskforce.
“I was approached by the then CEO of EAPC, Julie Ling, to ask if I would set up a new group for children and young people to enable professionals and organisations across Europe to share their learning and experiences of establishing and providing children’s palliative care. Having recently stepped down from the Board of ICPCN, I agreed to take on the co-chairing of this new Taskforce together with Dr Finella Craig, Children’s Palliative Care Consultant at Great Ormond Street Hospital (UK). The Taskforce was officially launched in 2016 and aimed to ensure that palliative care for children and young people had stronger representation within the EAPC, so it could provide one voice across Europe for palliative care for all age groups.”
The ‘Taskforce’ later became a ‘Reference Group’ with a permanent role within the EAPC to bring together the wide range of professionals working to develop children’s palliative care in European countries and provides opportunities for information sharing, research, education, and advocacy. We identify specific workstreams leading to published guidelines and standards and offer educational opportunities for those working in paediatric palliative care by developing pediatric sessions at EAPC events and webinars.
As well as developing our own resources, we also refer people to the support offered by ICPCN, among others.
“ICPCN is a important link between European and global advocacy and innovations and projects aimed at embedding high-quality pediatric palliative care for all children and families who are in need.”
Meggi Schuiling-Otten, Co-Chair of the EAPC Children & Young People’s Reference Group.
One of the most important initiatives from this EAPC Reference Group is the European Charter on Palliative Care for Children & Young People Developed by our Reference Group, the Charter aims to set out standards that can be used as a tool for empowering children, families and healthcare professionals, with regards to what they can expect, what should be available and accessible to them, and for advocating for the development of children’s palliative care services within Europe. The charter can be downloaded for free in 12 languages.
To arrive at such an important document, the Reference Group began by reviewing several existing documents and developing the charter so that it had a broad scope, examining three voices: the child/young person, the family, and the professional. The Charter is hopefully a useful tool for everyone, to help establish standards that can be used to inform children, families, and caregivers about what they can expect, what should be available and accessible, and also to advocate for the development of palliative care for children in Europe.
“We are very proud of the charter. It represents the collective effort of our group, where everyone brings their own experience and background. ICPCN played a key role in this development of this Charter and we warmly congratulate ICPCN on its 20th anniversary! A remarkable milestone.”
Meggi Schuiling-Otten, Co-Chair, EAPC Reference Group for Children & Young People.
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