Dedicated children’s palliative care services, although well established in some parts of the world, are still a relatively new development. There are many excellent models of good practice across the world, however, the overall picture is still very patchy and there is considerable scope for development. In many areas of the world children’s palliative care has a poor profile, is not seen as unique and separate from adult palliative care, and agencies must work hard to highlight the special needs of children.
Many children’s palliative care services work in isolation and may find themselves reinventing what has been developed elsewhere. There is also an information gap about what exists and what is happening in other countries in relation to children’s hospice and palliative care.
It is recognised that all children’s palliative care professionals face common experiences and that there will be opportunities for sharing information and providing support, as well as opportunities for mutual learning. We know from experience in the adult sector just how useful it is to look outside of our own context to what is happening in other countries and to engage with these activities. There is a global need to bring together all those who work with life-limited or life-threatened children, and the founders of ICPCN want to ensure that this happens.
The birth of ICPCN
The International Children’s Palliative Care Network (ICPCN) was established to raise awareness of children’s palliative care across the world. The founding agencies believed that by coming together and forming an international network that the voices of children and young people with life-limiting and life-threatening conditions, and their families and carers, would be heard and acknowledged. We wanted to come together to campaign for the best quality of life for children and their families regardless of where they live in the world.
The impetus to establish ICPCN was born from a vision of wanting to raise awareness of the unique and specific palliative care needs of children and young people, and that these are seen as distinct from adult palliative care. We wanted to develop a network that could share good practice and expertise, and enable agencies across the world to develop a range of dedicated children’s palliative care services, and develop a “one-stop-shop” for information about children’s palliative care. The momentum to take things forward came following an international seminar in The Hague, organised by Help the Hospices in early 2003.
This event brought together for the first time representatives from over 50 national and regional hospice and palliative care associations, inter-governmental bodies, NGOs and major international funders of palliative care. One of the outcomes of this seminar was an agreement to set up a “virtual” global network to facilitate future working and information sharing within children’s palliative care.
Further, it was agreed that this network should approach the World Health Organisation for “official relations” with a view to advocating for palliative care in the international context. The initial “ICPCN” concept became concretised at the national event in Seoul, South Korea in March 2005, and a group of individuals representing children’s palliative care began to meet as the Steering Group of ICPCN.
In 2005 ICPCN was founded under the auspices of ACT* in the UK, as a collaborative partnership.
*ACT has since joined with Children's Hospices UK to form 'Together for Short Lives'.
