The International Children’s Palliative Care Network
It is estimated that there are at least seven million children, worldwide, in need of palliative care. The provision of children’s palliative care varies greatly between countries and many children and their families are unable to access the services they need.
The International Children’s Palliative Care Network’s (ICPCN) mission is to achieve the best quality of life and care for children and young people with life limiting conditions worldwide, and for their families and carers, by facilitating dialogue and joint working between professionals in different countries and lobbying for the global development of children’s palliative care.
The ICPCN enables professionals working in children’s palliative care to share information on best practice; encourages the development of different palliative care models; provides training and support to countries wishing to implement children’s palliative care programmes; and raises awareness of children’s palliative care needs worldwide. The network provides a voice for children on the Worldwide Palliative Care Alliance (WPCA) and lobbies governments and NGOs to include children’s palliative care in their policies and programmes.
True Colours currently provides core support for ICPCN which is led by an international board of trustees, and has a staff complement of six. Some of its achievements include:
- Mapping children’s palliative care services globally to build a clearer picture of the provision of palliative care for children.
- Creating an online children’s palliative care service directory.
- Provision of up-to-date news and events in the field of palliative care on its website.
- Development of The ICPCN Charter for the Rights of Life Limited and Life Threatened Children which sets out the international standard of support for this group of children and their families. It is available in 21 languages from the ICPCN website.
- Collaboration with Help the Hospices (UK) for training and development of new children’s palliative care programmes in Malawi and India, with funding from the Department of International Development in the UK.
- Development of a scholarship programme in partnership with the Open Society Institute and The True Colours Trust where scholarships and bursaries are awarded to identified leaders in paediatric palliative care within resource poor countries.
- Partnering with Cardiff University to present the International Paediatric Palliative Care Conference in Cardiff in 2010, 2012 and 2015.
- Development of The ICPCN Guide to Children’s Hospice & Palliative Care Partnership to foster partnerships between hospices in the developed and developing world.
- Creation of the ICPCN Scientific and Research Committee in 2010 to undertake, identify, recommend and prioritise areas of required research in paediatric palliative care worldwide and to develop a network to support researchers in the field.
- Piloting an online training course on pain control and the new WHO 2 step ladder.
- Publishing the book ‘Touching Rainbows’ which gives a voice to children and their families who have been touched and affected by the provision of palliative care. This book was developed to be used as an advocacy tool.
The ICPCN is recognised as a trusted source for information, a central networking point and has built up a reservoir of knowledge and experience upon which the rest of the world is free to draw.