ACT - The Association for Children's Palliative Care

The International Children’s Palliative Care Network (ICPCN) has launched the first dedicated website to raise the profile of children with life-limiting or life-threatening conditions across the globe.  The website (http://www.icpcn.org.uk) was launched to coincide with the global celebrations and activities for World Hospice and Palliative Care Day (6 October 2007). ICPCN is the only international membership organisation that represents the needs of children and young people with palliative care needs and their families.
 
Developed in the UK on behalf of ICPCN by the national charity ACT (Association for Children’s Palliative Care), and funded by the True Colours Trust, www.icpcn.org.uk aims to bring together all agencies and individuals working with children’s palliative care across the world.  This new online forum will help to increase awareness and lobby for the global development of dedicated children’s palliative care services.

It’s hoped that the website will also provide an online global ‘one stop shop’ for information; enable the sharing of expertise and information between children’s palliative care practitioners; and increase the international evidence base for children’s palliative care.

Worldwide it is estimated that at least seven million children can benefit from palliative care, but access to such services remains an issue. Dedicated children’s palliative care services, although well established in some parts of the world, are still a relatively new development.

Lizzie Chambers, Chief Executive of ACT and joint Vice Chair of ICPCN said: “Children and young people with life-limiting or life-threatening conditions have very specific palliative care needs, often different to those of adults. ICPCN share a vision that every life-limited child deserves a high standard of total care, wherever they live in the world.”

“We know we still have a long way to go. Although there are some excellent models of good practice across the world, the overall picture is still very patchy. In half the countries in the world there is no palliative care provision of any kind and in many of those countries where services do exist children’s palliative care has a poor profile, is not seen as unique and separate from adult care, and agencies have to work hard to highlight the special needs of children. We hope that our new website will serve as a catalyst for change and start to put children’s palliative care on the world map.”

www.icpcn.org.uk will provide an online forum for ICPCN members to exchange information, news, events, research and good practice. The website has been designed to enable practitioners to post their own children’s palliative care news from anywhere in the world.  It’s simple to navigate and easy to upload your own country’s news, research and developments. You can also publicise your own local events, conferences and seminars.

Anyone with an interest in palliative care can join ICPCN for free and start sharing information. The site also features an “International Directory” which provides contact and service information for children’s palliative care agencies and individuals working in the field.  Once the site is launched, it will host a dedicated “icpcn forum” to enable members to discuss and debate the latest developments in children’s palliative care.

The ICPCN wants to encourage as many agencies and individuals to visit the site and sign up to its international campaign.  The success of the website will rely on people joining ICPCN and raising awareness of children’s palliative care needs.

Joan Marston, Paediatric Palliative Care Manager for the Hospice Palliative Care Association of South Africa and Chair of ICPCN said: “The ICPCN represents the voice of children on the steering group of the World Wide Palliative Care Alliance. Children all over the world will benefit from shared learning in the field of paediatric palliative care. Children’s programmes in developing countries, especially those devastated by HIV and AIDS, will be supported by more developed countries and programmes.

The developing countries often lead the way in providing palliative care in resource –poor settings, and have many innovative projects to provide palliative care to children. We urge all those interested in paediatric palliative care to join the ICPCN and to help to raise awareness of the very special needs of children with life-limiting conditions, and their families.”  

The ICPCN Steering Group has members representing: Africa, Central, Western and Eastern Europe, North America, South America, Australasia and Asia.  The Steering Group is also supported secretarially by Help the Hospices.

The ICPCN is also represented on the steering group of the worldwide palliative care alliance and the global network of national associations. It is chaired by Joan Marston, Paediatric Palliative Care Manager for the Hospice Palliative Care Association of South Africa. The joint Vice-Chairs are Lizzie Chambers, Chief Executive of ACT and Barbara Gelb, Chief Executive of ACH (Association of Children’s Hospices) in the UK. The head office of the ICPCN is to be established in Cape Town, with an International Information Officer co-ordinating the worldwide work of the ICPCN.

Visit http://www.icpcn.org.uk and join the international movement to make the voices of children and young people with life-limiting conditions heard, acknowledged and respected across the world