The ICPCN – networking palliative care globally

Contininuing our series of posts, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families.

Today, Professor Julia Downing, Chief Executive of the International Children’s Palliative Care Network (ICPCN), explains why it’s vital to raise awareness of children’s palliative care and support its development – both in Europe and globally.

Professor Julia Downing

Professor Julia Downing

As I write this, the European Association for Palliative Care (EAPC) Paediatric Taskforce has launched its series about children’s palliative care, as the EAPC Paediatric Taskforce is reborn. There have been many developments in children’s palliative care in Europe and globally in the past few years. It is exciting to continually hear of new services that have been set up in different countries, new education or research initiatives, and to see collaborations between organisations in the same or different countries flourishing.

Recent research undertaken by the International Children’s Palliative Care Network (ICPCN) suggests that annually there are more than 21 million children globally who need palliative care, with more than eight million needing access to specialist children’s palliative care services. Yet we also know that in many countries there are limited or no children’s palliative care services available, with 65.6 per cent  of countries in 2011 having no known children’s palliative care provision. In looking at the need versus provision in Kenya, Zimbabwe and South Africa, we found that less than one per cent of children in Kenya, and less than five per cent in Zimbabwe and South Africa had access to palliative care. Thus, the need to raise awareness of children’s palliative care and support its development is great.

The 2014 World Health Assembly Resolution on palliative care stressed the importance of integrating palliative care into existing services, ensuring it is available for all ages, including neonates, children and young people. Raising awareness, access to medications and education are also key issues discussed within the resolution. The ICPCN was established in 2005, with a mission to “achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledge.” Twenty-nine per cent of all ICPCN members (30 per cent  individual and 28 per cent organisational) are from Europe.

Working in collaboration with others, such as the European Association for Palliative Care, ICPCN has five key focus areas: Communication; Advocacy, Research, Education and Strategic Development (ICPCN CARES) and is the only international charity focusing on working globally for the rights of children with palliative care needs. This strategy encompasses a wide range of activities, many of which are interlinked in order to achieve its mission. A few weeks ago I was in Indonesia visiting Rachel House – during my few days’ visit I was able to participate in activities in each of these focus areas:

Julia (back row) with members of the Rachel House team

Members of the Rachel House team, Jakarta, Indonesia, with Julia Downing (back row)

Communication – I shared with the Rachel House team and other stakeholders what is happening in terms of global children’s palliative care. We developed an article for ehospice, utilised social media such as Facebook and Twitter to share some of the work and advocated for the inclusion of palliative care education and research into the university nursing schools. Meetings were held with a variety of stakeholders and every opportunity taken to Advocate for children’s palliative care. Discussions were held in terms of Research – how can they be involved in research activities, what are the priorities for research, and how can stakeholders collaborate together to develop and implement such research activities? The impact of ICPCN’s Education programmes such as the elearning programmes ( was discussed and the feasibility of translation and adaptation for the Indonesian setting, with possible links to a local university. Finally, support was given to Strategic development in terms of clinical service provision, but also in terms of developing a monitoring and evaluation framework for different aspects of the work of Rachel House.

How you can help

Meeting the needs of 21 million children globally seems like an impossible task, but we are taking steps towards this. So please work with us, join the EAPC taskforce for children’s palliative care and the ICPCN, get involved in whatever way you can.

In order to raise the profile of children’s palliative care and move towards the aim of reaching all 21 million children, at ICPCN we are challenging people to do ‘Just One Thing’ to help us achieve our vision. So please visit our website, and sign up to do just one thing for children’s palliative care.

Links and resources

Read more posts in this series on the EAPC Blog. Next week, Natasha Pedersen and Karin Kvasse write about Foreningen for Barnepalliasjon (Norwegian Association for Paediatric Palliative Care).

This entry was posted in CHILDREN'S PALLIATIVE CARE, EAPC Task Forces/Reference Groups. Bookmark the permalink.

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