Worldwide Development of Palliative Care for Children

1. Worldwide Development of Palliative Care for Children What is needed now? Joan Marston ICPCN 1 December 2012 ; Rome

2. Why are we here?

3. “ You are the chief executive of the International Children’s Palliative Care Network. So what are you doing for the children of Songea?” Bernard: Expert patient

4. Sr Frances Dominica and Helen HouseOxford, England. 1982

5. 20 years on……

6. Children’s Hospice International CHI established 1983 Ann Armstrong-Daily USA Annual International conferences

7. International impact on development 1998 • WHO Definition of palliative care for children • WHO Cancer Pain Relief and Palliative Care for Children 2000 Workshops held by Warsaw Hospice for Children 2003 • Act/Together for Short Lives Categories 2005 • ICPCN established after a global meeting in South Korea

8. 2006 • Oxford Textbook of Palliative Care for Children 2007 • IMPaCCT :Standards for Paediatric Palliative care in Europe 2008 • ICPCN Charter on Children’s Right to Palliative Care 2011 UN Committee on the Rights of the Child – Statement on Belarus

9. 2012 1st EAPC Paediatric Palliative Care Conference in Rome

10. Other important milestones Appointment of Academic Chairs in Palliative Care for Children • Prof Boris Zernikow • Prof Myra Bluebond-Langner Master Classes / International workshops • Warsaw Tomasz Dangel • Minneapolis Dr Stefan Friedrichsdorf • Germany Prof Boris Zernikow Fellowships – UK, Germany, Australia, USA, India etc

11. Others???

12. What is needed is a Global Strategy to turn the world dark green! Wonderful programmes and individuals in different countries and regions

13. Estimate of the number of children requiring palliative care is variable 7 – 20 million Research beginning with UNICEF and ICPCN to estimate the need - Stephen Connor and Chengerai Sisimayi

14. Access to resources is variable INTERNATIONAL CHILDREN’S PALLIATIVE CARE NETWORK DECLARATION OF CAPE TOWN 2009 Palliative care for children is a basic human right. We believe that all children with life-threatening and life-limiting conditions have the right to quality palliative care provided by trained health care practitioners. Holistic family-centered children’s palliative care encompasses individualized assessment, pain and symptom management, psycho-social, spiritual and bereavement support. As a community of palliative care practitioners we recognize that disparities exist within and between countries and services, but collectively we are a rich resource of knowledge, skills and judgement; and we commit to share all that we can to achieve this joint vision. We commit both individually and collectively to identify and advocate for opportunities for collaboration

15. What would a global strategy include? • Education – more accessible and affordable and linked to mentorship • Research • Advocacy in country and internationally and in collaboration with other international advocacy groups WPCA. IAHPC. GAPRI etc • Services and Model programmes • Integration into health systems • Information sharing and dissemination of documents eg WHO pain guidelines

16. Influence policy: The Italian experience WPCA Advocacy initiatives

17. Inform and involve funders as partners Funder-Plus!

18. Networking and collaboration Costing of palliative care for children Involving families and children eg Malawi High Level meeting between children with life-limiting conditions and policy makers 16 December 2o12.

19. Other suggestions?

20. Define our objectives Plan a strategy Cost the strategy Identify the partners and their roles Implement!

21. So what are we doing for the children of Songea?