NHPCO NewsLine February 2014 - (Page 32)

FHSSA | FOCUS ON COMPASSION Quarter 1 - 2014 ICPCN and UNICEF report, continued from page 1 In his welcoming speech David Bull, Chief Executive Director of UNICEF UK, remarked that he often hears people talking about HIV as if we have solved the problem and don't have to do anything anymore. He reminded those present that there are still many aspects of HIV that still need attention. "If we have collectively failed to prevent children from becoming HIV positive and failed a second time in ensuring those children are getting treatment in keeping them alive and well, what we mustn't do is fail a third time and let these children suffer and die in pain," said Bull. In his remarks, Craig McLure, Chief HIV/AIDS Section, UNICEF Headquarters, added that the core mandate of UNICEF is to protect the rights of all children everywhere, particularly those disadvantaged and excluded. Remarkable team effort Joan Marston, Chief Executive of ICPCN, acknowledged all those who had worked on the research and said that it had been a remarkable experience and a real team effort. Showing a map estimating the global provision of children's palliative care services it was evident that Africa had the greatest need. Marston went on to say that in Africa, children's palliative care was fighting to be seen alongside many other issues, such as poverty, and also spoke of the challenges around getting some African countries to stock and make use of morphine for the adequate provision of pain relief. Results of the study Results from the study - available for download from the ICPCN website at www.icpcn.org - show that the need for children's palliative care is great and is not limited to children with HIV and cancer. At the same time, the capacity to deliver these important services is very limited in the three countries studied and many barriers exist to the delivery. Recommendations Recommendations by the researchers include integration of children's palliative care services into each country's public health systems, expansion of training in children's palliative care at all levels, awareness raising within communities to create demand, and the need for both governments and funders to make children's palliative care more of a priority. Expert Panel Discussion An expert panel discussion on the implications of the study was part of the event. Panel members included Joan Marston, Dr. Cecilia Sepulveda of WHO; Dr. Bernard Mandzima, Zimbabwe Ministry of Health; Prof. Myra Bluebond-Langner, Chair of Palliative Care for Children and Young People, University of London; and Jo Temple, True Colours Trust Executive. In her remarks, Prof. Bluebond-Langner thanked the authors for a robust and well written report that makes a contribution to palliative care beyond Africa as many of the issues raised are not unique to Africa. "If we do not relieve these children's pain, we will have failed these children and ourselves. We are nowhere near where we need to be in the UK, in the United States, in Europe and in Africa with regard to outcomes," Bluebond-Langner said. In closing the meeting with a vote of thanks, Barbara Gelb, Chief Executive Director of Together for Short Lives and Co-Chair of the ICPCN, said how proud she was of the ICPCN and the work that has been done in the development of this research. "Today has been symbolic of a huge step forward in children's palliative care. We are raising the profile right now, here, today. This research takes us closer to where we need to be." The full report (PDF) is available on the ICPCN website. A longer version of this article is available on the ehospice International Children website. February, 2014 | 2 http://www.icpcn.org

Table of Contents for the Digital Edition of NHPCO NewsLine February 2014

Who Says It's a Sunset?
A Message From Don
Regulatory Issues in 2014
Staying Up to Speed on the Regulatory Changes
Feedback From the Economic Impact Survey
NHF Gala - What's New in 2014 (display ad)
NHPCO 2014 Board of Directors
CTC Plenaries Now Available as Webcasts
WHV Partners in the News: Mary T Hospice
Reminder: HIS Implementation to Begin July 1
2014 MLC (display ad)
Member News and Notes
Compliance Tip
2014 Webinars (display ad)
Links to Resources on the NHPCO Website
A Feel-Good Moment
News From FHSSA

NHPCO NewsLine February 2014