Media Release: Touching Rainbows – Acknowledging the Child’s Voice in Palliative Care
To mark World Hospice and Palliative Care Day 2011, with Voices for Hospices (8 October 2011), thousands of people in around 80 countries will be coming together at more than 1,000 events to celebrate, support and speak up about hospice and palliative care.
This year’s World Hospice and Palliative Care Day theme is ‘Many diseases, many lives, many voices –palliative care for non-communicable conditions.’
The ICPCN decided to use this day to launch its new book ‘Touching Rainbows - Acknowledging the child’s voice in palliative care.’ Through this book we have the
privilege of hearing the voices of some of the many children whose lives, and those of their families, have been affected by life-threatening conditions.
The children tell their stories with honesty and openness, through stories, poems and pictures.
Children and their families from across the world share their experiences, either from the child
themselves or, when their own voice cannot be heard, from those who love them, such as their parents or brother and sister.
The stories, told in the child’s own language wherever possible and with an English translation, are an inspiration to us all. It is hoped they will touch and enrich the lives of many, encourage those travelling a similar path, and instill a sense of courage and joy, despite the many challenges and heartaches. These children and their families pass through many storms and dark days, but still aspire to reach our and touch the light and joy of the rainbow.
The Foreword is written by Sr Frances Dominica, the Founder of Helen and Douglas House, and of the modern children’s hospice movement.
Copies of this book will be distributed around the globe for advocacy purposes and can be bought through the website.
All proceeds from sales will be used for the printing of further copies.
To purchase your copy, go to: www.icpcn.org.uk
For further information contact Sue Boucher sue@icpcn.co.za ; Joan Marston joan.marston@icpcn.co.za or Barbara Steel admin@icpcn.co.za
Linked to the book “Touching Rainbows” and for World Hospice and Palliative Care Day will be the release of a short video on “Paediatric Palliative Care”
A film on Paediatric Palliative Care is film 21 of 50 in the LIFE Before Death documentary series about the global crisis in untreated pain and the dramatic life changing effect palliative care services can deliver to patients and their families around the world. In this short film we discover that the barriers to paediatric palliative care are very complex and children’s pain is often under treated. We learn that providing good care is crucial to the quality of life for the child but that support needs to be extended to the whole family.
“I think that in the paediatric population pain is more frequently under recognized and under
treated than it is in the adult population, though the medications are available, sometimes the
training for physicians is a little bit inadequate and physician’s feel unsure in their ability and concerned about the medications,” reflects Dr Kim Bower (USA).
Joan Marston recounts the story of a young girl with severe pain and with a neuro-degenerative condition being denied the amount of morphine she needed for pain control by a pharmacist who felt she must be an addict until he actually went to the girl’s bedside to see for himself, only to realise how wrong he was.
Hear this and other stories of children’s lives being changed by
accessing palliative care.
Featuring:
Dr Kim Bower (USA)
Joan Marston (South Africa)
Dr Henry Ddungu (Uganda)
Jareal Bantilan (Singapore)
Jessica,Hendra & Esther (Indonesia)
50 Short Films have also been
produced which are being released
at a rate of one per week, they are
currently available to watch at:
www.youtube.com/lifebeforedeathmovie
Joan Marston
Chief executive: ICPCN
Cell: +27 (0 ) 822964367
E-mail: joan.marston@icpcn.co.za
No comments:
Post a Comment