A House Called Helen The Development of Hospice Care for Children

by Worswick, Jacqueline

• ISBN13: 9780192632357
• ISBN10: 0192632353
• Edition: 2nd
• Format: Paperback
• Copyright: 2001-01-18
• Publisher: Oxford University Press

Summary

When the first edition of A House Called Helen was published in 1993, there were only a handful of children's hospices in existence, all of them within the UK. There are now more than twenty in operation, and a significant number at the project stage, in the UK alone, and children's hospiceshave been set up in Canada, the USA, Australia and continental Europe. The concept of a children's hospice, seen as innovative when the first, Helen House, opened in Oxford in 1982, is now well established and the growth in the number of children's hospices has seen corresponding importantdevelopments in the field of paediatric palliative care. This book provides an authoritative account of how Helen House came into being. It records the events surrounding the foundation of the hospice and how it stemmed directly from what was learnt from the events following the sudden illness of the author's eldest daughter Helen, after whom it wasnamed. The book sets out the philosophy which underpinned the hospice, which was taken up as the guiding philosophy of children's hospice care. It describes the hospice's operational framework and details the service provided by Helen House, which is widely cited as a model for children's hospicecare worldwide. It provides valuable insight into the needs of the families who use hospice services and touches both on the difficulties they face caring, often over a long period of time, for a child with a life-limiting illness, and on the role and attitudes of professionals and indeed of thepublic at large. In this new edition an additional chapter reviews the growth of children's hospices and reflects on the challenges they face in their maturity. It considers the development of children's hospice care in relation to wider service provision and examines current and future issues surrounding the careof children with life-limiting illness.

Author Biography

Jacqueline Worswick is founder of Helen House in Oxford, the first hospice for children in the UK.

Table of Contents

Introduction	9	(4)
Helen's Illness	13	(21)
Home from Hospital	34	(19)
Frances and Helen	53	(19)
Planning the Hospice	72	(14)
The Vision Becomes Reality	86	(41)
After the Opening	127	(33)
The Philosophy at Work	160	(37)
Reflections on Years of Caring	197	(34)
Conclusion	226	(5)
Into the New Millennium	231	(34)
Unifying the approach and establishing networks	232	(4)
Children's hospices come of age	236	(5)
Governance and funding	237	(4)
Current and future issues	241	(20)
Awareness and understanding	242	(5)
The human dimension	247	(2)
Staff development	249	(4)
Broadening the service	253	(1)
Provision for young adults	253	(3)
Family accommodation	256	(1)
Sibling support	257	(1)
Home care	258	(2)
Education	260	(1)
Evaluating the service	261	(1)
The way ahead	262	(3)
Index	265