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A House Called Helen: The Development of Hospice Care for Children

By (author) Jacqueline Worswick

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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 hospices have 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 important developments 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 was named. 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 hospice care 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 the public 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 care of children with life-limiting illness.