The NHS Experience

'Your son has cystic fibrosis.' The doctor said the words again, clearly expecting some kind of response. Susan stared at him, all too clear what it meant now. All she could say was 'He can't have it. Not that!.' The doctor interrupted, avoiding her eyes and looking down at Daniel's notes. 'I'm very sorry, Mrs Johnson, but I'm afraid he does.' "The NHS Experience" is an accessible and engaging guide for all those journeying through the NHS, whether as patients, carers or professionals. It draws on the experience of staff and families at Great Ormond Street Hospital to provide good practice guidance for both users and providers of health care. This unique book is based on the successful "Snakes and Ladders" drama programme developed at Great Ormond Street Hospital. It uses the story of Daniel, a fictional child with the life-limiting disease cystic fibrosis, to provide insight into the enormous challenges faced by patients, their families and the professionals involved in their care. Asking difficult questions about how we can improve the NHS experience for everyone at the front line, Daniel's story builds on information from a wealth of sources to highlight: the practical, ethical, resource and financial dilemmas integral to the NHS; the vital issues around communication, trust, management of clinical errors, consent, shared decision-making and bereavement; and the realities of fragmented care, bed shortages, uncertain diagnoses, and complex and difficult treatment choices. This is a book that should be read by all healthcare professionals and everyone who needs to use the NHS.

ISBN 0415336716   Pages 304 ISBN13 9780415336710 (What's this?)   Volumes 1 Publisher Taylor & Francis Ltd   Weight (grammes) 376 Imprint Routledge   Published in London Format Paperback   Height (mm) 138 Publication date 06 Dec 2005   Width (mm) 216 Library of Congress 2005016353   Spine width (mm) 17 DEWEY 823.92   Academic level Undergraduate, Postgraduate, Professional / Scholarly DEWEY edition DC22

Preface iv Foreword viii Acknowledgements x Chapter 1: Beginnings 1 Chapter 2: It's not what you say -- the diagnosis 13 The healthcare system: understanding system complexity 24 The societal context: cultural backdrop 38 At the front line: the consultation 41 Unresolved questions: insight and performance 59 Chapter 3: Home and away -- sharing care 63 The healthcare system: care in the community 83 The societal context: the child first and always? 101 At the front line: trust and transfers 106 Unresolved questions: the right to life 126 Chapter 4: No room at the inn 133 The healthcare system: understanding workforce issues 146 The societal context: tiers, teams and tribalism 164 At the front line: making a difference 171 Unresolved questions: informed choice 191 Chapter 5: Sorry seems to be the hardest word 195 The healthcare system: understanding system error 209 The societal context: no fault compensation? 220 At the front line: dealing constructively with complaints 227 Unresolved questions: liability for manslaughter 246 Chapter 6: Testing times 249 The healthcare system: evidence-based care 262 The societal context: rationalising or rationing? 281 At the front line: living with risk and uncertainty 286 Unresolved questions: first, do no harm 306 Chapter 7: Hard graft -- transplant decisions 311 The healthcare system: competence and informing consent 325 The societal context: all changed, changed utterly 340 At the front line: junior partners 346 Unresolved questions: organ donation 360 Chapter 8: Endings 366 Afterword 384 Bibliography 385