Fertleman Caroline - Learning from paediatric patient journeys: what children and their families can tell us

Learning from

Paediatric Patient Journeys

Pediatric Diagnosis and Management

Series Editors: James F. Bale Jr. and Stephen D. Marks

NEW AND FORTHCOMING TITLES

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Chloe Macaulay, Polly Powell, and Caroline Fertleman, Learning from Paediatric Patient Journeys: What Children and Their Families Can Tell Us

Stephan Strobel, Lewis Spitz, and Stephen D. Marks, Great Ormond Street Handbook of Paediatrics, Second Edition

Learning from

Paediatric Patient Journeys

What children and their families can tell us

Edited by

Dr Chloe Macaulay, BA, MBBS, MRCPCH, MSc, PGCertMedEd

Consultant Paediatrician, Evelina Childrens Hospital, London, UK

and

Former teaching fellow UCL iBSc in
Paediatrics and Child Health, London (20102012)

Dr Polly Powell, MBChB, MRCPCH, PGCertMedEd

Paediatric Trainee, London, UK

and

Former teaching fellow UCL iBSc in
Paediatrics and Child Health, London (20122013)

Dr Caroline Fertleman, BA, MB BChir, MSc, FRCPCH, MD, FAcadMEd, SFHEA

Consultant Paediatrician, Whittington Health, London, UK

and

Course Director UCL iBSc in
Paediatrics and Child Health, London (20102016)

CRC Press

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2017 by Taylor & Francis Group, LLC

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Printed on acid-free paper

Version Date: 20160620

International Standard Book Number-13: 978-1-78523-124-7 (Paperback)

This book contains information obtained from authentic and highly regarded sources. While all reasonable efforts have been made to publish reliable data and information, neither the author[s] nor the publisher can accept any legal responsibility or liability for any errors or omissions that may be made. The publishers wish to make clear that any views or opinions expressed in this book by individual editors, authors or contributors are personal to them and do not necessarily reflect the views/opinions of the publishers. The information or guidance contained in this book is intended for use by medical, scientific or health-care professionals and is provided strictly as a supplement to the medical or other professionals own judgement, their knowledge of the patients medical history, relevant manufacturers instructions and the appropriate best practice guidelines. Because of the rapid advances in medical science, any information or advice on dosages, procedures or diagnoses should be independently verified. The reader is strongly urged to consult the relevant national drug formulary and the drug companies and device or material manufacturers printed instructions, and their websites, before administering or utilizing any of the drugs, devices or materials mentioned in this book. This book does not indicate whether a particular treatment is appropriate or suitable for a particular individual. Ultimately it is the sole responsibility of the medical professional to make his or her own professional judgements, so as to advise and treat patients appropriately. The authors and publishers have also attempted to trace the copyright holders of all material reproduced in this publication and apologize to copyright holders if permission to publish in this form has not been obtained. If any copyright material has not been acknowledged please write and let us know so we may rectify in any future reprint.

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We would like to dedicate this book to all those families who have experienced difficult or painful journeys. We hope that it may go some way to improving journeys for families in the future.

Contents

Chloe Macaulay, Polly Powell and Caroline Fertleman

Chloe Macaulay, Polly Powell and Caroline Fertleman

Chloe Macaulay, Polly Powell and Caroline Fertleman

Bryony Alderman

Sebastian Kraemer

Carol Nahra

The purpose of a storyteller is not to tell you how to think, but to give you the questions to think upon.

Brandon Sanderson

The Way of Kings

On 12 September 1940, four French teenagers entered a secret passageway which led them to an extraordinary discovery: the first recorded stories. In the Lascaux Caves in the Pyrenees Mountains, they stumbled upon a series of cave paintings dating back to between 15,000 and 13,000 BC. The paintings told their stories through depictions of animals, humans and abstract signs. Storytelling, then, is part of our history and culture, uniquely human and preceding the written word as a way of conveying tradition and belief, happiness and sorrow, victory and defeat, joy and despair. It is a primal part of our being.

This is first and foremost a book of stories; the raw uncut narratives of parents of children with a range of complex conditions. It is a book that provokes, challenges and teaches through this medium. Medical training has long been considered an apprenticeship for one reason alone: doctors, and indeed other healthcare professionals, learn their art not from textbooks, but from people. Knowledge gained from textbooks provides an understanding of the theoretical basis of our clinical world and helps build semantic learning. But it is our episodic memories of individual patient encounters that really embed our knowledge; the way in which a mother touched her husbands hand when we broke some bad news about her child, or the unruly curly hair of the child with severe asthma who was so slow to respond to treatment. I became convinced of the importance of the patient journey as a teaching medium when I was Director of Medical Education at Great Ormond Street Hospital. By replacing the traditional Grand Round with the dramatised story of Daniel a boy with cystic fibrosis who we subjected to every possible misadventure from drug errors and system failures to ethical issues of consent and personal autonomy we captured the imagination of the entire hospital. Staff who dealt with the life-and-death rollercoaster of severe illness every day were nonetheless engaged and involved in our fictional dramatisation, discussing how things could have been done differently and better.