Organising Care Around Patients : Stories From the Frontline of the NHS

Healthcare aims to be patient-centred but a large gap remains between the fine words and the reality. Care often feels designed for the convenience of the organisations that deliver it, and not enough around patients and their families, or even around the frontline staff who provide it. Why does this happen? What does it feel like? What can be done about it? This book stimulates reflection on these questions by listening closely to those at the frontline. It provides accounts from patients, carers and healthcare professionals who are patients about what it’s like when services get it right, and wrong, from birth up to the end of life. Quite simply, we want to draw upon the power of storytelling – which is increasingly valued as a tool for learning – to help policymakers and practitioners to understand how to deliver better care. We also hope to enlighten the general reader about how they might go about navigating “the system” while it remains imperfect. There is a growing literature of first-person accounts from patients and from healthcare professionals. This book differs by providing a collection of narratives of experiences of the NHS in England to paint a rich and varied picture. Alongside these narratives we provide some international context, and an overview of the history of moves towards a more patient-centred approach to care. We present the theory and practice of storytelling in the context of healthcare. We also seek to help the reader to draw out the practical learning from the individual accounts. Organising care around patients is not for the fainthearted. Naomi Chambers and Jeremy Taylors have curated twenty-five accounts from people who agreed to tell the story of what happened when they or their loved ones came into contact with the NHS. The authors defy you not to laugh or cry, or hold your breath in disbelief, at some point when reading this book. In these true and compelling accounts, we learn the experiences – good and bad – of people grappling with birth and death, caring for loved ones, living with mental illness, coping with long-term conditions, and struggling in older age. This book is a call to action aimed at healthcare professionals, managers and politicians: a manifesto for more patient-centred care. These stories show the NHS at its very best – and also when it falls significantly short. Patients or carers currently battling with the system will derive some hope and encouragement, and clues about what to expect, what to ask for, and from whom. Front matter Contents Figures Acknowledgements Introduction Pregnancy and childbirth Children and young people Managing a long-term health condition as an adult Adult acute care and cancer Mental health and mental illness Older age and end of life Conclusion Further practical resources Appendix: Anonymised list of interviewees and background details Index This book draws on multiple real life experiences to make a compelling case for how the NHS can organise care better around the needs of patients. -- .