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.

Open Access (free)
Naomi Chambers and Jeremy Taylor

of moves towards a more patient-centred approach to care. We present some of the theory and practice of storytelling in the context of healthcare. And we seek to help the reader to draw out the practical learnings from the individual accounts. This book is primarily focussed on England. Our storytellers relate experiences of the NHS in England, and our policy and historical scene-setting is also mostly from an English perspective. The English healthcare system is by far the largest in the UK and one of the largest among high-income countries. It

in Organising care around patients
Naomi Chambers and Jeremy Taylor

The chapter is prefaced by a brief summary of the policy background. Urgent and emergency care is, by its very nature, different from planned care. The diagnosis is not always easy to nail down, the patient might be in considerable pain, distress or shock, and the trajectory of care can be uncertain. Cancer care raises issues of its own. Emergency, planned and cancer care all have waiting time targets in the NHS in England. These were successful in significantly reducing long waits. However, the system was already coming under increasing pressure before the COVID-19 pandemic, with performance deteriorating and an inexorable rise in waiting times. Coordination of care with GPs and other primary care services remains an issue. This chapter contains four stories in which hospital was a significant site for care. The stories cover planned care, emergency care and a story about cancer. The first story is about what happened to Jill following an accident involving her knee, including her follow-up care. The second is about a planned operation to remove Andrea’s gallbladder. The third concerns Lucy’s experience when she was hospitalised with sepsis. The final story concerns Shona’s journey to recovery from breast cancer, and what helped along the way. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care outlined in Chapter 1. As with the other chapters, we pose questions arising from these stories, to simulate thinking and reflection. We have divided these into questions of immediate or operational concern, and those which are more strategic or policy-related.

in Organising care around patients
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

of these ventures (Dheensa et al. 2018 ). But these are complex endeavours, marked by numerous misalignments between policy, strategy and practice, given the complexities and pressures of healthcare systems. In the UK, and the NHS in England within it, the 100,000 Genomes Project is an exemplar of the kinds of large national initiatives that are delivering WGS, which we discuss further in Chapter 5 . Conclusion The promise of personalised or precision medicine for cancer is contested in medicine, science

in Personalised cancer medicine
Prolonging foreshortened futures
Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow, and Sarah Cunningham-Burley

and quality of life. UK patients do not access molecular tests in the same way as US patients such as Guillermo, as most treatments are provided as part of NHS care. In England many of these tests are performed by a network of regional laboratories as part of the Genomic Medicine Service, which specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available, and the patients who will be eligible to access the tests in a National Genomics Test Directory. 6

in Personalised cancer medicine