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- Author: Naomi Chambers x
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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.
We explain what we mean by organising care around patients and our alternative term patient-centred care. We set out the key characteristics of patient-centred care. These are summarised as: understanding and valuing what matters to patients; seeing the whole person; respecting people’s rights and autonomy; and being customer focussed. We go on to provide a brief history of developments in patient-centred care, in policy, attitudes and practice, comparing the record and performance of the NHS in England with other countries. In light of this history, we review whether and to what extent the NHS can be viewed as patient-centred and the obstacles to further progress. Our approach to storytelling as a means of eliciting important truths about patient-centred care is outlined. We provide information about how we sourced the storytellers, the ethical and methodological issues we encountered, and what we learned from the process of listening to the stories. Finally, we summarise the structure of the rest of the book and suggest how the reader might engage with and learn from the stories it contains.
This chapter contains two stories about pregnancy and childbirth. The chapter is prefaced by a brief summary of the policy background. This includes a rehearsal of some of the enduring challenges around providing person centred care in pregnancy, during childbirth and in the postnatal care period. Persistent and troubling variation in the clinical quality of care is noted, as evidenced by recent public inquiries into maternity services. The first story is told by Cathy, a healthcare professional who became pregnant and then had a rough time, including acquiring sepsis, when she gave birth. In the second story we hear from James about becoming a new dad. We come across James again when he tells of his experiences of caring for his mother with dementia in chapter 7. 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.
The chapter is prefaced by a brief summary of the policy background. A number of child health outcomes in the UK lag behind those in other comparable countries. Children from deprived areas or with a black or other minority ethnic family background are twice as likely to be obese and this inequality is widening. Children with complex needs and disabilities are often under-served. Four contrasting stories are presented here. Dan is a normally healthy teenager who was hospitalised with an acute bacterial infection from which he has now recovered. His father Jonathan tells the story from his perspective. Dan’s illness took place during the COVID-19 pandemic. Jim was a severely disabled young man from birth until his death aged 36. His parents Justin and Lucinda cover his entire life – and death – in their account. In a story fragment, Eve remembers as a child how she came to be diagnosed with type 1 diabetes. Finally, Eileen tells of her experiences as a carer for a teenage son with a diagnosis of scoliosis, including the length of time taken to get an appropriate tertiary referral. She found a support group was helpful. 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.
The chapter is prefaced by a brief summary of the policy background. People with long-term conditions account for a very high proportion of all health service usage. Yet those services often struggle to provide what is needed. Accurate diagnosis, medicines and treatments matter, but so does an approach that is sensitive to your preferences and your experience of living with your condition; continuity of care and the joining up of different services; being empowered and supported to live a fulfilling life. There are five stories in this chapter. Katie has had type 1 diabetes for around twenty-five years with gradually increasing painful and distressing complications. Tim is in his 30s and has epilepsy which developed during his teenage years. He talks of the stigma attached to the condition. Joanna has various health problems, including Ehlers-Danlos syndrome, which is a rare condition, and which her son also suffers from. Jasmin has lupus which took a long time to be correctly diagnosed. Venetia lives with chronic fatigue syndrome which has significantly affected her quality of life as a young adult. We invite readers to assess how these narratives compare with the four characteristics of patient-centred care that we 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.
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.
The chapter is prefaced by a brief summary of the policy background. Mental health problems are widespread, at times disabling, yet often hidden. In the UK, nearly half of adults think that they have had a diagnosable mental health condition at some point in their life. Since the 1960s, punitive and stigmatising attitudes have largely given way in most countries to a more community-based, human rights-informed approach. Nevertheless, mental health services in the UK have not had the priority given to physical health. Recent national policy is aimed at boosting provision. This chapter contains five stories. Audrey is a healthcare professional. Hers is a story fragment, describing struggles to get access to the right services for her family member. Stanley arrived in the UK from Zimbabwe and had his first breakdown and diagnosis of bipolar disorder in 1997. Alan has also been living with bipolar disorder for over twenty years and now works as a patient ambassador. Nathan is a teenager with various mental health issues. Finally, Lucy is a retired hospital psychiatrist with lived experience of a severe and enduring mental illness. 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.
The chapter is prefaced by a brief summary of the policy background. Poor health in later life is not inevitable. We live in an era in which society is getting older, and healthy ageing is a common goal across many countries. Nevertheless, as a whole we are more reliant on health and care services as we age. The majority of people over 85 are living with three or more long-term conditions. The NHS often struggles to respond to the needs of people with dementia. Ageism is still widely prevalent, and can have an adverse effect on access to services. There are five stories in this chapter. Robert is in his 80s and has a heart condition and also stomach and joint problems. Rabiya cares for her mum who has dementia and doesn’t speak English well. Rabiya relates multiple experiences of discrimination. James looked after his mother for ten years after her diagnosis of dementia. Sheila cares for her husband who has dementia. She describes the battle to get a diagnosis and care. Kauri’s dad died of pancreatic cancer. She narrates many episodes of excellent care and support given by the hospital and the GP. 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 this concluding chapter, we examine how far William Osler’s injunction – to just listen to the patient – is heeded in today’s NHS. We assess the value of gathering stories in this way as a contribution to truly listening to patients and their families. We reflect on the extent to which the spirit of the NHS Constitution is being upheld, especially in relation to whom the NHS belongs. From the stories we identify five dimensions to care which is organised around patients: kindness, attentiveness, empowerment, organisational competence and professional competence. We compare these themes with the case and the evidence for patient-centred care outlined in Chapter 1. We consider what the stories tell us about the things that patients value, the extent to which these things are put into practice, and what the obstacles are. We reflect on the five themes as the basis for a call to action for improvement. We discuss vital questions of context: in particular, straitened funding and workforce shortages in the NHS, and the experiences of COVID-19. Finally we touch on future trends, for example the rise of digital healthcare, and consider the implications for better organising care around patients.