Open Access (free)
Naomi Chambers and Jeremy Taylor

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.

in Organising care around patients
Naomi Chambers and Jeremy Taylor

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.

in Organising care around patients
Naomi Chambers and Jeremy Taylor

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.

in Organising care around patients
David Larsson Heidenblad

The concluding chapter highlights the study’s most important results: the big breakthrough took place in the autumn of 1967; the driving actors were natural scientists; environmental issues began to be seen as a threat to the survival of humanity; the environmental debate contained a non-apocalyptic and more low-key strand; environmental issues became politicized and subject to conflict; the morning paper Dagens Nyheter and social democracy exerted major influence; the environmental movement emerged only after the big breakthrough. Thereafter the chapter discusses the merits of the new history of knowledge approach and the study’s contribution to international scholarship of the environmental turn. Lastly, a comparison is made between environmentalism around 1970 and the contemporary climate debate. In this way, the chapter emphasizes the importance of historical insight to tackle contemporary global challenges.

in The environmental turn in postwar Sweden
Naomi Chambers and Jeremy Taylor

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 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.

Open Access (free)
Naomi Chambers and Jeremy Taylor

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.

in Organising care around patients
David Larsson Heidenblad

This chapter tells the prehistory of the big breakthrough in 1967 and situates this Swedish history within a larger international context. Was it really true that something radically new happened in the autumn of 1967? Had environmental issues not been discussed in a similar way before? Drawing on the existing literature, especially Paul Warde, Libby Robin, and Sverker Sörlin’s landmark study The Environment: A History of the Idea (2018), longer trends are made manifest. What is emphasized in the chapter, however, is that this longer history of environmental concern took place outside the public eye, or was understood in a more narrow sense. The chapter addresses the importance of Rachel Carson’s Silent Spring (1962) and Rolf Edberg’s On the Shred of a Cloud (1966), and provides an in-depth account of when, how, and why Hans Palmstierna and Karl-Erik Fichtelius (editor of Människans villkor) became pioneering environmentalists. The chapter makes clear how the environmental crisis was linked to other global threats: nuclear war, overpopulation, and the depletion of natural resources.

in The environmental turn in postwar Sweden
School segregation of Romani children

Chapter 3 focuses on the ‘making of citizens’ through education. Education in liberal democracies represents a possible corrective mechanism for inequalities among future citizens. Children from disadvantaged backgrounds should get an equal chance for inclusion into society through the education system. However, the chapter argue that in practice education can also be structured in such a way that it actively creates the fringes of citizenship. Using an intersectional reading, this chapter analyses how states justify school segregation of Romani children as a legitimate measure. It looks at four cases of school segregation at the European Court of Human Rights: D.H. and Others v. the Czech Republic (2007), ‘Sampanis and Others v. Greece (2008), Oršuš and Others v. Croatia (2010) and Sampani and Others v. Greece (2012) – to argue that state discourses either denied the existence of segregation or portrayed it as a beneficial measure for Romani children to ‘catch up’ with the majority language. The chapter compares these cases with the reasoning present in US court cases on African American children and school segregation. It shows that in the US case segregation was legal on paper, whilst in the European cases segregation was prohibited. Still, in both cases segregation remains as one of the fringes of citizenship both for Roma and African American children.

in The Fringes of Citizenship
Open Access (free)
Reflecting on citizenship from the fringe

The Conclusion summarises the main findings of all the previous chapters in order to theoretically grasp the invisible edges of citizenship and the fringes of citizenship. It concludes that in order to understand marginalisation further research on the structural mechanisms leading to marginalisation needs to be conducted. It rejects the claim that marginalisation is incidental and directly points to the mechanisms that produce it. It also rejects the claim that Roma and other marginalised minorities are themselves to blame for marginalisation, discrimination and their exclusion from society, where they should be included as citizens. It discards the claim that Roma are just passive observers of their position. Rather, they do address it and subvert it: the subversion at the fringes of citizenship, I argue, also carries the potential for the reconstruction of citizenship itself to become truly inclusive and without invisible edges. The Conclusion also identifies some critical policy guidelines on how the invisible edges of citizenship could be avoided in the future.

in The Fringes of Citizenship