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
Romani Minorities in Europe and Civic Marginalisation

Numerous scholars and policymakers have highlighted the predicament of Roma as the most disadvantaged ethnic minority in Europe. This predicament has often been discussed as an unfortunate anomaly within otherwise inclusive liberal democratic states.

In this book, Julija Sardelić offers a novel socio-legal enquiry into the position of Roma as marginalised citizens in Europe. Whilst acknowledging previous research on ethnic discrimination, racism and the socio-economic disadvantages Roma face in Europe, she discusses civic marginalisation from the perspective of global citizenship studies. She argues that the Romani minorities in Europe are unique, but the approaches of civic marginalisation Roma have faced are not. States around the globe have applied similar legislation and policies that have made traditionally settled minorities marginalised. These may have seemed inclusive to all citizens or have been designed to improve the position of minority citizens yet they have often actively contributed to the construction of civic marginalisation. The book looks at civic marginalisation by examining topics such as free movement and migration, statelessness and school segregation as well as how minorities respond to marginalisation. It shows how marginalised minorities can have a wide spectrum of ‘multicultural rights’ and still face racism and significant human rights violations. To understand such a paradox, Sardelić offers new theoretical concepts, such as the invisible edges of citizenship and citizenship fringes.

Open Access (free)
Strangers among citizens

The Introduction offers a new perspective and novel theoretical tools to analyse citizenship as well as what the position of Romani minorities in Europe indicates about citizenship in liberal democratic states. Instead of looking at Roma merely as a marginalised minority or a disadvantaged group, it aims to comprehend their position as citizens.

in The Fringes of Citizenship

Chapter 2 scrutinises the connection between the right to territoriality and the mobility of marginalised minorities, particularly how the perception of Roma as a ‘deviant culture’ contributes to the forceful restriction of their rights (such as the right to free movement). State authorities limit freedom of movement for Roma because they construct them as a security threat. The chapter argues that all these cases should not be simply seen in terms of the right to mobility, but in terms of the rights certain groups have on particular territories. The chapter then examines whether there are any similarities in relation to territory and mobility in the case of Australian Indigenous people. Although both of these groups have rights on the territory, their claims have been suspended when they have been in conflict either with the sovereignty of the states or the economic interests of the states (as in the case of the Intervention in the Northern Territory in Australia). The chapter concludes that freedom of movement and territorial rights are two sides of the same coin: it is the states that grant or restrict them, and this leads to the positioning of marginalised minorities at the fringes of citizenship.

in The Fringes of Citizenship
Total infringement of citizenship

Chapter 4 looks at the position of Roma without access to citizenship: those who are stateless. 75 per cent of stateless people belong to minority groups. However, not all minorities are equally vulnerable to statelessness. Whilst most stateless minorities have no access to political rights, some have a broad scope of economic and social rights. For example, Russian speakers in the Baltic states are politically marginalised but are not at the fringes of citizenship when it comes to their socio-economic rights, but some Roma, cannot prove their citizenship and so have no rights granted whatsoever. They find themselves in a space in-between where they do not fit the definition of either a citizen or a stateless person. I call this position a total infringement of citizenship. This chapter argues that Romani individuals are not only passive observers of this infringement, but they create alternative ways to access rights denied by states. It explores how states hinder access to citizenship for certain minorities through citizenship laws and other legislation. The chapter argues that statelessness is always a product of state intervention rather than the lack of it or the lack of interest of stateless minorities to regularise their status. It first scrutinises cases where Romani individuals have found themselves with hindered access to citizenship. It then compares the position of stateless Roma with that of other stateless minorities around the globe.

in The Fringes of Citizenship