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.

British soldiers as complementary practitioners in the First World War
Georgia McWhinney

The First World War patient is a well-known concept for most medical historians. Soldiers’ healthcare in the Great War has been documented by numerous historians who each present a unique view of the patient. Yet often, these patient studies are a mirror for biomedicine, reflecting on the workings of official healthcare. Distancing the patient from biomedicine allows the historian a new approach. Soldiers in the Great War were not only patients, but also complementary practitioners. Soldiers’ letters, diaries and oral histories provide first-hand accounts of the conditions in the trenches and the diseases they spurred. Men’s accounts convey soldiers’ understanding of their health and bodies as well as their unique medical practices. By re-framing the way in which we approach the patient, we are able to garner new understandings of past healthcare, and ask who is a medical practitioner and what constitutes a healthcare system?

in Patient voices in Britain, 1840–1948
Evidence from the Victorian poor, 1834–71
Paul Carter and Steve King

This chapter challenges the widely held assumption that the voices of the very poorest of the sick are difficult and sometimes impossible to find. Drawing on material from a project which identifies such voices in the central administrative records of the New Poor Law, the chapter shows how often and with what force the sick poor were able to express their views on the medical welfare (broadly defined) offered to or imposed upon them. Few of these paupers and prospective paupers constructed their identities in terms of ‘being a patient’, except perhaps in the titular sense of entering or leaving the infirmary wards of workhouses. Rather, they thought and wrote of themselves as sick fathers, mothers, sons, daughters, citizens and members of the community from which they were drawn. Nonetheless, in a modern sense they were patients and the chapter shows how such people contested aspects of the medical welfare system both at the local level and through correspondence with the national administrative body for the New Poor Law. They were, perhaps surprisingly, often ‘successful’ in their contestation, displaying an agency that is rarely attributed to the very poorest in nineteenth- and early twentieth-century English and Welsh society. More than this, many of the issues that the poor and their advocates contested (who should decide when someone was sick enough to receive treatment; how far might it be reasonable to travel for medical care; and how responsive should healthcare systems be to the wishes of those who used them) have a striking resonance with the sorts of issues raised by and complained about by modern patients and patient groups.

in Patient voices in Britain, 1840–1948
Editors: Anne Hanley and Jessica Meyer

In 1985 Roy Porter called for patients to be retrieved from the margins of history because, without them, our understanding of illness and healthcare would remain distorted. But despite concerted efforts, the innovation that Porter envisaged has not come to pass.

Patient voices in Britain repositions the patient at the centre of healthcare histories. By prioritising the patient’s perspective in the century before the foundation of the National Health Service, this edited collection enriches our understanding of healthcare in the context of Britain’s emerging welfare state. Encompassing topics like ethical archival practice, life within institutions, user-driven medicine and the impact of shame and stigma on health outcomes, its chapters encourage historians to reimagine patienthood. It provides a model for using new sources and reading familiar sources in new ways. And, exploring traditional clinical spaces and beyond, it interrogates what it meant to be a patient and how this has changed over time.

Crucially, the collection also aims to help historians locate and develop policy relevance within their work, reflecting on how these historical tensions continue to shape attitudes towards health, illness and the clinical encounter. Each chapter presents a framework for using history to speak to pressing policy issues.

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
Abstract only
How listing armed groups as terrorists hurts negotiations

"Proscribing peace is the first book to take a systematic look at the impact of proscription on peace negotiations based on deep empirical research. With rare access to actors during the Colombian negotiations with the Revolutionary Armed Forces of Colombia People’s Army (FARC for its Spanish acronym), the book argues that proscription has made pre-negotiations harder and more prolonged.

The book critically revisits and extends central concepts of the pre-negotiation literature: vilification, symmetry and ripeness. It develops a new concept, the ‘linguistic ceasefire’, to understand how negotiations still take place in an age of proscription. The ‘linguistic ceasefire’ has three main components: 1) recognize the conflict, 2) drop the ‘terrorist’ label and 3) uncouple the act and the actor. It removes the symbolic impact of proscription, even if de-listing is not possible ahead of negotiations.

With relevance for more than half of the conflicts around the world in which an armed group is listed as a terrorist organisation, this concept can help explain why certain conflicts remain stuck in the ‘terrorist’ framing while others emerge from it. International proscription regimes criminalise both the actor and the act of terrorism. The book calls for an end to this amalgamation between acts and actors. By focussing on the acts instead, international policy would be better able to consider the violent actions both of armed groups and those of the state. By separating the act and the actor, change -- and thus peace -- become possible.

Sophie Haspeslagh

The chapter takes a perceptive understanding of power and delves into how each party perceived the shifts in their status and resources. Drawing on interview data, it explores how proscription affected the nature of the asymmetry and how this asymmetry was adjusted during the two pre-negotiations between the Colombian government and the FARC. It assesses how proscription shifted the multiple sources of power at the disposal of the government and the armed group. The chapter argues that international proscription sharply heightened the power of the government and shifted the burden of proof to the proscribed armed group in such a way that they were effectively asked to surrender.

in Proscribing peace
The importance of the ‘linguistic ceasefire’
Sophie Haspeslagh

Chapter 3 sets out an analytical framework to explore how the international listing of armed groups as ‘terrorists’ might affect the process through which conflict parties get to the negotiation table. Drawing mainly on the peace and conflict literature, the chapter then details the three key dynamics that are needed for conflict parties to start negotiating: 1) moving from vilification to de-vilification; 2) moving from asymmetry to establishing a perception of symmetry; 3) perceiving a mutually hurting stalemate and the need to seek a way out. Revisiting the key concepts in turn, the chapter assesses how proscription might affect these central processes.

in Proscribing peace
The impact of counter-terrorism policy on civil society in the EU
Scott N. Romaniuk, Ákos Baumgartner, and Glen M. E. Duerr

This chapter examines the role of CSOs pan-Europe in countering terrorist attacks, as well as the implications of counter-terrorism on these organizations. Specifically, it investigates four countries in Central Europe as a means to viewing their actions toward counter-terrorism and briefly explore a fifth case in southeastern Europe. The four primary countries provide a sense of procedures and effects in vulnerable European countries. They include: Slovenia, Hungary, Slovakia, and Romania. Interestingly, three of the four countries joined the EU in 2004 with the EU-25 enlargement; the fourth, Romania, in 2007 with the EU-27 enlargement. This chapter builds upon comparative work linking counter-terrorism and CSOs also examining multiple case studies, across different sections of the world.

in Counter-terrorism and civil society