History
The Introduction lays out the collection’s efforts to reposition the patient at the centre of healthcare histories, providing a model for using new types of sources and reading familiar sources in new ways to draw out patient experiences. It explores a number of the key themes that are addressed throughout the collection, including user-driven medicine and the impact of shame and stigma on health outcomes, and the emergence of vernacular medical knowledge. The Introduction also sets out how the collection aims to help historians locate and develop contemporary healthcare relevance within their work, reflecting on how these historical tensions continue to shape attitudes towards health, illness and the clinical encounter. Each chapter in this collection presents a framework for understanding how this might be accomplished within specific historical case studies and in reference to related, pressing policy issues.
This comparative study examines the emergence and political significance of lunatics’ rights activism in Europe between 1870 and 1920. In writing the history of the criticism of psychiatry, scholars have so far mainly focused on the second half of the twentieth century. This chapter, however, shows that the decades around 1900 already saw a widespread criticism ‘from below’ accompanying the professionalisation and modernisation of European psychiatry. The comparative analysis of the careers of two key campaign leaders, Louisa Lowe (1820–1901) in England and Adolf Glöklen (1861–c.1935) in Germany, reveals the similarities and differences in their motives, ways of campaigning, mobilisation success and political agency at the individual and collective level. Drawing on concepts from the political sociology of social movements and disability history, the chapter highlights the connections between early lunatics’ rights activism and socio-historical categories like ‘class’, ‘gender’ and ‘body’ and identifies these campaigns as political predecessors of the contemporary consumer/survivor/ex-patient movement.
Asylum and hospital farms, the agricultural land managed by psychiatric institutions and on which some patients worked, represented transitional spaces between the institution and the wider community, which are pivotal to understanding nuanced experiences of patients. Patient experiences of work were typically mediated through an institutional lens, which arguably silenced the patient voice. This chapter extrapolates patient experiences of farm work from case notes, demonstrating how patients played an active role in ‘narrating’ their experiences through actions, reactions, behavioural traits and occupational identities and thus ‘navigating’ institutional space. These experiences were nuanced, non-linear and inconclusive, and as such do not coincide neatly with the institutional rhetoric of work and its health and economic benefits.
Since Roy Porter’s pioneering work on the ‘patient’s view’, historians have taken up the challenge to rewrite medicine’s past ‘from below’. However, this chapter argues that they have not been radical enough and have neglected a key part of Porter’s agenda for the new social history of medicine. He wrote: ‘We should stop seeing the doctor as the agent of primary care. People took care before they took physick. What we habitually call primary care is in fact secondary care, once the sufferer has become a patient, [and] has entered the medical arena.’ In other words, the beliefs, behaviour and actions of sick people who did not go to the doctor and remained ‘non-patients’. To explore the ‘non-patient’s view’, we have to look beyond self-care and the use of proprietary remedies and alternative medicine. The sociological term of the ‘symptom iceberg’, which refers to the aches and ailments that never reach the doctor, is used as a guide. In turn, historical examples to the following responses to symptoms are discussed: doing nothing; prayer; finding information; looking to family and friends; over-the-counter medicines. The chapter suggests how historians can research the ‘non-patient’s view’, by interrogating familiar sources in new ways and finding novel sources, many of which will have previously been regarded as non-medical. Finally, the chapter considers the policy implications of this work in terms of recent attempts to ease pressures on healthcare systems that encourage people ‘not to see the doctor’ and opt for self-care.
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?
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 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.
This chapter explores the interrelationships between embodied knowledge and assistive technology. Its primary focus is on interwar developments to respiratory technologies in Britain, but explores more broadly the extent to which consideration of users and user involvement has featured in the design of various technologies to facilitate breathing. The chapter uses under-utilised primary sources from the National Archives and the Royal Institution to examine mechanical respirators such as the Bragg-Paul Pulsator, then develop this user-focused framework to consider the later rise of ambulatory oxygen for home use. Considering how users have mattered in respiratory assistive technology highlights the problems with prosthetic designs which fail to consider the full social worlds of the user. Understanding these problems necessitates awareness of the longer history of their development and the longer-term problems inherent to ownership of the air. This relates to the politics of nationalised healthcare because ambulatory oxygen was outsourced from NHS pharmacy control in 2006. The chapter therefore concludes with a discussion of how standardised technology currently affects diverse users’ ability to engage with assistive technologies.
Hospital acquired infection (HAI] - referred to as ‘nosocomial’ infection in US terminology - emerged as a specific policy concern in the mid-twentieth century, although it has a much longer lineage. This chapter uses a comparative Anglo-American perspective to repositions the debate on the history of HAIs, which has to date been focused on scientific understanding of infection through the use of evolutionary paradigms, the development of new approaches such as clinical epidemiology and the enduring fascination with the discovery, use and abuse of antibiotics and associated rise of antimicrobial resistance (AMR). Some of this historical research has marginalised or ignored (by choice or ignorance) the key issue that health care is an economic, as well as a scientific-clinical activity. These lacunae are particularly evident when historians discuss how responses to HAIs resulted in the formation of protocols and teams, which they invariably articulate as comprised of clinical/technical staff (surgeons, physicians, nurses, microbiologists and epidemiologists). There has been minimal recognition that hospital administrators and managers could (and did) play key roles in these developments because of the significant and increasing impact of HAIs on hospital costs, arising in part through concerns about length of patient stay, and through the roles of insurance companies in the Unites States and economists at national policymaking levels in the UK.
This volume shows how history can enrich our understanding of current issues of hospital infection control, including AMR, and inform perspectives on the future. For example, while efforts to develop new classes of antimicrobial drugs are undoubtedly important, they should not overshadow the financial, personnel and governance methods necessary to maintain high standards of infection control in the hospital environment, which have proven successful in recent years. The essays in this volume have shown the value historical understandings of the past can bring to modern day concerns, as well as the ways history has been misused to justify the notion of ‘progress’.