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Towards the emancipation of patients

Towards the emancipation of patients: Patients' experiences and the patient movement

Charlotte Williamson
Copyright Date: 2010
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  • Book Info
    Towards the emancipation of patients
    Book Description:

    Despite a policy focus on involving patients in health care and increasing patient autonomy, much covert coercion of patients takes place in everyday healthcare. This book, by a leading patient activist, examines for the first time how the patient movement, which works to improve the quality of healthcare, can actually be considered an emancipation movement when led by its radical elements. In this highly original book the author argues that radical patient groups and individual activists who repeatedly challenge or oppose some standards in healthcare, can be seen as working in the direction of freeing patients from coercion and from its associated injustice and inequality. Combining new academic theory with rich empirical evidence, the book explains how looking at healthcare from an emancipatory perspective could improve its quality as patients experience it. It will appeal to health professionals, managers, patient activists, policy makers and others concerned with the quality of healthcare.

    eISBN: 978-1-84742-746-5
    Subjects: Health Sciences, Sociology

Table of Contents

  1. Front Matter
    (pp. i-iv)
  2. Table of Contents
    (pp. v-v)
  3. List of figures and tables
    (pp. vi-vi)
  4. Glossary and abbreviations
    (pp. vii-ix)
  5. Preface
    (pp. x-xii)
    Charlotte Williamson
  6. ONE Introduction
    (pp. 1-12)

    In this book, I argue that the patient movement is an emancipation movement. This idea can seem shocking at first. It seems to deny that health professionals commonly act with expertise and skill, with kindness and care, and from a wish to do what is ethically right and morally good. The word emancipation calls to mind harsh and unwelcome ideas like oppression and injustice. Oppression and injustice can seem irrelevant to healthcare as many patients daily experience it. Moreover, in the UK, we rely on the health services not only to care for us when we need their care, but...

  7. TWO Setting the theoretical scene
    (pp. 13-32)

    Emancipation movements seek to throw off the fetters of coercion and constraint that are liable to be imposed by dominant social groups on subordinate social groups (Chapter One). In political language, they seek to free groups of people from oppression, from the unjust use of its power by a dominant group against a weaker one (Mansbridge, 2001a). This chapter shows that patients can be subject to domination and oppression, then discusses Alford’s political theory and some other political concepts that can help us to understand domination and oppression, and related concepts like repression, as they can affect patients.

    Emancipation movements...

  8. THREE The patient movement
    (pp. 33-46)

    This chapter defines the patient movement and looks briefly at its early history, then at the diversity of today’s patient groups and at a radical–non-radical or conservative dimension that influences the positions groups take on various issues in healthcare. It suggests that the radical part of the patient movement is so similar to recognised emancipation movements that the patient movement can be seen as an emancipation movement in itself, albeit an immature one. It defines patient emancipation and discusses why the patient movement has not been seen as an emancipation movement. Social groups who have experienced oppression outside healthcare...

  9. FOUR Radicalisation
    (pp. 47-68)

    This chapter looks at the founding of six radical patient groups between 1960 and 1998, as recounted in their founders’ own words, and at the radicalisation of two individual radical patient activists. The groups and individuals were a convenience sample of groups and individuals whom I knew to be strongly radical. All challenged the status quo of dominant interest holders’ ways of doing things, their practices and standards. All challenged them in the direction of increasing patients’ freedom from coercion and freedom to choose how to act. From these eight accounts, we can see that the conditions that social scientists...

  10. FIVE Radical activists’ new knowledge
    (pp. 69-90)

    Activists’ decision that something needs to be done to oppose low standards of care or oppressive practices and to propose higher standards instead means that they have to assemble evidence and argument to make their case. They have to draw on the knowledge they have built up, their new knowledge. This chapter analyses what new knowledge consists of, and gives two detailed examples of new knowledge and of how activists use it.

    All social groups build up a knowledge base unique to their group, drawn from their experiences, perceptions and insights (Baggott et al, 2005). Radical groups and individuals search...

  11. SIX Values, principles and standards
    (pp. 91-108)

    This chapter looks at the principles that radical patient activists want to see guiding healthcare, principles expressed through standards of care. Patient autonomy is a fundamental value for activists and they identify new issues and press for higher standards in directions that support it. Activists work, that is, for standards that are emancipatory, progressively freeing patients from coercion and enlarging their opportunities for self-determination.

    Healthcare is given through a multitude of ways of doing things, practices. Each practice can be given a prescriptive value, that is, made into a standard (Williamson, 1987). So standards are detailed rules about how to...

  12. SEVEN The ten principles
    (pp. 109-134)

    This chapter discusses the ten principles named in the last chapter: respect, equity, access, information, safety, choice, shared decision making, support, representation and redress.

    What upsets me most is when the public are saying “what we need is respect and dignity”. If we are not doing that, what the hell are we doing?(Lord Darzi, surgeon, 2008, in Whitworth, 2008, p 5)

    Respect comes from the root to look back at, to regard, and means to esteem or honour (Brown, 1993). In healthcare,respect means seeing patients as morally equal to oneself as well as treating them with courtesy and...

  13. EIGHT Conflict and schism
    (pp. 135-156)

    The patient movement is fragmented and split, and so politically weak (Chapter Three). Conflicts among patient groups and between individual activists make it difficult for groups to work together as a unified movement. This chapter suggests that the radical–conservative dimension, the differences between radical and conservative convictions, lies behind some of these conflicts. Some conflicts seem so recurrent and so intractable as to suggest schism in the patient movement.

    The lack of an ideology in the patient movement means that patient activists working to improve patient care or called on to speak for patients’ interests in advisory or policy-making...

  14. NINE Allies and antagonists
    (pp. 157-180)

    Doctors can be radical patient activism’s best friends or worst enemies. This chapter looks at radical doctors and at conservative doctors, the allies and antagonists of the title. Most doctors are conservative to varying degrees, accepting the status quo; they tend to be antagonistic towards radical patient activism. A minority of doctors are radical, questioning the status quo; they tend to support radical patient activists’ ideas and definitions of higher standards. These differences are little recognised, either in general or when doctors and patient activists work together to formulate new standards of care. Three examples are drawn on to explore...

  15. TEN Achievements and failures
    (pp. 181-198)

    Tracing and assessing radical patient activism’s successes and failures in opposing specific widely accepted policies, practices and standards and in securing higher ones is difficult. Its successes become absorbed into taken-for-granted practice. Proposed new standards are accepted or rejected at different rates in different places (Williamson, 1987), and some of radical patient activism’s failures eventually become successes. This chapter looks at the origins of some standards and at the influence of patient activism’s principles on other people concerned with healthcare: patients, health professionals, corporate rationalisers and reformers unconnected with the patient movement. It then looks at radical activists’ effects on...

  16. ELEVEN What next?
    (pp. 199-214)

    Radical patient activists have established the principles they wish to see expressed through the values given to standards of treatment and care. In Chapter Six I noted that two basic principles of recognised emancipation movements,justiceandequality, have not been adopted as principles by radical patient activists. In this chapter, I show that they are already implicit in radical patient activism’s principles. I suggest that it is time they were made explicit. That would flag up radical patient activism, and hence the patient movement, as an emancipation movement. That could be scary, for emancipation movements arouse hostility at first....

  17. APPENDIX: The principal component analysis
    (pp. 215-218)
  18. References
    (pp. 219-246)
  19. Index
    (pp. 247-254)
  20. Back Matter
    (pp. 255-255)