Patients′ Rights and the National Health Service in Britain, 1960s–1980s

摘要

The language of rights has long permeated discussions about health care in Britain, but during the latter half of the 20th century, patients’ rights achieved a level of unprecedented prominence. By the end of the 1980s, the language of entitlement appeared to have spread into many areas of the National Health Service: consent to treatment, access to information, and the ability to complain were all legally established patients’ rights. Patient organizations played a critical role in both realizing these rights and in popularizing the discourse of rights in health care in Britain. “Rights talk,” however, was not without its drawbacks, as it was unclear what kinds of rights were being exercised and whether these were held by patients, consumers, or citizens. THE IDEA THAT PATIENTS HAVE rights in relation to health care is a powerful one, but it is a concept that has often generated problems when put into practice. As recent debates about health care reform in the United States make plain, both supporters and detractors of universal health care have been able to use the language of rights to make their case. 1 The application of rights to health is no less challenging, however, in countries that do have systems guaranteeing population-wide access, such as Britain with its National Health Service (NHS). In January 2009, the Labour government introduced the NHS Constitution for England , a document that set out a series of rights, responsibilities, and pledges designed to embody the “principles and values” that guide the NHS. Patients were told that they had 25 rights, encompassing areas such as access to health services; quality of care and the environment; access to nationally approved treatments; respect, consent, and confidentiality; informed choice; involvement in their own health care and the wider NHS; and complaint and redress. 2 The NHS Constitution , it was claimed, brought together “in one place for the first time in the history of the NHS what staff, patients and public can expect from the NHS.” 3 Although the introduction of the NHS Constitution was an important development in the reform of British health care under New Labour, it was certainly not the first attempt to formulate a list of patients’ rights, or to use these to shape the future of health services. From the 1960s onwards, a number of organizations claiming to represent the patient, such as the Patients Association, the Consumers’ Association, the National Consumer Council, and the Community Health Councils, drew on the language of rights to put forward their demands. Concerns about patients’ ability to complain, their access to information, and the presence of medical students during consultations and treatment were framed around the concept of rights. Patient organizations also expended much time and energy drawing up patients’ charters and guides to patients’ rights within the NHS. But where did this language of rights come from? What did it mean to talk about patients’ rights in the context of a collective health system like Britain’s NHS? In this article, I explore how the language of rights came to enter the discourse around British health care in the 1960s, and how it was developed and applied by patient groups in the 1970s and 1980s. Drawing on the papers of patient organizations, government records, newspapers, and medical journals, I suggest that although the language of patients’ rights held rhetorical power, putting such language into practice was to prove deeply problematic.