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Keywords:

  • new social movement;
  • health consumers;
  • protest groups;
  • lay knowledge;
  • public participation

Abstract

This paper argues that a health consumer movement has developed in the United Kingdom over the last decade. Drawing on two empirical studies of groups that promote and/or represent the interests of patients, users and carers, it argues that groups formed by people with personal experience of a condition are now more widespread. Feelings of pain and loss can lead to the identification of others in a similar position, and to the formation of groups and action in the political sphere. Research shows that groups share a common discourse and follow similar participative practices, and there is extensive networking. Informal and formal alliances have formed to pursue joint action and indicate a wider health consumer movement. As governments have also increased the opportunities for participation, this has the potential for patients and carers to shape services in ways more responsive to their needs.