‘A light in a very dark place’: The role of a voluntary organisation providing support for those affected by encephalitis

Abstract

Voluntary organisations are seen as contributing to the “democratisation” of health and social care. Little, however, is written about their role and this paper, by focusing on the work of the Encephalitis Society, provides valuable insights into the challenges facing voluntary organisations that represent the needs of those with neurological disorders. Two empirical studies are presented: a review conducted by the Society, focusing on patients' experiences of neurological services; and an external evaluation of the Society's current provision. The first, based on a postal survey of its members affected by encephalitis (n = 339), illustrates the Society's advocacy role. The survey specifically supports the Association of British Neurologists' recommendation for nationally agreed standards of care. The second study, based on a postal survey of recent contacts (n = 76) and in-depth telephone interviews (n = 22), demonstrates the Society's value as a service provider and its role in helping to rehabilitate affected individuals and their families. In responding to these findings, the Encephalitis Society is reminded of the importance of maintaining credibility among its members as well as health care providers. Developing strategies, on the basis of informed action and partnership working with service champions, continues to inform the organisation's sense of purpose, as it responds to the changing context of welfare provision in the UK.

Acknowledgments

We would like to thank the members of the Encephalitis Society who gave their time to complete the postal survey and questionnaire, and especially those who agreed to be interviewed about their experiences. We would also like to thank Alison Dowell for entering the data and Kate Grayson (Statistics by Design) for advice on statistical analysis. Finally, the suggestions of the editors (Bonnie-Kate Dewar and Huw Williams) and comments of the three reviewers were especially helpful in re-writing the paper.