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

Easton, Ava, Atkin, Karl (orcid.org/0000-0003-1070-8670) and Hare, Philippa (2007) 'A light in a very dark place':The role of a voluntary organisation providing support for those affected by encephalitis. Neuropsychological Rehabilitation. pp. 638-647. ISSN 1464-0694

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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 insights into the challenges facing voluntary organisations as they manage twin roles as service providers and advocates, of people with neurological disorders. Two studies are presented: a review conducted by the Society, focusing on patient’s 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 provided support for the Association of British Neurologists’ recommendation for nationally agreed standards of care. The second study, a postal survey of recent contacts (n = 76) and in-depth telephone interviews (n = 22), illustrates the Society’s value role as a service provider and supports its role in helping rehabilitate affected individuals and their families. These studies provided the Society with information for policy and service development. Importantly, providing the basis of informed action and partnership with stakeholders and informing the organisation’s sense of purpose, in the changing context of welfare provision in the UK.

Item Type: Article
Copyright, Publisher and Additional Information: © 2007 Psychology Press. Uploaded in accordance with the publisher's self archiving policy. An author produced version of this paper will be openly available from August 2008.
Keywords: encephalitis,patient-centred care,voluntary organisations,and welfare provisionTraumatic brain-injury,Rehabilitation,UK,State,Model,Need
Institution: The University of York
Academic Units: The University of York > Health Sciences (York)
Depositing User: Ms Diana Hilmer
Date Deposited: 24 Oct 2007 13:43
Last Modified: 05 Jun 2016 00:01
Published Version: http://dx.doi.org/10.1080/09602010601155205
Status: Published
Refereed: Yes
URI: http://eprints.whiterose.ac.uk/id/eprint/3429

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