Running Out of Time: the Experience of Living with a Neurological Condition

Ferrie, J. (2018) Running Out of Time: the Experience of Living with a Neurological Condition. 13th World Conference on Neurology and Neuromuscular Disorders, Frankfurt, Germany, 01-02 Oct 2018.

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Abstract

Statement of the Problem: Adults diagnosed with Motor Neurone Disease (MND) and similar neurological conditions face a time-limited future with few treatment options and no cure. Their experience of receiving a diagnosis is distressing, even when ‘given well’. Distress is exacerbated by waiting times, notions of illegitimacy, progressive and frightening symptoms. This paper draws on a number of studies, using phenomenological qualitative interviews of over 50 families (around 10% of families who live with MND in Scotland) since 2011. The research draws on the social model of disability, to determine where barriers to being and doing are constructed for participants, and what can be done to remove them. It will reflect particularly on experiences of diagnosis and use Bury’s notion of biographical disruption to examine the impact of this on identity. Further this paper will draw on a recent evaluation of the Speak Unique project (voice-banking, and restoration to produce personalized voices) and the value of participating in medical research. Findings: The families who participated unanimously reported difficult experiences of diagnosis. Many struggled to have symptoms taken seriously, to access neurological services, most waited over a year to be diagnosed, many felt consultants avoided a diagnosis, and some felt abandoned following diagnosis. In contrast, participants who were taken seriously, with a shorter wait to diagnosis (<6 months) and met with a neurological nurse around the time of diagnosis, were less ‘disrupted’. Being aware of, and involved in research opportunities gave participants a sense of ‘doing’ that enabled a recovery of identity. Conclusion & Significance: Professionals working with, and for, adults with neurological conditions, particularly MND, are fully aware of the brutality of these conditions. This paper contributes to wider understandings of how families cope outside of medicalized spaces, and what support they need, above what is currently available.

Item Type:Conference or Workshop Item
Additional Information:Invited Speaker.
Keywords:MND, diagnosis, neuromuscular, biographical disruption, illness narrative.
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Ferrie, Dr Jo
Authors: Ferrie, J.
Subjects:H Social Sciences > HM Sociology
H Social Sciences > HN Social history and conditions. Social problems. Social reform
R Medicine > RA Public aspects of medicine
College/School:College of Social Sciences > School of Social and Political Sciences
Copyright Holders:Copyright © 2018 The Author
Publisher Policy:Reproduced with the permission of the Author
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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
76089Futures MNDJo FerrieUNSPECIFIED