Feeling the benefit : fluctuating illness and the world of welfare

Price, Elizabeth; Walker, Liz; Booth, Sara

Abstract

This article explores the experiences of people living with fluctuating long-term conditions, with a particular focus on the UK welfare benefits system. Respondents in this study suggested that this system constitutes a critical barrier to maintaining a positive work-based identity, being characterised by assessment and decision-making processes that are inappropriately focused and inflexibly implemented. Here, we report the findings from a cross sectional online study of people aged 18 to 75+, resident in the UK, with a self-reported diagnosis of lupus, arguably, the archetypal fluctuating condition. We explore some of the key themes respondents living with lupus identified in the context of striving to maintain a sense of themselves as productive and functional citizens. We conclude that there is a critical lack of attention afforded to the experience of fluctuating illness within the State benefits system and offer some strategies for better understanding, and addressing, this issue.

Citation

Price, E., Walker, L., & Booth, S. (2020). Feeling the benefit : fluctuating illness and the world of welfare. Disability and society, 35(8), 1315-1336. https://doi.org/10.1080/09687599.2019.1680346

• Journal Article Type: Article
• Acceptance Date: Sep 23, 2019
• Online Publication Date: Oct 31, 2019
• Publication Date: Sep 13, 2020
• Deposit Date: Dec 9, 2019
• Publicly Available Date: May 1, 2021
• Journal: Disability and Society
• Print ISSN: 0968-7599
• Electronic ISSN: 1360-0508
• Publisher: Taylor and Francis
• Peer Reviewed: Peer Reviewed
• Volume: 35
• Issue: 8
• Pages: 1315-1336
• DOI: https://doi.org/10.1080/09687599.2019.1680346
• Keywords: Lupus; Fluctuation; Welfare benefits; Work-based identity
• Public URL: https://hull-repository.worktribe.com/output/2950486
• Publisher URL: https://www.tandfonline.com/doi/full/10.1080/09687599.2019.1680346
• Additional Information: Received: 2019-01-25; Revised: 2019-08-06; Accepted: 2019-09-23; Published: 2019-10-31
• Contract Date: Dec 9, 2019