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Constructing ‘exceptionality’: a neglected aspect of NHS rationing

David Hughes, Shane Doheny

Sociology of Health and Illness, Volume: 41, Issue: 8, Pages: 1600 - 1617

Swansea University Author: David Hughes

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DOI (Published version): 10.1111/1467-9566.12976

Abstract

The principle of exceptionality involves assessing whether a patient is sufficiently different from the generality of patients to justify providing a treatment, such as an expensive cancer drug, not approved for routine funding. In England, individual requests for certain high-cost treatments are co...

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Published in: Sociology of Health and Illness
ISSN: 0141-9889 1467-9566
Published: Wiley 2019
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa50556
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first_indexed 2019-06-05T11:07:48Z
last_indexed 2020-10-20T03:00:59Z
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spelling 2020-10-19T13:13:35.5241323 v2 50556 2019-05-29 Constructing ‘exceptionality’: a neglected aspect of NHS rationing f1fbd458e3c75d8b597c0ac8036f2b88 David Hughes David Hughes true false 2019-05-29 FGMHL The principle of exceptionality involves assessing whether a patient is sufficiently different from the generality of patients to justify providing a treatment, such as an expensive cancer drug, not approved for routine funding. In England, individual requests for certain high-cost treatments are considered by funding request panels that examine exceptionality alongside treatment efficacy and cost as the main criteria for funding. This was also the case in Wales until September 2017. Our paper draws on audio recordings of panel meetings and interviews in a Welsh Health Board to investigate how exceptionality was constructed in discussions. It focuses on the combination of different decision criteria in meeting talk, particularly regarding the discourses associated with efficacy and exceptionality. Exceptionality is a malleable category that raised questions about the evidence-based nature of panel decision making. For example, the paper discusses the use of subgroup data from trials and the difficulty of deciding how small a subgroup of patients should be before it is deemed exceptional. Determining exceptionality has been a key mechanism for deciding that a minority of NHS patients can still receive high-cost treatments not routinely provided for all. As a neglected rationing mechanism. Journal Article Sociology of Health and Illness 41 8 1600 1617 Wiley 0141-9889 1467-9566 rationing; individual patient funding requests; evidence-based medicine; exceptionality; clinical effectiveness 1 11 2019 2019-11-01 10.1111/1467-9566.12976 http://dx.doi.org/10.1111/1467-9566.12976 COLLEGE NANME Medicine, Health and Life Science - Faculty COLLEGE CODE FGMHL Swansea University NIHR 2020-10-19T13:13:35.5241323 2019-05-29T09:40:53.3855230 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health David Hughes 1 Shane Doheny 2 0050556-10072019151921.pdf 50556.pdf 2019-07-10T15:19:21.3800000 Output 334583 application/pdf Accepted Manuscript true 2020-06-20T00:00:00.0000000 true eng
title Constructing ‘exceptionality’: a neglected aspect of NHS rationing
spellingShingle Constructing ‘exceptionality’: a neglected aspect of NHS rationing
David Hughes
title_short Constructing ‘exceptionality’: a neglected aspect of NHS rationing
title_full Constructing ‘exceptionality’: a neglected aspect of NHS rationing
title_fullStr Constructing ‘exceptionality’: a neglected aspect of NHS rationing
title_full_unstemmed Constructing ‘exceptionality’: a neglected aspect of NHS rationing
title_sort Constructing ‘exceptionality’: a neglected aspect of NHS rationing
author_id_str_mv f1fbd458e3c75d8b597c0ac8036f2b88
author_id_fullname_str_mv f1fbd458e3c75d8b597c0ac8036f2b88_***_David Hughes
author David Hughes
author2 David Hughes
Shane Doheny
format Journal article
container_title Sociology of Health and Illness
container_volume 41
container_issue 8
container_start_page 1600
publishDate 2019
institution Swansea University
issn 0141-9889
1467-9566
doi_str_mv 10.1111/1467-9566.12976
publisher Wiley
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
url http://dx.doi.org/10.1111/1467-9566.12976
document_store_str 1
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description The principle of exceptionality involves assessing whether a patient is sufficiently different from the generality of patients to justify providing a treatment, such as an expensive cancer drug, not approved for routine funding. In England, individual requests for certain high-cost treatments are considered by funding request panels that examine exceptionality alongside treatment efficacy and cost as the main criteria for funding. This was also the case in Wales until September 2017. Our paper draws on audio recordings of panel meetings and interviews in a Welsh Health Board to investigate how exceptionality was constructed in discussions. It focuses on the combination of different decision criteria in meeting talk, particularly regarding the discourses associated with efficacy and exceptionality. Exceptionality is a malleable category that raised questions about the evidence-based nature of panel decision making. For example, the paper discusses the use of subgroup data from trials and the difficulty of deciding how small a subgroup of patients should be before it is deemed exceptional. Determining exceptionality has been a key mechanism for deciding that a minority of NHS patients can still receive high-cost treatments not routinely provided for all. As a neglected rationing mechanism.
published_date 2019-11-01T04:02:03Z
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