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Employment Experiences of Those Living With and Being Treated For Hepatitis C: Seeking Reasonable Adjustments and the Role of Disability Legislation

Published online by Cambridge University Press:  24 August 2015

Heather Mack  and
Ian Paylor
Heather Mack
Affiliation:
Department of Sociology, University of Lancaster E-mail: [email protected]
Ian Paylor
Affiliation:
Department of Sociology, Lancaster University E-mail: [email protected]
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Abstract

Accounts of employment experience with Hepatitis C (HCV) are scarce, particularly within a UK context where few qualitative studies are available. This article reports on a piece of empirical work which sought to explore the experiences of living with HCV in the UK, out of which the experience of employment emerged. Two standout areas of discussion in this article are the degree to which individuals felt protected in disability legislation (i.e. the Disability Discrimination Act, 1995, 2005, now part of the Equality Act 2010) and their experiences of receiving reasonable adjustments in the workplace. This research highlights the apparent lack of acknowledgement that HCV can affect employment and indeed that the difficulties faced by those with HCV are shared by other disabled people. The findings here suggest that where workplaces facilitate or allow reasonable adjustments employees were able to take up the potential that allowed them to work in sustainable ways.

Keywords

Disabilityhepatitis Creasonable adjustmentswork
Type
Articles
Information
Social Policy and Society , Volume 15 , Issue 4 , October 2016 , pp. 555 - 570
Copyright
Copyright © Cambridge University Press 2015 

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References

Anti-Discrimination Board of New South Wales (2001) C Change: Report of the Enquiry into Hepatitis C Related Discrimination, http://www.lawlink.nsw.gov.au/lawlink/adb/ll_adb.nsf/pages/adb_hepatitis_c_enquiry, [accessed 30.09.2011].Google Scholar
Barnes, C. (2003) Disability: The Organisation of Work and the Need for Change, http://disability-studies.leeds.ac.uk/files/library/Barnes-OECD-Statement.pdf [accessed 01.06.2013].Google Scholar
Blasiole, J. A., Shinkunas, L., LaBreque, D. R., Arnold, R. M. and Zickmund, S. L. (2006) ‘Mental and physical symptoms associated with lower social support for patients with hepatitis C’, World Journal of Gastroenterology, 12, 29, 4665–72.Google Scholar
Bruyere, S. M., Erickson, W. A. and VanLooy, S. (2004) ‘Comparative study of workplace policy and practices contributing to disability non-discrimination’, Rehabilitation Psychology, 29, 1, 28–38.Google Scholar
Citizens Advice Bureau (2013) Universal Credit: The Claimant Commitment, http://www.adviceguide.org.uk/wales/benefits_w/benefits_welfare_benefits_reform_e/benefits_uc_universal_credit_new/benefits_uc_claiming_universal_credit/uc95_uc_the_claimant_commitment.htm [accessed 20.10.2013].Google Scholar
Conrad, S. and Garrett, L. E., Cooksley, G. E., Dunne, M. and Macdonald, G. (2006) ‘Living with chronic hepatitis C “means you just haven't got a normal life any more”’, Chronic Illness, 2, 2, 121–31.Google Scholar
Crockett, B. and Gifford, S. (2004) ‘“Eyes wide shut”: narratives of women living with hepatitis C in Australia’, Women and Health, 39, 4, 117–37.CrossRefGoogle ScholarPubMed
Crofts, N., Louie, R. and Loff, B. (1997) ‘The next plague: stigmatisation and discrimination related to the hepatitis C virus infection in Australia’, Health and Human Rights, 2, 2, 87–97.Google Scholar
Crooks, V. A., Owen, M. and Stone, S. (2012) ‘Creating a (more) reflexive Canadian disability studies: our team's account’, Canadian Journal of Disability Studies, 1, 3, 45–65.CrossRefGoogle Scholar
Crooks, V. A., Stone, S. and Owen, M. (2011) ‘Enabling university teaching for Canadian academics with multiple sclerosis through problem focused coping’, Canadian Journal of Occupational Therapy, 78, 1, 45–49.CrossRefGoogle ScholarPubMed
Department for Work and Pensions (2013a) Improving the Work Capability Assessment, https://www.gov.uk/government/policies/simplifying-the-welfare-system-and-making-sure-work-pays/supporting-pages/improving-the-work-capability-assessment [accessed 30.12.2013].Google Scholar
Department for Work and Pensions (2013b) Housing Benefit Cap Factsheet, http://www.dwp.gov.uk/docs/benefit-cap-factsheet.pdf [accessed 01.06.2013].Google Scholar
Dibben, P., James, P. and Cunningham, I. (2001) ‘Senior management commitment to disability: the influence of legal compulsion and best practice’, Personnel Review, 30, 4, 454–67.Google Scholar
Duff, A. and Ferguson, J. (2012) ‘Disability and the professional accountant: insights from oral histories’, Accounting, Auditing and Accountability Journal, 25, 1, 71–101.Google Scholar
Duff, A., Ferguson, J. and Gilmore, K. (2007) ‘Issues concerning the employment and employability of disabled people in UK accounting firms: an analysis of human resource managers as employment gatekeepers’, The British Accounting Review, 39, 1, 15–38.CrossRefGoogle Scholar
Edwards, J. and Boxall, K. (2010) ‘Adults with cystic fibrosis and barriers to employment’, Disability and Society, 25, 4, 441–53.Google Scholar
Equality and Human Rights Commission (EHRC) (2012) Working Better: The Perfect Partnership Workplace Solution for Disabled People and Business, http://www.equalityhumanrights.com/sites/default/files/documents/Employers/wb_approved_lo.pdf.Google Scholar
Foster, D. (2007) ‘Legal obligation or personal lottery? Employee experiences of disability and the negotiation of adjustments in the public sector workplace’, Work Employment and Society, 21, 1, 67–84.Google Scholar
Foster, D. and Fosh, P. (2010) ‘Negotiating “difference”: representing disabled employees in the British workplace’, British Journal of Industrial Relations, 48, 3, 560–82.Google Scholar
Foster, G. (2008) ‘Injecting drug users with chronic Hepatitis C: should they be offered antiviral therapy?’, Addiction, 1039, 1412–3.CrossRefGoogle Scholar
Fried, M. W. (2002) ‘Side effects of hepatitis C therapy and their management’,Hepatology, 36, 5, s237–44.Google ScholarPubMed
Fry, M. and Bates, G. (2012) ‘The task of self-managing hepatitis C: the significance of disclosure’, Psychology and Health, 27, 4, 460–74.Google Scholar
Garthwaite, K., Bambra, C. and Warren, J. (2013) ‘The unwilling and the unwell’? Exploring stakeholders’ perceptions of working with long-term sickness benefits recipients’, Disability and Society, 28, 8, 1104–17.CrossRefGoogle Scholar
Griffin-Basas, C. (2010) ‘The new boys: women with dsabilties and the legal profession’, Berkley Journal of Gender, Law and Justice, 25, 1, 32–124.Google Scholar
Harris, M., Jolly, E., Martin, A., Wells, H. and Rhodes, T. (2012) Barriers and Facilitators to Hepatitis C Treatment for People who Inject Drugs: A Qualitative Study, Copenhagen: World Health Organisation Regional Office for Europe, http://www.euro.who.int/en/health-topics/communicable-diseases/hivaids/publications/2012/barriers-and-facilitators-to-hepatitis-c-treatment-for-people-who-inject-drugs.-a-qualitative-study [accessed 18.06.2015].Google Scholar
Health Protection Agency (2012) Hepatitis C in the UK: The Health Protection Agency Annual Report, London: Health Protection Agency, http://www.hpa.org.uk/webc/HPAwebFile/HPAweb_C/1317135237219 [accessed 01.07.2013].Google Scholar
Hepatitis C Trust (2011) Benefits: An Introduction, http://www.hepctrust.org.uk/Support/Benefits/Benefits+introduction [accessed 12.10.2011].Google Scholar
HM Government (2013) Equality Act 2010: Guidance, https://www.gov.uk/equality-act-2010-guidance [accessed 30.05.2014].Google Scholar
Hopwood, M. and Treloar, C. (2005) ‘The experience of interferon based treatments for hepatitis C infection’, Qualitative Health Research, 15, 5, 635–46.Google Scholar
Hopwood, M., Nakamura, T. and Treloar, C. (2010) ‘Disclosing hepatitis C infection within everyday contexts: implications for accessing support and healthcare’, Journal of Health Psychology, 15, 6, 811–18.CrossRefGoogle ScholarPubMed
Hoque, K. and Noon, M. (2004) ‘Equal opportunities policy and practice in Britain: evaulating the “empty shell” hypothesis’, Work, Employment and Society, 18, 3, 481–506.Google Scholar
Jafari, S., Copes, R., Baharlou, S., Etminan, M. and Buxton, J. (2010) ‘Tattooing and the risk of transmission of hepatitis C: a systematic review and meta-analysis’, International Journal of Infectious Diseases, 14, 11, e928–40.Google Scholar
Keane, H. (2011) ‘Drugs that work: pharmaceutical and performance self-management’, in Fraser, S. and Moore, D. (eds.), The Drug Effect; Health Crime and Society, Melbourne: Cambridge University Press, pp. 106–21.Google Scholar
Mack, H. (2007) Evaluating Harm Reduction Responses to Hepatitis C, Social Work Monographs: Norwich, School of Social Work and Psychological Studies, University of East Anglia.Google Scholar
Mack, H. (2014) ‘It's all very blurry’: exploring the messy realities of hepatitis C’, unpublished Ph.D. thesis, Lancaster University.Google Scholar
Macmillan Cancer Support (2011) New Toolkit Helps Employers Support People with Cancer at Work, http://www.macmillan.org.uk/Aboutus/News/Latest_News/Newtoolkithelpsemployerssupportpeoplewithcanceratwork.aspx [accessed 16.11.2011].Google Scholar
Marsh, S. (2012) Diary of a Benefit Scrounger: Work Consultation, http://diaryofabenefitscrounger.blogspot.co.uk/2012/10/work-consultation.html [accessed 01.06.2013].Google Scholar
McHutchison, J. G., Lawitz, E. R., Shiffman, M. L., Muir, A. J., Galler, G. J., McCone, J., Nyberg, L., Lee, W. M., Ghalib, R. H., Schiff, E. R., Galati, J. S., Bacon, B. R., Davis, M. N., Mukhopadhyay, P., Koury, K., Noviello, S., Pedicone, L. D., Brass, C. A., Albrecht, J. A. and Sulkowkski, M. S. for the IDEAL study team (2009) ‘Peginterferon Alfa-2b or Alfa-2a with Ribavirin for Treatment of Hepatitis C Infection’,New England Journal of Medicine, 361, 10, 580–93.Google Scholar
Moore, G. A., Hawley, D. A. and Bradley, P. (2009) ‘Hepatitis C: experiencing stigma’, Gastroenterology Nursing, 32, 2, 94–104.CrossRefGoogle ScholarPubMed
National AIDS Trust (2009) Working with HIV, http://www.nat.org.uk/media/Files/Publications/Aug-2009-Working-with-HIV.pdf [accessed 01.10.2011].Google Scholar
Nelson, P. K., Mathers, B. M., Cowie, B., Hagan, H., Des Jarlais, D., Horyniak, L. and Degenhardt, L. (2011) ‘Global epidemiology of hepatitis B and hepatitis C in people who inject drugs: results of systematic reviews’, The Lancet, 378, 9791, 571–83.Google Scholar
NHS Choices (2012) Hepatitis C: Workplace Tips, http://www.nhs.uk/hepatitisc/living-with-it/Pages/workplace-tips.aspx [accessed 01.07.2013].Google Scholar
NHS Education for Scotland (2010) Hepatitis C Workforce Development : An Outline of NHS Education for Scotland, http://www.Hepatitisscotlandc.Org.Uk/Media/50010/Outline-Of-Requirements.Pdf [accessed 26.03.2015].Google Scholar
Pagen, R. (2009) ‘Self-employment among people with disabilities: evidence for Europe’, Disability and Society, 24, 2, 217–29.Google Scholar
Patrick, R. (2012) ‘All in it together? Disabled people, the coalition and welfare to work’, Journal of Poverty and Social Justice, 20, 3, 307–22.Google Scholar
Paylor, I. and Mack, H. (2010) ‘Gazing into the scarlet crystal ball: social work and hepatitis C’, British Journal of Social Work, 40, 7, 2291–307.Google Scholar
Pearson, C. and Watson, N. (2007) ‘Tackling disability discrimination in the United Kingdom: the British Disability Discrimination Act’, Washington University Journal of Law and Policy, 23, 95, 95–120.Google Scholar
Platt, M. W. and Gifford, S. M (2003) ‘Promoting health through promoting work: the dilemmas of disclosure in the workplace for employers and for Australian women living with hepatitis C’, Health Promotion Journal of Australia, 14, 3, 180–6.Google Scholar
Roulstone, A. (2003) ‘The legal road to rights? Disabling premises, obiter dicta and the Disability Discrimination Act, 1995’, Disability and Society, 18, 2, 117–31.Google Scholar
Roulstone, A. (2004) ‘Disability, employment and the social model’, in Barnes, C. and Mercer, G. (eds.), Disability Policy and Practice: Applying the Social Model, Leeds: The Disability Press, pp. 18–34.Google Scholar
Roulstone, A. and Barnes, C. (2005) ‘The challenges of a work first agenda for disabled people’, in Roulstone, A. and Barnes, C. (eds.), Working Futures? Disabled People, Policy and Social Inclusion, Bristol: The Policy Press, pp. 17–28.Google Scholar
Roulstone, A., Gradwell, L., Price, J. and Child, L. (2003) Thriving and Surviving at Work, York: Joseph Rowntree Foundation, http://www.jrf.org.uk/sites/files/jrf/jr147-work-disabled-people.pdf [accessed 013.06.2013].Google Scholar
Seeff, L. B. (2002) ‘Natural history of chronic hepatitis C’, Hepatology, 36, 5, S35–46.Google Scholar
Stedman, C. (2013) ‘Current prospects for interferon free treatment of hepatitis C in 2012’, Journal of Gastroenterology and Hepatology, 28, 1, 38–45.Google Scholar
Swann, D., Long, J., Carr, O., Flanagan, J., Irish, H., Keating, S., Keaveney, M., Lambert, J., McCormick, P. A., McKiernan, S., Moloney, J., Perry, N. and Cullen, W. (2010) ‘Barriers to and facilitators of hepatitis C testing, management, and treatment among current and former injecting drug users: a qualitative exploration’, AIDS Patient Care and STDs, 24, 12, 753–82.Google Scholar
Taylor, S. (2004) ‘The right not to work: power and disability’, The Monthly Review, 55, 10, March, http://monthlyreview.org/author/sunnytaylor [accessed 03.01.2011].Google Scholar
Worklife (2009) Welcome to Worklife, http://www.yourworkhealth.com/ [accessed 01.06.2011].Google Scholar
Zucker, D. (2006) ‘A case of health disparity: treatment issues in women with hepatitis C’, Gastroenterology Nursing, 29, 2, 137–41.CrossRefGoogle ScholarPubMed