Focus of the existing HCV literature

Research around HCV has historically focused on clinical and medical aspects, including epidemiology (Nelson et al., Reference Nelson, Mathers, Cowie, Hagan, Des Jarlais, Horyniak and Degenhardt2011), characteristics of the virus and its progression (Seeff, Reference Seeff2002), transmission routes (Jafari et al., Reference Jafari, Copes, Baharlou, Etminan and Buxton2010), treatment options and contraindications (McHutchinson et al., Reference McHutchison, Lawitz, Shiffman, Muir, Galler, McCone, Nyberg, Lee, Ghalib, Schiff, Galati, Bacon, Davis, Mukhopadhyay, Koury, Noviello, Pedicone, Brass, Albrecht and Sulkowkski2009), including the increasing momentum of clinical trials and the development of new treatments (Stedman, Reference Stedman2013). There is a startling lack of attention to the experience of living with HCV within the UK, and the nuances and differences in policy response and services that this entails. A specific lacuna exists in relation to the experience of working whilst living with, and being treated for, HCV.

HCV and employment in the existing literature

Studies have stated that the emotional and physical dimensions of HCV, treatment side-effects and their wide-ranging and unpredictable nature (Conrad et al., Reference Conrad, Garrett, Cooksley, Dunne and Macdonald2006) can affect participation in the workplace (Blasiole et al., Reference Blasiole, Shinkunas, LaBreque, Arnold and Zickmund2006). A recent Australian study described participants’ difficulties in sustaining their careers and ambitions. Participants attributed this to HCV-related fatigue, which they stated both exacerbated other symptoms and altered their daily routines and tasks (Fry and Bates, Reference Fry and Bates2012). The study found that participants reduced their hours from full to part-time, or stopped working altogether, as part of what they termed ‘self-care’. It highlights that people with HCV face the dilemma between needing to work for financial and personal reasons, but not always being able to do so (Swan et al., Reference Swann, Long, Carr, Flanagan, Irish, Keating, Keaveney, Lambert, McCormick, McKiernan, Moloney, Perry and Cullen2010).

Platt and Gifford (Reference Platt and Gifford2003), in the only qualitative study which focuses solely on the employment experiences of people with HCV, found that in addition to the financial benefits, work was an important marker of self-worth, enabled participants to feel part of their community and provided structure to manage the effects of living with HCV. The authors found that the loss of employment had a serious impact on participant self-confidence and wellbeing. Additionally, a US study found that employment (even part-time) was associated with greater access to information and support in relation to HCV (Zucker, Reference Zucker2006).

However, in a comprehensive inquiry into the discrimination faced by people with HCV in New South Wales Australia in 2001, submissions to the inquiry indicated that employment was the most common site of discrimination, after healthcare, and that discrimination often followed disclosure in the workplace (Anti-Discrimination Board of New South Wales, 2001). A fear of negative consequences meant that they hid their status from employers, thus creating difficulties in explaining the need for time off for regular hospital attendance, potentially impacting on their ability to maintain appointments, and therefore affecting their health (Swan et al., Reference Swann, Long, Carr, Flanagan, Irish, Keating, Keaveney, Lambert, McCormick, McKiernan, Moloney, Perry and Cullen2010). Hopwood et al., (Reference Hopwood, Nakamura and Treloar2010) found that very few people had disclosed their HCV status to their boss or work colleagues, 16.5 per cent (83/504) and 17.3 per cent (87/504) of participants respectively, due to concerns about their reactions, although some did describe feeling obligated to tell their colleagues. Other studies described how participants withheld their status in the workplace as they were concerned they would lose their jobs, or would not be considered for a position (Moore et al., Reference Moore, Hawley and Bradley2009). Discriminatory workplace procedures have also been described in the literature, including being subjected to invasive questions concerning the method of transmission (Conrad et al., Reference Conrad, Garrett, Cooksley, Dunne and Macdonald2006), or assumptions related to participants’ (perceived) status as someone who used drugs (ADBNSW, 2001). Moore et al., (Reference Moore, Hawley and Bradley2009) also found that occupational health examinations were also used as a site of discrimination, enacting HCV as highly contagious.

The exploration of employment experience

Accounts of employment experience with HCV are scarce, particularly within a UK context where few qualitative studies are available. 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 (DDA), 1995, 2005, now part of the Equality Act (EA) 2010 (HM Government, 2013) and their experiences of receiving reasonable adjustments in the workplace. It has been noted that in exploring disability discrimination legislation, much of the literature focuses on the perspectives of employers and not employees (Foster, Reference Foster2007), thus this article makes a contribution here. It is an important time to document participant experiences, given the reported low rates of impairment disclosure in employment (EHRC, 2012), and the current instability in relation to the labour market (Patrick, Reference Patrick2012).

Negotiating work and treatment

Employment and making an economic contribution is understood as a key marker of citizenship (Taylor, Reference Taylor2004). Employment plays a key role in developing economic and social status, and exclusion from the labour market means that some groups (including disabled people) continue to be marginalised (Zucker, Reference Zucker2006). Paid employment has been recognised as beneficial (Roulstone and Barnes, Reference Roulstone, Barnes, Roulstone and Barnes2005), not only financially, but in terms of an increased sense of self-worth, structure in daily life and connection to the local community (Platt and Gifford, Reference Platt and Gifford2003). We follow Edwards and Boxall (Reference Edwards and Boxall2010) in recognising that both impairment effects and disabling barriers affect the experience of employment and contribute to experiences and enactments of disablism, and that many of the experiences documented here have commonalities with the experiences of other disabled people.

Obtaining reasonable adjustments

All participants who were working while on treatment (or started treatment while working) described needing to adjust working hours and patterns of work. This depended on disclosure to employers to varying degrees. Only one participant (Freda) continued to work the hours she did before treatment, despite experiencing severe treatment effects, including debilitating fatigue and emotional instability. She described managing these effects by sleeping during her lunch hour with her office door closed. She explained that her reasons for non-disclosure related to her perceptions of her line manager whom she felt ‘couldn't hold his own water, let alone a confidence’. Whilst this could be considered what Griffin-Basas (Reference Griffin-Basas2010) refers to as self-accommodation, which allows Freda to maintain control over her personal circumstances, it also echoes Crockett and Gifford's (Reference Crockett and Gifford2004) findings that fear of negative consequences meant employees hid their status from employers and Roulstone et al.'s (Reference Roulstone, Gradwell, Price and Child2003) findings that reasonable adjustment negotiations depend on relationships with line managers.

For other participants, this was not an option. Shaun, who was on treatment for the second time, described taking the final weeks of his twenty-four week treatment off work:

Shaun's rich description of the effects of treatment on working makes visible not only the embodied experience, but the impact on wider relationships. He described raising a grievance against his employer while on treatment. While Shaun indicated that he probably would have raised this grievance in due course, he felt that treatment exacerbated this. Holi also described reducing her hours to part-time in her role as a counsellor, whilst on treatment. Ben, who was treated for HCV infection twice, reported reducing his hours on both occasions, but this was affected by his employer at the time.

Redundancy

Two participants described being made redundant whilst on treatment, possibly a marker of the time period during which these data were generated. Whilst it is unlawful to make someone redundant due to disability, it is questionable whether this occurred for Laurie. Both Keith and Laurie described taking voluntary redundancy when their respective companies needed to make savings. Keith indicated that redundancy was part of a range of options, (although the degree to which these were meaningful or suitable is debatable, as one option was to take an eighteen month unpaid sabbatical). The uncertain nature of the treatment meant that Keith took redundancy:

Whilst Keith spoke positively of his employer and described his changing views on the importance of a career as a good thing, he later described finding it difficult to survive on the redundancy payments given that he had parenting responsibilities. This also had knock-on effects for his housing. Keith reported that eviction procedures were started when he informed his landlord he had lost his job. This was only resolved with the involvement of his MP, his local council and his liver consultant. Here HCV treatment intra-acts with a number of areas of his life and, paradoxically, obtaining support actually required that Keith put in a great deal of ‘work’ whilst on treatment. The ‘work’ required is also likely to increase for those subject to the ‘bedroom tax’ or benefits cap (DWP, 2013a, b), where individuals find they can no longer afford to live in their home and have to move away from social networks and incur additional financial expenses and the stress of moving.

Laurie described a particularly difficult experience of being made ‘redundant’ (his use of parentheses) from his job in a legal environment:

When the specifics of this arrangement were later clarified with Laurie, he explained:

Laurie indicated that although his employers provided him with a generous redundancy payment, and the time off gave him the opportunity to recover from treatment, he felt their specialised legal knowledge had enabled them to make him redundant, despite this being unlawful under the DDA (1995, 2005, now under EA 2010).

Laurie indicated that he did not think to ask for reasonable adjustments under the DDA, although his employers, given their profession, might perhaps have suggested this to him. This could be interpreted as a lack of knowledge on Laurie's or his employer's part, suggesting the need for greater information, training and awareness around applications of disability discrimination and equality legislation (Foster, Reference Foster2007). It might also suggest that Laurie did not necessarily identify as disabled and thus did not ask for an adjustment (Duff et al., Reference Duff, Ferguson and Gilmore2007). It is possible that the impact of the treatment on Laurie's cognitive ability, and the increased stress he experienced on treatment might well have influenced his willingness to pursue an adjustment. Laurie's employers may also have been unsure about his entitlement under the Act to an adjustment, given the contingent and shifting nature of the treatment effects and duration. It has been noted in the literature (Duff et al., Reference Duff, Ferguson and Gilmore2007) that employers recognise some impairments more than others. Further, Laurie's phrasing suggests that his employer determined how much time he needed to recover from treatment rather than asking Laurie, which proved inadequate for Laurie's needs; this echoes Roulstone's (Reference Roulstone, Gradwell, Price and Child2003) observation that power to apply the DDA rests with professionals.

Obtaining reasonable adjustments in the workplace

Some participants did describe receiving reasonable adjustments under the DDA (now under the EA 2010). The DDA requires employers to make ‘reasonable adjustments’ under section 6 of the Act to facilitate the employment of disabled people in the workplace, including: providing equipment (chairs, laptops, software), making adjustments to the workspace or to the structure and timetable of work (working part time, working from home, working a different routine). However, even though these rights are enshrined in legislation, adjustments may be unevenly available and the concept of ‘reasonable’ in reasonable adjustments remains vague (Crooks et al., Reference Crooks, Owen and Stone2012). Griffin-Basas (Reference Griffin-Basas2010) describes how the notion of what is reasonable has been contested in a North American context, and is often perceived to be ‘asking too much’ (either in terms of resources, time, or the character of adjustment).

Positive experiences

Keith described receiving a formal reasonable adjustment and a very positive response which he felt was related to the national reach of the company and the size of the organisation he was employed by:

Here Keith is provided with equipment to work from home, a mechanism which, if expanded, could increase access to the labour market for many disabled people (Marsh, Reference Marsh2012). This experience fits with a survey by Bruyere et al. (Reference Bruyere, Erickson and VanLooy2004), who found that equipment provision was the most easily accommodated adjustment.

Similarly Shaun reported a positive response, which he felt was connected to the informed and specialist nature of his role and his employer being in the public sector:

As Shaun indicates, this positive response is perhaps connected to the large nature of the organisations, and the size and specialisms of their HR and legal departments, who may be better informed and equipped than smaller organisations.

Charlie described a positive response, which he too felt was related to the nature of his employer and the type of work he did, which made adjustments relatively straightforward:

Charlie makes an important point here about the forms of work that are amenable to adjustments of this type, indicating that this may have been more difficult if it involved physical work or attending somewhere every day. This raises issues regarding recent proposals to require claimants to look for jobs that entail thirty-five hours working in order to receive benefits (Citizens Advice Bureau, 2013). Those working in roles which are insecure and low paid, the current nature of much available employment (Garthwaite et al., Reference Garthwaite, Bambra and Warren2013), may find this is much less the case.

Similarly Daniel, who was training to be a counsellor, described his college tutor making adjustments to enable him to continue to participate, which he felt was related to his strong relationship with his tutor and the flexibility of the course and the college.

It was perhaps no coincidence that most of the participants who received a reasonable adjustment were well informed of their rights, either through working in a disability advisory role or working for an organisation which provided some advice and training on these issues (cf. Roulstone et al., Reference Roulstone, Gradwell, Price and Child2003).

Negative experiences

However, for Richard, specialised knowledge (both on his part and on the part of his employer) did not lead to a positive experience when employed by his local authority. He described disclosing both his liver transplant and the second course of HCV treatment (and the impairment effects and adjustments needed) at the interview, and was offered the job. Despite this honesty Richard reported:

This extended extract highlights the difficulties Richard faced and the intra-action of these difficulties which materialised for him, and his impairment, in both directly and indirectly psycho-emotionally disabling ways. The extract makes visible the lack of clarity around HCV and liver disease and the coverage of the DDA. Although it is difficult to see how a person recovering from an organ transplant would not be considered disabled for the purposes of the Act, it also highlights the stressful and long-term nature of the process of challenging this using the DDA, which became even more disabling (Roulstone, Reference Roulstone2003). Whilst Richard described resisting and challenging this, there is evidence that others do not (Edwards and Boxall, 2010). There are also serious implications given that Richard indicates that he would be deterred from seeking local authority support, potentially affecting how much he engages with regard to social work support and information in future.

As Fry and Bates (Reference Fry and Bates2012) have noted, responses from employers can be uneven and contingent. Ben described two very different responses. When he underwent treatment the first time, he disclosed his HIV status and eventually his HCV status to his line manager, with whom he had a positive relationship, and came to an arrangement where he went home if he felt unwell. Ben described that he felt this was a result of the size of the organisation which could temporarily absorb his work responsibility during difficult periods of treatment. However, after the company was sold to a smaller organisation, Ben reported a less proactive response from employers, deterring him from seeking a reasonable adjustment:

Here, Ben indicates that he did not pursue reasonable adjustments under the DDA because he would have had to research and negotiate this with his employer. He described seeking advice and support from a national charity, who explained that adjustments need to be negotiated on a personal basis. Ben described not feeling well enough to do this due to the effects of treatment. Crooks et al. (Reference Crooks, Stone and Owen2011), in their study of Canadian academics seeking employment adjustments, similarly found that participants did not ask for reasonable adjustments, because they expected it to be stressful and felt too ill to take on the additional work they felt it would entail. There is a parallel here with participant experiences of accessing welfare benefits, where participants reported being too impaired and disabled to pursue an appeal; paradoxically this means that those who are the most in need of support are the least likely to access it. We are reminded here of Barnes’ (Reference Barnes2003) observations that anti-discrimination legislation and support should be highly visible, its implementation adequately funded and that responsibility for enforcing it should not be left to disabled people themselves.

Further, Ben indicates that he had concerns about the stability and security of his employment if he had made his HCV status clear in his workplace. He described shredding his personal file, which disclosed his HIV status, out of concern that this may well have affected the way he was treated and his career trajectory. Similar sentiments were echoed by untenured academics in Crooks et al.'s (Reference Crooks, Stone and Owen2011) study, and observed by Griffin-Basas (Reference Griffin-Basas2010) in relation to disabled female attorneys.

Coverage under legislation

HCV was described in the context of disability legislation in Australia fifteen years ago, (Crofts et al., Reference Crofts, Louie and Loff1997). In the UK, Mack (Reference Mack2007) and Paylor and Mack (Reference Paylor and Mack2010) have suggested that those with HCV (and on treatment) should be protected under disability legislation, but there has been no exploration of the extent to which people with HCV felt they were covered. A person is covered by the DDA if they have ‘a physical or mental impairment which has a substantial and long-term adverse effect on the person's ability to carry out normal day-to-day activities’. For the purposes of the EA, the wording is very similar (HM Government, 2013).

The DDA, which most people referred to in their interviews, has been criticised for being based on a medical model (Pearson and Watson, Reference Pearson and Watson2007). Although recent efforts have been made to cover fluctuating impairments in the EA, many participants described feeling uncertain about whether they were covered with HCV. Ben described feeling that people with HCV were covered under disability legislation, but that the difficulties he faced in employment were a result of HCV not being explicitly included under legislation from the point of diagnosis in the same way HIV is; which contributed to its enactment as unimportant. Though Ben acknowledged the contingency of HCV experiences, he described how acknowledging HCV from the point of diagnosis would be validating and helpful:

Though it is important not to reinforce the medical model by stating that those with HCV should be covered on the basis of impairment alone, the barriers described by participants in this article suggest that they should be included explicitly under the EA. This contributes to a reality where HCV is not depoliticised as an individual problem to be managed, but is the responsibility of employers and wider society.

As was explored above, significant ‘work’ may be required on the part of the person claiming under the DDA, and making increased reference to the DDA in wider information, campaigns and training is not intended as a panacea, especially given the findings of a recent National AIDS Trust (2009) survey which indicated that, even with legislative protection, one fifth of people with HIV questioned felt they had experienced discrimination in the workplace. However, in spite of the problems with it, the DDA has at least enacted the needs and rights of disabled people as important (Roulstone, Reference Roulstone, Barnes and Mercer2004) and the EA represents a step forward regarding recognition of the cross cutting nature of oppression.

The acknowledgement of HCV

Though the DDA (2005) incorporated people with fluctuating impairments from the point of diagnosis, including HIV, MS and Cancer, there has been limited acknowledgement of the rights and entitlements of people with HCV under the DDA, and later under the EA. NHS Choices (2012) and the Hepatitis C Trust (2011) only briefly mention legislation, indicating that employers ‘may have’ an obligation under the DDA. Only NHS Education for Scotland (2010) explicitly and firmly acknowledges that those with HCV are disabled and are entitled to reasonable adjustments. Thus, there is a need for greater attention to employment, reasonable adjustments and coverage under the DDA.

Worklife's (2009) remit could be widened to include the experience of HCV, enabling people with HCV (and those with co-infection) to garner employment related information and to be able to signpost others. In addition, specific information could be developed for employers to explain the impact of HCV and treatment, and their obligations, such as the toolkit developed by Macmillan Cancer Support (Macmillan Cancer Support 2011).

Being self employed

The final area where there were specific issues raised around employment was the experience of self-employment. Pagan (Reference Pagen2009) points to the value of self-employment for disabled people in enabling them to make their own accommodations. However, as Griffin-Basas (Reference Griffin-Basas2010) notes, this can be costly, result in a precarious employment situation and may further marginalise disabled people from mainstream employment. Both Morgan and Grace reported being self-employed and giving up their businesses due to treatment effects. For Morgan, having to give up her business was cited as the major impact of HCV treatment as she lost clients and her working premises. Grace described selling her business due to a combination of information she had read on the internet concerning difficulties while on treatment and beginning the treatment itself:

Here the need for clear and accurate information about the treatment, the implications for her self-employed status and the opportunity to discuss it with a business advisor or within a HCV support group (which Grace did not find until much later in her treatment) may have prevented Grace from making the decision she later regretted. Later in the interview, the complexities of being on treatment and having to survive financially after being found ineligible for welfare benefits were made visible. Grace described herself as being ‘in limbo’ as she did not fit the eligibility criteria for welfare benefits, but was too impaired to work. The result was that Grace used the profits from the sale of her business to survive on treatment. This raises questions regarding how easy it will be for Grace to re-enter workplace when she has to rebuild her business.

Recommendations

• • There is a need for specific written information and advice for employees around HCV (from impairment specific organisations). The fluctuating nature of impairment and contingent nature of the experience of disablism means it is not just as simple as one solution being applied to all people with HCV (cf. Foster and Fosh, Reference Foster and Fosh2010); however there is an urgent need for the profile of HCV as affecting employment to be raised.

• • Similarly, there is a need for wider discussion within HCV literature around the impact on employment and the development of guidance specific guidance.

• • Support and information from union representatives around disability legislation and adjustments is needed.

• • There should be a clear process for obtaining adjustments. This is not something that should be left to the individual themselves to negotiate.

• • There is an urgent need for support for those who are self-employed.

• • Training and information for line managers around disability in general should be provided. This is consistent with wider recommendations in the disability literature around understanding of employer obligations.