Epilepsy and employment: poor awareness and misconceptions reveals a need for targeted support
2 May 2019
Sally Wilson, Senior Research Fellow
Morwenna Byford, Research Officer
Many more people are living with epilepsy than you realise: in the UK approximately 1 in 100 people (600,000) have a diagnosis. As with many chronic conditions there can be an impact on working life but labour market participation for this group is surprisingly low: despite anti-discrimination legislation; people with epilepsy in the UK are more than twice as likely as those without the condition to be unemployed. This statistic is of particular concern to Epilepsy Action, one of the UK’s leading epilepsy charities and it prompted them to commission IES to undertake an independent research project to explore factors that contribute to people with epilepsy being disadvantaged at work and to identify what good employment support should look like.
IES’s research involved an evidence review, consultation with disability experts, discussions with employers and - most crucially - people of working age with epilepsy with varied symptoms and employment histories. The latter allowed the research team to obtain first-person accounts of their lived experience by means of frank focus group discussions. Several areas of consensus were identified. While it was hard to evidence discrimination – employers had tended to provide plausible alternative reasons not to take their application forward – focus group participants firmly believed that this had happened. Many reported being unable to seek work that suited their talents, because of employers’ (potentially misplaced) safety concerns. Some individuals had chosen not to disclose their condition at work for this reason. In one case a participant’s employer became aware of her condition only after she had experienced a seizure at work. After a short period of absence to recover she thought it very likely the employer would dismiss her, so she pre-empted this by resigning.
Poor awareness and misconceptions
There was interest and willingness to learn among the employers we interviewed but also a lack of awareness surrounding the condition and the different forms of epilepsy that can exist. They voiced concerns that seizures would impact work activities, sometimes being unaware that medication can control and limit these. More generally they tended to associate epilepsy with the most disruptive forms of seizure and most did not recognise the different classifications even when prompted. Their assumptions made them unsure whether they could make adjustments to enable someone with epilepsy to work safely in job roles involving machinery, vehicles, working remotely or alone. They were also more willing to make adjustments to help an existing employee (ie someone already known to them) to retain their job, than for a new member of staff. Experts noted that the Equalities Act 2010 acts as a ‘safety belt’ that incentivises employers to retain existing staff.
A need for targeted support
A key finding was that almost all employers wanted people with epilepsy to openly disclose their health condition, ideally during recruitment. This sits in contrast to employees fears about being open and highlights the challenges of taking action on ‘invisible’ conditions in the workplace. Our report recommends improved access to face-to-face advocacy services to support people with epilepsy in representing themselves effectively in interactions with employers. To complement this we have suggested that an online toolkit could guide employers and employees in their conversations. Ideally this would cover disclosure, health and safety, reasonable adjustments and other common concerns. This could help employers assess employees’ capacity to fit with job tasks and make necessary adjustments.
Cross cutting themes
Many of the messages emerging from this research chime with work IES has undertaken on other ‘hidden’ conditions where discrimination can be an issue, mental illness being the most obvious example. Indeed the experts we interviewed described that reactions to epilepsy can be similar to that shown towards serious mental health conditions. As can occur with other hidden disabilities employees themselves can be reluctant to disclose information not just at recruitment stage but also when they are more established in a role. Our expert participants felt that in circumstances where people wish to progress within an organisation they may worry that disclosing epilepsy could affect perceptions of their career potential.
Other familiar themes arising from our findings concern better communication between employees and their line managers. Generic soft skills which enable line managers to broach potentially difficult subjects can help elicit openness about health conditions and disabilities and allow reasonable adjustments to be more personalised. Furthermore they allow line managers to benefit from expertise derived from a person’s own lived experience of their condition.
Learning points for the future
There are recommendations in our report for a range of stakeholders including employers, Jobcentre Plus advisors, occupational health specialists and Epilepsy Action themselves. Another group of interest were NHS care professionals involved in diagnosing and treating epilepsy. In the current study our experts felt that NICE potentially had a role to play, such as adjusting its guidelines on prescribing medication for epilepsy so that clinicians take account of side effects that might restrict people’s ability to work. This consistent with messaging in the Government's Green Paper on Work and Disability which sets out an ambition for work to be ‘consistently recognised as a health outcome in the health and care systems’.
Having been given a unique opportunity to comment and reflect on issues that have not received much public attention, participants in our study felt it was time for a national campaign to challenge attitudes towards epilepsy and employment. This could include promotion of case studies featuring people with epilepsy in unexpected jobs, celebrities with epilepsy, and employers demonstrating good practice. We hope that our report provides the first step towards a sea change in policy and practice leading to more inclusive workplaces, greater financial security and more fulfilled working lives for people with epilepsy.
Any views expressed are those of the authors and not necessarily those of the Institute as a whole.