Despite greater awareness of disability discrimination, people with epilepsy continue to be disadvantaged at work due to a lack of understanding around the condition. It’s time for HR to lead the way in stamping this out.
No HR professional with integrity would set out to discriminate on the basis of disability and one might assume that the days of systematic biases are in the past. There is still some way to go, however, in terms of universal good practice. IES’ recent research to explore the employee experiences of people with epilepsy yielded some difficult truths about recruitment behaviours.
Epilepsy is more common than most people realise. There are 600,000 people with epilepsy living in the UK, which amounts to around one in 100 people.
Despite anti-discrimination legislation, people with epilepsy in the UK are more than twice as likely as those without the condition to be unemployed*.
Epilepsy Action commissioned our research in acknowledgement of the fact that the reasons for this were not well understood.
As an organisation working to improve the lives of people with epilepsy, they wanted actionable recommendations to improve their situation.
A key part of our approach was focus group work with people with epilepsy. This allowed our researchers to obtain frank, first-person accounts of their experiences of finding and remaining in work.
Some firmly believed that they had experienced discrimination although this was hard to prove, particularly where employers had provided plausible reasons not to take their application forward.
Many felt somewhat resigned to their employment opportunities being limited.
Stemming from their lack of knowledge, employers were unsure whether they could make adjustments to enable someone with epilepsy to work safely in job roles involving machinery, vehicles, working remotely or alone.
Unfair treatment was felt to stem from inaccurate or outdated assumptions about epilepsy, particularly regarding the impact of seizures at work.
In anticipation of unfair treatment or over-reaction to their condition, it was common for participants to say that they had not disclosed their condition to their employer.
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.
A lack of understanding
Our complementary research with employers confirmed a high degree of misunderstanding about epilepsy.
In interviews to probe their knowledge, many falsely assumed that tonic-clonic seizures (which can involve dropping to the floor and losing consciousness) were typical. They also underestimated the extent to which medication can control or limit them - about half of people with epilepsy are seizure-free.
Furthermore, there was confusion about the rules on driving (this depends on the nature and history of someone’s seizures).
Stemming from their lack of knowledge, employers were unsure whether they could make adjustments to enable someone with epilepsy to work safely in job roles involving machinery, vehicles, working remotely or working alone.
This made them over cautious in estimating the range of jobs to which people with epilepsy could be deployed. Their comments provided valuable insight into beliefs that can manifest in inadvertent discrimination and showed how misplaced concern could negatively impact on an individual’s opportunities.
What are the implications for HR practice?
The key message was that a disclosure of epilepsy (or inadvertent disclosure in the event of someone experiencing symptoms at work) should be met by well-informed and supportive response.
Employers were emphatic that they would wish a person with epilepsy to disclose their condition, but this sat in contrast to employees fears about being open.
To address this, our report recommends a ‘whole organisation’ approach to disability. Participating in the Disability Confident scheme is one way to achieve this.
Manager behaviours are less likely to be driven by ‘blanket assumptions’ when an individual is given time and space to explain how their condition affects (or does not affect) their working life.
This commits employers to improvements in five areas: inclusive and accessible recruitment; communicating vacancies; offering interviews to disabled people; providing reasonable adjustments; and supporting existing employees who develop a disability to stay in work.
Effective job design (as highlighted in the RSA’s Metrics for Good Jobs) is an important consideration and even more so in the context of disability.
Job carving that combines job tasks to fit the specific skills and strengths of individual workers can be a useful approach.
Creative thinking is instrumental to (re-) designing jobs to fit people and limiting the impact of (or risk of recurrence of) their health symptoms.
This requires collaboration between HR professionals and health and disability experts with business insight. It’s also essential to involve the person with epilepsy, and benefit from expertise derived from a person’s own lived experience of their condition.
Improving communication about epilepsy
A familiar theme that emerged was the importance of good communication between employees and employers. Positive working relationships and communication styles are more likely to foster openness about health conditions and disabilities.
There is, therefore, a strong case for training line managers in generic ‘soft’ skills. Manager behaviours are less likely to be driven by ‘blanket assumptions’ when an individual is given time and space to explain how their condition affects (or does not affect) their working life.
A major lesson from this work was the range of stakeholders who can potentially be involved in improving the disability gap for people with epilepsy.
Our research participants wanted to see Epilepsy Action engage in highly visible campaigning work with clinicians, employers and senior thought leaders in occupational health and human resources.
Experts who contributed to our study felt that organisations such as CIPD, the Institute of Directors and the Federation of Small Businesses should be drawn into the debate about epilepsy and employment.
We have made recommendations for the types of resources that could help employers and we will be interested to see how Epilepsy Action takes our work forward in the longer term.
In the meantime, better awareness is the first step towards improved practice and we would encourage HR professionals to read our report.
Like them, we want to see more inclusive workplaces as well as greater financial security and more fulfilled working lives for people with epilepsy.
*Baker G A (2017), ‘Employment’, in Rugg-Gunn F J and Stapley H B [EDS] From Bench to Bedside: A Practical Guide to Epilepsy, Epilepsy 2017 London: International League Against Epilepsy pp. 547-554.
Interested in this topic? Read Disability discrimination at work: how to protect your business and employees.
About Sally Wilson
Sally has more than fifteen years’ experience of applied research in health and wellbeing and currently leads on this area of policy research at IES. Her work spans occupational health and safety, stress and mental health, as well as chronic illness and disability. Sally has a particular interest in workplace mental wellbeing, including interventions to manage workplace stressors, as well as measures to help people return and re-enter work who have lived experience of mental health conditions. More broadly her expertise also extends to quality of work, work-life balance and working while caring. She recently project managed a large evaluation for the Social Care Institute for Excellence looking at local interventions to support carers in employment.
Sally has a background in behavioural and health sciences having completed a PhD in neuropsychology at the MRC Cognition and Brain Sciences Unit in Cambridge, which involved case study work with patients at Addenbrooke’s Hospital. Within IES, Sally has worked with a wide range of clients including the Ministry of Defence, the Health and Safety Executive, the Social Care Institute for Excellence (SCIE), Mind, Macmillan and the Police Federation of England Wales (PFEW). In a European context she has managed a number of research projects for EU-OSHA (the European Agency for Occupational Safety and Health at Work), including an evaluation of an EU-wide initiative to raise awareness of health and safety among school-age children.
At a more local level, Sally worked with a London Borough to evaluate a health mentoring and referral scheme for young people, delivered in a youth centre setting. Currently she is leading an evaluation of Mind's Workplace Wellbeing Index for employers and advising on the remit of a Public Health England project on worklessness.
Before joining IES she worked at the Health and Safety Laboratory (part of the Health and Safety Executive) and at the Sheffield Institute for Studies on Ageing, as well as the Age and Cognitive Performance Research Centre at the University of Manchester.