Research of epilepsy in the workplace provides an insight into how we can create good work for employees with conditions that might not be visible.
The amount of research on health and wellbeing issues in the workplace might suggest that there are established solutions for most employment scenarios involving chronic conditions. You might also assume that managers could draw upon a wealth of accumulated knowledge to support people with relatively well-known diagnoses entering work.
However, the Institute for Employment Studies’ recent research on behalf of Epilepsy Action demonstrated quite the opposite – highlighting a concerning lack of in-work support for people with epilepsy.
What can we learn from this study about creating good jobs for disabled people?
Working with a hidden disability
Our focus groups of people with epilepsy allowed a frank discussion of the challenges they had encountered.
Many of our participants were somewhat resigned to their employment opportunities being limited and firmly believed that they had experienced discrimination: employers had provided plausible reasons not to take their application forward, but these were felt to have masked underlying prejudice.
Many of the people with epilepsy that we spoke to felt unclear on what constituted discrimination in a legal sense, so had not considered legal action despite feeling employers’ decisions were unjust.
Several reported being unable to seek work that suited their talents, because of employers’ (potentially misplaced) safety concerns and some individuals had chosen not to disclose their condition at work for this reason. Many then worried about what would happen if they had a seizure among people who were unprepared.
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.
Employers’ concerns about epilepsy and hidden disabilities
As well as speaking to employees with epilepsy, we put together a representative sample of employers. But none of them had the experience of employing a person with epilepsy.
So, in partnership with Epilepsy Action, we created ‘case study’ profiles of people with different epilepsy symptoms and employment histories and asked them about their hypothetical reactions.
Our own researchers had been surprised by what we’d learnt about the condition during our own training, so the employers’ lack of knowledge did not alarm us.
They knew very little about the different types of seizure and falsely assumed that ‘tonic-clonic seizures’, which can involve dropping to the floor and losing consciousness, are typical. This made them over cautious in estimating the range of jobs to which people with epilepsy could be deployed. Their assumptions made them unsure whether they could make adjustments enabling someone with epilepsy to work safely in job roles involving machinery, vehicles, working remotely or alone.
The employers were unanimous in their desire for employees to disclose as early as possible. But, paradoxically, they were also more willing to make adjustments to help an existing employee (i.e. someone already known to them) to retain their job, than for a new member of staff.
HR and people managers are central to creating good jobs for people with hidden disabilities
In common with other hidden disabilities, such as mental health problems, fears of disclosing epilepsy can persist long after recruitment. In circumstances where people wish to progress within an organisation they may worry that being open about their epilepsy could affect perceptions of their career potential.
A common theme from other elements of our research on health and work is that generic soft skills of people-managers are hugely important. This is key to eliciting openness about health conditions and disabilities, ultimately allowing reasonable adjustments to be more personalised.
Furthermore, high quality discussions allow managers to benefit from expertise derived from a person’s own lived experience of their condition. 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.
Creative thinking is instrumental to (re-)designing jobs to fit people and limit the impact of their symptoms. This requires collaboration between HR professionals and health and disability experts with business insight.
Smaller businesses need effective and easy access to the right advice and it’s imperative that government schemes such as Disability Confident and Access to Work have visibility.
It can be easy to blame employers for making blanket assumptions about health conditions, but this ignores the time pressures they are subject to - as well as a lack of in-house access to relevant expertise.
As is the case in the Institute for Employment Studies’ wider programme of work with businesses, we found there were good intentions among employers and a strong desire to ‘do the right thing’. This provides a good foundation for improving practice, as does government’s intention to close the aforementioned disability gap.
We look forward to seeing how Epilepsy Action apply our findings and hope that some of the people with epilepsy who talked to us will eventually experience positive changes in their own working lives.
Sally Wilson is Senior Research at the Institute for Employment Studies.
‘Employment support for people with epilepsy’ is available to download on the Institute for Employment Studies website.