An uncomfortable truth – new IES study reveals that people with epilepsy still face discrimination at work

2 May 2019

The Institute for Employment Studies (IES) is pleased to announce the publication of a new report: Employment support for people with epilepsy, commissioned by Epilepsy Action, one of the UK’s leading epilepsy charities.

In the UK approximately 1 in 100 people (600,000) have a diagnosis of epilepsy, yet despite anti-discrimination legislation, people with epilepsy in the UK are more than twice as likely as those without the condition to be unemployed¹.

IES designed a qualitative study comprising a rapid literature review, interviews with four experts in employment support, clinical practice and applied research, interviews with six employers of different sizes across a range of industries and two focus groups of individuals with varied epilepsy symptoms and employment histories.

The report explores factors that contribute to people with epilepsy being disadvantaged at work and to identify what good employment support should look like. The research uncovered clear employer knowledge gaps, underpinned by a lack of awareness surrounding the fluctuating condition. Equally, employees were often very reluctant to discuss their health with employers until firmly established in the workplace – for fear of discrimination.

The employers interviewed were often unfamiliar with the range of epilepsy symptoms that exist, sometimes being unaware that medication can often prevent seizures – the chief health and safety concern cited when considering employing somebody with epilepsy. Employers frequently doubted that they could make adjustments to enable someone with epilepsy to work safely. Job roles involving machinery, vehicles, working remotely or alone, or caring for others were felt to be particularly difficult.

However, employers were more willing to make adjustments to help an existing employee to retain their job. And almost all employers wanted people with epilepsy to openly disclose their health condition, ideally during recruitment.

By contrast, people with epilepsy found discussing their health extremely difficult. The complexities of a fluctuating condition made it hard for them to explain to others and they often feared discrimination if employers knew about their epilepsy. People with epilepsy also reported being unable to seek work that suited their talents, because of safety concerns.

IES recommends a personalised online toolkit - covering disclosure, health and safety, reasonable adjustments and other common concerns, could guide employers and employees in their conversations. Checklists and ‘job carving’ would help employers to assess employees’ capacity to fit with job tasks and make necessary adjustments. IES also identifies a need for face-to-face advocacy services to support people with epilepsy in representing themselves effectively in interactions with employers.

Dr Sally Wilson, IES Senior Research Fellow, said: “Our research has uncovered some uncomfortable truths about how epilepsy is addressed in the workplace; employers suffer from a lack of awareness while employees are reluctant to disclose information.

“Improved employment support could assist people with epilepsy in having better conversations with employers and to achieve sustainable jobs that suit their talents. It could also help employers feel more able to employ people with epilepsy.”

Philip Lee, Chief Executive at Epilepsy Action, commented: “Sadly, we’re not surprised to hear that finding and staying in work is still difficult for many people with epilepsy. But the stories we hear of discrimination are shocking. Much of this comes from a fear of the unknown. As epilepsy is a largely invisible, fluctuating condition it is not always obvious how to deal with seizures. But these barriers and attitudes needn’t exist in the modern workplace. There are simple considerations that can be implemented. A culture of openness, on both sides, can also go a long way to reduce absences, disputes, dismissals and resignations.

“Epilepsy Action delivers bespoke training sessions to employers and is currently developing a toolkit to help businesses support their staff with epilepsy. We want to see a significant increase in the number of people with epilepsy in long-term, secure employment.”

ENDS

Notes to editor

Baker et al, 2017. Characteristics associated with quality of life among people with drug-resistant epilepsy, Journal of Neurology

About the Institute for Employment Studies (IES)

The Institute for Employment Studies is a leading independent, not-for-profit centre for research and evidence-based consultancy on employment, the labour market and HR policy and practice.

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