Employment support for people with epilepsy

Qualitative research to identify what good employment support for people with epilepsy should look like

Epilepsy Action commissioned the Institute for Employment Studies (IES) to conduct research to explore the factors that contribute to people with epilepsy being disadvantaged at work, and to identify what good employment support should look like. 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 with people with varied epilepsy symptoms and employment histories.

The employers interviewed were often unfamiliar with the range of epilepsy symptoms that exist. Sometimes they were unaware that medication can often prevent seizures. Employers’ main concern about employing someone with epilepsy was the safety risk of seizures. They 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.

In contrast, people with epilepsy were usually very reluctant to talk about their health with their employer until they were established in a job, and they found discussing this very difficult. Often they found it hard to explain their fluctuating condition clearly to others. Sometimes they 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.

The gap between employers’ desire for openness and people with epilepsy’s difficulties in discussing health suggests an area that Epilepsy Action can address. 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 and fit with job tasks, and to make adjustments.