Epilepsy: An often-overlooked challenge in the workplace

When discussing neurological conditions and their effect on employees, epilepsy is often left out of the discussion. New research highlights how those affected can go through hardships in the workplace and what employers can do to be more accommodating.

Epilepsy is defined as “a neurological condition involving the brain that makes people more susceptible to having recurrent unprovoked seizures. It is one of the most common disorders of the nervous system and affects people of all ages, races and ethnic background.”

Researchers from the Australian Epilepsy Project (AEP) at The Florey conducted a study to identify barriers faced by those with this condition. The report highlighted how just 64.5 per cent of people with epilepsy were in paid work. This dropped to 52 per cent of people with drug-resistant epilepsy.

This divide creates challenges, and in fact, the study found that those living with the condition reported a lower quality of life than the general population.

The project’s health economics lead, Professor Zanfina Ademi, noted that more work needs to be done to break down barriers for those living with epilepsy.

“About 46 million people worldwide live with epilepsy, often with profound impact on their lives. Here in Australia, a radical shift is needed. This goes well beyond what can be achieved through changing an individual clinician’s practice or updating institutional policy,” said Ademi.

“An overhaul in the way epilepsy diagnostic and therapeutic care is delivered is a mammoth task but is likely the only effective way to dismantle existing barriers. We need more holistic management.”

According to The Florey, 260,000 Aussies live with epilepsy. Of the survey respondents, 5.8 per cent required formal care for an average of 20 hours per week. Meanwhile, 17.7 per cent required informal care of 16 hours per week on average.

Employers can do their part by learning to understand this condition and provide facilities that cater to those affected.

As discussed by Lesslie Young, chief executive of Epilepsy Scotland, some paths to creating an epilepsy-friendly workplace are:

• Train staff to recognise epilepsy and appropriately respond if they witness a seizure.
• Make reasonable adjustments to your working environment.
• Offer customer information onsite and online to help people access your business.
• Promote awareness of epilepsy.
• Encourage customer feedback.

Ademi called for better recognition of the role of carers, who play an integral part in supporting people with epilepsy.

“The often-overlooked contribution of caregivers to our economy is immense and should be a fundamental consideration in health economic analyses,” she explained.

“Our research highlights the current quality of life for individuals affected by epilepsy, underscoring the urgent need for improvement.”

For those living with epilepsy, communicating the condition with your employer could be a smart move. While not necessary, disclosing epilepsy can help if an issue arises. This is most important if:

• You require some workplace adjustments made at work to help you do your job.
• Your co-workers will need to support you if you have a seizure at work.
• There is any risk of injury to you or your co-workers if you have a seizure while performing your role.
• Your epilepsy potentially impacts the health and safety of your workmates or the public.