Over a quarter (26%) of workers in Great Britain would be concerned about working with a colleague with epilepsy, according to a new nationwide YouGov survey of over 2,000 people. The majority of workers who would be concerned (63%) stated that their worry was due to having no idea about what to do to help a co-worker suffering a seizure.

Dr Dominic Heaney, Consultant Neurologist University College London:

I speak to patients with epilepsy every day. Apart from the challenges of finding the right anti-epileptic treatment, another important task is to preserve as far as possible the normality of their lives after epilepsy diagnosis. That means maintaining relationships with family and friends, but also their jobs and importantly, income. These survey results reinforce what I have hear from patients: discrimination in the workplace is common and often unwitting - with a lack of knowledge about epilepsy amongst the general public, what epilepsy means and doesn’t mean - with people being unaware of the right actions if somebody has a seizure, or even what a seizure may look like. Much could be done. Seizures can present in many different ways, so it is important that people know how to recognise them and what to do to give the best help possible.

Lack of awareness around epilepsy, the world’s most common chronic neurological condition, is reinforced in the other survey responses, which reveal that 76% of those questioned have not been offered training on what to do if someone were to have an epileptic seizure at work. This is despite current UK regulations stating that employers must provide their staff with the required information, instruction and training to ensure their health, and the safety of their colleagues at work. Further, over one in five (21%) of adults in Great Britain are unaware that epilepsy can be fatal, with only 17% claiming that they would definitely know what to do to help someone having a seizure.

Matthew Sowemimo, Epilepsy Society Director of External Affairs and Fundraising said:

People with epilepsy are up to twice as likely to be at risk of unemployment compared with those who don’t have the condition. This problem would be reduced if there was training in place to inform people about what to do if someone had a seizure at work. People with epilepsy will feel safer and more supported within the workplace if they know that their colleagues are better informed about epilepsy. Employers may also be more confident in hiring someone with epilepsy if they had a better understanding of the condition.

There are currently 600,000 (or one in 100) people with epilepsy in the UK and the number of cases is continuing to rise, with a prediction of a 5.8% increase by 2022. Seizures, which often occur without warning, make it difficult for patients to lead a normal life, as well as hold down a job and relationships. The economic cost of epilepsy in England & Wales is estimated at £2 billion annually, 69% of which is due to indirect costs such as unemployment and mortality.

Johnny McClue, a patient who began having ‘absence’ seizures (short lapses of awareness lasting a few seconds) at the age of 27 said: “A lot of the seizures happened at work and that is the point at which it became difficult for my boss and other employees to deal with it. It was not that I was unconscious I would just zone out for a few minutes. I felt isolated in the workplace with no one to speak to. I was coming home from work absolutely exhausted as a result of the seizures”. Over the course of the next year Johnny continued to have seizures, despite his medication. He was also made redundant from his job.

Another patient, Jasmine Smith, was 17 years-old when she was diagnosed with a brain tumour which triggered epileptic seizures. She had hoped to become a ballet dancer but was asked to leave the university where she was studying dancing. The same happened with several jobs, including cleaning, waitressing and working in a shop. Jasmine, now 25, is seizure free, and as a result of her experiences has become a nurse and is training to become an epilepsy specialist. She said:

What happened to me with epilepsy has really opened my eyes and made me appreciate being healthy and not having seizures. Being asked to leave university and losing jobs has also made me want to fight harder and to stop it happening to other people. I stumbled upon nursing by accident and epilepsy made me want to become a nurse and as it turns out I love nursing.

National Epilepsy Week takes place between 15th and 21st May 2016. It aims to help raise awareness of epilepsy and improve the lives of those affected by the condition.