What's the issue?
Figures from the Office of National Statistics show that in 2018 just 29.7% (nearly 1 in 3) of people with epilepsy living in the UK were employed. This is not because people with epilepsy are unable to work. There are very few jobs someone with epilepsy cannot do, depending on how their epilepsy affects their daily life. Many people with epilepsy can carry out a job with slight adjustments.
Despite this, there are many people with epilepsy who are unable to find a job. Epilepsy Action asked the Institute of Employment Studies (IES) to research this area. This would help us understand why people with epilepsy are struggling to find jobs. Finding the reasons why people are struggling will also help us to address these issues.
The IES research found that one of the biggest barriers to employment was a lack of understanding of epilepsy. Many employers were unaware that not everyone with epilepsy has tonic-clonic seizures. They also not aware of the different ways that epilepsy can affect different people or that many people’s seizures can be controlled with medication. They also didn’t know that not everyone’s seizures are triggered by flashing lights. Employers also worried about the impact seeing a colleague having a seizure could have on other members of staff.
The government has committed to increasing the number of disabled people in work. The number of disabled people in work has risen by 930,000 (31%) in the last 3 years. The number of disabled people who are out of work, however, remained roughly the same at around 3.7 million. Programmes designed to help disabled people into work are not meeting the current demand. Since 2011-12, DWP spending on employment support for disabled people has fallen in real terms by £50m.
What we are doing
Epilepsy Action has already taken steps to support people with epilepsy looking for work. The charity offers a range of advice and information materials about epilepsy and work. We also regularly train employers about epilepsy and the adjustments that can be made for employees with epilepsy.
Plans for other resources, including online tools to help employers support people with epilepsy in the workplace, are being developed. Epilepsy Action also has the ‘Epilepsy and you’ online self-management tool. This was designed to help people live better with epilepsy and become an expert in their own condition. The IES research stated that self-management tools are a key way people with epilepsy can improve their chances of finding and staying in a job.
There are a number of government programmes aimed at helping disabled people to find a job. However, these do not always work. Together with other charities, we regularly meet with the
Department of Work and Pensions. We highlight problems with the government’s employment support programmes and suggest solutions to improve what they provide.
It is clear, however, that more needs to be done. We will continue working with MPs, charities and others to push the government to provide more support for people with epilepsy to find, and stay in a job.
The research from IES found that people with a higher knowledge of epilepsy had a more positive perception of someone with epilepsy as an employee. Improving knowledge and understanding of the condition should help improve the employment chances of people with epilepsy. We will therefore continue working with employers to improve their understanding of epilepsy, through our awareness training.
How you can be involved
We would be interested to hear from you if have had any problems with your employer, or in finding a job and staying in work, due to epilepsy.
We would also like to hear of your experience of trying to access employment support through government schemes such as Access to Work or Specialist Employability Support.
Please get in touch on 0113 210 8866, or email firstname.lastname@example.org