According to the Office for National Statistics (ONS), more than half of people with epilepsy of working age in the UK are economically inactive. This term refers to people who are not currently in employment and are not looking for work.
The ONS figure shows that 53.1% of people with epilepsy were economically inactive in the year from July 2020 and June 2021. This is a reduction from around two thirds (65.2%) at the beginning of 2020 (January-June).
However, this is still among the highest rates of economic inactivity among disabled people, behind conditions like autism, severe learning disabilities and mental health conditions. In 2021, across England, Scotland and Wales, 22% of working age people in the general population were economically inactive – less than half that of people with epilepsy.
Reports suggest that the reason for the high levels of economic inactivity is “long-term sickness and pressure on the NHS”.
‘I haven’t been able to work’
Paul Fawcett, 44, from Northumberland has had to give up work because of his uncontrolled epilepsy.
Paul said he has lost two jobs because of his epilepsy. His first job was in advertising and required a lot of driving. When Paul had to hand in his licence, he felt unsupported by his employer.
“I was told not long after that that I was being made redundant,” Paul said. “They had to make cuts and I was the only member of staff to lose their job. A few weeks later, they had employed someone else to do my job.”
Paul’s second job was in the prison service. He had disclosed his epilepsy during his interview and had got the job, but following a seizure, he started to feel pushed out. He was eventually told there was no position in the prison for him and was offered a position in Durham.
“How was I going to get to Durham for 7am if I couldn’t drive? Unfortunately, [since then] I haven’t been able to work as my epilepsy has got a lot worse. I have daily seizures.
“I read about faster access to treatment for people with epilepsy [to help to] possibly get employment or stay in a job. I’ve been waiting around two or three years now to go into hospital for a week for video monitoring, but with the current situation with the strikes, think I may have to wait a bit longer.
“My wife Michelle is my carer. She’s amazing and has seen me in all sorts of states.”
Michelle has also had to give up her full-time job as a mediator to look after Paul. She said: “I wake up in the morning thinking ‘Is he dead?’ At night, I pray I can hear him snoring so I know he’s alive. People don’t understand the responsibility I feel to keep him alive.”
Harder to access and stay in jobs
Daniel Jennings, senior policy and campaigns officer at Epilepsy Action, said: “Long-term health conditions can have a huge impact on people’s ability to work, as we know that’s often the case for people with epilepsy. We know of many instances in which an epilepsy diagnosis has meant having to leave a job, massively reducing hours or changing career paths completely, and that is never easy.
“Not only are people with epilepsy more than twice as likely to be economically inactive compared to the working age population overall, but the delays they’re now facing in the Access to Work scheme are making it even harder for them to access and stay in jobs.
“New reports now suggesting the sharp increase in economic inactivity is more likely to be driven by people waiting for treatment, as well as by individuals who permanently live in poorer health, show there is a clear need to re-evaluate and address the causes.
“The NHS struggling to cope with demand may be further delaying or preventing people with a condition from being in work, including those who are waiting to be treated for operations, as well as those who need ways to manage a long-term condition like epilepsy.
“Better and faster access to treatment could mean more people, including those with epilepsy, may be able to re-enter or stay in the workforce.”
Epilepsy Action has more information on employment and the Access to Work scheme.