People living with epilepsy have the highest refusal rate of all people claiming the new disability benefit Personal Independence Payments (PIP), which is gradually replacing Disability Living Allowance (DLA), official figures show.

Department for Work and Pensions (DWP) statistics reveal that almost half of people with epilepsy (48%) reassessed for PIP from DLA have had their claim denied, almost double the national average for all disabilities and health problems (25%).

In total, 64% of people with epilepsy reassessed for PIP have had their claim either reduced or refused, as Epilepsy Action described the new benefit as “inadequate and ineffective” and warned it’s putting the lives of people with epilepsy at risk.

Louise Bolotin, 55, who suffers from tonic-clonic and focal seizures and lost £307 a month when reassessed for PIP from DLA, told the charity. “The seizures can happen at any time. I never know when I’m not going to be able to do stuff, I have no control.

“When a tonic-clonic seizure happens, I can’t walk or even get out of bed for 24 hours. Even getting from the bed to the bathroom is hard. The DLA helped me to pay for taxis and takeaways during times like these.

“The whole of the PIP system doesn’t take account of people with fluctuating conditions like epilepsy. It’s so frustrating to explain every aspect of your condition and how it affects your life, and then see the DWP be so dismissive.”

Epilepsy Action is calling on the government to make the system “fairer” for people living with epilepsy, and has submitted evidence to the Work and Pensions Committee ahead of its upcoming inquiry into PIP.

Epilepsy Action’s chief executive Philip Lee said: “The current system is failing to recognise the complex needs of people with epilepsy. PIP is supposed to be helping people with disabilities to live more independent lives. Yet, ironically, they are being denied the very independence they deserve.

“We are hearing increasingly concerning stories from people who say this has a negative impact on their safety and day-to-day living. Their physical and mental health are also being affected. Some people have even told us they feel suicidal.

“The current system needs to change. If it doesn’t, it will continue to have more devastating effects on people with epilepsy.”

       
  • florrie webster

    It isnt only benefits that people with epilepsy have a problem with. Many years ago my daughter was diagnosed with complex partial seizures, she had tests done, the neurologist was very thorough, she wrote that partial seizures are not easily recognizable as epilepsy. This is very true, my daughter is now in her thirties, frontal lobe seizures cause distressing unusual symptoms, unfortunately they can get misdiagnosed as a pyschiatric or pschological problem.Years ago extensive tests were done , it took months before a diagnosis was made. A lot of people with this type of epilepsy are now been diagnosed with pyschiatric problems, stress , anxiety, or any other pyschological distress. This isnt helping the affected person, not enough testing is done and the person is told it is not epilepsy. Having a neurological condition passed off as something else, or as the doctor said about my daughter, only having minor seizures that dont affect her daily living. That is just ridiculous, if a person is regularly or not so regularly experiencing seizures, feeling fear, unable to talk, confused, that does affect the person greatly . Many years ago dwp said about daughter not entitled as its only absence seizures, having an absence seizure as you are about to cross a road, could potentially be catastophic.