It’s a condition that is often called “invisible” – and while you might not be able to see disability for those with epilepsy it can be seriously debilitating.
It can stop people working, driving and can leave people injured and extremely worn out after seizures.
Across Shropshire and the West Midlands people with epilepsy are finding that their claims for benefits are being denied under what has been branded the “seriously flawed” new system, Personal Independence Payment (PIP).
Since 2013, the Government has been moving claimants from the Disability Living Allowance to the Personal Independence Payment.
According to figures from the Department for Work and Pensions, in those six years claims have been denied to 35 per cent of applicants in Shropshire, about 40 per cent of those in Wolverhampton, Telford, Stafford and Walsall, and about 50 per cent of applicants in Sandwell and Dudley.
The rejection rate for epilepsy patients is higher than the average across all disabling conditions, which is 24 per cent.
Variety of seizures
Mother Angelika Barre, 36, has been living with epilepsy since a young age and she has started up and runs an epilepsy support group in Shrewsbury to raise awareness of the condition.
Angelika has a variety of seizures which manifest slightly differently.
She has absent seizures, where essentially she blanks out for a few seconds, myoclonic seizure, where the body twitches or jerks for a few seconds and tonic-clonic seizures which is where she will fall to the ground and begin to shake.
The condition has taken its toll on Angelika over the years and she has memory loss and has been left unable to work.
The physical seizures have often left Angelika bloodied, battered and bruised and with cuts and grazes after falling to the floor.
They absent seizures she has occur on average 50 times a day and can cause moments of blankness which have caused her to fall down kerbs or walk into the path of oncoming cars.
Until now she has been receiving both Disability Living Allowance and Employment and Support Allowance to help support herself, her daughter Jessica, seven, and husband Steven.
“I’m currently in the process of going over to PIP and I’m going to have a bit of a wait,” she says. “It has been a bit of a struggle moving over with all the forms that you need to fill out again with a specialist and then you just have to wait and find out what they are going to say.”
Stress and anxiety
Angelika says she is aware of numerous cases where people have been denied PIP payments and says this has created some uncertainty for her about her own case.
“It has caused a bit of extra anxiety,” she says. “Stress and anxiety like that can be a trigger for seizures too.”
While a decision is yet to be made, Angelika says the thought of being denied benefits does not bear thinking about.
“I can’t get a job,” she said. “We have things to pay for as a family. Bills, the house, my daughter’s school clubs and things like that. I would, of course, hope my case is seamless but there have been so many people who can’t get PIP. Without it we are really going to struggle.”
A survey by the charity Epilepsy Action revealed that nine in 10 sufferers felt that the person carrying out their PIP assessment did not understand their illness.
Chief executive Philip Lee said: “Time and again, we hear that the assessment process for PIP fails to recognise the impact epilepsy can have on a person’s life.
'Seriously flawed system'
“Without PIP, many are unable to afford the adaptations they need to make in order to live a safe and independent life.
“This is a seriously flawed system that must change, or it will continue to have more devastating effects on people with epilepsy.”
PIP is supposed to cover some of the additional costs of having a long-term health condition, and is available to people in or out of work.
The DWP said the new benefit was introduced because the previous system was “outdated”.
A spokesman said that of those people with epilepsy who are awarded PIP, 27 per cent get the highest level of support, compared to just six per cent under the previous Disability Living Allowance.
To qualify for PIP a claimant must be between 16 and the state pension age, have a long-term health condition or disability, and have difficulty with activities of daily living or with mobility. They must have had these difficulties for at least three months and expect them to last for at least nine months.
But anti-poverty charity Turn2Us said that the different assessment criteria for PIP can put epilepsy patients at a disadvantage.
DLA is awarded when people need supervision to keep safe, which covers epileptic seizures, whereas PIP is focused on whether someone needs help achieving specific tasks, such as preparing food, washing and dressing.
In addition, applicants will generally only satisfy a PIP criteria if it applies to them more than half the time, which is rarely the case with seizures.
Anna Stevenson, welfare benefits specialist at Turn2Us, said: “PIP assessments have come under criticism due to doubts about the capabilities of the ‘health professionals’ carrying out assessments, who tend to have little or no expertise in the medical condition they are assessing.
“This can lead to an inadequate understanding of a claimants needs.”