Friday, 8th November 2019, 7:14 pm
Updated Friday, 8th November 2019, 7:23 pm
He found that, as long as he avoided stress, he could keep episodes to a minimum and live a relatively normal life.
Ian says the combined pressure of having to fill out complicated forms online, wait weeks for funds, and undergo assessments left him feeling so mentally exhausted he ended up having severe fits that left him bruised, bleeding and needing hospital attention.
“The online applications are so complicated and it is so difficult to work out what you are entitled to most people can’t make sense of the system,” Ian told i. “It is hard enough for a healthy person to apply for Universal Credit but for someone like me, who has absence seizures which cause confusion and memory problems, it’s a nightmare.”
“People don’t realise that after a severe seizure, it can take you weeks to recover and feel normal again”
Ian has had epilepsy since he suffered a head injury in 2014, when a loft ladder slid down and hit him. The following year he moved to Valencia with his wife, and they set up a online business together. The use of CBD oil and cannabis for medicinal purposes wasn’t legal in the UK then but was allowed in Spain so Ian began using the drug to manage his symptoms.
“It really helped, so much so that at one point, I didn’t have a seizure for seven months,” he recalled. “But then the work dried up and my relationship broke down. I couldn’t afford the medication any more and, with the additional strain of the break up, my condition deteriorated.”
Ian went out one evening in July 2016 and the next thing he remembered was being picked up by the police at around midnight. He had suffered a severe seizure and was found wandering the streets covered in cuts and bruises.
His shoulder was badly injured and, when he was taken to hospital, he suffered another, ongoing seizure for 45 minutes and had to be put into an induced coma. It was thought he’d been accidentally hit by a car.
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After that incident, Ian decided to return home to the comfort of his friends and family. Having no savings and now disabled, he applied for Employment Support Allowance (ESA) and housing benefit to tide him over until he was able to work.
“People don’t realise that after a severe seizure like that it can take you weeks to recover and feel normal again,” he explained. “I always planned to get a job but knew it would be a while before I was well enough to work.”
For a while Ian tried to manage on the ¬£366 a month he was getting in ESA together with housing benefit to cover the rent on his flat in Derby. But it was a struggle.
“It worked out at just over ¬£90 a week to cover bills, food and travel and it wasn’t really enough so I got a job as soon as I could,” he said.
For the next few months he had various jobs – working in offices temping, in shops and handing out flyers. But he was in and out of work due to his epilepsy, relying on benefits whenever he was too unwell. When he applied for Personal Independence Payment (PIP) due to his condition and was awarded it, he thought things would get easier financially.
“I started getting ¬£244 a month more which made a bit of a difference but it was still only ¬£61 more a week to cover food, essentials and bills,” he said.
Things took a turn for the worse once more when, after a period of work at a charity and telemarketing company, Ian found himself unemployed again and went back to his local job centre to reapply for ESA.
“They told me it had been switched over to Universal Credit and that I would have to apply online at home,” Ian said. “I didn’t really know what UC was then but, having done a lot of online work before, I didn’t think it would be that hard to set up.”
But Ian found it a struggle to get the help he needed, claiming he had to undergo “stressful” work assessments, wait months for payments, and spend many hours researching what he was and wasn’t entitled to.
He applied for the living component of PIP in July this year and had to undergo another assessment. Then it took three months before he received any money.
“It was all the waiting around to get it and the assessment itself that was the problem – they ask all these silly questions like whether you can raise your arm up. I have epilepsy which isn’t a visible disability but it means I have memory problems, confusion and a lot of absence seizures, so can’t focus or concentrate on what I’m doing.
“You feel so pressured during the assessment to convince them you are telling the truth and for me, that kind of stress can bring on severe seizures and it did.”
In August this year, Ian was found by a friend at his flat soaking wet and wandering around his living room confused and wearing broken glasses after suffering a seizure while taking a shower. A month ago, he was sat in his flat writing on his laptop when he suddenly came round to find himself on the floor with a cut on his head, two black eyes, and the laptop broken on the floor.
“There were many times I would find myself penniless and having to rely on food banks, with no money for gas”
“There was blood everywhere,” he said, “but I didn’t remember a thing. That’s what happens when I have a fit and it can be very scary. I have to make sure all of my cups and plates are plastic in case I hurt myself and have mostly wood furniture as glass is so dangerous for me.
“The best thing I can do to avert them is to reduce stress but it hasn’t been easy lately.
“It took a whole year to receive the full benefits I am entitled to,” he explains, “and it was one of the most difficult years ever. There were many times I would find myself penniless and having to rely on food banks, with no money for gas. This month alone I have been left with just 38p of gas on the meter.”
Ian says he was getting ¬£281 a month in Universal Credit after deductions for an advance and an overpayment, and after his rent was paid directly to the housing association – ¬£85 less than he received on ESA.
He says his payments were recently increased and he was finally also given an additional ¬£336 a month PIP last month, which he says will be a “great help” with the basic cost of living.
“I am finally getting what I should have been getting all along but it has taken all this time to get there,” Ian said.
He also received a letter this week from the DWP finally confirming that he will receive some back-dated pay too which he adds was a huge relief.
“The epilepsy affects my memory and it is so hard documenting things for that reason,” he added. “The DWP needs to take this into account when dealing with people who have the condition.”
Ian, who is now no longer able to work,¬† has written a poem about his ordeal called Universally Discredited, which he has published on social media.
“I wanted to express how I felt about the whole thing and connect with other people and found that poetry was the best way to do that,” he said. “I hope it helps others going through the same thing realise they are not alone.”
A spokesperson for the DWP said that Ian’s initial claim for PIP “was disallowed as he did not return his claim forms”. The spokesperson added that he continues to receive his full benefit entitlement of ¬£1,021 before deductions and also receives ¬£479.00 in PIP every month.
Life on the edge. Oven chips n no veg.
Treading the breadline. Falling off the ledge.
No pennies left, but still plenty of month.
Universal (LIVES RUINED) Credit hits like a punch.
“What’s for lunch?” said the kid to his mum.
“Just bread and butter” she said n looked glum….
The kid packed his butties n books in his bag.
Sets off to school, but he’s seriously sad.
Never new Nikes or nothing like that.
Hand me down trackies, his brother’s old cap.
School uniform’s torn, school shoes are worn.
The lad’s lived like a loser ever since he was born.
Sanctioned for missing a meaningless meeting.
Mum’s got no money. The kids won’t be eating.
Benefit scroungers just lounging around?
The reality’s different down here on the ground.
By Ian Allsopp
@ianisnew on Instagram and Twitter