When Murray Goulder applied for disability benefit last year, he thought he’d have no trouble being awarded it. Having suffered from epilepsy for many years, his condition meant he was unable to go anywhere alone in case he had a seizure.
Murray couldn’t even travel to and from work or cook a meal for himself because it was too dangerous. Plus, the 38-year-old from West Sussex was already on Disability Living Allowance (DLA), so he assumed transferring over to Personal Independence Payment (PIP) wouldn’t be an issue. He was wrong.
After undergoing an assessment that he says was “discriminatory against hidden disabilities”, Murray was turned down for PIP and forced to embark on a year-long battle to get his financial aid reinstated.
‘It’s been very stressful’
“It has been very stressful but I’m glad I finally got it resolved,” he told i. “I felt like the outcome had already been decided before I even had my assessment for PIP but thankfully, the judge agreed that I was entitled to it.”
Murray’s ordeal began in November 2017 when he received a letter notifying him that his DLA was due to come to an end.
He’d applied for it in 2012, after he began struggling with his condition.
“I was diagnosed with epilepsy at the age of 16,” he explained. “I was having a driving lesson when, all of a sudden, I woke up about a mile away from where I’d started with no recollection of how I’d got there. I’d had some sort of black out so my instructor told me to go and see my doctor.”
which gave him petit mal seizures – where the person becomes unconscious for a short time and is unaware of what is happening around them. It meant he would never be able to drive and would need to be on medication for the rest of his life.
“I think it was due to bruising on the brain caused by a traumatic forceps delivery when I was born,” Murray said. “I’d had one seizure as a baby but nothing since. I don’t know what triggered the epilepsy again but this time, it was there to stay.”
Trying to get by
Murray tried to live as normal a life as possible, finishing his A levels then going off to university to study architecture. But he dropped out in his third year after his father passed away and the severity of his seizures increased.
“Stress definitely made them worse and I just couldn’t focus on my studies any more,” he said. “I never knew when a seizure was coming on, like some epileptics do. It was like I was just suddenly not there any more. I could be talking one minute then completely shut down, drooling and fidgeting.
“Sometimes I’d be walking down the street then come round on the floor somewhere, not having a clue how I’d got there.”
Deciding to work for the post office instead of returning to his studies, Murray did his best to manage his condition with medication but suffered from side effects.
“I became forgetful and put on a lot of weight,” he said. “At work, I’d have to put reminders everywhere so I wouldn’t forget things.”
Journeys also became difficult.
“My workplace was in the middle of nowhere so not easy to get to,” he explained. “I had to take trains there and back daily but, one time, I had a seizure on the platform and almost walked onto the tracks. If it hadn’t been for someone spotting me and pulling me back I’d have been killed by the incoming train.”
On another occasion Murray stepped out into oncoming traffic while out walking and was almost hit by a car.
“There were so many near misses that I realised it just wasn’t safe for me to use public transport any more,” he said.
Adapting for safety
When he married his wife, Karen, in 2008, things got a little easier as she could drive. But, working shifts in a job of her own, she couldn’t always be there.
In 2012, after being hospitalised following a cluster of 90 seizures in one weekend alone, Murray decided he couldn’t take any more risks and began using taxis to get around. He also adapted his shower so he wouldn’t slip after falling unconscious while washing.
“That had happened a few times, once when I’d run a bath and was standing next to it waiting to get in,” he recalled. “I could have drowned if Karen hadn’t been home. She often had to stay near me as it wasn’t safe for me to wash alone.”
Struggling to meet the £260 monthly cost of travel, he did some research on the internet and discovered he could apply for DLA.
“All I had to do was have an interview on the phone, provide medical evidence of my condition, and that was that,” he said.
“It was a huge help and a massive relief not having to worry about getting to and from work any more.”
But then in November 2017, he received a letter saying he would no longer be entitled to DLA from February 2018 and would have to apply for PIP instead.
“I had to attend an assessment in December that year which was a joke,” he said. “I was asked things whether I could cook myself a meal or walk to the shops and back. I explained that I could do most things but couldn’t do them alone because of the risks that I might have a seizure.
“Then they checked things like whether or not I could maintain eye contact. The assessment was ludicrous. It was designed for someone with a disability that prevented them from doing physical tasks, not someone with epilepsy or any other neurological condition.”
When Murray received the results of his assessment he was shocked.
“I needed eight points or more to qualify for the daily living component of PIP and had scored zero,” he recalled. “Among the reasons given on the report was that I was well dressed, didn’t seem tired, and had a ‘good gait’. The assessor hadn’t even seen me walk so how would they know that? And how can you judge someone’s disability based on how they dress or whether they are tired?
“I feel tired all of the time because I have to take painkillers for headaches but how would they know by just looking at me?”
Furious, Murray asked the DWP to reconsider his eligibility. When they refused, he took the matter to an appeal tribunal on 26 February this year.
“It took just 45 minutes for the judge to overturn their decision,” he said. “I was awarded 21 points out of 24 in total and was given £438 a month for daily living and mobility.
“I was shocked as I didn’t go into court thinking I was necessarily going to win but was so pleased when I did.”
Murray has not yet received his first payment but says it will make a huge difference to his standard of living.
“It means I will be able to make adaptations to our home, pay for supplements and regular painkillers I need and carry on working,” he explained. “It might seem strange needing disability benefit when you are employed but there are so many additional costs other people don’t have.
“The medication helps control my seizures but it doesn’t prevent them. I use things like CBD oil to help with the side effects too, which costs £35 a jar and isn’t available on the NHS.
“People with disabilities shouldn’t have to fight for what they need and the current assessment system discriminates against those with hidden disabilities like mine. More people need to appeal but they aren’t brave enough.”
Epilepsy assessment issues
A survey by the charity Epilepsy Action revealed that almost nine out of 10 people with the condition felt the person carrying out their benefits assessment did not have an understanding or knowledge about epilepsy.
Philip Lee, chief executive at Epilepsy Action, said: “The benefits system is failing people with epilepsy. Time and again, the assessment process for Personal Independence Payment fails to recognise that epilepsy can affect a person’s life far beyond the seizures themselves.”
A spokesperson for the Department for Work and Pensions said:
“PIP looks at the way an individual’s health condition or disability impacts them on a daily basis and decisions are made using all the available evidence. Under PIP, 27% of those with epilepsy get the highest possible level of support compared to 6% under DLA.
“In November 2017 we updated our guidance which will increase entitlement for a number of claimants, particularly those with conditions such as epilepsy. We have now begun an administrative exercise to identify existing claimants who may be affected and may be entitled to more support under PIP.”