I have to fight for PIP despite having 25 seizures a month

A man with epilepsy says he has repeatedly had to fight the Government for personal independence payment (PIP), as calls grow for improved access to the disability benefit.

Murray Goulder, from West Sussex, condemned the “cruel” assessment system which has seen the Department for Work and Pensions (DWP) cut his payments twice since 2018.

The 44-year-old, who is now once again receiving PIP, said he was worried Conservative plans for a dramatic overhaul of the benefit in a bid to cut “spiralling” costs could make the process even worse.

The charity Epilepsy Action has warned the plans “will only make it harder” for people with the condition to access support.

Labour, if elected, will wait until after the general election to make a decision on the Tories’ PIP proposals, i understands.

Mr Goulder suffers from a form of epilepsy that gives him petit mal seizures, which means he becomes unconscious for a short time and is unaware of what is happening.

He said that specialists, who monitor his condition through an implant, have found he has about 25 a seizures month – leaving him at risk of harming himself if he carries out basic tasks alone.

However, Mr Goulder had the daily living component of his PIP pulled by the DWP in April last year after a reassessment of his condition.

Having been awarded nine points for his daily living needs at the end of the previous PIP assessment process – just above the eight points required for a payment – he was awarded zero points last year.

“I had a letter from my neurologist saying ‘he’s never going to get better’. So I don’t understand how they could have taken points away,” he told i.

To help determine the benefit award, PIP assessors award points after observing how a claimant’s ability to carry out certain tasks is affected by their condition.

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Mr Goulder depends on his wife to prepare all their meals, as well as managing his medication, since he suffers from serious memory lapses.

She also supervises him in the shower, after he fell and hurt himself during one seizure.

He is a Royal Mail worker and has to take taxis to and from work because his condition prevents him from being able to drive.

“The [DWP] report said I had ‘no physical restrictions’,” he said. “When I challenged it, I told them that’s not relevant to a neurological disorder – that it isn’t safe for me to do things because of my seizures and memory issues.”

Mr Goulder said the PIP decision in April 2023 resulted in him losing the £247 basic daily living component he had been receiving every four weeks, which put the couple under financial pressure.

He estimates he has lost out on more than £3,500 in the past 14 months.

He and his wife have had to spend their own money to cover his pain medication, additional life insurance, some home adaptations and equipment, he said. The couple went without holidays and stopped going out to any events.

“It’s made life more of a struggle. You start paying things yourself,” he added.

He decided last year that he would challenge the DWP’s decision at a tribunal. After a year of battling the Government, he was told last week that he had been successful, and the basic daily living component of PIP would be restored. The weekly rate has now increased to £72.65, or £290 every four weeks.

“The whole process of fighting the decision has meant my stress levels have gone through the roof,” he said.

“It’s a cruel system. They set you up to fail with certain questions, with how rigid the system is. I hate to think some people are too frightened to appeal, because they are made to feel like liars.”

Murray Goulder has been hospitalised several times because of his repeated seizures

For Mr Goulder, the battle for the benefit is history repeating itself. In February 2018, his claim for PIP was rejected and his story was covered by i. One year later, he won payments and a successful tribunal challenge.

“The first time [in 2018] my assessor talked about me having a good gait. The report said that I was well dressed. I don’t understand how they can judge someone’s disability based on how they dress,” he said.

“They judge too much on physical capabilities. It’s not flexible enough to take into account neurological conditions. You’re assessed by someone who doesn’t understand you or the condition.”

Mr Goulder is sceptical of the Conservatives’ plan to replace PIP with a new six-tier system of benefits that would see many recipients receiving less money than now. There are also proposals to replace some PIP payments with vouchers and one-off grants.

“I suspect it is about trying to cut the bill. It’s worrying, because I don’t trust it will turn out as they say,” he said. “But the current system doesn’t work either. So it’s worth the next government looking at the assessment [process].”

He urged Labour to consider looking at changes made in Scotland, where there is now greater reliance on specialist medical advice for disability benefits, calling it a “brilliant idea”.

Daniel Jennings, senior policy officer at Epilepsy Action, said the current system for England and Wales was “repeatedly failing people with epilepsy”.

He said the criteria overlooks challenges that people with the condition face “such as the side effects of epilepsy medications or the injuries that can be incurred as a result of seizures”.

He added: “Recent announcements of a potential further crackdown on disability benefits, especially with the proposed criteria, will only make it harder for people with epilepsy to access PIP. We strongly oppose the proposed changes and are urging people with epilepsy to make their voices heard.”

After a summary of Mr Goulder’s history was put to the DWP, a spokesperson said: “The i did not give us the necessary details or enough time to respond to this case.”