Brain tumour sufferer almost had to stop chemotherapy treatment and risk dying after a Universal Credit blunder left him with £4 to live off Father-of-two Matt had no benefits payments for almost three months and considered halting his treatment so he could work

After months spent trying to continue working while battling a brain tumour, Matt Carpenter finally had to admit defeat in November last year. The 30-year-old father-of-two was so sick and fatigued from the radiotherapy and chemotherapy he’d been having, he could barely stand for more than a few minutes, let alone help run the homeless shelter where he’d been employed for years.

With a four-year-old son and seven-year-old daughter to support, the last thing Matt, from east Hull, wanted to do was hand in his notice. He reasoned that he’d be able to manage on benefits, cutting down to spending on the bare essentials, until he was well enough to work once more.

But Matt ended up living hand to mouth, with just £4 left in his bank account and relying on money borrowed from family members after his first Universal Credit (UC) payment took almost three months to arrive.

The i newsletter cut through the noise Email address is invalid Email address is invalid Thank you for subscribing! Sorry, there was a problem with your subscription.

Pure hell

“Those months were pure hell,” Matt told i. “It’s hard enough going through chemotherapy and feeling ill and exhausted every day without having to worry about surviving financially and keeping a roof over your head. There were times I literally thought I couldn’t take any more.”

Matt applied for Universal Credit in November last year, after making the decision to leave his job for good. He’d been diagnosed with a brain tumour in January 2018 after suffering from sleep paralysis and slurred speech.

“I’d been working long hours doing double shifts to save money for a trip to America and also training for an endurance event in the gym daily, so put it down to overdoing things at first,” he recalled. “But then I had a seizure at work one day and was rushed to hospital. A CT and MRI scan revealed it was a brain tumour, which made sense, but it was still a shock.”

Extended sick leave

Matt had surgery to remove 90 per cent of the tumour – a slow-growing type called a Glioma – in March 2018 and his employers allowed him extended paid sick leave for six months to help him recover.

“Although the tumour was on the right side of my brain, that side controlled the left side of my body, so I had left arm and facial paralysis for a while afterwards and needed intensive physiotherapy,” Matt explained. “It still hasn’t fully gone away.”

When he returned to work in August 2018, he thought his ordeal was over. But by 2019 Matt’s symptoms had returned. He began slurring his speech again and forgetting things. A scan showed that the tumour was growing once more and doctors advised he have a course of radiotherapy followed by chemotherapy to shrink it.

“I had to take more time off work as the radiotherapy made me feel so fatigued and when the chemo started last September, I knew I couldn’t carry on,” he said. “I was constantly being sick and felt drained and half asleep most of the time.

I didn’t think there’d be an issue as I had all the evidence to show I wasn’t capable of working – doctors letters, scan images, and confirmation that I was having chemotherapy Matt Carpenter

“It was also a hygiene risk as my immune system was low which meant I was at risk of picking up infections from other people.”

It meant giving up his £1,350 monthly wage, but Matt was confident he’d be able to manage on benefits. He applied for Universal Credit online and was asked to attend a work assessment meeting.

Advance payment

“The guy at the meeting implied that I would be fine,” he said. “He told me I might have to wait a couple of weeks for my first UC payment in December but I’d received a wage of £1,075 from work in November and was due to receive a final pay of £748 in December, so thought that would tide me over in the meantime.

“I didn’t think there’d be an issue as I had all the evidence to show I wasn’t capable of working – doctors letters, scan images, and confirmation that I was having chemotherapy.”

Matt was even offered a £500 advance payment in case he struggled and accepted it. With £395 to pay on monthly rent, £410 on all bills including phone and broadband, £200 in child maintenance and £200 on his own food and dog food, he needed £1,205 a month in total.

Received nothing

But despite being told he’d be getting £282 to go towards his housing costs and £317 for daily living, he received nothing in December.

When he contested, he was told that because he received £1,343 in earnings in November and £897 in December, he wasn’t entitled to any benefit payments for those months.

I was left with £4 in my account at the beginning of this month and had to ask my landlord to wait for the next rent payment and ask my mum for money for food – all while still having chemotherapy treatment Matt Carpenter

“But they were my gross earning figures before tax,” Matt argued. “What I was actually paid wasn’t those amounts and I showed the Jobcentre my statements but they just told me that I needed to learn how to budget. That completely broke me.

“I couldn’t pay my bills or my rent and was worried about looking after my dog. I was left with £4 in my account at the beginning of this month and had to ask my landlord to wait for the next rent payment and ask my mum for money for food – all while still having chemotherapy treatment. It’s been a nightmare.”

Matt said he even contemplated quitting his chemotherapy treatment so he could go back to work and earn again to survive.

“It would mean risking my life but I thought I didn’t have any other option at one point,” he explained. “That’s the situation they left me in.”

Read more: Joiner forced to sell all of his tools and give up work permanently to feed his children on Universal Credit

He was given money and food for himself and his dog by Commando Elite Fitness Bootcamp in Hessle, where he took photos on a voluntary basis.

The kind gesture of £195 in cash to pay his bills as well as the supplies was a God-send for the struggling dad, who was also helped by Hull charity P.A.U.L. For Brain Recovery, which provides support and guidance to people with acquired brain injuries.

Matt finally received £282 and £317 into his account a few days ago but still has to pay back his £500 advance and is waiting to find out whether his application for Personal Independence Payment (PIP) will be accepted.

The DWP also paid him an extra £150 into his account this month as a correction for paying him anything last month.

Not holding out hope

“I have my IPIP assessment today but don’t hold out much hope that I will get it, even though I still have paralysis on my left side and suffer from memory loss and other side effects,” he said.

A DWP spokesman said: “Mr Carpenter has been paid correctly and did not receive a Universal Credit payment in December and January because he received significant earnings.”

The DWP also confirmed that Matt would be receiving an additional Limited Capability to Work payment of £336 a month from April, something he says he knew “nothing about until now”.

“I’m due to have a scan this week to find out if the chemotherapy has helped,” he added. “When you are going through something like this, you don’t need any more added stress, and the benefits system has been nothing but.”