A disabled man with an inoperable brain tumour has been left without social security support

A man who has an inoperable brain tumour has condemned the government after his benefit support was stopped, leaving both his partner and himself with just £5 a week to feed themselves.

Karl Riley says that he’s been living below the bread line since his Employment and Support Allowance (ESA) and housing benefit were taken away three months ago when he moved in with his partner, whose income is just a few hundred pounds a month.

Karl, who is 32, says that he has a tumour that is embedded in his brain stem. This has caused him to suffer severe neurological symptoms, such as permanent limited mobility, double vision, memory loss, confusion, extreme anxiety, depression, nausea, insomnia, tinnitus and facial paralysis. 

Despite his health problems, Karl manages a few hours of self-employed work each week. He manages a band part-time, but isn’t capable of working full-time. He says he risks losing his house now that his benefits have  been stopped. 

Karl has also been waiting seven months for NHS physiotherapy treatment. 

He told i News: “I feel like I’m getting no help from either the government or the NHS. My partner and I can’t feed ourselves and pay other living expenses on just £5 a week. Who can survive on that? I understand now why so many people are going to food banks. This government leaves people to starve.”

Karl found out by accident about his non-cancerous tumour when he had a brain scan as part of a medical trial in 2012. At the time he had no symptoms and he was told that doctors would take a ‘wait and see’ approach.

He continued to work for nearly five years but early last year took a turn for the worse, becoming symptomatic. A scan showed the lump had grown to four times its original size. “I was fine at first. They said it wasn’t appearing to grow much and I carried on managing my five bands.” he explained. “But then the neurological symptoms started.” 

Karl had emergency brain surgery last March to drain a build up of fluid, followed by a second operation in July, when doctors told him the tumour was too embedded in his brain, making it inoperable. 

Karl said: “I was bad after the second operation. It caused me a lot more problems and I had to relearn how to walk.” He then had to undergo six weeks of radiotherapy in a bid to reduce the mass, and says he was vomiting every day and continues to feel the side-effects. 

Karl, who then lived with his partner Samantha Neale, 27, had some savings to fall back on at the time, but when they ran out of money, each of them were forced to move back  with their parents.

Karl had been struggling with his mobility. So in December, he made a claim for ESA. He was awarded £73.10 a week, which is the Support Group level of award, for those who cannot work because of illness or disability, plus he was awarded a basic award of £54 a week when he claimed Personal Independence Payment (PIP), which replaces Disability Living Allowance. Then in March, Karl and Samantha decided to live together again, renting the cheapest place they could find for £425 a month. However, Samantha became ill herself and was unable to work.  She currently receives statutory sick pay.

Karl said: “We wanted to live together again, I was stuck in my parents’ tiny box room which wasn’t ideal for me with mobility problems. My partner is essentially my carer, and she’s had a lot of problems in the past, then there was my illness on top of them and she just couldn’t cope anymore.” 

Karl had declared the move as a change of circumstances, and says the that government asked to look at Samantha’s payslips and took one that showed a higher than normal payment to be their regular income. 

Karl explained: “Samantha is getting £380 a month in sick pay, but for one month in May she was paid nearly £600 because her April payment was under at £280 due to a processing problem.

“But despite explaining this the benefits people decided her regular income is £600. Our council tax reduction has stopped too and we can’t claim housing benefit.” So Samantha’s back payment – money she was owed – was taken as her income as well.

Once Karl’s ESA was stopped, he was told to claim working tax credits, but his award didn’t include the disability element.

This means that he now has to pay for his rent in full and has no council tax reduction. Karl says that after paying their rent and bills, there’s now so little left that he’s had to resort to setting up a GoFundMe appeal, because he feels so desperate. 

“It’s disgraceful, it feels like begging, but I had no other option or we will lose the roof over our heads,” he said.

“I’ve worked hard all my life, and I can’t help having a brain tumour. The government also make it all so complicated with form after form to fill in, which is hard because I suffer short-term memory problems. It feels like a slap in the face.

He added: “I would love to be able to work more but I desperately need physiotherapy and occupational therapy. I don’t blame Breightmet Health Centre for that, I blame the government for the cuts and leaving NHS resources so stretched.” (Breightmet is an area of Bolton.)

A Department for Work and Pensions spokesperson said: “We’re committed to ensuring that people with health conditions get the support they’re entitled to. Decisions for ESA are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist. Anyone who is unhappy with a decision can appeal.

“People with long-term health conditions may also be eligible for support through other benefits such as PIP.” 

It takes months to get a tribunal date, and before people can appeal, they have to go through a mandatory review first, where the government decides whether their original decision was correct. The mandatory review has no time limit, and an average of six weeks is usual for people to wait for the second decision.

Meanwhile, people are left without an adequate income to meet their basic living needs, and an average of nine months wait for their appeal to be heard.

To donate to Karl Riley’s fund, click here.

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I don’t make any money from my work. I’m disabled through illness and on a very low income. But you can make a donation to help me continue to research and write free, informative, insightful and independent articles, and to provide support to others. I co-run a group that supports disabled and ill people going through ESA and PIP claims, assessments and appeals.

Any donation is very much appreciated – thank you.