DWP U-turns and resumes some benefits for man with leukaemia after publicity, but won’t reinstate his mobility car Lewis Saunders is still having chemotherapy yet had his Personal Independence Payment withdrawn

Lewis Saunders and his parents spent the past year fighting the Department for Work and Pension’s (DWP) decision to take away his disability benefits.

The 26-year-old, who is battling aggressive leukaemia, had his Personal Independence Payment (PIP) stopped and his mobility car taken away.

Currently undergoing gruelling chemotherapy, he uses crutches or a wheelchair to get around.

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His mother Zoe gave up her job to care for her son full time and has since been diagnosed with a brain tumour. Due to his payments being stopped, she has been unable to apply for Carer’s Allowance.

After the story was published by i, a DWP agent called the family and informed them his benefits were being reinstated– but at the lower rate. This means that Lewis won’t get his mobility car back.

Zoe claims she was told she had an hour to decide if they would accept the offer – and in return they had to drop their Tribunal case.

“They called and said they had reassessed their decision because of new medical information, which is rubbish because there was none,” she said. “It was just a couple of days after the story had appeared.”

“Of course we feel he should have the full rate and the car but it feels like a small victory.”

Brilliant news. After year of battles PIP called Lewis today, got more details from him and urgently re-assessed. They have just called reinstating his PIP backdated to Jan 2018 also reinstating mother's carer's allowance. Thanks so much to all esp @claudiatanner @JohnNicholRAF — Andy Saunders (@1940Andy) January 24, 2019

Days from death

Aged 23, Lewis, from Bexhill, East Sussex, was diagnosed with acute lymphocytic leukaemia (ALL), a type of blood cancer which usually progresses rapidly.

After he was rushed him to A&E when he was seeing flashing lights, became breathless and developed a fever, doctors said if he’d had delayed seeking medical help for a few more days he wouldn’t have survived.

The maths masters graduate was in hospital for six months where he was treated with intense chemotherapy – which must carry on for three years because of how aggressive the disease is.

Lewis was awarded PIP around four months after his diagnosis in June 2016. The benefit is intended to help with the extra costs of a long-term health condition or disability.

In January last year, Lewis was asked by the DWP to attend an assessment.

Zoe, 45, says that on the day of his assessment, her son was sick from the chemotherapy and he collapsed because his leg gave way.

Yet shortly afterwards received a letter to say the financial support would stop, before his treatment had even finished.

Nausea and pain

Lewis needed nine months off work initially then he decided to go back to work as a pricing analyst.

But he is left feeling nauseous and weak after his chemotherapy – which he takes orally daily and he has injected into his spine every two weeks at hospital. After suffering side-effects, he now relies on a wheelchair for long distances.

He has been diagnosed with avascular necrosis (AVN), the death of bone tissue due to interruption of the blood supply, caused by the treatment.

“It’s in both hips and essentially means one of his hips has completely died,” she said. “He also suffered three major blood clots due to the chemo.”

However, despite his deterioration, the DWP stuck to their decision when they asked for a mandatory reconsideration, the first step of challenging a PIP decision.

Cost of hospital visits

We feel he was denied PIP because he is working. But that’s not how PIP is supposed to work Zoe Saunders

Lewis and his mother believes he should be allowed the money to help with the cost of hospital visits – it’s a four-hour round trip to the Royal Marsden where Lewis has chemotherapy.

“We feel he was denied PIP because he is working,” said Zoe. “And that’s why they won’t give him the higher amount again.

“But that’s not how PIP is supposed to work. It is a non-means tested benefit. So it doesn’t matter how much you earn.

“It’s for the extra costs of having an illness or disability. Just because Lewis is determined to keep going and has returned to work – that’s his way of coping – doesn’t mean he doesn’t have those extra costs, such as travel expenses to hospital.”

To qualify for PIP, a claimant must show that they need help with everyday tasks or getting around, or both. They must show they have needed this help for at least three months and expect to need it for at least another nine months.

Zoe insist her son meets these requirements. She said: “When Lewis gets home from work he is absolutely exhausted and there is no way he could prepare himself food for example.

“He tried to go back to living by himself but he couldn’t cope and he had to move back in with me.”

A year of fighting

Claimants who think the decision in their mandatory reconsideration notice is wrong can appeal to the Social Security and Child Support Tribunal. This is independent of government – a judge will listen to both sides of the argument before making a decision.

Zoe and Lewis were set to take their fight to Tribunal but have decided to accept the lower rate of PIP instead.

Many sick people don’t have the energy to fight the DWP and they give up Zoe Saunders

“When the DWP agent called and offered us the lower rate of PIP she made it clear that we could only have that if we dropped the Tribunal case. She said she wasn’t in tomorrow and she’d phone back in an hour and we had to let her know then.

“After all the writing letters and phone calls over a year we figured we have to accept what we can get.

“I’m not sure if I’ll definitely get my Carer’s Allowance and if it can be backdated. If so, we will use the money to adapt the bathroom for Lewis. He really needs a shower because stepping into the bath causes him agony.”

The former administration assistant, who had to give up her job after discovering she had a benign brain tumour in July last year, said she felt the system was unfair.

“Lewis has myself and his father Andy fighting for him. Many sick people don’t have the energy to fight the DWP and they give up.”

A DWP spokesperson said: “We are committed to ensuring people get the right decision on their PIP claim first time round.

“After receiving further evidence we decided to award Mr Saunders the standard rate for both components of PIP.”

Do you have a benefits story? Email claudia.tanner@inews.co.uk