A man living with kidney failure said the system for personal independence payments (Pip) was not fit for purpose after he was rejected for the benefit twice.

Tony Henderson, 55, from Bacton, Norfolk, has dialysis for about four hours a day, six days a week, and has had three heart attacks in 12 months due to strain being put on his heart from blood being pumped around his body.

Despite the government reversing plans to tighten eligibility criteria for Pip in July, Mr Henderson said that the “tick-box system” was still not “targeting the right people”.

The Department of Work and Pensions said an ongoing review would ensure Pip was “fit and fair for the future”.

Pip is paid to people in England and Wales who have difficulty completing everyday tasks or getting around as a result of a long-term physical or mental health condition.

Mr Henderson’s kidneys first failed in 1998 after a routine medical discovered protein in his urine.

He received a donor kidney from his wife, Sarah, which his body rejected. A second donor kidney failed in 2020, and he has been on dialysis since.

Some people with kidney failure cannot urinate, so a machine cleans the body of toxins and excess fluid.

Mr Henderson, who has worked as a chef for 40 years, is on 20 medications and currently works three days a week.

After being turned down for Pip, he has been concerned he may have to work more days.

“It’s the fatigue it’s the not knowing day-to-day what you’re going to be like,” he said.

“When you come off [dialysis], you don’t really want to do anything for a while. You just want to reset.

“Pip would be the only thing that I could get that would help me not have to worry about having to take on more hours,” he added.

He said not being eligible for the benefit was “disappointing and very frustrating”, especially as he had received it while previously living in Hertfordshire.

“I’m actually three times as bad, health-wise and apparently [the government hasn’t] changed the criteria,” he said.

“I’d work 50-55 hours, now I can barely struggle to do 25,” he said.

“I don’t want to give up work because it’s part of who I am, and I enjoy my job,” he added.

He said he now cannot stand for 10 hours, but his employer had been “brilliant” and given him a chair and allowed him regular breaks.

Mr Henderson said he would work full-time if he had a kidney transplant, but that looked to be a long way off as he had to be “operation free” for a year.

Mr Henderson said shortly after being turned down for Pip, he had his first heart attack and had two further heart attacks when he was attached to a dialysis machine.

He then appealed the decision in March and was again refused the benefit after a telephone assessment.

Mr Henderson said he had been waiting five months for a tribunal date to challenge the decision.

“No-one seemed to know during my last appraisal what dialysis actually was or how it makes you feel,” he said.

His wife, Sarah Henderson said she felt there was not enough awareness of kidney failure.

“A lot of people think it’s down to drinking too much or an unhealthy lifestyle and it’s not,” she said.

She called the decision to deny her husband Pip a “smack in the face”.

“We’ve both worked since we left school. We’ve both contributed, paid all the national insurance and tax.

“When we really need it, we’re now not getting any help at all. We’re told he’s not unwell enough and he’s too independent.

“It makes me angry because I know the more he does, the worse he feels,” she said.

“I think if [Tony] said… he couldn’t go to work, if he said he couldn’t drive any more, he’d probably stand a good chance of getting it. We’re just too honest.

“He’s getting penalised for going to work, even though it makes his mental health better.. the whole Pip system needs to change,” she said.

A review of Pip assessments is being led by disabilities minister Sir Stephen Timms and is expected to conclude in 2026.

Fiona Loud, the policy director for the charity Kidney Care UK, said she heard from people who had been turned down for the benefit and hoped they would be involved in the review.

“Once your kidneys are failing, you feel frequently sick, you will be absolutely exhausted most of the time and your bones ache, you may be swollen and breathless and on a restricted diet.

“If you are on dialysis you use more electricity and water which also affects your income.”

She said the current Pip system did not support people with “the compassion and dignity” that they needed.

A Department for Work and Pensions spokesperson said: “We cannot comment on ongoing legal action [Mr Henderson’s tribunal appeal].

“We are changing the social security system so it helps people to live with dignity, genuinely supporting those who can work into employment and ensuring the safety net will always be there for the most vulnerable – and puts the spiralling welfare bill on a more sustainable footing.”