‘I was refused PIP even though a machine was keeping me alive – it’s inhumane’

A kidney patient has said he was rejected for Personal Independence Payment (PIP) benefit as he “wasn’t sick enough” while being kept alive by a dialysis machine.

James Suett, 28, from Stockport, Manchester, was fit and healthy and playing a lot of football when he was suddenly diagnosed with kidney failure at the age of 24.

His condition deteriorated and at one stage his kidney function plummeted to just four per cent, meaning he required dialysis to keep him alive.

Mr Suett said his condition left him so exhausted, he couldn’t even walk down to the end of the road without getting out of breath and even had to be helped into the shower.

However, when he applied for PIP, the benefit for people who have a long term illness or disability, he was turned down and told he was “not sick enough” to qualify.

Mr Suett told i he appealed twice against the decision but was still knocked back and is now going to challenge it at a tribunal hearing.

He believes the current PIP system is already “harsh and inhumane” and says government plans to overhaul the benefit and introduce a six-tier system will make life even more difficult for people who are already struggling.

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“With PIP, it already feels like they are waiting for people to lose all hope,” he said. “They reject you straight away and it is almost like they are banking on you not to appeal and to just give up.

“To make the system even harder will be detrimental to a lot of people and is inhumane from a Government point of view.”

Mr Suett explained that his diagnosis came about after he began suffering from cramps and headaches and went to the doctors. After realising his blood pressure was extremely high, he was given medication to try to bring it down. However, a subsequent doctor’s visit found it was even higher.

He was admitted to hospital where tests revealed his kidneys weren’t working properly and were only functioning at about 11 per cent. He was given medication and at a further appointment, he was told he needed dialysis to survive and a kidney transplant.

When the kidneys don’t work properly, they can’t clean people’s blood, so toxins build up in their bloodstream. The kidneys also make less urine, so excess fluid and waste products remain in the body.

Mr Suett began on peritoneal dialysis, where the blood is cleaned inside the body. This involved him being hooked up to a machine and pumped with fluids for eight hours every night.

However, after seven months, this form of dialysis stopped being effective so he was admitted to hospital for two weeks and then changed to haemodialysis. This involves diverting blood into an external machine, where it is filtered before being returned to the body. Mr Suett had to have this treatment, lasting around four hours a time, every other day at a hospital satellite unit.

“My quality of life was nil,” he recalled. “I am a big football fan, but could no longer go to the football. I couldn’t even walk down the road without getting out of breath.

James Suett in November 2021 while being diagnosed with stage 5 kidney disease

“I would get up in the morning, sometimes have to be helped into the shower and then I would walk downstairs and have to have someone make breakfast for me and then just sit there as I had no energy for anything else. I was just wiped out all the time.”

After going on peritoneal dialysis, Mr Suett, who works as a surveyor for a property company, managed to return to work three days a week doing light tasks, with someone helping him to work and back.

However, he caught Covid and ended up in hospital and his kidney function became worse and dropped to just four per cent. He was off work from June 2022 until March 2023 when he had a kidney transplant which meant he was able to return to work in a phased return in September 2023 and then full-time in November 2023.

Mr Suett initially submitted his PIP claim in January 2022 but was turned down. He says he appealed twice, but was rejected. He is now taking his case to tribunal and is awaiting a date. He says he did have a tribunal date, but asked for it to be adjourned as he did not have the necessary paperwork from the DWP about his claim.

“I was pretty much told by the DWP: ‘we do not believe you are sick enough for the PIP benefit’ when I applied” he said. “I don’t understand how this can be the case when my day-to-day existence was relying on a machine to keep me alive. I was so exhausted, on some days, I couldn’t get out of bed.

“I submitted my PIP claim two years ago and have still not been given it. I am now hoping to get a positive decision when I have the tribunal and get it backdated from January 2022 until September 2023, which is when I returned to work on a phased return.”

James in August 2022 on peritoneal dialysis with over 20kg of extra fluid in his body

Mr Suett was put on the waiting list for a kidney donor and members of his family were going through the process of being tested to donate to him. However, in March last year, he underwent a transplant with an organ from a deceased donor and said the difference to his quality of life was instantaneous.

“I am lucky as I am now back at work and am a lot better than I was since having my transplant,” he said. “But I was turned down for PIP when I needed it. If I hadn’t been living with my parents, I don’t know what I would have done.

“There are so many people including those suffering with kidney disease who are struggling to get PIP and to make it even harder would be so cruel.”

James in October 2021 before he was diagnosed with kidney disease

Fiona Loud, policy director at Kidney Care UK, said: “Personal Independence Payment (PIP) is a lifeline for people with chronic kidney disease (CKD) in the UK.

“It is an incredibly complicated and stressful system to navigate and the current assessment process frequently fails and upsets people with CKD, as we can see by the huge proportion of initial decisions that are overturned on appeal.

“People with kidney disease tell us that the process, frequent refusals and appeals are extremely stressful and that assessors appear to lack the knowledge, experience, and skills to understand how kidney disease can affect patients’ functional abilities, including the dialysis, multiple hospital visits, and the effect of the medications needed to simply stay alive.

“Our patient support and advocacy service and PIP Helper Tool are in place to support people through the process but we need a much better system.

“Reform is sorely needed yet this must be focused on making sure people get the support they need to thrive not on cruel cost cutting measures which will make life with kidney failure even more difficult.”

A DWP spokesperson said: “We support millions of people every year and our priority is they receive a supportive service and get the benefits they are entitled to as soon as possible.

“Our disability assessors are qualified health professionals and decisions are made using all the information available at the time. If someone disagrees with a decision, they can ask for this to be reconsidered and appeal to an independent tribunal, as Mr Suett has done in this case.”

The DWP added that a tribunal hearing was due to take place in March 2024 for Mr Suett, but he asked for it to be adjourned as he was out of the country on holiday. It was then due to be heard in April 2024, but Mr Suett had asked for it to be adjourned again.