Carol Doonan and her family
Carol Doonan's family
Carol Doonan and her family
19/06/2019 23:33 BST | Updated 20/06/2019 12:34 BST

This Is What It’s Like Fighting For Disability Benefits When You’re Terminally Ill... 'Truly Barbaric'

"The DWP wanted to speak to mum when she was unconscious, they asked me to wake her up."

Terminally ill people are having to fight for disability benefits, with some being denied special fast-track benefits altogether under a system said to be “truly barbaric”.

As the government comes under mounting pressure to scrap a controversial rule that says people with a terminal illness must prove they have six months or less to live in order to access fast-track benefits, HuffPostUK has spoken to two families who have had to endure months or years of financial uncertainty at the same time as dealing with a terminal diagnosis.

Son Forced To Use Student Loan To Pay For Dead Mum’s Funeral

For one family in Belfast the grief of losing their mother was compounded by serious financial troubles following her death as a result of delays in benefits payments.

Mother-of-three Carol Doonan, described as “the most selfless woman” by her family, was just 55 when she died from cancer in April 2018 - only a month after being diagnosed.  

In the final weeks of her life, when she was seriously ill, she was unable to access benefits. Despite Macmillan Cancer Support helping the family to fast-track Carol’s application for the disability benefit Personal Independence Payment (PIP), it did not come quickly enough. 

“They wanted to come and interview her and speak to her on the phone, but mum could barely lift her arm,” said her son Kevin Doonan. “I didn’t want her to deal with anything. I remember they rang to speak to my mum but I told them she was basically unconscious. They asked me to wake her up. It was a terrible, terrible experience. They asked her questions like why she didn’t know she had cancer.”

Her son, a student at Ulster University, was forced to use his student loan to cover the cost of his mother’s funeral after she was diagnosed with Stage 4 stomach cancer, because her PIP disability benefits were delayed.

Carol with granddaughter Casey

Two weeks after Carol was diagnosed with terminal cancer, when her condition was worsening, Kevin was receiving calls from the PIP team who were demanding face-to-face interviews with Carol, which Kevin objected to.

“I had to wake my mum up in her hospital bed just after she had more biopsies taken from her stomach,” he said. “It was truly barbaric and I believe the system failed her. These are people, and their integrities are being questioned.”

“Having to make pleas to strangers regarding your loved one’s state of health and whether it fits into the guidelines to receive money or not is not a moment I wanted to remember,” he continued. “It truly makes me feel sad that even right now someone is having to deal with this.

“Afterwards, I knew it was not the people I spoke to on the phone that were at fault, they were simply doing their job. It’s the fault of the policy-makers. They should be called upon to undo this inhumane procedure.”

Kevin says his mum's treatment by the DWP was 'truly barbaric and the system failed her'

Kevin, 31, spent the final month of his mother’s life trying to sort out her benefits, something he believes should never have happened. Kevin was told that his mum needed to be sick for more than twelve weeks to claim PIP. But Carol, a former care assistant, died only a month after being told of her terminal diagnosis.

Carol’s family did not receive the PIP payments she was entitled to until a few weeks after she had died. The final payment, money which could have been used to pay for the funeral, was paid 10 months after Carol’s death.

“My mum was diagnosed on March 6 and died on April 5,” said Kevin. “During that month I think they did fast track her application, but it wasn’t fast enough because we had no money. She never got her first payment.” 

“This is somebody who paid her taxes, paid her dues, and should be fully entitled to receive something. It wasn’t much.”

Husband With Terminal Cancer Had Benefits Stopped Twice 

Mark Hughes
Mark Hughes and his wife Jane have been forced to fight the DWP on multiple ocassions 

Former long-distance truck driver Mark Hughes has been living with cancer for 19 years. The 57-year-old had part of his lung removed in 2000 and then in 2010 he was told that he had bone cancer and that he had six months to live.

Not able to work, Mark was told he would not have to reapply for benefits until 2025, but despite this his payments have been stopped by the Department of Work and Pensions twice. As a result, he has been forced to make repeat applications to try and access money, taking a heavy toll and him and his family.

“My wife Jane was just coming to terms with the fact that her husband was going to pass away in six months and there she was filling in all these forms,” he said. 

“We were sat there for a day filling in forms and then a couple of days later you would get a form saying that you’re not eligible for these benefits.”

It is not the only time Mark, who is from Southend in Essex, has been be denied payments he was entitled to.

Three years ago, he was given zero points after a home assessment for the disability benefit PIP and told he did not qualify. But he says the assessment questions weren’t aimed at his cancer or the terminal diagnosis, instead focusing on whether he could wash or dress himself.

“In my case if you were to look at me you wouldn’t think anything was wrong with me,” he said. “I look healthy, I’ve got colour, but you can’t always see the disease inside.”

Mark has met prime minister Theresa May through his charity campaigning

Mark appealed the decision, which was granted by the Department of Work and Pensions (DWP). Within five days, Mark went from having an insufficient amount of points to having enough to qualify for benefits. At this point the DWP sent him a letter to say it would not reassess him again until 2025.

However, in November last year, Mark received another letter from the DWP. They were asking him to complete another form to see if he was capable for work, but this time for Employment Support Allowance, another type of benefit. Mark was told that if the form was not filled in within two months, his benefits would be stopped. 

“It was soul destroying – it was like they were trying to grind you down so you gave up trying to claim the benefits,” he told HuffPost UK. “We were sent reams and reams of pages. It was like War & Peace.”

“If people didn’t keep on fighting like myself, they would have given up and then gone into a spiral of depression,” Mark said.

After sending the form back, Mark’s wife Jane realised that his benefits had already been stopped out of the blue prior to the letter being sent in November 2018.

“This was just before Christmas and my mother in law had just moved to a care home because she had dementia so we had all of that as well,” said Mark. “They were putting me and my wife through all this worry and stress. My wife Jane was a nervous wreck, close to tears.”

Mark says the DWP never gave him a reason why his benefits were stopped but they were eventually reinstated.

If I can help others not to go through this living nightmare of the benefits system, I willMark Hughes, who has terminal cancer

Mark is currently campaigning with the terminal illness charity Marie Curie and the Motor Neurone Disease Association to scrap the six month rule whereby terminally ill people have to prove they have six months left to live in order to receive benefits more quickly.

Doctors say it is difficult to be certain about how long people may survive and charities are concerned that thousands of terminally ill people are potentially missing out on fast-track benefits.

“Anybody with a terminal illness should be automatically fast-tracked and there should be just one department that deals with the terminally ill,” said Mark.

“It’s too late for me, but if I can help other people not to go through this living nightmare of the benefits system, then I will.

“The government needs to sit down with people who are terminally ill and ask them questions on what would be an easy way to help them. I’m not huddled up with a blanket around me, I look healthy, and that is automatically going against me.”

Legendary explorer Sir Ranulph Fiennes (right) sent Mark a mountain-top message of support 

Mark has met prime minister Theresa May through his campaigning work for Marie Curie and was even nominated for an unsung hero award by the legendary mountaineer Sir Ranulph Fiennes.

The world-famous explorer sent Mark an emotional mountain-top message in support of his charity work, after dedicating his charity climb of Mount Elbrus in Russia in 2016 to Mark to raise money for Marie Curie.

The DWP do not comment on individual cases of benefit claimants.

But the department told HuffPost UK, in relation to our wider reporting on obstacles faced by terminally ill people claiming benefits: “Terminal illness is devastating, and our priority is dealing with people’s claims quickly and compassionately. That’s why we guarantee entitlement to benefits and waive the need for face-to-face assessments.

“We’re looking again at how we support people with terminal illnesses, and in the meantime we continue to work with charities – including Marie Curie and the Motor Neurone Disease Association – to help terminally ill people access the support they need.”

FACTBOX: Benefit Blocks And Delays – The Figures

Figures obtained by the MP Madeleine Moon through a Parliamentary Question show:

  • 7,990 people died within six months of a claim for the disability benefit Personal Independence Payment (PIP) being registered

  • 570 people had their PIP claim refused before it had been seen by an assessment provider, meaning the decision was made by an administrator

  • 1,460 PIP claims were disallowed because people failed an assessment

  • 780 PIP claims were disallowed because people did not attend an assessment