The government has been urged to stop “dragging its heels” over benefits changes for terminally ill people.
Under current rules, only people with six months or less to live are able to have their benefits fast-tracked – a rule charities say is leaving gravely ill people facing “a mountain of red tape, stressful assessments and financial uncertainty”.
According to Marie Curie – an end of life charity – almost 2,000 people have died without financial support since the Department for Work and Pensions (DWP) agreed to carry out the review.
It is now calling on the government to “find its heart” and scrap the six month rule.
Meanwhile, doctors have argued it is incredibly difficult to accurately predict how long someone is likely to live.
In July – following a damning parliamentary report – the government agreed to review the system, which was dubbed “outdated, arbitrary and not based on clinical reality”.
But six months on, campaigners, terminally ill people and their families are still waiting for the findings to be published.
Amongst them is Mark Hughes, 58, from Essex, who was told his bone cancer was terminal in 2011 and has been volunteering tirelessly for Marie Curie for years.“Every time we get a brown envelope through the front door that looks like it could be from the DWP, we get that horrible sinking feeling in our stomachs,” he explained.
“The first thing you start worrying about is whether or not you’re going to have to do another assessment, whether or not another benefit is going to be taken away.”
Mark, who handed in a petition calling for the end of the six-month cut off alongside fellow campaigners with terminal illnesses in summer 2019, described the personal impact of dealing with the DWP at the same time as coming to terms with such a devastating diagnosis.
“It’s endless, absolutely relentless,” he explained. “I have tried to be a strong as I can throughout this process, but seeing my wife sorting through the paperwork and all the time coming to terms with the fact her husband has a terminal illness was horrendous.
“A terminal diagnosis should be enough for the DWP, as far as I am concerned. I worked all my life, worked really hard, and paid all my taxes, but now we have to jump through hoop after hoop just to get the help we need.”
Despite living with a terminal illness himself, Mark is committed to helping people who have found themselves in a similar situation and are left struggling to cope with mountains of paperwork and an uncertain future.
“Thousands of people’s lives are being made a misery,” he said. “And at the end of their life, doesn’t matter how long it is, they should be allowed to die with dignity – not fighting for a small amount of money that could have eased so much stress.
“We’ve been told there were delays because of
Brexit, because of the
election, but those things haven’t delayed people dying. We’re trying to help the people who can’t help themselves – this should be a priority for our government.”
Mark’s sentiments are echoed by 56-year-old Liam Dwyer from Surrey, who was diagnosed with motor neurone disease in 2005.
“If you can call it lucky, I am still living,” he said. “I was given 18 months to five years to live back then and I’m still here.
“No-one, not even myself, knows how long I have. I have met people and they have died in weeks.
“I honestly don’t understand why a person given a terminal diagnosis is not giving automatic exemption. It is absolutely disgraceful that dying people are treated this way.”
Matthew Reed, Marie Curie’s chief executive, said the charity had not seen “any notable progress” when it came to dropping the fast-track cut-off point for people with more than six months to live.
“The government’s own figures suggest that 10 people a day have died while waiting for PIP in the six months since the DWP announced a review,” he said.
“And while we have seen personnel changes at the DWP, it is now a new year, with a new government, which has a clear majority and, therefore, no excuse not to act fast to stop ten more people dying everyday without the support they need. It’s time now to get this done.”
But a spokesperson for the DWP said the review was “well under way”, calling it an “absolute priority for us”.
“We recognise how devastating dealing with a terminal illness can be, and the impact it can have on families,” they said.
“This vital work is well under way and we are working closely with medical professionals and charities like Motor Neurone Disease Association and Marie Curie.
“We are making positive changes and actively gathering all the relevant medical evidence needed to shape the proposals.”Related... Thousands Of Dying People Are Denied Benefits Under Arcane 'Six Months To Live’ Rule DWP Ordered To Review 'Outdated' Rules That Deny Terminally Ill Benefits