More than 3,000 people have died waiting for benefit reforms for the terminally ill, charities warn.
Today marks a year since Tory ministers pledged to review Special Rules for Terminal Illness – which fast-track claims for people with less than six months to live.
But despite a minister promising changes “shortly”, the “heartbreaking” rules are still in place.
Charities and dying claimants today demanded a deadline for change – saying the delay is causing “hardship” and “enough is enough”.
The anniversary comes days after Northern Ireland’s High Court ruled the six-month rule breaches human rights.
In a landmark judgement on Wednesday, the court backed motor neurone disease sufferer Lorraine Cox, 40, who fought for more than a year to get Personal Independence Payment (PIP).
Judge Mr Justice McAlinden said there was “nothing to justify, or indeed explain” why terminally ill people were treated differently just because they couldn’t prove they had six months to live.
Marie Curie chief executive Matthew Reed said: “Doctors have condemned the law and MPs have described it as shameful. We have not found a single person who thinks the six-month rule is fit for purpose.”
Sally Light, Chief Executive of the Motor Neurone Disease Association, added: “Both patients and doctors have been clear that the six month rule simply does not work.
“The lack of progress has been a source of great frustration and disappointment.”
Special rules fast-track a patient’s PIP claim, with unconditional support, if their GP agrees they are likely to die within six months.
But charities say the six-month rule is arbitrary and insensitive.
DWP figures show 17,070 people died waiting for a Personal Independence Payment (PIP) decision in five previous years.
If that pattern repeated, more than 3,000 will have died in similar cases since the review launched last summer.
Joe Reilly, 52, from Wickford, Essex, said it took him 13 weeks instead of two to get PIP after he was diagnosed with motor neurone disease in September 2018.
The grandfather-of-four could barely hold a pen when he was diagnosed and was told he had 14 months to live.
But his attempt to use special rules was batted away, including by his GP, because he had too long to live.
Instead he eventually received full PIP, worth £151 a week, after filling out a form with dozens of pages.
The quantity surveyor said his experience was “demeaning”. He added: “It suddenly dawns on you you maybe have a year or two left to live. To have all that extra pressure put on your to claim a benefit you’re entitled to felt degrading.”
He added: “I can’t walk, I can’t stand, I can’t move my left arm. I can’t feed myself, I can’t wipe my own bottom when I go to the toilet.
“All those things are very, very hard to deal with. If it wasn’t for my wife and carers I wouldn’t be able to survive.”
Dad-of-one Alan Trewhitt, 56, from Rippon, North Yorkshire, said he eventually got PIP four years after being diagnosed with pulmonary fibrosis and told he had five years to live.
He said he gave up trying after being rejected for PIP by an assessment, then again by a tribunal.
Only after being offered third-party help did he launch a second claim and that time he succeeded.
The former accountant said he felt “bullied into agreeing” with assessors and spent years without a disabled bus pass, despite his condition affecting “everything I do.”
He said: “I can’t get dressed by myself, I can’t go to the shop by myself, I get very breathless doing anything. It’s a very debilitating disease. I want to be able to enjoy this last period of my life.”
He added: “I just feel that people who have a terminal illness, whether that’s six months or six years, should have some form of access to benefits.”
Ex-Work and Pensions Secretary Amber Rudd promised in July 2019 to review the rules, highlighting the pain of losing ex-husband AA Gill to cancer.
Last month DWP minister Justin Tomlinson said the review had made “good progress” adding: “I am grateful for the part that the Motor Neurone Disease Association, Hospice UK, Macmillan, Marie Curie, Sue Ryder, the national nurse consultant group and others have played in the evaluation.
“The Secretary of State and I are passionate about making changes: it will not be the status quo.
“Covid-19 caused a delay to the final part of the consultation with the medical professionals, but we will bring forward a change shortly.”