Thousands sign petition calling on the DWP to scrap ‘ludicrous’ benefit rule

Campaigners call on the UK Government to give terminally ill people the dignity and financial security they desperately need.

Tens of thousands of people have added their names to a petition calling on the UK Government to change “ludicrous” benefit rules that prevent terminally ill people from quickly accessing the benefits system.

The petition, signed by over 55,000 (55,435) people, was handed in to No. 10 Downing Street last week by Downton Abbey actor Jim Carter, charity groups and campaigners living with a terminal illness.


Under current rules terminally ill people can only be fast-tracked through the benefit application process if they are assessed as having less than six months to live.

But campaigners argue that many terminally ill patients have unpredictable illnesses, and that this arbitrary six-month rule should be scrapped and “replaced by a rule based on trusting the judgement of doctors and other clinicians who know their patients best”.

David Setters, a campaigner who lives with Motor Neurone Disease (MND), said: “Let’s be clear, we are not asking for money.

“While that would be nice, we are simply asking for fast track access to the benefits people with terminal illnesses need and deserve so that affected families don’t have to waste time fighting the system and instead can spend more precious time together, making memories.

“I am fortunate to have a relatively slowly progressing form of MND and so have time to advocate on behalf of those for whom progression is much quicker.

“Half of people die within two years of diagnosis – with that type of nuclear bomb dropping on your family, especially if you have young children, you really shouldn’t have to waste precious time fighting the system.”

Marie Curie Campaigner Mark Hughes faced many challenges trying to claim benefits after he was given the news that his bone cancer was terminal and he could no longer work.

“I told the DWP I was unable to continue working and a few days later I got the first set of forms to fill in”, he said. 

“I had numerous letters from them over months with the same questions being asked over and over again.

“Sometimes, forms were sent by mistake – I was having to deal with all of this while still dealing with the news that I was terminally ill. 

“This is still going on today, even though they said I wouldn’t be bothered until 2025. Every time I get a letter from the DWP, I’m worried.”

Actor and Marie Curie Ambassador Jim Carter said: “It seems ludicrous that, instead of enjoying life with their loved ones, dying people have to spend time filling in forms and attending interviews with benefits advisors, or must even go to coaching sessions aimed at getting them back to work.”

He continued: “Every day 10 people die while waiting for the benefits they need.

“That can’t be right – and is why I’ve signed the petition along with tens of thousands of other people across the UK who are urging the government to end the cruel benefit system for dying people.”

Dr Nik Sharma, Consultant Neurologist and Motor Neurone Disease Association Trustee, added: “The current system forces us into making impossible predictions to satisfy an arbitrary time limit. 

“For patients with complex conditions such as motor neurone disease, dementia, frailty and organ failure, predicting when someone is going to die is often all-but impossible. 

“As clinicians, it is enormously frustrating knowing that, because we can’t give an exact prognosis our patients could face incredible financial and emotional distress.

“And this is all because of a rule that was made up by politicians nearly 30 years ago.

“The rules need changing and they need changing now.”

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