Actor Jim Carter in Downing Street to end cruel benefits system for dying people

A petition demanding changes to the cruel benefits system for dying people has been handed in to No. 10 Downing Street, by Downton Abbey actor Jim Carter, charity groups and campaigners living with a terminal illness.

The petition, signed by over 55,000 (55,435) people, urges the government to change the law to enable more terminally ill people to get quicker and easier access to the benefits they’re entitled to.

Currently, people can only get quick and easy access to benefits if a doctor or nurse says they have less than six months to live. Yet many have unpredictable illnesses and so are facing a mountain of red tape instead.

Marie Curie and the Motor Neurone Disease (MND) Association are calling for the current six-month rule to be abolished and replaced, instead, by a rule based on trusting the judgement of doctors and other clinicians who know their patients best.

The charities say that changing the current rule would also have the added benefit of mirroring the changes happening in Scotland, so avoiding the creation of a two-tier system for terminally ill claimants in the UK.

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.  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.”

David Setters, an MND Association campaigner who lives with the disease 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.”

Petitioner and Marie Curie Campaigner Mark Hughes faced many challenges trying to claim benefits through the Department of Work and Pensions (DWP) after he was given the news that his bone cancer was terminal and he could no longer work.

He said: "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.  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.”

Dr Nik Sharma, Consultant Neurologist and Motor Neurone Disease Association Trustee, was also in Downing Street.  He said: “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.”

Since the creation of this petition, the Secretary of State for Work and Pensions has announced a review into benefits for the terminally ill.  While Marie Curie and the Motor Neurone Disease Association welcome this news, they are pressing for the process to move quickly, as every day 10 people die while waiting for the benefits they need.  They argue that with the involvement of people with experience, this review process should not take long.

The charities petition target was 17,070 signatures - one for every person who has died awaiting a decision on a benefits’ claim in the past five years.