Over three thousand deaths mark grim anniversary of absent DWP benefits review for terminally ill

•  Charities demand a deadline for publication
• Drawn out review is causing unnecessary hardship for terminally ill
• Current benefits system for the dying is “heart-breaking” says actor Jim Carter
• Scotland and Northern Ireland have already moved to scrap the “cruel” six-month rule

Terminally ill people have been waiting one year for a review to be published by the Department for Work and Pensions (DWP) on how they access benefits. Tragically, in this time at least ten people have died each day without financial support [1]. Others have faced a mountain of red tape, stressful assessments and some have had benefits cut off without warning.

The charities Marie Curie and the Motor Neurone Disease Association are now demanding a deadline for publication of this review. They believe the delay to its publication is causing “unnecessary hardship”, which is precisely what the DWP said no one should suffer when it announced the review.

The charities are calling for a change in the law so that all dying people can get fast, easy access to benefits. Currently, terminally ill people can only get fast track access to financial support if they are told they have six months or less to live, yet many have unpredictable illnesses and health care professionals cannot always accurately predict when they will die.

The charities’ call follows a landmark legal case in Northern Ireland this week, where a judge deemed that the different treatment of terminally ill people who do not meet the six-month life expectancy criterion is discriminatory.

The judge described it as “manifestly without reasonable foundation” in a case brought by a woman with motor neurone disease who faced barriers and delays to accessing benefits despite being terminally ill. Scotland’s Government changed the law for devolved benefits last year, creating an unjust two-tier system within the UK.

On July 11 last year the Government announced that the DWP would review how dying people claim benefits. The announcement followed a damning Parliamentary report [2] into how the benefits system fails the terminally ill.

In March this year the charities arranged a series of interviews between terminally ill people who have been failed by the broken system and the DWP. In addition to this, the results of a YouGov survey commissioned by Marie Curie found that 85% of people agreed that everyone who has a terminal illness should have quick and easy access to social security payments, with 80% of people agreeing that someone who has a terminal illness should not be expected to look for work or have their capacity for work assessed.

In August last year the two charities delivered a petition to Downing Street signed by over 55,000 people agreeing that change to the benefits system needs to happen for dying people.

Alan Trewhitt, who has terminal lung disease and lives in Yorkshire, had to battle for four years before he was finally given any support:

“I felt bullied into agreeing with her [the DWP assessor], rather than her accepting what I said. You have to lay yourself bare in terms of all your medical issues and what you can't do. I just find it very, very upsetting. As I've become more ill, I don't know if I want to put myself through that.

“Because I was refused PIP [Personal Independent Payment], I couldn’t even get hold of things like a parking card and go to the shops with my wife.

“My condition is pulmonary fibrosis. It affects everything I do. 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.”

Michelle McCluskey’s mother, Christine, died in 2018. She was refused benefits and declared “fit to work” despite being registered as 80% disabled. Christine had terminal Chronic Obstructive Pulmonary Disorder (COPD):

“I blame mum’s death on the DWP. If it hadn’t been for them, I think I might have had a couple of months more with my Mum. She was totally housebound but denied benefits. She had a car and even though she never went out, I think she liked knowing the car was there.

“My mum started a claim, it went back and forward but was denied. During all this time my mum was suffering and worrying about money. The DWP stopped the money and took away the car. All she wanted was the car.

“It went to a tribunal but never should never have gone that far. My mum’s GP, her consultant of 40 years both wrote letters to the solicitor. They put it forward to the DWP but it came back and said, ‘We’re stopping her benefits.’ 

“Letters like that from consultants and GPs who have been with that patient for 40 odd years should mean more than one Government assessment. 

“Just before she died she said, ‘Don’t give up. Keep fighting this’ and that’s the reason why I want to keep fighting - for her and for me because it gives me sense that she’s still here.”

Matthew Reed, Chief Executive at Marie Curie, said:

“Over the course of this campaign we’ve heard from a woman with MND whose young children have to bathe and dress her – she was denied her benefits and sent for back-to-work coaching. We’ve spoken to a man dying of cancer whose benefits were stopped without notice or explanation before Christmas. 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. The Government has all the evidence it needs to publish the review and commit to changing this law. When the DWP said it would conduct a review it said that no one should have to suffer unnecessary hardship. A year later that is still happening - enough is enough. We need to know when the review will be published and the compassionate changes made.

“Just this week, Northern Ireland has made a major step forward towards joining Scotland in scrapping the cruel six-month rule. The UK Government needs to catch up and ensure equality for dying people throughout the whole of the United Kingdom.”

Sally Light, Chief Executive of the Motor Neurone Disease Association, said:

“Both patients and doctors have been clear that the six month rule simply does not work. It particularly disadvantages people living with unpredictable terminal conditions such as motor neurone disease, for whom it is not possible to predict life expectancy with accuracy. As a result, some of the most vulnerable people in our society are missing out on vital support, being forced to navigate lengthy and unsuitable assessment processes, and even in some cases being required to attend work coaching appointments despite living with a terminal illness which has left them unable to work.

“It is now a year since the Government announced its review of this issue and the lack of progress has been a source of great frustration and disappointment for people living with terminal conditions. The Government must publish its review as soon as possible and deliver a fair and compassionate system to support people living with a terminal illness.”