Benefits claimants suffering under end-of-life DWP rule

Terminally ill, disabled and mentally ill people spending final weeks struggling to get social security help

More than 100 people a month are dying within six months of being rejected for disability benefits, and many are spending their final weeks fighting in vain for social security support, say campaigners.

The Marie Curie and the Motor Neurone Disease Association charities have called for an urgent review of Department for Work and Pensions rules after official data revealed that in an 18-month period 1,860 people in the UK died within six months of their claim for disability benefits being turned down. In the same period, 280 people died within six months of having had their disability benefit applications rejected, despite them claiming under rules specifically designed to get fast-track support to terminally ill people.

The charities said the government had to scrap the restrictive “six-month rule” under which people must prove they have six months or less to live to access fast-track benefits support.

The charities said data, collected between April 2018 and October 2019, raised “serious concerns” about the DWP’s ability to recognise when a claimant was approaching the end of life. They said they wanted to see rapid access to benefits kicking in as soon as terminal illness medical diagnoses were made.

In July 2019 Amber Rudd, as the UK work and pensions secretary, announced a “fresh and honest” DWP evaluation of the way the benefits system supported terminally ill patients. The charities say that although the review she commissioned had been completed the findings were “being withheld”.

Mark Jackson, policy and public affairs manager at Marie Curie, said: “The current law plunges dying people into uncertainty – they know they are dying but because they do not know how long they have left they can’t access financial support quickly.”

Helena Reynolds, 60, from Essex was visited by a DWP assessor in her home when she was moved from one benefit, disability living allowance (DLA), to its replacement, personal independence payment. Despite being terminally ill, and with a doctor’s letter to prove it, she had her benefits cut.

She said: “The assessor didn’t recognise that I was terminally ill. He didn’t want to see the doctor’s letters, the consultant’s letter or the letter from the hospice. He didn’t want to know. I have Crohn’s disease, osteoporosis, brittle bone disease and intestinal failure.

“I have been receiving end-of-life support from a hospice but had to cancel my other care after the review as I couldn’t afford to pay for it. I was forced to appeal and only then did I receive a higher rate.

“Terminally ill people shouldn’t be judged by these assessors who aren’t medically trained. My doctors should be listened to and trusted – they’re not though, and people like me suffer as a result.”

A government spokesperson said: “Terminal illness is devastating, and our priority is dealing with people’s claims quickly and compassionately, which we’ve continued to do throughout the pandemic.

“We are grateful to charities and stakeholders who have worked with us, including Marie Curie, for their invaluable insight and are working across government on proposals including changing the six-month rule and raising awareness of the support available.”

• This article was amended on 10 June 2021. An earlier version said more than 100 terminally ill people a month were being rejected for benefits despite having less than six months to live. It is not known if these claimants were terminally ill, only that they died within six months of being rejected for disability benefits. This has been clarified. However, it is known that a further 15 people a month were dying within six months of being rejected for disability benefits claimed under fast-track rules specifically for terminally ill people. This information has been added.


Patrick Butler Social policy editor

The GuardianTramp

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