As the DWP drags its feet over reform of the terminal illness rules for benefits, it has been revealed that more than 100 people a month are dying whilst still fighting for an award of PIP in spite of having less than six months to live.

A report by the Motor Neurone Disease Association and Marie Curie found that in the 18 months between April 2018 and October 2019 1,860 people died within six months of being refused benefits.

The Guardian reports on one claimant who is terminally ill and receiving end-of-life support.

Nonetheless, on being forced to move from DLA to PIP, her benefits were reduced.

She told the Guardian: “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.”

Politics Home has reported on a case in which a consultant neurologist was questioned no fewer than three times by Capita about their assessment that claimant was within the terminally ill definition of their death being reasonably expected within six months.

This not only caused the claimant distress and needlessly delayed their access to much-needed benefits, but it also wasted the valuable time of an NHS consultant when the health service has a record 5 million people on its waiting lists.

In this case the claimant had motor neurone disease, but the Capita assessor wanted further information about "bulbar involvement" and "respiratory difficulties". Even when these were provided, Capita asked further follow-up questions.

Susie Rabin, head of policy at the MND Association, told Politics Home the assessment was “heartless and utterly unnecessary”.

“The real frustration is we are talking about people dying of a really awful disease who are entitled to these benefits because of the condition they have,” she said.

“To have questioned their clinician on whether this person has got six months to live is so insensitive, so heartless and utterly unnecessary.”

The government have been promising changes to the terminal illness rules for many months, but claimants are still dying without benefits and without any improvements to what many see as a barbaric assessment system.

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