PIP is failing dying people too

The acknowledgement that a system, which has been letting disabled people down for years, is not working is a landmark moment. But as this story makes the headlines, I can’t help feeling that dying people are being overlooked.

Terminally ill people face unique challenges when it comes to accessing PIP, often coinciding with a sudden loss of income and increased living costs.

The Special Rules for End of Life enable dying people to access PIP more quickly and at a higher rate. But there are key issues in this system which are failing terminally ill people.

For terminally ill people who don't qualify for Special Rules – for example, because they have a prognosis of more than 12 months, they are being put through a long and burdensome application process to receive the vital financial support they need. This takes time and energy that terminally ill people don’t have.

Once people have proved themselves eligible for PIP, whether via the Special Rules route or not, too many terminally ill people then have to prove how ill they are later down the line to continue receiving PIP, going through a stressful reassessment process.

At a time when they should be focusing on their care, spending precious moments with loved ones, and making the most of the time they have left, many are forced to battle a system not designed with their needs in mind.

As the UK’s leading end-of-life charity, Marie Curie, we hear time and again stories of the stress reassessments can cause. Far from a minor administrative inconvenience, they create needless uncertainty and financial anxiety for people already suffering from serious illness.

One of our campaign supporters suffers from Emphysema. It’s a chronic illness which only gets worse over time. They will die from it. Does it seem fair that their PIP allowance stopped for 10 months while their condition was reassessed?

Another was told that they had effectively ‘lived too long’ with a terminal illness and would need to renew PIP to keep a Motability car essential for daily life.

These failings must be recognised, and changes must be made to make PIP work for dying people.

Our recommendations are clear and compassionate. People who qualify under the special rules for end-of-life should receive indefinite awards.

People with progressive, life-limiting conditions who don’t qualify under these rules but are on the highest rates of PIP should also not be placed on fixed-length awards.

And for people with progressive and life-limiting conditions on lower rates of PIP, compulsory reassessments should be replaced by light-touch reviews to check whether they now need more support.

We have recognised PIP is failing. As changes are made to make the system work, dying people can’t be forgotten.

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Becca Stacey is Senior Policy Manager at Marie Curie.

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