People with terminal or life-limiting illnesses should not have to face “distressing” benefit reassessments, a group of leading charities has said, urging the government to make crucial changes to the system.
Convened by end-of-life charity Marie Curie, a group of more than 30 organisations has written to disability minister Sir Stephen Timms arguing it should instead be easier for these claimants to secure permanent, “lifetime awards” for the personal independence payment (Pip).
The veteran Labour MP is currently leading a review into the health and disability-linked benefit claimed by nearly 4 million people, which concludes its call for evidence this week. It was announced following a threatened backbench rebellion of Labour MPs last July over ministers’ plans to cut Pip spending by tweaking the eligibility.
Under the current system, there are special rules for Pip applicants nearing the end of life, where a doctor or medical professional has said they might have 12 months or less to live. This entitles them to a higher part of the award for the remainder of their life, unless they live longer than three years, when they could be reassessed.
But this should be expanded to consider all people with terminal or life-limiting conditions, signatories including Amnesty International, Trussell Trust and Age UK wrote in a letter seen by The Independent. They recommend a system which fast-tracks access for these claimants to a lifetime award of the higher rate of Pip, similar to a system already adopted in Scotland.
They point out that between February 2025 and 2026, 38 per cent of people whose main condition is Parkinson’s disease, 16 per cent where this was dementia and 9 per cent where this was motor neurone disease were given fixed-term awards, despite these all being progressive, life-limiting illnesses.
In the same time period, only 2 per cent of awards given to claimants with these conditions were changed following a reassessment, with each costing the Department for Work and Pensions (DWP) £282.
Becca Stacey, Marie Curie’s senior policy manager for financial security, said: “Too many people living with terminal illness and progressive, life-limiting conditions are being forced to prove just how unwell they are, which is simply wrong.
“These reassessments rarely change the outcome, but they cause real distress and uncertainty at a time when people should be focused on comfort, care and time with loved ones.
“The UK government has a clear chance to fix this now. Ending reassessments and introducing lifetime awards for people with terminal and progressive, life-limiting conditions would create a fairer, more compassionate system that treats people with dignity.”
Sharing their experience with Marie Curie, one disabled person with severe emphysema said: “It’s not something I can recover from but Pip stopped my allowance for 10 months, saying I wasn’t as bad as I was saying.
“Why aren’t chronic illnesses exempt from these extremely stressful and nerve-wracking interviews? I am going to die through emphysema, it doesn’t magically get better – only worse.”
A DWP spokesperson said: “Reforming the welfare system so that it better meets the needs of disabled people is a priority for this government.
“We are working closely with disabled people and organisations through the Timms Review to ensure Pip is fair and fit for the future. We launched a call for evidence that is closing today and we are beginning to carefully consider and analyse the responses provided, including those on reassessments.
“We are also taking an important step to improve the system through new legislation which will reduce the frequency of reviews for many existing Pip customers.”