Leading charities are urging the UK government to reform the Personal Independence Payment (PIP) system, advocating for terminally ill individuals to be exempt from the distressing process of benefit reassessments. More than 30 organisations, including Marie Curie, Amnesty International, and the Trussell Trust, have come together to demand a more compassionate approach that would allow for permanent awards for those with life-limiting conditions.
A Broken System
Currently, individuals nearing the end of life can qualify for a higher rate of PIP if a medical professional certifies that they have 12 months or less to live. However, this entitlement is subject to reassessment if the individual lives beyond three years, creating unnecessary stress for those already facing the challenges of terminal illness.
The coalition of charities argues that the criteria should be broadened to include all individuals with terminal or progressive illnesses. Their letter to disability minister Sir Stephen Timms highlights the inadequacies of the existing system, which not only imposes undue hardship but also fails to reflect the realities of progressive diseases like Parkinson’s, dementia, and motor neurone disease.
Evidence of Distress
Between February 2025 and February 2026, nearly 38 per cent of individuals with Parkinson’s disease, 16 per cent with dementia, and 9 per cent with motor neurone disease received fixed-term awards. Alarmingly, only 2 per cent of these awards were altered following reassessment. Each reassessment incurs a cost of approximately £282 to the Department for Work and Pensions (DWP), yet they rarely result in a change of outcome.
Becca Stacey, Marie Curie’s senior policy manager for financial security, stated, “Too many people living with terminal illnesses 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 at a time when people should be focused on comfort, care, and spending time with loved ones.”
Government Response
A spokesperson for the DWP emphasised that reforming the welfare system to better serve disabled individuals is a top priority for the government. They reiterated their commitment to working closely with disabled communities and organisations through the ongoing Timms Review to ensure that PIP is fair and fit for purpose.
As part of this reform effort, the DWP has indicated plans to introduce legislation aimed at reducing the frequency of reviews for many current PIP recipients.
The Human Cost
The impact of the current system is deeply personal for many. One individual with severe emphysema recounted their experience: “PIP stopped my allowance for 10 months, saying I wasn’t as bad as I was saying. It’s not something I can recover from; I’m going to die through emphysema. Why aren’t chronic illnesses exempt from these extremely stressful interviews?”
This sentiment echoes the calls from charities for an overhaul of the reassessment process, which they argue is inhumane and unjust.
Why it Matters
The current PIP system not only adds to the burden of those facing terminal illnesses but also reflects a broader societal issue regarding how we treat our most vulnerable citizens. By advocating for lifetime awards and eliminating unnecessary reassessments, these charities are not merely seeking policy change; they are fighting for dignity and compassion in the final stages of life. Such reforms could transform the experience for countless individuals, allowing them to focus on what truly matters: spending precious moments with their loved ones free from bureaucratic anxiety.