Cystic Fibrosis Trust join charities in calling for PIP reform
Alongside organisations including Marie Curie, Parkinson's UK and the Huntington's Disease Association, we have co-signed a joint letter to the Government urging reform of stressful and unnecessary reassessments for people whose conditions are lifelong and likely to worsen over time.
We know that for many people with cystic fibrosis (CF), PIP is a vital source of support, helping people manage the extra costs that come with living a long-term condition. PIP is used for a variety of essentials - our recent PIP report revealed that without PIP, half of people with CF would have to cut back on food, a quarter would have to cut back on heating, and 1 in 10 would have to cut back on hospital appointments.
We also heard clearly that the process of accessing and maintaining support can itself be deeply stressful. 90% of people with CF said the process affected their mental health.
Too many people described a system that feels difficult to navigate, repetitive and poorly designed for fluctuating, lifelong conditions such as cystic fibrosis. Many told us about the anxiety of reassessments, concerns about losing essential support, and the strain of repeatedly having to prove the reality of life with CF.
PIP awards should be longer-term and reviews should be lighter touch, focused on whether someone's support needs have changed or increased, rather than repeatedly reassessing entitlement where there is no realistic possibility of improvement.
Cystic Fibrosis Trust is also submitting to the Government’s formal request for evidence for the Timms review. This will set out wider changes needed to make PIP work better for people with cystic fibrosis, including improving understanding of fluctuating conditions, listening more to specialist medical evidence, and making sure assessments better reflect the real-world impact of treatment burden and infection risk.
The Timms Review presents an important opportunity to improve a system that too often leaves people feeling unheard and unsupported.
The current PIP process is failing people with CF. This needs changing. The Government must ensure the PIP process is fair, fit for the future and properly supports those living with chronic, lifelong conditions like cystic fibrosis.
David Ramsden Chief Executive at Cystic Fibrosis Trust