MP Sir Stephen Timms and co-chairs of the Timms review have said they will be “radical in our thinking and bold in our recommendations for reform” of personal independence payments (PIP) in their interim report, published yesterday.
The interim report has set out the progress in the Timms Review of PIP which was launched in October 2025 after the government was forced to make a U-turn in its plans to cut welfare spending due to pressure from backbenchers and patient organisations.
The review will focus on the purpose of PIP, the fairness in its award, the experience of applying for PIP and the background around this benefit.
The interim report highlights that PIP is described as “essential to financial stability and independent living” but understanding of its purpose and what independent living means is inconsistent.
The report said: “There are concerns about whether the functional assessment and descriptors fully reflect real-life impacts, particularly for fluctuating, multiple and less-visible conditions, as well as about the consistency and transparency of decision-making and the role of supporting evidence.”
The report added that people report finding the process of claiming PIP stressful and inconsistent, and that they don’t trust the process.
The review chairs conclude: “Our message is simple: PIP is not working.”
Eroding independence without PIP
This mirrors the experiences shared by people with epilepsy, an invisible condition with often fluctuating symptoms.
Murry Goulder, 46, from Crawley, said: “I had a new piece of further medical evidence from my neurologist clarifying my requirements and risks, and a video of a seizure captured on my doorbell that showed the type of injury I could experience. [The assessor] didn’t pay attention to either.
“What is labelled as a ‘benefit’ is, in truth, a necessity. I bear the costs of things like travel, including to and from work, non-prescription medication for daily headaches from my epilepsy and more expensive life and travel insurance because of my epilepsy.
“A lack of support erodes my independence.”
Daniel Jennings, Epilepsy Action public affairs co-ordinator, said: “All too often we hear from people with epilepsy that assessors make assumptions that just because they’re well-dressed or don’t appear to be anxious that they don’t need PIP.
“Ninety per cent of responses to the Timms Review highlighted negative experiences of the PIP process. This clearly demonstrates that change is urgently needed.”
Timms review interim report findings
Speaking about the interim report, co-chair Sir Stephen Timms, said that “for many people, PIP has become a barrier to participation, which is the opposite of what’s intended”.
In an interview on BBC Radio Four’s Today programme, Sir Stephen raised concerns with the current system, saying “people on PIP are scared to participate, either in physical activities or employment, as this could be seen as evidence that their functional ability has improved.”
He added that the PIP system “hasn’t kept up with our changing understanding of disability and ill health over the 13 years since it was first introduced, so we do think fundamental change is needed and we’ll be making our recommendations for change in the autumn”.
The review steering group said the context has changed around PIP – a non-means-tested benefit designed to help people with disabilities and long-term health conditions with the extra cost of living independently – since it was first introduced in 2013.
The interim report said the number of people reporting they have a disability or long-term condition has risen, as well as the number of people applying for PIP.
The review update said the Department for Work and Pensions (DWP) forecasts that PIP expenditure will rise from £15 billion at the end of 2020 to £41 billion by the end of 2031.
See the whole person
Daniel Jennings is urging the steering group to ensure disabled people are at the heart of any changes to the system.
He said: “It’s vital that the voices and experiences of disabled people are heard in this review and used to shape a system that works for them – not against them.
“The reality is that people with epilepsy are dealing with not just seizures but the daily challenges of living with a hidden condition.
“The suggestion in the interim report that co-production will be central to forming the review’s final recommendations is very welcome. But we would be grateful for further information about how we can ensure people with epilepsy are included in this discussion to ensure the PIP system sees the whole person, helping them to live safely and give them the opportunity to thrive.”
Share your views! What do you think of the interim report and potential changes to PIP? Tell us at campaigns@epilepsy.org.uk.