Responses from disabled people detail “soul-destroying” DWP PIP assessments

The 9 July interim report from the Timms Review of the Department for Work and Pension’s (DWP) Personal Independence Payment (PIP) system found that the benefit was both vitally necessary and deeply unfit for purpose.

After putting out a call for responses back in March, the reviewers received over 38,000 responses. This was in spite of the fact that the response period was limited to 10 weeks, rather than the customary 12.

Within these, the vast majority — around 90%  — of the responses were negative. Roughly half mentioned PIP’s financial inadequacy, and over a quarter referenced decisions or appeals that “changed later in the process. Notably:

Multiple and interacting health conditions are referenced in around 83% of responses – less-visible, cognitive, neurodivergence, and mental health conditions appear in around 70% of responses

The participants included the D/deaf and disabled people who receive PIP, along with disability advocacy groups, clinicians and leading academics. This article will take a closer look at those responses, including key quotes from the participants themselves.

The purpose of PIP

The interim report noted that the extra costs associated with recipients’ disabilities can vary wildly. However, the PIP system often fails to recognise that fact or “offer appropriate support”. One respondent stated that:

Even at the enhanced rate, PIP does not provide a good quality of life. It is a minimal contribution towards the additional costs of disability.

Meanwhile, PIP’s public reputation has declined, and support for cuts has risen. As the Canary has previously reported, this was fueled in large part by negative media coverage. This has, understandably, caused a great deal of anxiety for disabled people who rely on PIP.

Beyond this, respondents frequently highlighted the ways in which PIP works against its stated aim to enable independence. In particular, the assessment process can punish people for working or showing improvement, even when the underlying support requirements remain the same.

One participant stated that:

You are punished for coping. If you manage to do anything, it is used as evidence that you don’t need support.

Another added:

People with impairments and disabilities cannot feel like they can’t exercise for fear they will lose their PIP – it’s creating a trap of compounding [sic] reduction in physical health.

Eligibility, fairness and equity

Given these issues, it’s unsurprising that many of the responses highlighted that the PIP assessment doesn’t reflect people’s actual needs. Likewise, participants frequently felt that PIP may not work equitably for everyone, particularly for individuals with “multiple and fluctuating conditions”:

This is particularly acute for neurodivergent and Deaf claimants, for whom communication barriers, sensory overload and inaccessible formats (such as lack of online forms and reliance on telephones) add further layers of distress and exclusion.

In particular, the assessment process often focuses on whether a claimant can perform a task at all. This ignores whether they can carry it out safely and repeatedly. One response held that:

I was told several times during my in-person assessment that it didn’t matter if I would be in pain during an activity, they just needed a yes or no on if I could technically do it.

Likewise, the claimants often felt that they were judged on short interactions with the assessors. As such, the assessments seemed to rely on outward appearances, creating a bias against invisible conditions. A participant stated that:

They focus heavily on physical, observable difficulties, whereas many mental health conditions are internal, fluctuating, and not always visible.

As such, whether or not somebody receives the appropriate level of payment can depend heavily on their ability to navigate the system. This involves a claimant’s ability to explain their conditions in a way that matches the DWP’s tick-box criteria, and persisting through the often-lengthy review process.

As one participant mentioned, getting the right assessor can also strongly affect the result:

Outcomes can vary depending on assessor knowledge, the quality of supporting evidence, whether someone has advocacy, and whether they are able to challenge a decision. This means the system can reward confidence, literacy, stamina and support networks rather than need. People with the same functional difficulties may receive different outcomes.

Needless to say, this assessment lottery is the exact opposite of equity and fairness.

The experience of claiming PIP

Alongside this distinct unfairness, participants described the assessment process itself as a “dehumanising”, “soul destroying” and “degrading” ordeal. One participant said that this was the case regardless of the outcome:

The process completely dehumanises the individual and makes them feel like garbage regardless of the outcome.

In particular, the assessment involves describing intimate personal details to a complete stranger, which is often demeaning. These range from personal trauma and mental distress to personal hygiene and how one goes to the toilet.

These issues, in turn, led to a low level of trust in the system altogether. Respondents often highlighted that they felt their responses could be weaponised against them:

I felt like I was being cross‑examined, not supported. Every answer I gave felt like it was being used against me.

Meanwhile, assessors treat adjustments as “optional or exceptional”:

I asked for extra time and different communication methods but was told they did not have time for reasonable adjustments.

We shouldn’t need to say it, but hey ho: this is meant to be a disability assessment. Reasonable adjustments are key to a fair process, not a nice-to-have bonus.

As we’ve been saying…

Of course, none of these responses are new information. They reflect precisely what disabled people and advocacy organisations have been saying about the PIP system and the DWP for years. However, the fact that they’ve now been collated into a formal review is a positive step.

As always when it comes to inquiries like this, the report is a description of the problem, not a solution. Now, the government must listen to and act on the findings – kicking the can down the road and claiming ignorance will no longer cut it.

Featured image via the Canary