“I was nervous that I’d put the wrong thing down”: Jake’s nine-month struggle to get PIP

For Jake, applying for personal independence payment (PIP) meant nine months of anxiety, uncertainty and not knowing what was happening with their claim.

“I didn't understand what they were actually asking me most of the time.”

Jake, 34, lives in a mental health care home. Their struggles with gambling led to around £29,000 of debt, but with support from Money Wellness, they have begun to rebuild their life.

Money Wellness also helped Jake identify that they could be entitled to PIP,  a government benefit designed to help with the extra living costs associated with a long-term physical or mental health condition or disability.

Jake says they knew very little about PIP before applying.

They were referred to the process by a community psychiatric nurse, but struggled to understand what the form was asking them to explain.

“I think the questions are very generic,” Jake told us.

“It says things like, ‘How’s your mobility?’ and ‘What do you struggle with?’ I’m like, what are you asking me?”

“I didn't have a clue what I was filling out.”

The form took more than a week to complete.

“Thank goodness I was in the care home because I got support from the care staff and the manager.”

Without that support, Jake says they are not sure they would have managed to claim at all because they didn’t understand the questions.

Nine months of waiting

Completing the form was only the beginning.

Jake says they waited around nine months for an outcome, with little communication during that time.

Asked about the impact it had on their mental health, Jake said:

“Oh 100% it was worse.”  

“I was nervous. I was thinking, did I put the right thing? Am I going to get it? Am I not going to get?”

“It took about nine months before they got back to me.”

“That nine months was horrendous. I was nervous that I’d put the wrong thing down. Did I do it wrong? Would I have to do it again?”

Jake explained how their aunt had made a claim for PIP and had passed away about month after an assessment.

“She would have still died, but she wouldn't have been as anxious. The process really does need to be made easier and quicker.”

Now they're on PIP - but the anxiety hasn't gone away

Jake is now receiving PIP, with their latest award extended to 2031.

But the prospect of having to go through the process again still causes anxiety.

“I get nervous already about having to fill out the form again.”

They believe people living in care homes need a better way to navigate PIP, particularly those receiving mental health care.

“They should understand that we struggle with anxiety, depression and suicidal thoughts. There just needs to be better communication.”

What could change under the Timms Review?

Jake's experience comes as the Timms Review looks at how PIP could be made easier and fairer to navigate.

The review's emerging recommendations, published in September, are not yet final. They are now being tested with disabled people and people with long-term health conditions before the review publishes its final recommendations later this autumn.

Nearly 4,000 people registered interest in taking part in the workshops.

Several of the proposals directly address the problems Jake experienced.

The review proposes making the application form easier to complete and what evidence and information is required. It also suggests reducing unnecessary reassessments for people with lifelong or degenerative conditions.

“The forms are very complicated,” says Jake, “and having fewer assessments would be good.”

Support could become part of the system

Perhaps most importantly for Jake, the emerging recommendations propose an advocacy service for people who struggle to explain how their condition affects them.

The review also proposes a more personalised approach for people who need additional support, potentially including designated teams providing continuity throughout the claims process.

Jake believes that kind of help should not depend on whether someone happens to find a charity or support organisation.

“Just having a support service alongside to help fill out the forms would help a lot.”

“It shouldn't be relied on a charity. The government should provide that help because you've got a disability of some sort.”

“They've got to understand that some people can't fill out the form.”

The cost of getting it wrong

Our own data is on universal credit rather than PIP, so it doesn’t show how many PIP claimants face the same barriers.

But the experience of people seeking benefits advice highlights how difficult navigating the system can be.

Among people who came to Money Wellness for a benefit review:

• two in five were potentially entitled to more universal credit
• half of those who were potentially entitled to more had not tried to claim it
• more than one in three feared a claim could put their existing benefits at risk
• more than one in five had nobody to help them apply

For Jake, having someone to help made a huge difference.

Money Wellness helped them navigate the PIP process, and relieved some of the anxiety had built up around it.

“It’s like a weight lifted off your shoulders. Just relief.”

“If I needed to contact them [Money Wellness], they were there.”

“It was someone who was on my side.”

Jake's story is ultimately about more than a form.

It’s about what happens when someone who is already struggling with their mental health is asked to navigate a complicated system, then left waiting for months without knowing whether they have done it right.

The Timms Review is now considering whether changes such as simpler forms, fewer reassessments and access to advocacy can make that process easier.

For Jake, the answer comes back to one thing.

“There just needs to be better communication.”