'I waited nine months for PIP decision. It was horrendous and my mental health suffered'

For nine months, Jake didn’t know whether they had got their personal independence payment (PIP) claim right.

They worried they hadn’t filled the form in correctly and would have to start again. Meanwhile, their mental health suffered.

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

Read more:

• Timms Review recommends changes to ‘dehumanising’ PIP assessment process
• British public don’t back cuts to disability benefits – even Reform and Tory voters
• Labour is facing calls to means-test disability benefit PIP. Here’s why it would push up poverty

Jake, 34, lives in a care home supporting people with mental health needs. After gambling problems left them with around £29,000 of debt, they have been working with debt advice organisation Money Wellness to rebuild their life.

Money Wellness helped Jake identify that they could be entitled to PIP, which helps with the extra costs associated with a long-term health condition or disability. But applying was stressful.

“I think the questions are very generic,” said Jake. “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. Jake had been referred to the process by a community psychiatric nurse but needed help from care home staff.

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

Jake’s experience is far from unique. Money Wellness data on universal credit shows how difficult it can be to navigate the benefits system. Of those receiving a benefit review, two in five were potentially entitled to more universal credit, but half had not claimed it. More than one in three feared claiming could affect their existing benefits, while more than one in five had nobody to help them apply.

Completing the form was only the beginning. Jake waited around nine months for a decision. “That nine months was horrendous. I was nervous. I was thinking, did I put the right thing? Am I going to get it?”

Jake also remembers their aunt, who made a PIP claim, died around a 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,” Jake said.

Jake is now receiving PIP, with their latest award extended to 2031. But the thought of claiming again causes anxiety.

“I get nervous already about having to fill out the form again. They should understand that we struggle with anxiety, depression and suicidal thoughts.”

Could the Timms Review change the PIP process for the better?

Jake’s experience comes as the government’s Timms Review examines how PIP could be made easier and fairer to navigate.

Its emerging recommendations, published in September, are not yet final. Nearly 4,000 people registered interest in workshops to test the proposals, with a final report expected later this autumn.

The recommendations include making the PIP2 form easier to complete, improving how fluctuating conditions are considered, reducing unnecessary reviews for people with lifelong or degenerative conditions, and making better use of evidence.

The review also proposes an advocacy service for people who struggle to explain how their condition affects them.

For Jake, that could make a huge difference. “Just having a support service alongside to help fill out the forms would help a lot,” they said, adding that people should not have to rely on charities for support.

“The government should provide that help because you’ve got a disability of some sort.”

The review’s emerging principles also say PIP should remain non-means-tested, with cash remaining the foundation of the award.

Michelle Cardno, founder of FightBack4Justice, an independent, non-profit organisation offering advice and support on welfare benefit issues, welcomes the emerging recommendations.

Cardno said: “From our perspective at Fightback4Justice, many of the emerging recommendations from the Timms Review are very welcome.”

But Cardno argues reform must go beyond simplifying the form.

“Changing the form alone will not solve the underlying problems,” she said. “Someone can give a completely truthful account of their disability and still fail to provide the information needed to establish entitlement simply because they do not understand what is relevant.”

She wants people who may struggle with the process, including those with mental health conditions, learning disabilities, autism or cognitive difficulties, identified early to “provide meaningful support rather than expecting them to navigate the system first and ask for help afterwards”.

Cardno also wants evidence from carers, family members and professionals to be used more effectively.

“Jake’s experience of waiting nine months demonstrates why improving the form is only part of the answer. The whole journey, from application through assessment and decision-making to mandatory reconsideration and appeal, needs to be considered.”

Why means-testing PIP worries campaigners

The Institute for Fiscal Studies has suggested means-testing PIP by linking eligibility to universal credit, estimating it would deliver an immediate saving of up to £8.2bn, a 33% reduction from current levels.

Cardno is concerned the move would change the purpose of PIP.

“On means-testing PIP, I would have significant concerns about moving it into universal credit. PIP currently has a fundamentally different purpose,” she said. “A disabled person’s additional costs do not disappear because they work, have savings or live with a partner who earns an income.

“For us, the priority should be making PIP fairer, more accessible and more accurate, rather than changing it from a disability benefit into a household means-tested benefit.”

The proposal also differs from the Timms Review’s emerging principle that PIP should remain non-means-tested.

Jake’s story is about more than a benefits form. It’s about what happens when someone already struggling with their mental health is asked to navigate a complicated system, then left waiting for months.

As the Timms Review considers changes, Jake’s message is clear: “There just needs to be better communication.”

Gabrielle Pickard Whitehead is lead finance writer at Money Wellness.

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