‘My son has cystic fibrosis. The government wrongly denied him PIP – twice’

It’s not easy to talk to your children about death. But Ellie Griffin felt that she had to have the conversation with her children, two of whom have cystic fibrosis [CF].

“Cystic Fibrosis [CF] impacts pretty much every part of the body,” said Griffin. “You’re dealing with your mortality all the time. It’s a question mark, right from young age.”

“I found with my kids, we did talk about life and death, from a very young age.”

Two of Ellie’s three children have CF – a genetic condition that causes breathing and digestive problems. While many people live long lives with the disorder, the severe lung damage and respiratory failure that it causes can be life shortening and can inhibit everyday life.

Yet according to damning new research, many people living with CF are wrongly being denied personal independence payment (PIP), a benefit that helps people living with long-term physical or mental health condition or a disability with living costs.

Read more:

• What is PIP and how do I claim it? Everything you need to know about the DWP disability benefit
• How to navigate DWP disability benefit applications and PIP assessments
• The UK’s top mental health charities: How they help and how to support them

According to figures from the Cystic Fibrosis Trust (CFT), over a third (38%) of people with CF who receive PIP were wrongly rejected the first time they applied for the payment – then granted it on appeal.

The survey also revealed that 90% of people with CF felt they couldn’t fully and accurately explain what it is like to live with CF on their PIP forms, and 60% said they couldn’t have filled out their forms without help.

The current system is “failing” vulnerable people, said David Ramsden, chief executive at Cystic Fibrosis Trust.

“It’s vital that the government ensures PIP properly supports those living with chronic, lifelong conditions like cystic fibrosis,” he said. “We need a system that is fair, fit for the future, and supports the health and independence of people with cystic fibrosis, a lifelong condition without a cure.”

There are over 11,300 people living with CF in the UK. 6,700 are over 16 (the minimum age you need to be to claim PIP) and almost half (46%) receive the payment.

The Department for Work and Pensions (DWP) told Big Issue that an initial PIP rejection is not always a mistake and said reforms are underway to ensure the benefit is “fair and fit for the future”.

When do young people have to apply for PIP?

When Griffin’s children turned 16, the family stopped receiving their disability living allowance. They also stopped getting carer’s allowance and the disability element of working family tax credit.

This is the standard procedure – claimants enter the PIP system at this age – but Griffin told Big Issue it took a serious toll on the family’s finances, lessening their annual income by about £9,000 per year.

When Griffin’s two kids were growing up, this disability allowance money was a lifeline.

“We spent a lot of time when they were little, in and out of hospital,” she said.

“I ended up learning how to do their IV antibiotics at home. We did all the physio – you’re always at an appointment, so my husband didn’t work. Because we just didn’t have the capacity to do all the care things that they needed.”

The CFT has calculated that living with the condition now costs a typical family £7,750 more annually. PIP can often be a lifeline, enabling those with CF to afford crucial necessities: healthy food, heating, and travel for vital medical appointments.

Without PIP, half of people with CF would have to cut back on food, a quarter would have to use less heating, and one in 10 would have to reduce hospital appointments. 

Griffin’s eldest child was feeling “pretty well” when she turned 16, so didn’t apply for PIP. But her son Zac’s lungs were in bad shape. He was also spending a lot of time in and out of hospital for liver disease.

Griffin presumed he would be granted PIP immediately. But his application was rejected.

“He got zero,” she said. “We did the initial ‘we don’t agree with that’ appeal, but we got denied again.”

Eventually, with help from the CFT, the negative decision was reversed. But the 18-month ordeal took a serious toll.

“How it felt was Zac was having to prove that he was worthy receiving some support. And it very much felt like: ‘Are you worthy or not?’,” said Griffin.

“It felt like very much a judgment on him, which as a parent, I found really difficult. He is someone who is disabled and struggles with their own anxiety and all those things. And then you’re being told: ‘Well, you’re not worthy’. It’s just, like, he’s 16!”

According to the new CFT research, 95% of CF health professionals believe assessors don’t take into account how the health of people with CF can fluctuate – symptoms can change rapidly, and many people with CF experience periods of severe, acute ill health.

This tallies with Griffin’s experience: “The questions are so general, they rarely understand how disabilities work,” she said.

“It’s rare we go a week without going to an appointment or hospital – and that’s when he is well. If he had an infection or something worse, you’re in there all the time. Will he be able to get a job that will enable him to do that?”

Some 95% of CF health professionals agree and believe the correct PIP decision is not normally made the first time the DWP assesses applications. Around 7% of these professionals think the correct PIP decision is never normally made.

Wendy, a social worker in the charity’s Adult Cystic Fibrosis Service in Blackpool, said that she was “struck by the difficulties people are having”.

“I’m part of a small team, and we are very, very busy writing supporting letters for PIP assessments and reviews. It’s definitely become the main thing people are asking about.

“For something as challenging as CF, anxieties are definitely spiked around PIP reviews. I’ve had clients say they are ‘scarred’ by the experience, refuse to go through the process again, and others who can’t even talk about it. It’s not going to go away or magically resolve itself, it needs urgent reform.”

No one should have to go through what Zac did, Griffin said.

“Cystic Fibrosis is much bigger than lungs, it puts a question mark over a lot of your life,” she said. “So to have that questioned was very hard.”

A DWP spokesperson said that an initial rejection is not always a mistake.

“If a PIP claim is successful upon mandatory reconsideration or appeal, this does not necessarily mean they were incorrectly rejected the first time. Claims can be rejected for a number of reasons including a lack of suitable evidence,” they said.

“However we know PIP can be improved, which is why we launched the Timms Review, working with disabled people and their organisations to ensure the benefit is fair and fit for the future. We also opened a call for evidence last month so people can share their views on how the benefit should be reformed.”

Do you have a story to tell or opinions to share about this? Get in touch and tell us more. 

Change a vendor’s life.

Buy from your local Big Issue vendor every week – and always take the magazine. It’s how vendors earn with dignity and move forward.

You can also support online:
Subscribe to the magazine or support our work with a monthly gift. Your support helps vendors earn, learn and thrive while strengthening our frontline services.

Thank you for standing with Big Issue vendors.