Transitioning from DLA to PIP: Jake’s story

Feature - 21/04/2023

Applying for these benefits when you have an ‘invisible’ condition can be extremely challenging for people with cystic fibrosis (CF), especially since the rules for claiming PIP are notoriously strict.

Here Jake* shares his experience of switching from Disability Living Allowance (DLA) to Personal Independence Payment (PIP).

April 2023 marks ten years since Personal Independence Payment (PIP) was first introduced.

When Jake, a young person with CF, turned 16, he had to switch from receiving DLA to PIP. This is his story.

“We felt angry and bewildered”

Initially, Jake and his family thought switching from DLA to PIP would be automatic, but they soon realised this was not the case.

After completing the lengthy forms required to apply for PIP, Jake was sadly refused the benefits.

“We felt angry and bewildered that Jake had failed to register a single point [needed to be awarded PIP],’ his family said.

“He wasn’t granted any points for the general disruption CF places onto his day-to-day life, including his many medications and pre-emptive physiotherapy.”

Support from Cystic Fibrosis Trust

After receiving this devastating news, Jake and his family immediately contacted Cystic Fibrosis Trust for advice and were put under the guidance of Sangeeta, the Welfare and Rights Advisor at the Trust.

“She was lovely,” Jake’s family says.

“Sangeeta helped us enormously. She ensured we had all of our medical evidence from Jake’s CF team and helped us rewrite our answers for the mandatory reconsideration appeal.”

At the same time as Jake’s DLA was stopped, the family also lost access to their working tax and carers benefits. The impact on their finances felt like a sledgehammer, but they were able to receive a small grant from the Trust, which they say helped immensely to soften the blow.

“The money we received for Jake helped us cover the cost of the extra food he requires, keeping the heating and water on for longer, paying for his sports clubs which are essential for Jake’s health, and to help compensate for the time off work and fuel needed to take him to his medical appointments and countless trips to the pharmacy.”

Despite their best effort in appealing the initial decision, Jake’s mandatory reconsideration form was also rejected, as yet again, he scored no points.

“It became clear at this point that our application was not being considered properly,” the family says.

“Unperturbed and encouraged by all the CF specialists around us, we proceeded to appeal for an independent panel to reconsider Jake’s application.”

Four weeks later, Jake’s family received an unexpected phone call from the Department for Work and Pensions (DWP) asking for an informal chat.

Speaking to a human on the phone made all the difference, rather than having to fill out forms outlining the constant battle in getting Jake to engage with all of his medications and procedures.

“They asked whether Jake is motivated to study and to explain why he is not motivated to take all his medicines,” his family says.

“I answered that besides the usual teenage angst, children with CF have had to go through years of daily procedures, medications and disruption, and sadly they can become angry, tired, complacent and frustrated with the daily grind of living with a degenerative lung condition. And their parents’ constant prompting and pleading is sadly the norm.”

Explaining Jake’s struggles with taking his Creon®, the consequences of weight loss and his many hurried trips to the toilet appeared to resonate with the lady on the phone.

A huge relief

And after this call, Jake was finally granted PIP, and his other benefits were both reinstated and back-dated. This has been a great relief for the whole family.

They say: “The whole process can be quite challenging and difficult, but if you stick to your guns, take on all the advice from Cystic Fibrosis Trust and people who have been subjected to the whole process, you will get there eventually.

“I think the Government needs to recognise and understand what cystic fibrosis is and what the repercussions of not keeping on top of the disease are for all its sufferers. This is where we have to thank the Trust for its continued endeavours and support.”

*Name has been changed to protect anonymity

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