Government invites people to submit experiences of PIP

Sir Stephen Timms, the Minister for Social Security and Disability, is leading the first full review of Personal Independence Payment (PIP) - a benefit to help with additional costs of a disability - since its introduction in 2013.

We’re very grateful to everyone who contributed to our survey and shared your experiences of PIP – over 400 of you responded! Next week, we will publish the findings and share our recommendations with the Government.

You can also respond directly to the Government’s consultation as well, even if you didn’t fill out our initial survey. You can find more information about the call for evidence here, and complete the form here. You have until 28 May 2026 to submit your experiences.

Ahead of the publication of our  report, we spoke to two parents of children with CF who had difficult experiences when applying for PIP. You can read their stories below.

Ellie’s story

Ellie has two children with CF. She said: I started the PIP process when my youngest was 16 and needed to make the transition from Disability Living Allowance (DLA). My eldest keeps really well, so we never applied for PIP, but my youngest also has liver disease and very poor mental health.

As they transition into adulthood, I find myself, as a parent, desperately trying to advocate for them, enable them, and get them the support the need. They don’t want to be dependent on me. PIP is one of those support networks that helps them get independence.

As part of my work, I often support people going through PIP with the application process. I knew what to do and felt fairly confident, but when the response came back, we found out he had got zero points. 

I did the mandatory reconsideration and at that point found out about the support Cystic Fibrosis Trust provides for people applying for benefits. I made contact with Sangeeta, a Welfare and Rights Advisor at the Trust, and she helped us from there. The mandatory reconsideration was unsuccessful, so she then helped us bring an appeal to tribunal.

I don’t hear well, I have a hearing aid, and I lipread and use captions. At the tribunal, we informed them of my access needs, and they didn’t respond to us. On the day there were no closed captions. We were given a choice to come back another day, but we had already waited so long that we wanted to just have it over and done with. 

The way the tribunal was set up, the camera was miles away and I couldn’t see anyone on the screen, so I couldn’t tell they were talking. Zac struggled to hear them and had to get them to repeat themselves again and again. I wasn’t able to participate in that conversation at all. If I had, I might have been able to argue his case better and get him enhanced mobility. It made it impossible to support a vulnerable 17 year old through a stressful situation.

Kyla’s story

Kyla has a child with CF. She said: My daughter has CF and anxiety and wouldn’t have been confident enough to do the forms by herself. I was used to applying for various kinds of support, so I didn’t even consider that we wouldn’t get it. I thought it would be a natural transition and was shocked when we got the result back and she had been awarded zero points. 

The process waiting for appeal ended up being so long that I was able to get a good backing letter and the evidence I needed. I was waiting for the tribunal, and I got a phone call out of the blue saying they were happy to offer us the enhanced level of support. She had gone from 0 to 16 points. 

For me and my family it was about standing up to prove that she has a disability, needs support, and that CF needs to be fought for. CF has so many financial constraints and it costs so much more just to exist. It’s a life-limiting condition, there isn’t a cure, so I also don’t understand why we keep having to reassess every few years as well. The thought of going through it all again is stressful.

It leaves me feeling really angry. Why did we have to fight for a whole year? It was so frustrating. It's caused us all emotional strain, stress, and financial strain. I’ve spent months worrying about the future, worrying if she would have that support in place. I think a lot of people would give up. And that’s not fair. Without having the support of the Trust and Sangeeta, I might have given up too.

How we can support you 

If you need benefits advice or are struggling with your finances, please speak to your CF social worker or contact our Helpline, who can put you in touch with our welfare team. 

We offer support for applying for benefits like Personal Independent Payment, Adult Disability Payment, Disability Living Allowance, Child Disability Payment and Universal Credit.