“A totally degrading experience”: how the PIP system is failing people with cystic fibrosis
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 PIP.
The report, published today, shows:
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People claiming PIP are often not given the right decision
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PIP forms are complicated to fill out, and don’t allow people with CF to accurately and fully describe their condition
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Waiting for PIP decisions is negatively impacting the physical and mental health of people with CF
For over a third (38%) of people with CF who receive PIP, the right decision was not made the first time, meaning people have to go through stressful appeals to get the PIP they’re entitled to.
95% of CF health professionals agree and believe the correct decision is not normally made the first time. 7% of these professionals think the correct PIP decision is never normally made.
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. 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.
We are calling for a new, fairer PIP system that works for people with CF, and:
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Prioritises specialist medical evidence
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Ensures all assessors understand CF
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Stops wasteful and stressful reassessments for lifelong conditions
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Reflects living with fluctuating conditions
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Recognises the real burden of treatment
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Has shorter, clearer forms
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Restores trust between assessors and claimants
It’s vital that the Government ensures PIP properly supports those living with chronic, lifelong conditions like cystic fibrosis. 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. The findings in this report show that the current PIP process is failing people with CF.
David Ramsden, Chief Executive at Cystic Fibrosis Trust
We’d like to thank everyone who shared their experiences and contributed to this report. Please, continue to share your experience with us, and share this report with your MP. The Trust will continue to work with the Timms review, and with Government, to put forward the strongest possible case on behalf of people with CF and their families.
Ellie has two children with CF. She said:
“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.
“Without the Trust’s help we wouldn’t have had the confidence for tribunal. The process is so hard that you just wouldn’t do it without backup. It just shows how hard the process is.”
The new survey also reveals that every single health professional thinks the PIP process negatively affects their patient’s mental health and 90% of people with CF said it affected their mental health.
Kyla has a child with CF. She said:
“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.”
The Trust has calculated that living with cystic fibrosis now costs a typical family £7750 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. PIP does not fund luxuries. Without PIP, half of people with CF would have to cut back on food, a quarter would have to cut back on heating, and 1 in 10 would have to cut back on hospital appointments.
It’s really sobering to listen to the lived experiences of people with CF and every day I’m 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.
Wendy, a Social Worker in Blackpool’s Adult Cystic Fibrosis Service
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.
You can read our full report here
You can read more from Ellie and Kyla’s stories here
For a shorter version of the report, click here
How you can help
The most effective way to make an impact is by emailing your local MP and sharing this report with them.
To find your MP’s contact details, simply enter your postcode here. We’ve also prepared a template email to make it easier for you to get started – just customise the highlighted sections before sending.
Click here for a template to share this PIP report with your MP
Please share your email with, or copy in, [email protected] so we can continue speaking out on behalf of the CF community.
How to get support
If anything in this report is causing you worry or affecting your health, please reach out to your CF healthcare team or contact our Helpline. For advice regarding your current benefits, speak with your CF social worker or get in touch with our welfare team through the Helpline.
Share your story
If you’d like to share your experience in the media and help us advocate for the CF community, please email us at [email protected].