Making sure people with cystic fibrosis are treated fairly when assessed for benefits

To make sure we’re reflecting the realities of life with CF, we have actively sought your experiences. When we recently asked about your experiences of Personal Independence Payment (PIP) for adults and Disability Living Allowance (DLA) for children, 450+ of you responded to our social media poll and 270+ to the survey.

We know that for many people with CF and their families, PIP or DLA is a lifeline and helps to meet the extra costs of disability. Sharing your experience with us has allowed us to tell the Government how hard it can be to apply for disability benefits, and how hard it is to manage without, when this is not judged fairly. This is why our calls for changes to the system are so important.

Despite advances in treatment, CF remains a long-term condition with no cure. The additional financial costs of living with CF can have an impact on day-to-day finances and many people rely on the extra support they can get from the social security system.

When the Government launched a consultation on health and disability benefits, we were able to share your experience of applying for disability benefits, what you use them for, and how you would or wouldn’t manage without them. Our community told us that they use their PIP to pay for basics such as extra food needed by people with CF and for travel costs to hospital, both of which are essential to stay well.

We made sure the Government know this, and it reinforced our argument that for many, PIP is not a luxury or optional; it can be the difference between maintaining health and deteriorating.

55% of people who responded to our survey told us that they use the extra money for their gym membership, and we made sure to tell the Department of Work and Pensions just how important this is for people with CF to be able to stay well.

People with CF are encouraged to work, be active, and take exercise, but this is held against them when they are assessed. The system does not encourage people to be as active and well as possible. Instead, many clients say, that they should not have to deteriorate in order to get the financial support they need to keep them well.

Specialist cystic fibrosis social worker

To ease the financial difficulties that some people with CF face, we have asked that consideration is given to ending PIP re-assessments for all people with long-term conditions like CF, where the treatment burden and overall health is unlikely to change dramatically.

Specifically, we have drawn attention to the negative impact that constant PIP re-assessments have on the mental health and wellbeing of people who are also living with a long-term condition. Removing this requirement could do so much to relieve some of the daily pressures and anxieties people face about managing their finances.

We also responded to the Treasury Spending Review consultation and wrote letters and briefings ahead of the budget, sharing our calls and concerns with MPs from across the UK.

One of our calls to Government was to remove reassessments for people deemed unwell enough to require a transplant. If clinical teams have judged a person in need of a transplant, then disability assessors should be relying on the expert medical evidence of CF teams to see that their condition meets the criteria to qualify for PIP or DLA.

As part of this, we have been working with the Department of Work and Pensions to refine the criteria for a new grouping of people whose health condition or disability is deemed severe enough to not face re-assessments. We have emphasised how important it is for people with advanced cystic fibrosis to be part of this group, and the negative effects of constantly wondering if your finances will be affected can have on people in such precarious health.

We are relentless in our determination that disability benefits should work for people with progressive conditions and have submitted evidence to this effect to the Work and Pensions Select Committee Inquiry into health assessments for benefits. The Committee has launched a survey to hear about first-hand experiences of the assessment processes for PIP and Employment and Support Allowance (ESA). We encourage you to complete the survey and have your voice heard.

We hope that the UK Government will take heed of our calls to make the disability benefits system fairer for those with progressive, life-limiting conditions like CF, to reduce the stress and anxiety caused by the application and re-assessment processes, and to take the opportunity to support those who are most vulnerable.

We urge the government to acknowledge the disproportionate effect the pandemic has had on those with a disability, and to make these changes at little cost to the exchequer but with huge impact on those affected.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,600 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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