New reports reveal realities of cystic fibrosis

News - 31/10/2024

To mark 60 years of Cystic Fibrosis Trust, the charity today publishes its latest Registry report, revealing an increase in predicted survival for those with cystic fibrosis (CF) born today, but still lagging decades behind general life expectancy. And latest research shows many are not receiving the support they need to manage the lifelong, life-limiting condition.

There are over 11,300 people with CF living in the UK. Results from the 2023 UK Cystic Fibrosis Registry Annual Data Report, published today, shows a new estimated median predicted survival age of 64 for babies born with CF today, which critically, although is up from 56 in 2022, is still much lower than the general population.

CF remains a life-long, life limiting condition with no cure. CF also carries a large treatment burden, and many people now worry about a future they never planned for. Recent improvement in predicted survival is partly due to widespread access to modulator therapies, which were recently approved for permanent access by NICE and the NHS and offer improved lung function and reduced flare-ups. Despite this, not everyone can benefit from these medicines.

When I was born my mum was told I’d be lucky to make 18, then as a toddler it was 21, and then 40 and now that keeps extending – I don’t know how long I’ll live. My mentality has always been that I want to live 80 years of life in the 40 years I have. I don’t have the privilege of time, even though hopefully that will be different now.
Poppy, age 25 living with CF

Earlier this year, the Trust launched the Your Life and CF report, revealing the huge mental toll the condition takes on people with CF. 43% of respondents revealed they worried about the future every single day. People with CF rate their average happiness levels as 5.6 out of 10, when the national average is 7.5.

One respondent said “[I] didn’t make healthy lifestyle choices because I thought it wouldn’t matter, now I have to start thinking of those things and planning for a future that I didn’t think I’d have.” They also mentioned the toll of “the mental burden as always, dwelling on the past and the burden it puts on my family, and also the uncertainty of not knowing when it’ll get worse again.”

To stay both physically and mentally well, people with CF need access to a team of specialists including doctors, nurses, psychologists, pharmacists, social workers, physiotherapists, and dietitians. The charity’s UK Patient Reported Experience Measures Survey, also published this month, found that 93% of people rated the support they were getting with physical health and hospital care as excellent or good. But 11% of those who needed support from a CF social worker said they couldn’t access one as no one was available. This figure was 6% for those attempting to see a clinical psychologist.

One respondent noted “I was having very bad issues with stress and health anxiety, which was also causing me some physical symptoms. I managed to get into clinic very quickly to discuss the physical symptoms but was told there was a three-month waiting list to see the CF psychologist. This felt extremely stressful at the time on top of other issues.”

It’s thanks to the CF community - our incredible supporters, CF professionals, researchers and most importantly people with CF, that so much has been achieved in the last 60 years but cystic fibrosis still makes life too hard and too short for too many.

People with cystic fibrosis live with a 24 hour a day, 365 day-a-year life-limiting condition that impacts all their life choices. Too many struggle to get the support they need and are feeling the mental, physical and financial pressures of their condition more and more.

There is still much more work to do. We won’t stop until everyone with CF can live a life unlimited.
David Ramsden, Cystic Fibrosis Trust Chief Executive

Cystic Fibrosis Trust was founded on 20 February 1964, and since then, there have been a number of huge developments in CF detection and treatment. In 1996, the Trust launched a campaign for all babies to be tested for CF as part of a newborn screening programme, and in 2007 this was rolled out across the whole of the UK. The Trust has also played a huge part in efforts to ensure that people with CF have access to new treatments.

For information or support with cystic fibrosis, Cystic Fibrosis Trust’s Helpline is available on 0300 373 1000, on email at [email protected] or on WhatsApp 07361 582053