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Pulmonary fibrosis is a devastating, progressive lung scarring disease which sees 20,000 people diagnosed each year. It shortens lives and is on the rise. Despite this, access to treatment is a postcode lottery, leaving many without the care they urgently need.
More than 1,175 people affected by pulmonary fibrosis wrote to their MP calling for urgent improvements in pulmonary fibrosis (PF) care, resulting in nearly 50 MPs attending a drop-in event at Portcullis House on Wednesday 5 February.
The event spotlighted critical disparities in pulmonary fibrosis diagnosis and treatment - often tied to poverty and distance from specialist clinics. Research reveals people in poorer areas face a 36% worse survival rate from PF than those in wealthier areas, while those living farthest from a respiratory clinic encounter a 34% worse survival rate than those who live closer. Heat maps shared at the event showed the pronounced link between deprivation, geographical isolation, and poorer survival rates.
The event championed the work of Action for Pulmonary Fibrosis (APF) and movement for change OneVoiceILD, who have worked with healthcare professionals and people affected by pulmonary fibrosis to create a new national care pathway which will bring good quality care closer to home.
Carol-Ann Kelly, from Bognor Regis, is in her late 60’s and living with PF. Speaking at the event she said;
It was so important for me to have my voice heard at this parliamentary event. I feel isolated and left in limbo with my pulmonary fibrosis diagnosis. I need to start treatment because I want to be able to live my life now. I’m speaking out not just for myself but for others who have similar experiences.
Stephen Foster, in his 60’s, from Wetherby, sadly lost his wife last year at the age of 61 years to PF. Attending the event, he commented:
When care isn’t accessible, every day waiting for a diagnosis or treatment feels like an eternity. By bringing these stories directly to MPs, we hope to ensure families no longer face such uncertainty.
Daniel Saxton, APF Chief Executive, welcomed the strong parliamentary turnout, saying:
We have not only highlighted the pressing inequalities in PF care, but also demonstrated how charities like ours are actively contributing solutions and forging partnerships. At APF, we’re committed to working with decision-makers to shape practical, effective solutions for people living with PF, nationwide. Our OneVoiceILD programme unites clinicians, policymakers, and people affected by PF, ensuring we leave no community behind and offers a real-world solution to this issue.
This timely event in parliament comes with an opportunity for change as the responsibility for the planning of PF services comes in April. With Integrated Care Boards (ICBs) in England soon assuming responsibility for specialist Interstitial Lung Disease (ILD) services, APF is advocating for a truly integrated approach that addresses inequities in PF care through implementing the OneVoiceILD National Integrated Care Pathway.
The charity stands ready to support ICBs in implementing a consensus care pathway that streamlines referral processes and ensures consistent, high-quality treatment.