Our major new report, State of the Nation, reveals stark inequalities in the diagnosis, treatment and support of people living with pulmonary fibrosis (PF) across the UK.
Backed by a survey of over 1,200 people, the report shows that many patients face delays to diagnosis of up to two years, widespread misdiagnosis and a ‘postcode lottery’ to access specialist care and support, despite the condition having a life expectancy of just three to five years.
In spite of this, there are currently no standardised national PF care programmes to ensure timely diagnosis and equitable access to treatment and support.
One in three respondents were initially misdiagnosed, commonly with asthma or chronic obstructive pulmonary disease (COPD), with nearly one in five having to see a healthcare professional five or more times before being referred to a specialist.
The report uncovers a ‘postcode lottery’ when accessing treatment and support. Among those diagnosed within three months, 40 percent lived within 20 miles of a specialist centre. By contrast, almost half of those living more than 100 miles away waited up to two years for a diagnosis, on top of the physical, emotional and financial barriers of having to travel further afield.
Even after diagnosis, PF support remains inconsistent. Access to pulmonary rehabilitation, physiotherapy and psychological support varies widely depending on location and only a small minority of patients felt their care was well coordinated with their GP. Many also reported significant side effects from antifibrotic medications, underlining the need for more personalised treatment and better support.
Our CEO, Daniel Saxton, said the findings show “a system that is failing people with pulmonary fibrosis”, adding that where someone lives should not determine how quickly they are diagnosed or the care they receive.
We are calling for urgent nationwide improvements to PF services, including bringing care closer to home; embedding specialist expertise at regional level; and implementing standardised treatment plans across the UK.
Read the Pulmonary Fibrosis Starte of the Nation 2026 report and learn more about how you can support our recommendations for change.