Pulmonary fibrosis (PF) is a terminal lung disease with no cure. It slowly steals the ability to breathe. Around 150,000 people in the UK live with PF, and 18,000 are diagnosed each year. NICE quality standards state everyone with PF should have access to a specialist nurse, yet too many are denied the expert care and support they provide. In APF's 2026 UK-wide survey of 1,200 people, only 7% said their care was well coordinated and over half were not told about services that could help them.

In 2027 we will fund a one-year specialist PF nurse pilot, filling a critical gap in PF care. The nurse will provide expert, coordinated care from diagnosis onwards, helping patients understand PF, manage symptoms and treatment side effects and access vital support such as oxygen therapy, pulmonary rehabilitation and financial advice. The pilot will demonstrate the impact of specialist nursing and, alongside our survey, help build the case for expanding specialist PF nursing across the UK.