Edward has met with campaigners and the team from Action for Pulmonary Fibrosis to discuss the impact of the devastating disease, and their calls for improved diagnosis, improved local access to specialist treatment services, and for increased awareness of the disease.
Pulmonary fibrosis (PF) is a terminal interstitial lung disease caused by scarring of the lung lining, which progressively affects a person's ability to breathe, with up to 20,000 people diagnosed with PF every year. The UK charity, Action for Pulmonary Fibrosis, brought its team, experts, and people impacted by pulmonary fibrosis together in Parliament to highlight that those affected by this disease risk seeing greater challenges in receiving a timely diagnosis and access to specialist treatment than was previously thought. On average, patients will see at least 3 specialists before a correct diagnosis is made, with 55% being initially misdiagnosed; Once diagnosed, while PF is incurable, antifibrotic drugs can slow the disease's progress. But antifibrotics can only be prescribed from the country's 23 specialist treatment centres, rather than by locally based consultants. Action for Pulmonary Fibrosis is calling for action to improve diagnosis rates, and to roll out access to these crucial antifibroitic drugs more widely.
Edward said: "It was a pleasure to attend the Action on Pulmonary Fibrosis event in Parliament, to hear more about this devastating disease, what more can be done to improve outcomes for patients with PF, and to hear more about the charity's vital work to support everyone affected by pulmonary fibrosis, to provide expert information and resources, funds and to promote vital research. I look forward to working with them further in the future."
