Idiopathic pulmonary fibrosis (IPF) can have a huge impact on the lives of people living with the disease. Ron has experienced this first hand since being diagnosed with IPF in April 2014, at the age of 54.
In 2015, Action for Pulmonary Fibrosis (APF), supported by Roche, launched the most comprehensive national study undertaken to date into the effectiveness and reach of the NICE Quality Standard for idiopathic pulmonary fibrosis (IPF) . 312 IPF patients and 18 hospitals took part in the study.
The NICE Quality Standard for idiopathic pulmonary fibrosis (IPF) advises that everyone with IPF should attend a pulmonary rehabilitation programme tailored to their specific condition to help them live more actively with a better quality of life.
The NICE Quality Standard for idiopathic pulmonary fibrosis (IPF) advises that all people with IPF should receive the information they need about treatments, with a specialist nurse available to provide them with ongoing advice and support.
Coordination of care throughout the patient journey
Action for Pulmonary Fibrosis (APF) is calling for designated specialist centres to improve the integration and coordination of care for people with idiopathic pulmonary fibrosis (IPF). Its report highlighted that more can be done to facilitate better care coordination across a range of care settings.
Dr Helen Parfrey is a respiratory physician and leads the Cambridge Interstitial Lung Disease Service.
Dr Parfrey is also a trustee for the charity Action for Pulmonary Fibrosis. The charity supports people with idiopathic pulmonary fibrosis (IPF), their families and carers, and works to raise awareness of IPF.