People with lived experience of PF at the heart of survey set to influence change

Image shows front cover of the report with the text "Report now published"
7
December 2023

Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?

Today (7 December) we're delighted to launch the results of our survey ‘I wish it was cancer’ which puts the spotlight on the devastating impact of PF on all aspects of life. The title reflects what many people told us - they would have felt better understood, supported and less alone if they'd been diagnosed with cancer.

We are incredibly grateful to people from across the UK who completed our survey and participated in focus groups held in every NHS region. This gives us a strong piece of evidence to drive vital change in PF care.  

In parts, this report is a tough read, reflecting the heartrending stories people shared around diagnosis, management and access to care. 

We are determined that the voices of people living with pulmonary fibrosis will be heard and acted on.

Read the report

The findings from the survey, focus groups and interviews have already been used to form the fundamentals of a new national integrated care pathway, as well as an animation highlighting how well-organised, well-resourced care can make all the difference.

Working together with people living with PF, healthcare professionals and commissioners who make decisions on how care is funded and organised, we can make a real difference. We won’t stop until we do.