How can healthcare services turnaround pulmonary fibrosis care?

Opening slide of the animation with the text "Optimising pulmonary fibrosis care - Mohammed's story"
17
July 2023

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

Even my consultant doctor didn’t know much about pulmonary fibrosis. I feel forgotten and of no importance.
- pulmonary fibrosis patient


We know not everyone with pulmonary fibrosis has timely access to the NHS treatments, care and support they need to live longer.  

We want to change this. 

Produced by APF, this new animation for healthcare professionals and NHS commissioners shows Mohammed, 68 years, on two very different journeys with pulmonary fibrosis. It demonstrates the life-changing impact when he’s on the right care pathway and the devastating effects when he isn't.

Watch our new animation:

 

Pulmonary fibrosis is on the rise yet many have never heard of it. It’s a devastating and life-limiting disease affecting over 70,000 people in the UK. The need for earlier diagnosis and a clear and consistent care pathway is urgent.

Currently, pulmonary fibrosis care is a postcode lottery. Depending on where you live, there may be significant delays in getting an accurate diagnosis and being referred to a specialist pulmonary fibrosis centre.

We’re bringing together people affected by pulmonary fibrosis, healthcare professionals and NHS decision makers to create a new, national NHS integrated care pathway. This pathway will set the gold standard in care. It will help clinicians and people with PF know what to expect from PF care and when to expect it.  

We’re addressing the issues that people with PF are most worried about and finding solutions to these problems. 

This animation highlights many of the issues we hear from our community of people living with pulmonary fibrosis about the delays to their diagnosis and how it affected their future treatment options. Through our new national pathway, co-produced with medical professionals and those affected by pulmonary fibrosis, we hope to give everyone with possible PF the best chance of being diagnosed and getting access to treatment as quickly as possible.
- Bradley Price, Head of Policy and Public Affairs


If you are a commissioner or healthcare professionals who want to join us in this critically important piece of work please sign up to join us by emailing OVILD@actionpf.org.