Transforming PF care starts here

An older man talks animatedly to a health care professional who has their back turned to the camera
April 2024

“Today’s launch is the first step towards improving PF care. We’re calling on leaders at all levels of health and social care to take action and implement this new ‘gold standard’ pathway built by the PF community.” Bradley Price, Director of Policy and Public Affairs

OneVoiceILD, supported by Action for Pulmonary Fibrosis, is delighted to launch a new vision for transforming pulmonary fibrosis (PF) care in England. This ground-breaking report, aimed at healthcare professionals and those who commission healthcare in the NHS, sets out recommendations for organising an optimum pathway for PF care.

We know diagnosis, treatment, care, and support for people with pulmonary fibrosis is a postcode lottery. We want to transform PF care to ensure that no matter where you live, you don’t face delays to diagnosis or difficulty in accessing treatment and support.

A ‘care pathway’ is the journey an individual takes through the healthcare system. In ‘I wish it was cancer’ , the largest post-COVID survey on experience of PF, our supporters told us that they faced significant barriers throughout this journey.

The optimum integrated care pathway is the culmination of a year of work by OneVoiceILD, a movement bringing together healthcare professionals, commissioners, charities, and people affected by pulmonary fibrosis.

It identifies and addresses system-wide challenges to make sure services meet the specific needs of people with PF and sets out a long-term vision for the future of PF care. Crucially, it aligns with the priorities of NHS England, something which is essential to realising solutions.

We’re calling on the NHS to implement the optimum care pathway for PF care. We hope that these changes will significantly improve the experience of people with PF, including:

  • Reducing delays to diagnosis, starting treatment, and accessing support.
  • Allowing for care and research to take place closer to home.
  • Laying the foundations for a timed pathway to diagnosis, bringing PF in line with cancer waiting times.
  • Improving the provision of support and care in the community.
“Despite some types of PF having survival levels worse than many common cancers, there is a postcode lottery for timely access to diagnosis, treatment, and care. This is neither fair nor unavoidable.”  
              Bradley Price, Director of Policy and Public Affairs

How long will it take?
This is a long-term vision for the changes we want to see. Some will be achieved in a year’s time, whilst other areas like recruiting and training new specialist medical professionals could take up to 10 years. However, we know that change needs to happen, and we need to rally together as a community and speak as OneVoice to make this happen.

How can I help?
We’re launching a Lived Experience Panel to keep the experience of those affected by PF at the heart of our efforts to improve the healthcare system. Could this be you?