August 05, 2026
We've written to the Prime Minister and the new health ministerial team to ensure PF and the experiences of people affected by it are part of the conversation from the outset.
Prime Minister Andy Burnham and the department for health and social care (DHSC) have committed to taking a new approach to providing NHS care in England – one that will better meet the needs of people locally. PF services would be an excellent place to start in providing care closer to home.
Our letter highlights the need for:
• Faster diagnosis – our 2026 PF State of the Nation report found that around half of survey participants waited over six months for a PF diagnosis.
• Fair access to specialist care – those affected have told us that the care they receive depends on where they live. This is caused by PF care being provided in just 24 specialist centres in England.
• Preparing the NHS for new treatments – if approved, nerandomilast could become the first new PF treatment available on the NHS in 10 years, offering a much-needed new option for eligible patients. The government must act now to ensure services are ready to provide it, and future treatments, without delay.
How we made the case for change:
We used data from our pilot project in Greater Manchester, where Andy Burnham served as mayor, as an example of how impactful care closer to home can be in practice. The OneVoiceILD care pathway, which APF designed in collaboration with lived experience experts and clinicians, has reduced waiting times and brought more PF care closer to home across the region.
We've also invited ministers to meet with us and hear directly from people affected by PF. We'll continue making the case for faster diagnosis, equitable access to treatment and better care, wherever people live.
What’s next for APF in Parliament?
We’re planning further engagement with MPs once parliament opens up again after summer recess.
Thanks to everyone who took part in the 2026 PF State of the Nation Survey, we now have a much clearer picture of experiences of PF care across the UK. For England, we’ve broken the findings down by region so that your representative can see what care is like for people in your area.
It’s not long until this year’s Pulmonary Fibrosis Awareness Month and there will be a range of ways you can help raise awareness with your local MP.
Keep an eye on our website for details on how you can take action for pulmonary fibrosis!
We have also been working with parliamentarians to improve PF care across the devolved nations.
The Scottish Government’s Centre for Sustainable Delivery have been developing their own new PF care pathway; APF has partnered with them to make sure lived experience is at the heart of new service plans.
We’ve also been working with the Welsh NHS Executive and Northern Ireland ILD Network to create nation-specific PF care pathways that fit existing systems and meet local needs.
Read more: The Future of ILD Care