Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
APF wrote to Matt Hancock, Secretary of State for Health and Social Care, on 26th May to ask his help in ensuring timely access to PFT testing for IPF patients so as to commence antifibrotic drugs. We would like to thank colleagues at NHSE for introducing this change so quickly.
Every year, about 2500 people are diagnosed with IPF or suspected IPF when their lung function (FVC) is still over 80%. Under NICE rules, these patients need regular PFT tests so that they can be prescribed with antifibrotics (nintedanib or pirfenidone) once their lung function drops to 80%.
PFT facilities have been closed in all hospitals since March because of COVID-19. They are now starting to reopen but only at about 35% of previous capacity. This is because the PFT rooms used need to be disinfected and ventilated between patients. This means that PFT testing is under great pressure.
The new rule should mean that:
- all IPF patients with an FVC over 80% should be given regular lung function tests (every 6 months or 3 months, if their disease is progressing rapidly);
- PFT tests may be done at specialist centres or district general hospitals. Many patients at general hospitals have not yet been referred to a specialist centre;
- consultants will be able to request quick access to PFTs, with patients being seen within 2-4 weeks.
Hopefully, this will ensure that all such IPF patients will commence antifibrotics on time and will not be delayed.
Action for Pulmonary Fibrosis is keen to support this change and would like to involve patients in monitoring how the new scheme is operating. If it does not work well, NHSE has agreed to look again at other options to ensure IPF patients have access to antifibrotics.
Would you like to help APF monitor the new scheme?
If you would and you have been diagnosed with IPF or suspected IPF and had an FVC over 80% at your last PFT test please contact me at the following address:
Please give your name and phone number and I will get back to you. We need to move quickly.
We would like to be able to make a preliminary assessment of how the scheme is working by end July.
This note will be revised as more information becomes available.
Chair of Trustees
22 June 2020