January 16, 2025
Why should you contact your MP?
As your representatives, MPs have a duty to ensure they address the issues you bring to them, whether you voted for them or not. We are holding a ‘drop-in’ event in Parliament, where MPs can come and talk to us about how to improve PF care in your area. We urge you to take a moment to email your local MP and ask them to attend the event.
We've written an Early Day Motion (EDM) that calls on the government to commit to working with the NHS and OneVoiceILD to implement the optimum care pathway we published last year. By signing the EDM, your MP will be showing their support for those whose lives are affected by PF.
Why is this important?
Approximately 20,000 people are diagnosed with an interstitial lung disease (ILD) each year in the UK – this is much higher than previously thought and is expected to continue rising. Feedback from our Lived Experience Survey confirmed that PF services are already failing to meet the needs of those affected. Access to treatment is a postcode lottery, leaving many without the care they urgently require. This cannot go on any longer.
Recent research has also revealed that people with PF living further from hospital or in socially deprived areas face significantly worse survival rates than others with PF. This underlines the urgent need to address inequalities in healthcare access. We believe everyone affected by PF deserves timely, high-quality, and equitable care, regardless of where they live. Change must start now to make this a reality.
Why is now the right time for this?
Respiratory teams are already struggling with the overwhelming demand, and the situation will only worsen. The urgent need for improvement is felt by both those seeking PF care, and those providing it. An opportunity for change is coming soon, as responsibility for the planning of PF services is changing hands in April. With the help of your MP, we can work with the new decision-makers to make the changes we recommended in 2023 report and improve the PF services in your area.
We encourage you to email your MP, letting them know that improving PF care is an important issue that requires immediate attention and action.