The current set-up of PF care is not fit for purpose. Depending on where you live, there are huge variations in time to diagnosis, start of treatment, and quality and length of life.
This new optimum ILD Integrated Care pathway will 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.
OneVoiceILD's new Integrated Care Pathway has been developed by a community of people with wide-ranging expertise and experience in PF.
The Pathway provides guidance for all areas of PF care, from initial investigations right through the healthcare system.
By launching a new ILD Integrated Care Pathway, we're laying out a long-term vision for improving PF services in England. We are also working towards establishing similar guidelines specific to the devolved nations.
What will the pathway do?
Key Recommendations:
- Creating new specialist centres will increase resources in PF care, meaning shorter waits and more care delivered closer to home.
- A more holistic approach to support will clearly lay out local care and aid services in ensuring everyone is offered what they deserve.
- Faster diagnosis through fast-tracked testing, with direct referral to specialist centres, reducing the long waits to starting treatment.
- Creating a timed pathway from referral to diagnosis and treatment, holding PF to the same standards as cancer care.
How are OneVoiceILD going to support this?
APF's role in the Care Pathway:
- Work with the NHS to drive change at the heart of ILD services.
- Support hospitals to improve the capacity in ILD services.
- Work with the OneVoiceILD lived experience panel to put the experiences of people affected by PF at the heart of these changes.
- Work with local PF communities to map how this pathway can be adapted in Scotland, Wales, and Northern Ireland
If you have been impacted by PF and would like to find out how to have your voice heard, visit the Share Your Experience page.
For any further questions, please email ovild@actionpf.org