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Transforming ILD Services
Influencing in Action
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Our influencing work is putting the 'Action' in 'Action for Pulmonary Fibrosis'. We understand just how urgently change is needed for PF care in the UK.
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We're dedicated to working alongside all members of the PF community to shape and inform decision-making that impacts you.
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NHS Pathway Collaborators
If you haven’t already read about our Integrated Care Pathway for ILD services, which will transform the future of PF care, please find further information here.
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Developing a fit-for-purpose ILD service could not have been possible without the input of a lived experience panel. Likewise, transforming services will require close collaboration with those providing care.
We’re already working with healthcare professionals across England to pilot the pathway and improve ILD services. APF's involvement will ensure that lived experience stays at the heard of all changes.
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We’re attending regular meetings with ILD networks across these regions to help shape and inform decision-making, ensuring the lived experience and patient needs are at the heart of future services.
Keep an eye on our News pages for updates and activities from these services!
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APF In Parliament
One of the most heard concerns we hear from members of the PF community is that they, their healthcare provider, and/or those close to them had never heard of PF before their diagnosis.
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Awareness of PF in the UK is low, so last year (November 2023) we made the first move to put PF on the parliamentary agenda.
Thanks to our supporters, every MP in parliament received an email invite to attend our event, putting our cause directly into each MP’s inbox!
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34 MPs attended the event to learn more about PF and how they can help to shape change.
Read our news piece of the event here
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APF and COVID-19
The COVID-19 pandemic had a huge impact on the lives and care of those with PF. Public health protections were put in place for many groups with conditions that made them especially vulnerable to COVID-19 infection, but PF was not one of them.
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Our support lines overflowed with calls from those who were intensely concerned for the future of their treatment and potential access to transplant surgery but didn’t feel seen or heard by the Government.
We used our platform to highlight the urgent health needs of those with PF, and in May 2020 provided written evidence to the Health and Social Care committee in Parliament, outlining the impact of COVID-19 on addressing these needs.
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Access to Antifibrotics Campaign
One of the biggest developments for PF treatment was has been the approval of antifibrotic drugs. However, initial guidelines were so restricted that most patients were not able to access the life-lengthening treatment.
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Pirfenadone and Nintedanib can slow the progression of lung fibrosis. Both were approved as a PF treatment in 2022, following 5 years of campaigning by APF, but was only available for patients whose lung function had declined below 80%.
This approach, forcing patients to wait until their condition had worsened before they could access treatment, is not one that would ever be seen for cancers or other life-limiting conditions. Recognising this inequality, APF set out to make change.
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We worked together with clinicians and patients to urge decision-makers to fast-track the guideline review to allow more people with PF to access life-lengthening antifibrotic treatment sooner. We worked together with clinicians and patients to urge decision-makers to fast-track the guideline review to allow more people with PF to access life-lengthening antifibrotic treatment sooner.
Read more about our work to widen antifibrotic access here
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Not found what you were looking for?
Get in touch with the team at policy@actionpf.org.
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