Action for Pulmonary Fibrosis News Lorna McLauchlan Support Group Co-Ordinator Doncaster October 2018
Our Vision A world in which everyone living with Pulmonary Fibrosis has a better future: Supporting Educating Researching Campaigning.
How are we supporting Patients? Support groups Support line Education VOPC Research Campaigning
Support Groups Support groups are a gathering of people who share common experiences, situations, problems or conditions Share Learn Friendship
65 Support Groups in UK Vision To have a support group for every patient in the UK within an hour of their home
Support Line • Run by ILD nurses and patient ambassadors • Six month pilot phase with voicemail messages and call back • If sufficient demand will staff phones 6 hours/day, 6 days a week • Not an urgent or emergency medical helpline but can give advice on a range of topics affecting patients and carers
Education • In partnership with ILD INN • Developed education sessions for nurses • 500 participants so far • Drug Leaflets (Pirfenidone and Nintedanib) • Professional and patient information leaflets • Website information
EducatingWhy didn’t my GP and nurse know more about pulmonary fibrosis?
Voice of the Patient Council Listen to patient views Patient survey Guide our work Inspire new developments
Mike Bray Research Fellowship Mike Bray – Founding Chair and Inspiration £300,000 for research Cause New treatment Improve lives
Campaigning and Awareness MP Angela Raynor (Ashton-Under Lyne) MP Stephen MacPartland (Stevenage)
Awareness and Campaigning • MPs and government • Radio • Newspapers • Community events • Conferences • Social events • Partnership working (BTS, Pharma, EU-IPFF, ILD INN, other charities) • IPF week
Campaigning for……. • Campaigning for …… • Implementation of NICE guidelines/Quality Standards • A registry of all patients diagnosed with IPF • Anti-fibrotic drugs 80% rule • Through……. • NHS senior management • UK Parliament All-Party Groups on Respiratory Health and Rare Diseases • Scottish Parliament Cross-Party Group on Lung Health • European IPF Federation (13+ countries) and European Parliament
What have we all achieved? 2018 YES • 65 PF Support Groups • NICE IPF Guidelines/Quality Standards • Pirfenidone + Nintedanib • PR and oxygen therapies • Specialist centres + MDTs • Action for Pulmonary Fibrosis • PFT + BLF Priority Area. 2010 NO • Local support groups • NICE IPF Recommendations • Positive Clinical Trials • Approved therapies • Specialist networks