Action for Pulmonary Fibrosis

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Presentation transcript:

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

Share Learn Friendship 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

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

Educating Why 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 Stephen MacPartland (Stevenage) MP Angela Raynor (Ashton-Under Lyne)

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 and Awareness

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

Supporting APF during IPF World Week

The Stars come out for APF! Gok Wan and West End star Becky Herszenhorn

Our Amazing Fundraisers

What have we all achieved? 2010 NO Local support groups NICE IPF Recommendations Positive Clinical Trials Approved therapies Specialist networks 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.

Climb Every Mountain