1. Action for Pulmonary Fibrosis
News
Lorna McLauchlan
Support Group Co-Ordinator
Doncaster October 2018

2. Our Vision
A world in which everyone living with Pulmonary Fibrosis has a better future: Supporting Educating Researching Campaigning.

3. How are we supporting Patients?
Support groups
Support line
Education
VOPC
Research
Campaigning

4. Share Learn Friendship
Support Groups
Support groups are a gathering of people who share common experiences, situations, problems or conditions
Share
Learn
Friendship

5. 65 Support Groups in UK
Vision
To have a support group for every patient in the UK within an hour of their home

6. Support Line

7. Support Line Run by ILD nurses and patient ambassadors
Six month pilot phase with voic 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

8. 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

9. Educating Why didn’t my GP and nurse know more about pulmonary fibrosis?

10. Voice of the Patient Council
Listen to patient views
Patient survey
Guide our work
Inspire new developments

11. Mike Bray Research Fellowship
Mike Bray – Founding Chair and Inspiration
£300,000 for research
Cause
New treatment
Improve lives

12. Campaigning and Awareness
MP Stephen MacPartland (Stevenage)
MP Angela Raynor
(Ashton-Under Lyne)

13. 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

14. Campaigning and Awareness

15. 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

16. Supporting APF during IPF World Week

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

18. Our Amazing Fundraisers

19. 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.

20. Climb Every Mountain