1. Derby Pulmonary Fibrosis Support Group Inaugural meeting

2. Agenda 14:00 – 14:10Welcome/ key messages What is the DPFSGMartin Introductions 14:10 – 14:15What we aren’tJo and Mandy 14:15 – 14:20Meeting intentMartin 14:20 – 14:45BLFRuth Breath Easy – Derby Jackie (?) Q&A 14:45 – 15:00Quick look seeMartin Website/ FaceBook page 15:00 – endHelp neededMartin Next meeting/s Q&A Chat

3. Welcome

4. Meeting intent Inaugural meeting – Meet up – History and progress – Meet the BLF and BreathEasy – See the website – A chat… Thoughts Your ideas

5. Founder members Mandy Jo Graham – Treasurer Pat Jackie – Secretary Martin – acting Chair

6. Our history so far Diagnosis Health professionals Introduced to additional sufferers Contacted the BLF Picked a date

7. What are we trying to do? Aims Mutual support Sharing Information Entertaining, informative and life enhancing

8. What we aren’t Substitute for professional medical support

9. BLF and BreathEasy

10. Working together to provide support and hope for IPF Ruth Fleming IPF Project Manager

11. © British Lung Foundation 2014 www.blf.org.uk Founded in 1985 Cover all the UK What we do Support Campaign Research & Work with you Who we are

12. © British Lung Foundation 2014 www.blf.org.uk Our charter We want to: Make sure you have information and support you need Influence the NHS and government to improve services

13. © British Lung Foundation 2014 www.blf.org.uk World IPF Week Support Campaigning Research Plans for the future & How you can help Today

14. Joining together for World IPF Week

15. © British Lung Foundation 2014 www.blf.org.uk

16. © British Lung Foundation 2014 www.blf.org.uk

17. © British Lung Foundation 2014 www.blf.org.uk Help us raise awareness

18. Support & information

19. © British Lung Foundation 2014 www.blf.org.uk IPF information pack Order from www.blf.org.uk/ipf

20. © British Lung Foundation 2014 www.blf.org.uk “ Thank you so much for putting together the IPF information pack. When I was first diagnosed I didn’t know what to do or where to go for help. It’s incredible how things are changing.” Joyce

21. © British Lung Foundation 2014 www.blf.org.uk We also have a wide range of other materials

22. © British Lung Foundation 2014 www.blf.org.uk IPF health information Research People’s stories And much more www.blf.org.uk/ipf IPF web hub

23. © British Lung Foundation 2014 www.blf.org.uk Our Helpline

24. Campaigning

25. © British Lung Foundation 2014 www.blf.org.uk

26. © British Lung Foundation 2014 www.blf.org.uk Building up political support

27. © British Lung Foundation 2014 www.blf.org.uk Survey to find out in-detail about your experiences What you say will go into our policy report We will use this to campaign for better services Please help us by completing the survey www.blf.org.uk/ipf New today

28. Research

29. © British Lung Foundation 2014 www.blf.org.uk We’ve given over £1.7 million towards ILD research Funding IPF research

30. © British Lung Foundation 2014 www.blf.org.uk European Respiratory Society conference 2014 Spreading the word

31. Plans for the future

32. © British Lung Foundation 2014 www.blf.org.uk Set-up more support groups Raise health care professional awareness Lobby parliament Fund even more research Get our newsletter We’ve got a lot more planned!

33. © British Lung Foundation 2014 www.blf.org.uk Let me know how you would like to help or email patientvoice@blf.org.ukpatientvoice@blf.org.uk How can you help us Help us produce information for people with IPF Help us at an event Tell us your story Join your support group committee Raise awareness locally, fundraise

34. © British Lung Foundation 2014 www.blf.org.uk What do you want us to do?

35. Progress and our initial ideas Website Facebook page Bank account Initial thoughts on likely presenters – Topics inc. life coaching, drugs, benefits of oxygen Resource research - links

36. Quick look see DERBYPFSUPPORTGROUP.ORG.UK DPFSG facebook page Not ‘on-line’? All new news will be discussed

37. What next Future meeting structures – Guest speakers – What’s new Help needed Next meetings – 6 th November – 4 th December Fund raising

38. Derby PF Support Group meeting Turn right Past the snooker table Large room straight ahead