derby pulmonary fibrosis support group inaugural meeting
TRANSCRIPT
Derby Pulmonary Fibrosis Support Group
Inaugural meeting
Welcome
Meeting intent
• Inaugural meeting– Meet up– History and progress– Meet the BLF and BreathEasy– See the website– A chat…• Thoughts• Your ideas
Founder members
• Mandy
• Jo
• Graham – Treasurer
• Pat
• Jackie – Secretary
• Martin – acting Chair
Our history so far
• Diagnosis
• Health professionals
• Introduced to additional sufferers
• Contacted the BLF
• Picked a date
What are we trying to do?
Aims• Mutual support
• Sharing
• Information
• Entertaining, informative and life enhancing
What we aren’t
• Substitute for professional medical support
BLF and BreathEasy
Working together to provide support and hope for IPF
Ruth FlemingIPF Project Manager
© 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
© 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
© British Lung Foundation 2014
www.blf.org.uk
• World IPF Week• Support• Campaigning• Research• Plans for the future
& How you can help
Today
Joining together for World IPF
Week
© British Lung Foundation 2014
www.blf.org.uk
© British Lung Foundation 2014
www.blf.org.uk
© British Lung Foundation 2014
www.blf.org.uk
Help us raise awareness
Support & information
© British Lung Foundation 2014
www.blf.org.uk
IPF information pack
Order from www.blf.org.uk/ipf
© 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 incrediblehow things are changing.”
Joyc
e
© British Lung Foundation 2014
www.blf.org.uk
We also have a wide range of other materials
© 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
© British Lung Foundation 2014
www.blf.org.uk
Our Helpline
Campaigning
© British Lung Foundation 2014
www.blf.org.uk
© British Lung Foundation 2014
www.blf.org.uk
Building up political support
© 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
Research
© British Lung Foundation 2014
www.blf.org.uk
• We’ve given over £1.7 million towards ILD research
Funding IPF research
© British Lung Foundation 2014
www.blf.org.uk
• European Respiratory Society conference 2014
Spreading the word
Plans for the future
© 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!
© British Lung Foundation 2014
www.blf.org.uk
• Let me know how you would like to help or email [email protected]
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 awarene
ss locally,
fundraise
© British Lung Foundation 2014
www.blf.org.uk
What do you want us to do?
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
Quick look see
• DERBYPFSUPPORTGROUP.ORG.UK
• DPFSG facebook page
• Not ‘on-line’? All new news will be discussed
What next
• Future meeting structures– Guest speakers
– What’s new
• Help needed
• Next meetings– 6th November
– 4th December
• Fund raising