Speaking out on IPF in parliament - Lung Conditions C...

Lung Conditions Community Forum

55,236 members66,012 posts

Speaking out on IPF in parliament

kevinrobinson profile image
3 Replies

Recently, we held an event in parliament to raise awareness of IPF among MPs and parliamentarians.

Ron Flewett has IPF and he came along to talk to MPs about the condition. He's now told his story of the day on our blog. It's a really interesting read - check it out and let me know what you think!

blog.blf.org.uk/2014/07/spe...

Written by
kevinrobinson profile image
kevinrobinson
To view profiles and participate in discussions please or .
3 Replies
jenss profile image
jenss

Well done! And thank you very much to Ron and others for helping to raise much needed awareness of this horrible devastating disease!

DozyDormouse profile image
DozyDormouse

Thank you and well done. Just wish I could be included in getting the word out and showing the progression. On oxy 24/7. Dozy :)

RFPM profile image
RFPM in reply to DozyDormouse

Hi Dozy, if you would like to help there may be a few ways that you can get involved from home. You can write to your MP and tell him about IPF, we can send you a template letter. Also if you like, you can tell us your experiences over the phone as we always need people's stories for our website and sometimes for journalists. If you are interested in either of these then please let me know. You can contact me through patientvoice@blf.org.uk. Thanks, Ruth (IPF project manager at the BLF)

You may also like...

Dad recently diagnosed with IPF

Hi, my dad has recently been diagnosed with IPF after a bout of pneumonia. He's now home on oxygen...

Any carers out there? Feeling overwhelmed.

suffer from IPF. My husband was diagnosed in late 2017 and despite meds, his condition has...

IPF or idiopathic ILD?

situation? If ILD is idiopathic is it not therefore IPF? I'm conscious there can be serious...

Morrison recovering from night out.

Nebulising etc. He choices where wants to lie, I’m his butler x

IS HE GOING TO SLIDE OUT OF THIS ONE?!

but put it down to breathlessness due my lung condition and 'elderly patients under sedation tend...