What do you think about the new quality standards for IPF?

[BethanyBateman]

Hi all,

You may be aware that guidance about different treatments and the standards of care that people should receive are set by the National Institute for Health and Care Excellence (NICE). They are now working on a new quality standard for idiopathic pulmonary fibrosis (IPF), which will recommend what services and treatments should be in place for people with IPF.

These recommendations are in the draft stage and they have asked the BLF to let them know what we think about them – but we don’t want to do that until we have had feedback from people living with IPF.

So if you have IPF or know someone who does, we would like to give you the chance to have a look at the quality standard and let us know what you think. It shouldn’t take more than 5-10 minutes and there is plenty of space for you to write comments.

You can find more details of by going to blf.org.uk/Page/NICE-qualit...

I hope you’ll agree that this is a great chance to contribute to a really important piece of work.

Thank you so much for your help with this.

Best wishes,

Bethany

[stella08]

For some reason this link is showing application error and I cant open it. Any hints?

[BethanyBateman in reply to stella08]

Sorry about that Stella. It should be fixed now but let me know if you're still having any problems.

Thanks for letting me know!

[Hidden]

I have completed the survey and hope that many of the 'suggestion' are implemented.

[BethanyBateman in reply to Hidden]

Thanks Scribe.

[simeon]

It is all very well for NICE to come up with this but who exactly is going to provide these much needed services? Despite changes in name and staff these services have never worked and never will until they are realistically staffed. The nurses and others are really good and so helpful and want so much to do it right, but sooo... overworked.

[Hidden]

The link is broken.