Patient survey - IPF/ILD : Hi all, IPF... - Lung Conditions C...

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Patient survey - IPF/ILD

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Hi all,

IPF Week is coming up in just under two weeks (16-24 September), and as always we’ll be spending the week raising awareness of IPF and all lung diseases in the media.

This year we’ll be making big calls for better access to treatment and care. We know that getting access to a diagnosis, treatment, services and support can be difficult, and want to raise awareness about just how big this problem is.

So we’ve put together this very short survey on access to treatment.

surveymonkey.co.uk/r/6M5KGRN

Please do fill it out if you’ve got a spare minute, particularly if you have an interstitial lung disease, but we’d be really happy to hear from everyone affected by other conditions as well.

Thanks as always for your help with this!

Best wishes,

Ben

BLF Admin

23 Replies

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skischool8 years ago

Can i answer this survey on behalf of my dear wife Cecilia who passed away in january.she had ipf and i would like to input her experiences with treatment offered.regards

• in reply toskischool8 years ago

Hi skischool yes please, your responses about your and Cecilia's experiences will be invaluable. Thank you in advance.

Ben.

skischool• in reply to8 years ago

thanks for the prompt reply.

sassy598 years ago

Just done the survey Ben xx

• in reply tosassy598 years ago

Thank you sassy59

GeorginaS8 years ago

Just completed. Hope it was submitted.

• in reply toGeorginaS8 years ago

Thank you GeorginaS

mary658 years ago

Done!

• in reply tomary658 years ago

Thank you mary65

pegbl8 years ago

Done xxx

• in reply topegbl8 years ago

Thank you !!

Ergendl8 years ago

Done and submitted.

• in reply toErgendl8 years ago

Thank you!

winfar8 years ago

Done

• in reply towinfar8 years ago

Thanks very much.

LoncinLad8 years ago

Survey done

• in reply toLoncinLad8 years ago

Thank you!

Gayfere8 years ago

Survey completed but I couldn't answer the question about a lung transplant. Yes it has been discussed with me but my consultant is doing more tests, taking advice from colleagues etc etc before looking to see if I am eligible. Hence none of the options were viable in my case.

• in reply toGayfere8 years ago

Thank you for completing and for the information.

Salmo8 years ago

Very dissapointed with the survey.

I have answered yes to being on pirfenidone, on oxygen, having been refered for a lung transplant and having been on pulomnary rehab. My answers will make it appear as if the treatment I have received is great but behind that its a very different story. It took nearly 2 years of pushing to get started on Pirfenidone despite a clear diagnosis of IPF and my lung function (FVC and DLCO) falling 10% a year. I had to embarass my doctors into providing ambulatory oxygen by buying my own oximeter and showing them that my O2 sats fell to 80 on mild exertion and I started the request to be on the lung transplant list over a year ago and am still waiting to hear from a transplant centre. I would not put this down to doctor incompetence - indeed the ones treating me have mostly been good but grossly over-worked. Rather it's down to being in the wrong postcode with no permanent ILD consultant and being seen by a new locum every 3-6 months with nobody staying long enough to follow up on anything during the first year and half of my disease.

The survey could really do with a section at the end to qualify answers and get the true picture across !!

• in reply toSalmo8 years ago

Hi Salmo - thanks for the feedback on the survey, I'm sorry that you found it was disappointing. I've passed your comments onto our team.

I've also passed your on your comments above about your experiences so thank you very much for taking the time to let us know.

Best wishes,

Ben

BLF Admin