Patient survey - IPF/ILD

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

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23 Replies

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  • 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

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

    Ben.

  • thanks for the prompt reply.

  • Just done the survey Ben xx

  • Thank you sassy59 :-)

  • Just completed. Hope it was submitted.

  • Thank you GeorginaS :-)

  • Done!

  • Thank you mary65

  • Done xxx

  • Thank you !!

  • Done and submitted.

  • Thank you!

  • Done

  • Thanks very much.

  • Survey done

  • Thank you!

  • 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.

  • Thank you for completing and for the information.

  • 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 !!

  • 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

  • I have just completed the survey.

  • Thanks Ian1369

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