Good morning everyone.
I have added a link to our survey "Our life with a lung condition"
We would really appreciate your help.
If you could spare 10-15 minutes to complete the survey, the results will help inform our work on a number of issues including your views on pollution and care you receive, and how having a lung condition affects your life.
asthmalunguk.typeform.com/l...
Thank you in advance
Debs
Started survey but then discovered that it was focusing on asthma and not other lung diseases.
Thank you for bringing this survey to the forum. I have just completed it. It's emphasis on asthma was depressing (even though I have this condition) as it confirmed the feelings of many of us when the charities amalgamated, that asthma was being prioritised. This is evident through the new name - asthma is only one of many lung conditions but all the others seem to be downgraded to being just - unnamed lung conditions.
You do return further on in the survey to saying "your lung condition(s)". However the questions are confusing as they are unclear: for instance you say "when were you diagnosed" and there is space for numbers (the year, or your age) but to take myself as an example, I was diagnosed with asthma at age 24, and copd at 55. The survey does not cater for distinguishing as it will not take letters, only numbers.
The cost of living question does not have an option to say that I could afford utilities/food etc and still can but now it's a struggle. You can afford it or you cant, nothing in between.
There were many questions like this - insufficient options. Take the stigma question: either yes you do experience it, or no you dont (if Im remembering right). There is no option to say sometimes or occasionally. Im not going to tick yes as it is too blanket an answer when I hardly ever experience it, just now and again, but answering 'no' wouldn't reflect my reality. In the part about how your lung condition limits/affects your life, I don't recall there being a question about whether your socialising is affected which I would have clicked on. (If Ive misremembered this one, then apologies.)
I dont want to be negative - obviously a survey like this can be educative and awareness-raising. But the questions are badly put together imo. I nearly stopped midway in frustration. A lot more nuance is needed, or just an option to write something at the end of each question if the options for answering that question don't satisfactorily cover your circumstances.
If you're still here, thanks for reading!
I remember filling in a survey years ago to aid the structure of the NHS '' 5 year plan to improve care for those with lung conditions'' What happened to this plan and the survey that many people participated in?
Lung health care is as bad, if not worse than it has ever been.
Sorry but I will not participate in what is clearly nothing more than a tick box exercise.
Apologies but went on too long too many questions I think irrelevant . Gave up.😱
Did the survey,was a bit longwinded and was all about asthma filled in my other conditions but not much focus on all conditions really and unsure what relevance was for home I live and income questions point was needed for.
Sounds as if the survey is really only interested in asthma, so little point in the rest of us bothering with it? Sadly, that reflects the whole attitude since the takeover.
Debs, it would be nice to hear from you in relation to our comments!
it wasn't possible to give an accurate view of my condition. No room for ifs and buts, or explaining why the options didn't quite fit.
The other replies have made me decide not to take part. Please improve the design of the survey first.
PLEASE Debs would you respond to the comments here. Hiding away because they are critical really isnt satisfactory or professional. It is clear that the feelings many of us have had since the amalgamation are reflected in how this survey has been constructed, and you really do need to address it. Thanks, jean
We never did get a response, did we? ☹️
Nah! They dont want their boat rocking . . .
I filled in the questionnaire responses happily because I am grateful for Asthma&Lung UK’s support and the work they do for free for those who can benefit from it.
As others have said, the emphasis appears to be on Asthma but from the earliest question on your lung condition - Yes, No, Other - (and which I missed and couldn’t go back to!) you were able to say what condition you actually have, having clicked ‘Other’. Perhaps a ‘Back’ button at that stage would have been helpful?
It is fiendishly difficult to craft a questionnaire that fits absolutely every responder’s situation, condition and disease progress. We have just to roll with it sometimes. Well done ALUK.
Eating well with a lung condition
Looking after someone with a lung condition
