The National Institute for Care and Excellence (NICE), a national health care body that works alongside the NHS in England and Wales, is producing a new set of Quality Standards for COPD. These are a set of statements designed to help healthcare professionals improve COPD care.
They've asked us to let them know what we think of their recommendations but we don't think it’s right to do that without getting some feedback from people living with COPD first.
We've put together a short survey asking you about your experiences of living with COPD and the care you've received. This will help us to assess whether their recommendations are looking at the right issues.
I would really appreciate it if you could take 10 minutes (it will probably take less) to fill in this survey and let me know what you think. We will close the survey at 10am on Monday the 17th so that we've got time to look at all of your responses properly before we go back to NICE.
Many thanks,
Bethany
Written by
BethanyBateman
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53 Replies
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Hi Bethney thanks for asking .. Yes i have just completed survay
And yup i have quite a lot to say on rotten lung diease.
Nice is to NICE given my own issues chronic lung diease i would like to see things like copd and antibiotic resistance issues highlighted also Sepsis as that is real risk and vitamin defiancy discused.
The trouble i had trying to get my GP Lung Docs take all my associated symtoms as been horrendous to the pont a nurolagest had to tell them
following ammuty test where my heamoglomen was low and vitamine D had vanashed
I'm so sorry, I think there's a problem with the website that hosts the survey. If it's not up and running in the morning then I'll set up a new survey on a different site.
There seems to be a problem with the website that hosts the survey but I'm hopeful that it'll be up and running by morning. If not then I'll set up a new survey. Sorry it's been such a pain!
Hi Sassy, it looks like the website is down at the moment but hopefully it will be up and running by morning. If not then I'll let you all have a new link. Thank you so much for trying to fill it in on Pete's behalf!
I'm terribly sorry guys, there seems to be a problem with the website that hosts the survey. Hopefully it will be working by the morning but if not then I will set it up on a different website so you can access it.
Hi all, the survey appears to be back up and running now. Fingers crossed you'll have no problems completing it but if you do, let me know and I'll check it out in the morning.
Thanks for being so patient, and I'm looking forward getting all of your feedback!
I have just done it and it is fine now. I think one of the major problems is the difficulty in getting quick doctors appointments. Another one is doctors very casual attitude about it especially in the milder stages.
Another thing I have found is that if someone has been or is a smoker then they automatically diagnose copd without looking for anything else that could be wrong as well as or instead of. The current NICE guidelines actually encourage this! My surgery refuses to let me see a consultant and only refer when they can't offer enough care. By that time if there is something else wrong it remains untreated and impacts severely on your health.
I would like to see (as with heart problems and cancer) immediate referral to a consultant for a diagnosis and treatment rather than just relying on a doctor or even a nurse. They could just do the day to day care. x
I had a totally different experience with my GP. Standard procedure put me on asthma inhaler - no difference. Ended up in A & E many times (low O2) before THEY suggested I ask for my GP to refer me to consultant. Then consultant diagnosed Severe COPD out of the blue saying 'no wonder asthma inhalers didn't work because I was so severe'. But now I am diagnosed and treated. I am happy to stay with the GP.
Soon changing GPs so wonder what is install for me???
But I now have the knowledge from this site to respond appropriately to my new GP practice.
That's terrible SK, and proves my point that lung problems aren't taken as seriously as other health problems! How your GP could miss that is unbelieveable. xx
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To sum up what I am saying Bethany -
1. The current NICE guidelines state 'That if someone is over 35 and has been or is a current smoker then a diagnosis of COPD should be considered'. I think what should be added is 'Do not assume it is copd or just copd as other things should be taken into account as well'.
2. The current NICE guidelines state 'A diagnosis of COPD can be made by a nurse or a GP' I think a consultant only (or his/her team) should be able to diagnose COPD or any possible lung disease. Everyone with a lung disease should be referred to a consultant first.
3. A chest x-ray should be done and also a CAT scan to rule out other diagnosis. x
Survey completed, I've just joined a new practice & so far the care is no-where near as good as my last Dr's so I hope that they can set a gold standard care package for every practice!
Survey completed. I have an issue about mild, moderate or severe COPD, i have answered severe but currently I am moderate. i have learned fev1 is far from static and can progess upward or downward. Margaret
Thanks for completing the survey. The information it is gathering is a helpful way of us analyzing data from a lot of people, so we've deliberately kept it simple so more people can fill it in. If you have views on these issues that you would like to share in detail, please feel free to do so here as others have done, or message me if it's more personal, and i'll make sure it gets considered both in our response to NICE.
Filled in the survey this morning. Quick & easy to do! 👍
With the number of people on here who have apparently associated acid reflux and Rhinitis/Sinusitis/PND, I hope they remember to express it as a primary concern.
Just back from 9th PR course attendance and filled it in. Difficult to say anything informative about situation on Isle of Wight, as the average age demographic has ensured that there is a strong understanding of COPD by the GPs and a special Pulmonary Division, staffed by very good, caring people at the main hospital.
I hoped there would be a comment space. I wanted to say PR should be available to all not just the most seriously ill. My GP refused me PR because Im "not sick enough "at 58% fev1
Whistler,my fev1 is 20% and I had trouble getting on a PR course even though it was to improve my health so I could go on transplant list.It,s a post code lottery! D.
I'm sorry you're having trouble getting access to PR but thank you for sharing your situation on here. The survey will be great for analyzing lots of figures but everyone's comments will also be discussed and will help inform our response to NICE.
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