British Lung Foundation

New quality standards for COPD care

Hi all,

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.

research.net/r/DRSYZHL

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

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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

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Hi Bethany

I started to complete but, the page crashed and now site appears to have gone offline.

Regards

Andy

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Ditto, I am unable to access the link at 16.06.

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oh did you break the site lol

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What me no never 😱😱

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Knowing my luck I will admit to it without the need for evidence LOL

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pmsl

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Sorry guys! It should be working now but let me know if you have any more problems.

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Can't get on site, very frustrating!!!'

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Can't access it - tried several times and even posted link into browser. No joy. As Happytochat says - very frustrating!!

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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.

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Thanks - all done now.

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Thank you!

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Only answer question 1 then it freezes everytime! Don't think I've got the patience for this unless you sort it, sorry

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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!

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Ok thanks. I'm quite willing to fill in the survey so hope it's up & running again tomorrow!

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page won't load

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I will complete survey on Pete's behalf if that is ok. xx

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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!

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Not loading at 16.51 so no go, sorry.

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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.

Thanks for letting me know!

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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!

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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

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Hi Cal2

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.

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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

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This is really helpful, thank you. I think you've made some very good points.

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Good thank you Bethany. x

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I completed the survey at 18:02 without any problems.

Bobby

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Bragger Bobby :D How are you chuck? Haven't seen you for a while? xx

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I'm still about but not as much as previously. It must be my age. lol

Bobby xx

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You will never be old Bobby - you are just backdated :D Hope you and yours are ok xx

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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!

The Witch

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Just done 830 pm it's working

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Yes I did it too at 9-20 - no probs. piggi

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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

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That's an interesting point Margaret. I'll make sure that gets discussed as well.

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Hello Bethany, your survey omitted a stage of COPD - very severe or stage 4 as it is also known was missing?

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Thanks for pointing that out Sirjames.

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Completed 8.07. The survey took only about 3 minutes and I didn't get a chance to express my views about my diagnosis and treatment.

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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.

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Filled in the survey this morning. Quick & easy to do! 👍

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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.

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just done it

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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.

Keep up the good work !

Dec

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Thanks Dec. It's as important to know where things are going well as knowing where they are going wrong.

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I have just done it

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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

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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.

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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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Whistler,my Fev1 is 20% and I had trouble get on PR course,it,s a post code lottery! D.

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That's terrible Farmer. Hope your pushing them. x

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Survey done. Better late than never. I've been too busy fishing.

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