Have just started my first go at rehab and am quite enjoying it and really nice to meet other sufferers of copd ,But i was rather shocked,Well i wasnt really to be asked by a lady who has suffered with copd for a few years what copd was .I myself had to google it and frighten myself to anxiety when i was told .It should be made a requirement that when you are diagnosed that you can make a followup appointment or even a group to be educated on this terrible affliction

19 Replies

  • Hi that is a strange question from someone who has suffered from COPD for a few years. I suppose it is up to the individual to find as much information as you can. If you don't as you are not told. Hope you told her about this site. And how helpful they are. Glad you enjoyed your PR. I am waiting to go on my 3rd course. Take care x

  • Oh, you just made me feel so much better! Your third course? I have badgered my GP and they agreed to a second course (last was 4 years ago) but I thought I might be taking the Michael a bit.

    My issue was that last time (first time) they threw so much at me and I had no idea what to expect that it was a sort of information overload - that's why I wanted to re-attend.

    Thank you, Nottobad, you made me feel so much better!

    Have a great Bank Holiday!

  • I'm still waiting for my first x

  • I was refered by my doctor last october and have only just started my rehab x

  • I've got a wait yet rusty thanks x

  • Hi y-not I am glad I have made you feel much better. But the only reason I am going on another course is because my COPD has got a lot worse. Hope you have a lovely Bank holiday. Take care x

  • Sorry to hear that - take care

  • you are lucky,i went for my second course walk tests and they found my heart beat was 125 and erratic,they refused me as it was/is to dangerousnow under the heart clinic for tachycardia thanks to copd and .bronchiectasis.thats life

  • The lady is a older lady so may not have internet ,I believe us inflicted with this condition have every right to be told by the medical profession what to expect and educate us on maintaining ourselves .I have found that when i have asked questions they are answered reluctantly and feel they have not enough time to go into discussion .I myself knew nothing of rehab until i got a new doctor ,I have waited since october last year to start the course  i enjoy it has i was stuck indoors with anxiety and depressed and felt so isolated it is nice to meet fellow sufferers ,I will mention about this site to her hope you hear soon about the course

  • Hi rusty I agree we should be told about our condition. As you say not everyone has access to the Internet. And it is good to meet other people with the same condition. Do you have a breathe easy group in your area you can join. I joined one last September. But the person who took it ended up in hospital. And they are starting it up again next month. I don't get out very much too only go out when I can go with my daughter. I am going on holiday next week with my daughter and I am looking forward to it. Take care X 

  • I get what you mean - diagnosed with the attitude of "Well, it's self-inflicted so get on with it" while some stories here are the exact opposite - one of those post code lottery things methinks

  • there should be a lot more information given when diagnosed , and some of the web sites do frighten people with false information , also there are still a lot of older people who don't have internet to find things out , I was lucky with my doctor as she did give me a bundle of leaflets and computer print offs , 

  • Seems to me that rehab sessions are a post code lottery. In my area, you are entitled to attend a course every year. The nurses running the course were urging everyone to ask their doctors to refer them every year as many places are going unfilled. My only complaint was that the information sessions were heavily weighted towards COPD. As I have IPF, I had to filter out everything that wasn't relevant to me. 

  • Hi as your attending your PR why don't you ask the respiratory nurse there to explain to the whole group what COPD is. That way you will get a proper explanation for the whole group. Take care x

  • Well i am on my second week and we have only had a respiratory in once so far to give a talk on inhalers ,so im hoping that this will come up in another session has a lot of the guys there are older and may not have the internet x

  • That's right they may not have. I have to say last time I did PR the respiratory nurse was there all the time so maybe the format has changed. But certainly ask questions so that you get as much info as possible x

  • Loving the rehab but am a bit let down by the education side of it ,It will be our third week and have only had  one class with a respiratory nurse hoping it will improve .We dont have a nurse there only the phsio guys who are great x

  • That's such a shame could you ask the physio guys when the respiratory nurse will be there as you have some questions regarding your condition, medication etc? Let us know how you get on. If the nurse doesn't come again how about how you write a list of everything you want to know and post it on here, I'm sure between us all we can give you answers. Take care x

  • This is excellent advice barbs, and the lady won't be embarrassed either as you will all be reminded together.

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