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I got an online link to my doctors surgery and put a review in.  I mentioned several things over the years such as being diagnosed with copd by a nurse and not a dr.   Also being turned down for an x-ray several times after my diagnosis (contrary to the NICE guidelines), 

I also said that even though I had repeatedly asked whether I had primarily emphysema or chronic bronchitis they consistenly refuse to tell me.   Even though the treatment is the same,  certainly in the earlier stages,  they are a bit different and I want to know which I have.   All they do is say I don't need to know and just keep insisting it is copd.

Anyway the day after I posted this I got an email from the practise manager showing concern and asking me to ring her to discuss this.  

It does pay to complain doesn't it?  Bev x

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  • Posted

    Yes it does help to open your mouth and if not demand, ask for answers.  If you

    do not do that, nothing is going to happen.  Someone told me that years ago,

    open up your mouth and ask for what you want, otherwise, nothing is going to

    transpire.  x

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    • Posted

      Thanks terri.  I have asked and finally demanded answers a few times but all that happens is that the medic gets annoyed.  The nurses do and the doctors do too.   I don't think they know and care even less.  x
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  • Posted

    Hi you know that is what happend to me diognosed by a nurse , now I'm on inhalers and cannot do without them I wonder if I do have it, I asked what my stage is nurse could not answer only saying we don't di it in stages it's either moderate or severe I get so mad every time I go for a check up 
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    • Posted

      That's terrible shirley!   And it's wrong anyway as there are more than 2 stages - there is mild,  moderate,  severe,  very severe. 

      You should be diagnosed by a doctor and you need to insist on knowing your lung function via FEV1 and FVC and the stage you are at.  If I was you I would go to the doctor and ask all this and tell them that the nurse refuses to tell you.  x

       

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  • Posted

    I find the very term ‘COPD’ very confusing and sometimes, a bit misleading.

     

    Am I right in thinking that it is not so much a ‘disease’ in the accepted sense, (like cancer, for example)  but more an umbrella term for a GROUP of diseases and conditions which present similar symptoms but have different causes? The main symptoms (and the diagnostic starting point) being ‘airflow limitation’ and reduced lung function?

     

    Can anyone clarify this for me please? Because like hypercat ... I’d like a more specific daignosis.

    Ta

    Jo

     

     

     

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    • Posted

      Hi Jo,  you are right copd is an umbrella term for 2 or several diseases - I say several coz I understand that it covers emphysema and chronic bronchitis though some medics include others under such as asthma

      My nurse claimed it covers E and CB only because although the diseases are slightly different the treatment is the same. 

      Most people have both with one primary 1.  CB is damage to the upper airways and E is damage  to the bottom of the lungs - the aveloi.   I am sure someone will come along to explain it better coz that's all I know. 

      The main cause of both diseases is smoking but can also be caused by asbestosis and other job related illnesses. 

      I hope this clarifies it a bit.    Bev x

       

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  • Posted

    Hi hyperactivity

    I also feel I am not being told anything was told few months ago had copd witch was fionosied by a xray the words were mild background copd no diesese present when i asked about that was just told no diesese there but i thought cood was a desese,I had a spirometrey test just after I had a chest infection the nurse said 79% was good might be good to the nurse she gave me an inhailer witch I don't have to use I seem stuck in limbo land I am now suffering anxiety attacks and feel as if I'm never away from the doctors

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  • Posted

    So sorry hyperact this preditive text x
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    • Posted

      Predictive text are new swear words smile 

      It's unfortunately common to be given a diagnosis of copd and then packed off without any proper information. 

      If you look at the British Lung Foundation and the NHS site there is a lot of clear information there.   Stick to recognised sites though otherwise you might get misleading information. 

      COPD is a disease but I think the nurse meant nothing more was going on ie lung cancer etc.  and 79% is pretty good.  My last spirometry showed 78% but I do need to use 3 inhalers.  

      I hope this is helpful love.  Bev x 

       

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  • Posted

    Taken from the NHS site

    Chronic obstructive pulmonary disease 

    Chronic obstructive pulmonary disease (COPD) is the name for a collection of lung diseases including chronic bronchitis, emphysema and chronic obstructive airways disease.

    People with COPD have difficulties breathing, primarily due to the narrowing of their airways, this is called airflow obstruction.

    Typical symptoms of COPD include:

    increasing breathlessness when active

    a persistent cough with phlegm

    frequent chest infections

    Read more about the symptoms of chronic obstructive pulmonary disease.

    Why does COPD happen?

    The main cause of COPD is smoking. The likelihood of developing COPD increases the more you smoke and the longer you've been smoking. This is because smoking irritates and inflames the lungs, which results in scarring.

    Over many years, the inflammation leads to permanent changes in the lung. The walls of the airways thicken and more mucus is produced. Damage to the delicate walls of the air sacs in the lungs causes emphysema and the lungs lose their normal elasticity. The smaller airways also become scarred and narrowed. These changes cause the symptoms of breathlessness, cough and phlegm associated with COPD.

    Some cases of COPD are caused by fumes, dust, air pollution and genetic disorders, but these are rarer

    Bev x

     

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  • Posted

    Taken from this site.

    The BODE index (= BMI, airflow Obstruction, Dyspnoea and Exercise capacity index) should be used to assess the prognosis when the component information is available: measurement of the BODE index includes measurement of BMI, FEV1 as a percentage of predicted, dyspnoea (modified MRC score) and exercise tolerance (6-minute walking distance).

    Assess the severity of airflow obstruction by FEV1 as a percentage of predicted:2

    Stage 1 - mild: 80% or above (symptoms should be present to diagnose COPD in people with mild airflow obstruction).

    Stage 2 - moderate: 50-79%.

    Stage 3 - severe: 30-49%.

    Stage 4 - very severe: below 30% (or FEV1 less than 50% but with respiratory failure).

    Bev x

     

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  • Posted

    Well done ,,,,but I find that to keep calm when speaking to GP receptionists is a help ,as they get a lot of abuse ,,,,sometimes not their fault ,I always think if you treat people with respect ,,,,you get respect back ,it's the same when I'm in hospital ,,,,,if I can manage to do things for myself then I don't bother the busy nurses ,( I have seen able bodied go outside for a cigerate then ring for the nurse for a drink ,,,,,glad you managed to finaly get through in the end ,best wishes 
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    • Posted

      I do keep calm and am never rude or abusive to anyone.   I used to work on a customer frontline service and know it isn't their fault. 

      Is that the impression I have given in my post?  x

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    • Posted

      Hypercat, well done indeed! 

      I also used an online link for my bank. I really rocked the boat when I filled out the application enclosed on the bank's link.

      After signing off the link, the application went directly to the bank's executive office. The next time my husband went into our bank, the bank manager wanted to know why we didn't personally confront him about all out many problems, because he stated that his district supervisor had an important meeting with him about his staff. He was upset, but he needed to be rattled. He pleasantly asked that next time we do him the favor of confronting him, and not filling out the link application. 

      The problems we were having with our bank were horrible ones. It was mainly the staff. The manage would just sit and enjoy it too as he watched his cashier's rudely spoke to me and other customers. So he did nothing about it, and found it humorous too, and this is why I went online...it can be very powerful! 

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    • Posted

      Hi ,oh no ,,,indeed you didn't ,,,please don't think for one more minute that I was saying that ,,

      I was just making a general comment ,,,,, I've scriolled down to your last comment ,,,,I have to say I'm shocked ,,,,,but not totally suprised that some of your notes/comments are not on your notes ,,,,,but that just isn't right or good practise ,,,,,it might well be worth writing to them with your comments and keep a copy of the letter to take with you ,,,,if needed next time ,,,

      good luck and very best wishes,

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    • Posted

      Hi Nanny thanks for your reply.  I made my points to the manager,  and the fact she didn't believe me and twisted everything round is her problem not mine.   I don't like change and this is the nearest surgery to me,  and there are a couple of lovely doctors I see there,  so am not going to take it any further.   Unless they kick me off their lists that is! 

      What I am going to do is keep my own records of appointments and what was discussed in future.  Sad,  but that's the way it is I guess.  Bev x

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    • Posted

      That sounds the best idea to me ,my health centre sounds the same as yours ,,,,2 brilliant doctors that you have to book an advanced appointment or you might get a phone appointment ,but the copd team are great and that's important to me ,so like you I'm going to stick with them ,good health ,
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