Realisation

[Eve3066]

One of these days we will have a general knowledge of this COPD that will be applied nationally and we will not have to rely upon misinformation and misunderstanding. Reading a website like this makes you think that we are all so well equipped to deal with the illness but I have personally (and as I can see from posts have others)come across such anomalies in the diagnosis and treatment of this disease that it astounds me. I have spoken to patients in hospital who are so ill equipped and ignorant through no fault of their own about the self awareness that is so necessary to contain and control this debilitating disease. If this is the second or third biggest medical killer then when are the guidelines going to be laid so we can all expect to be treated similarly as far as possible.

[knitter]

When I was first in hospital with my lung problems, I read the BLF leaflets that I found on the ward and they were a godsend.....lots of helpful information that I didn't get elsewhere

I think it's been mentioned before on this site that chest complaints don't get the resources and the publicity that some other conditions do

[Sohara]

I agree with you Eve....the problem is not helped though as COPD seems to me to be a WIDE umbrella term covering a lot of different conditions and illness's.

In fact I am not sure when the term COPD first was used...I certainly never heard it in all the years I have been 'under the doctors' for bronchectasis, which I have had since a very young child. As far as I knew I just used to get repeated chest infections, which were treated by my GP with anti-biotics.

So I am sure there are many many doctors out there, who know little about COPD and who have many patients on their books who they treat for 'chest infections' or asthma, etc who they never categorize as COPD and so these patients slip though the net. UNTIL somehow either through a hospital admission ( as in my case) or just the patient requesting a referral, they get to see a chest consultant, so get the necessary tests etc to classify them .

I am hopeful that this will improve , as COPD is now more widely discussed and help does seem to be arriving, slowly but surely. Of course finances being so stretched does not help matters

Love Sohara

[happyfeet59 in reply to Sohara]

I have been told that, emphatically, Bronchiectasis is not COPD and does not belong to the COPD 'family'.

[ptliverpool in reply to happyfeet59]

Why are we all put in this category then?

[happyfeet59 in reply to ptliverpool]

My understanding is that we are in a category with CF.

[Sohara in reply to happyfeet59]

Hi Happyfeet59

Well I have brochiectasis, and emphysema and have now been diagnosed as severe stage 3 COPD... I have been led to believe that all patients with Brochiectasis have some degree of COPD * EVENTUALLY * (but not vice versa,) but yes I do agree that there may be some slight difference of emphasis of treatment of the 2 conditions, but the lines are very blurred. In my case for example I don't think I suffered from COPD ( even though no one knew of that term back then) when I was young and growing up,as I could play sport and was never short of breath, but over the years with the repeated attacks I do now have COPD, as well as the bronch.

Reading about my conditions there does not seem much difference in the treatment of both conditions

[happyfeet59 in reply to Sohara]

I asked my consultant the question some time ago because I had seen the two linked somewhere. She said that, medically, they no longer link Bronch and COPD but rather Bronch and CF. Bronch's full tiitle is Non-CF Bronchiectasis. I think this is because the lungs condition in Bronc is so similar to CF rather than COPD. And also, as you say, are not necessarily breathless.

You may well be right that eventually Bronc sufferers may well end up with some degree of COPD. I am currently suffering severe breathlessness and have been put on oxygen as my sats are low. This came on quite quickly and took me by surprise as I have rarely been bothered by breathlessness. I do think I may now have COPD but my consultant is currently running tests and has not yet mentioned it. I think the LFT results for COPD and Bronch may be different.

[ptliverpool]

I was refered last year by my normal doctor for a spirometry test. When I booked an appointment to get the results there was only a locum available. I walked in and told her

that I had come for my results. She then looked at my results on her computer and admitted that she could not explain them as she had never read a spirometry report before.

I had to ask her for a copy and take it home and look it up on my computer.

Luckily I had a follow up appointment booked a few weeks later with my consultant so I could take it along with me for him to explain.

This jusy proves the point that some doctors know nothing about lung disease.

[WestWalesPaul]

There are guidelines for COPD treatment and NICE guidelines which you can find on the GP Training website here:

gp-training.net/protocol/re...

Locums are not my favourite types of doctors to see as I had a near disastrous exerience recently because they did not know the correct procedure for getting me an emergency scan for a clot in my leg. Locums tend to be trainees and I will avoid them whenever possible in future.

[happyfeet59 in reply to WestWalesPaul]

I agree with you on this. When you are ill you will see any doctor you can but so often that will be the trainee. Trainees, I think, are told to do 'light touch' prescribing and to refer to senior GP's if something serious. Trouble is they sometimes don't refer up, perhaps worried about doing it too often, or maybe feeling they couldn't admit to not knowing.

[Eve3066]

The thing i am trying to get at is that during my last two hospital stays in the last 12 months I met one person who had been told she had COPD but knew nothing about self management, did not know what an Oximeter was, had never heard of spirometery

Could not understand why she had to be on a CPap machine in the hospital for 48 hours, etc etc. the second guy was similarly diagnosed but although he was on oxygen at home had no idea how much or why. He was not aware of his oxygen levels or carbon dioxide levels, used his inhalers when he felt a bit ill !

Neither of these people were stupid just Not informed , surely this COPD needs some education if we are going to manage it at home which in most cases we are expected to do. The second guy just kept coming in and out of hospital because he had no idea there was any other path to follow.

GP surgeries need to use specialist nurses if that's what it takes to explain to patients what's happening to them and they do not need to be palmed off with half explained excuses and prescriptions that will perhaps do the trick or not !,

[Moderator]

Hi

The following is taken from a post found elsewhere on the community which may help to clarify issues.

Another point worth noting is that Cystic Fibrosis affects other organs in the body - not just the lungs. So non - cf bronchiectasis is a term used by some to differentiate people who have CF and have bronchiectasis - and people who have bronchiectasis but not CF - bronchiectasis is over production of mucous in the lungs whereas CF is overproduction of mucous in other organs (that's a very simplified explanation)

Thanks

COPD is the occurrence of chronic bronchitis or emphysema - a pair of commonly co-existing diseases of the lungs which causes the airways to narrow over time. This causes shortness of breath.

COPD is defined by it's characteristically low air flow - spirometry used to measure the airflow - the low air flow is not reversible and gets worse over time. Whereas with asthma the restriction/low air flow is reversible.

Asthma and COPD are two different conditions - some people with COPD also have some asthmatic compenent - but people with asthma do not have COPD. Someone with asthma for many years can find that the reversible aspect of their asthma becomes less and less, and the damage to the airways more permanent - and this permanent damage is very similar to that found in COPD - which is why some people with asthma are told they have progressed to COPD, when perhaps the more accurate term is fixed airways disease.

The treatment of copd tends to be similar regardless of whether someone has more or less emphysema than bronchitis and vice versa. People with emphysema tend to need oxygen. Alpha 1 can affect other organs other than the lungs, so anyone with Alpha 1 may have more "complicated" treatment - but the treatment of their copd will not be any different from someone who has copd due to another cause.

COPD affects everyone differently - everyone manages their condition differently - the treatments are generally the same across the board regardless of how your COPD started.

Bronchiectasis (a separate condition to copd) is a permanent abnormal widening in one or more of the airways. Extra mucous tends to collect in those parts of the airway that are widened. The widened airways with mucous are prone to infection. The cause of bronchiectasis is not clear, some conditions that affect or damage the airways can cause bronchiectasis e.g. whooping cough, pneumonia, measles etc. It is possible to have both bronchiectasis and another condition.

[Hidden]

We have had this or similar discussions on this site and the BLF site for years now. Many people seem to think that "COPD" is a disease in itself when it is not! COPD is an umbrella term that refers only to chronic bronchitis or emphysema. Why on earth those diseases cannot be referred to individually is beyond me! Also, this site is not just for people with "COPD" i.e. bronchitis or emphysema. It is also for people affected by any of the other approx 600 lung diseases most of which the majority of medical staff haven't heard of let alone know how to treat. Rant over - sorry!

[Hidden]

No wonder people get confused. One nurse told me I had COPD, but my consultant says no, Bronchiectasis (because of results of CT scan) then went on to say 'but there is an element of bronchitis'!! And my GP still gives me an asthma review every year, even though my consultant has not confirmed an asthma diagnosis!!

[teaky-19]

when I was diagnosed I was told I had copd & ipf my doc refered me to a dieticiien who told about my copd I aked her about my ipf she said only about copd when I went back to see my doc I aked her why she did not mention my ipf she said it comes under copd umbrella I had to tell her that it does not come under copd its a totally diferent I think she got the message when she filled out a ds1500 for me she had both copd & ipf on it mind you she is a young doctor but she is so helpful with me , I wonder how many docs don't know this its bad enough having this disease its very wrong that docs don't know ipf is totally unrelated to copd

[onamission]

I would like to see information on how to keep well and I think if people were educated like ATOS many of us would not be in the place we are.