i notice that a lot of you guys get to see a specialist i have servere copd which was diagnosed by the nurse i have never been referred to see a chest specialist ? is this the norm . we have a specialist nurse every few months at the surgery but all the local g.ps share her so if we need to see anyone inbetween her visits we have to see either gp or another nurse but i am finding they know very little about copd has they deal with everything sometimes i feel i am banging my head on a wall x

27 Replies

  • Hi rusty4ever, yes a good majority of us do see a consultant.

    You have to be referred by your GP or like me since I was a patient in hospital.

    It's a good idea to see a chest specialist as they're the experts.

    The practice nurses can give you a spirometry test but you can get full pulmonary function tests if you attend a respiratory clinic. This gives you a full understanding of your condition.

    As you said, the GP & nurses only have a scant understanding of lung conditions & that's why you won't feel you're getting the help you deserve.

    Discuss it with your GP next time you visit & see if he'll refer you to a specialist.

    Good luck & keep well 🌹

  • thankyou x

  • Like you I only saw the nurse at the surgery, until I was hospitalised for 6 weeks with respiratory failure. Now a consultant looks after me. You must ask to see a chest specialist, they will do more tests than the ones you get at the surgery

    Good Luck

  • it seems that with this illness they only see you after you are rushed into hospital doesnt seem right to me xx

  • Hi I am very surprised that with severe copd you have never been referred to a consultant. Have you tried asking to see one? If so what did they say? x

  • havent seen anyone but a nurse but i have never asked i thought it would be automatic to be under a specialist guess i got a lot to learn . x

  • No rusty, it is automatic to be referred with other illnesses like cancer and heart disease, but not lung disease. That's one of the things BLF and others are fighting for.

    My advice is to ask and see what they say. If they say no then under the NICE guidelines you have the right to demand it, but you might have to fight to get them to agree. x

  • thankyou x

  • If your COPD is under control I don't see why you should see a consultant. I only started to see a consultant was when I was admitted to hospital because my breathing was really bad. And my oxygen was low. I try to stay away from hospitals. I usually refuse to go because unless your oxygen is lower than 88% they won't put you on oxygen and I have a nebuliser in the house and so far my oxygen hasn't been below 88% so there is no need to go. But you could talk to your GP if you are not happy with your treatment take care

  • oh my breathing does get bad at times i visit the g.p ? perhaps if we were assigned a specialist before having to be rushed to hospital it may help us understand this horrid illness more i have had to google everthing to learn what to expect and give myself bad anxiety through reading some horror stories .if copd is has common has they are saying they need to get some staff more educated in helping those with it i know the nhs is struggling and on the whole we are lucky in england but if it had been cancer or some other chronic illness we would get referred straight away to see a specialist i and im sure many others feel the forgotten crew. has for copd under control i dont think that is possible has you can feel okay and then a while later terrible it can change that quick .i think the answer would be in a ideal world to educate some of the nurses who are at the surgery about copd but due to all the cuts i dont think that will happen thankyou for your reply

  • I under stand what you are saying. Dose your GP not have a practice nurse that is trained to deal with COPD or a Doctor who knows about COPD most of the practices I have been to do. I wouldn't pay much attention to what you read on the Internet. The site I only read is the NHS choice site. Not any 2 people with COPD are the same sorry you are having a hard time if you are not happy ask your GP to see a consultant in the respiratory clinic take care

  • What were the numbers on your spirometry? What medication are you on?

  • hi dont know but guess pretty low under 250 im on spiriva and have just been taken of seretide 250 and put on fostaire i also have a sabutamol when needed and carbocisteine and take omeprazole for gerd x

  • You cannot be fully diagnosed by a nurse Rusty- they're not Doctors! You must make an appointment with your GP and ask to be referred to a specialist. You will only then be properly diagnosed after you've had all the tests - including x-rays etc., Good luck. XX

  • thankyou x

  • I was diagnosed by a nurse too and checked this some time on on the NICE guidelines. They say that nurse diagnosis is fine as long as the nurse is properly qualified in respiratory conditions. Apparently there are what is known as 'high end nurses' who are allowed to write prescriptions too.

    I agree that this shouldn't be allowed and that we should all be referred automatically to a specialist. x

  • I have had COPD for some years now. Touch wood I do not get many chest infections but my breathing is terrible and I have never been passed to a specialist. I have had to fight for everything. I get the feeling it is my age!!!!! The nurses in my surgery don't seem to know as much as I do about COPD but my GP is good but I feel that their hands are tied. I had to jump through hoops before they would talk to me about COPD as they kept sending me to the nurse. Next time I go I shall ask about seeing a specialist - have never asked before.

  • you sound a bit like me i have been lucky touch wood in the sense that if i have had a cold it they say is in my upper airways so dont get given antibiotics and have to suffer it and thankfully it doesnt often attack my lungs has such . but yes i cant walk far and can get very wheezy and breathless and i believe i have silent gerd to it is very frustrating to try and get help with the medicals has they are not lung specialist at the gps and the nurse that deals with copd and other chest complaints is only able to see us yearly has she covers all the gps around here i have now been offered rehab but as usual there is a waiting list . i had to change the doctor i had at my surgery to get this has he just sat nodding his head and said what do you expect you smoked i know its my fault but hey im human to and wish i could turn the clock back . ask about being refered for rehab i have heard that it really helps and educates you with this alful disease x

  • What is gerd?

  • its like heartburn and can make asthma and copd symptoms worse .silent gerd is where you dont always get the pain but its still there sore throat can increase phlem make you wheezy and breathless bloated .

  • I thought that was a side effect from the steroids and antibiotics. I get like that when I am on antibiotics and steroids. Thanks rusty. I don't think you are getting the proper treatment and care for your COPD I would fight to see a respiratory consultant and get a proper diagnosis take care xx

  • thankyou x

  • Pulmonary rehab is brilliant. Not only do they educate, but they do a regimen of gentle aerobic style exercises to increase lung capacity and increase core strength, so you can walk further and do more generally.

    Rehab taught me that the more you move around in general, the more and easier it becomes. Whatever exercise leaves you slightly breathless is a good thing....get your GP to make referral.

  • Hi. Please ask your GP to refer you to a specialist even if you are only seen once, you will be given all the tests you need and a proper diagnosis.

    Have you had a scan? Plus you will be given the best combination of inhalers for your condition.

  • Hello Rusty, do you have Pulmonary Rehabilitation teams in your area? These are very good & would put you under the care of respiratory nurses & Physiotherapists. They also help you to learn about the condition and how you can help yourself to be fitter. I do see a specialist consultant but he follows up my chest ( asthma, bronchiolitis & emphesema copd ) because I had lung cancer. I think when my 5 years are up, he will discharge me. I notice he sees a much younger age group than he used to. I think our NHS is already much different. I have read that locally, GP,s are gong to take responsibility for follow up cancer care. I think that consultant physicians may become largely an area of expertise available for other medical professionals... we shall see. X

  • yes i am on the waiting list for rehab but had to change to a diff gp at the surgery to get this .well lets hope that if gps take on the care of cancer ect they do courses and get educated for the care these people need thankyou x

  • Hello rusty4ever,,,, I would request a referral to a specialist,,,,,and keep asking till i got one,,,,,nurses can only act on instructions from a doctor,,,,and specialists in copd usually want to see the patients they are treating,,,Karen.

You may also like...