what help should i get from doctors nurses

[susiecue62]

have had c-o-p-d for 4 years,but people on this site seems to get a lot more treatment from docs and nurses what plans and treatment should i get or expect.only see nurse at docs once a year no hospital for 4 years and no care plan please help

[elian]

I think a lot depends on what level of severity you have as to what support and treatment you receive. I only see my respiratory consultant once a year and I occasionally get a phone call from the respiratory nurse at my gp's surgery. Apart from that I'm pretty much left to myself when it comes to diet and exercise, though I did get a phone call the other day inviting me to pulmonary rehabilitation. This will be the second course I've been on. My other one was more than 2 years ago.

Perhaps you could ask your GP if there is a pulmonary rehab course you could attend ?

[Hidden]

l think if you have any questions, worries that you make an appointment with your respiratory nurse. She may decide to do a lung function. have a discussion and ask questions. all the best from Annie80

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l think if you have any questions, worries that you make an appointment with your respiratory nurse. She may decide to do a lung function. have a discussion and ask questions. all the best from Annie80

[libby7827]

Hi, when I was first diagnosed I was already at the moderate stage, I went to the lung clinic at the hospital every 12 months and didn't see my doctor unless I had an infection. As the others have said, best thing is to go and see your doctor, if you feel you are getting worse then ask to be referred back to the hospital and, most of all, if you are smoking you must stop straightaway. I didn't stop when I was first diagnosed and am now stage 4 (end stage) and more or less housebound. It's not a life I would wish on anyone. Best wishes, Libby

[Hidden]

HI, My husband is moderate/severe COPD and has had it for a good few years. He is more or less left to it - we go and see the Doc once a year and have just done that. She acknowledged that we probably know more about his condition and how it affects him that she does. Having said that about 3 years ago he was very ill, exacerbation after exacerbation and resulting in a him being admitted to hospital primarily because he was prescribed drugs by a locom that he was allergic to. Since then we were referred to the specialist respiratory clinic - a nurse came to visit checked all his meds and referred him for a pulmonary rehab course (which I would so recommend - although when I asked our Doctor about it, was told he was too well to go on the course). I completely understand that you can feel isolated but having spoken to nurses get the impression that unless you are not coping well patients are left to get on with their lifes. I could never understand why my husband to this day has not been referred to a specialist but having said that feel much happier now just because we are learning to live with it.

When he gets an infection which he has just had, I do panic and I know that he does too. It takes such a long time to recover. My advise would be to ask as many questions as possible, look at the local Breath Easy group (my husband has enjoyed his once a month meeting if nothing else to see there are other sufferers!). Keep asking until you get the answers you want. Good luck TAD xxx

[libbygood]

I just see the resp. nurse at the surgery twice a year and that's it. I have quite severe COPD.

No Re Hab, no consultant, no hospital just me looking after myself more or less, I always have Abs and steroids in the cupboard. i do actually find I know more about COPD than the resp. nurse at the surgery. Last time I saw the Doctor (about something else) asked about a nebuliser, he said no as it was a last resort and I should continue without one for as long as possible. I think there are times when i would use one if I had one, but I sit it out and get over it.

Lib x

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The National Institute for Health and Clinical Excellence (NICE) publish guidelines for standards of care for COPD within the NHS. I tried (and failed) to post a link but Google it and you can read at your leisure.

[2ofus]

nice.org.uk/nicemedia/live/... this may be of some help.

[Ozzygirl64]

I only see the nurse for quitting smoking and GP if I get an infection. I have two inhalers, once useful and one not worth its weight in gold. But apart from that and doing some breathing exercises I just do my own thing xxxxx

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Its the same for me Susie. I only see my asthma/COPD nurse twice a year. I have asthma and borderline COPD. I only ever see doctor when I have infection. I have not had a lung x-ray either or catscan. I don't have a care plan either. You are not alone!

Bev x