I have been left to my own devices more or less since being diagnosed with moderate COPD 14 months ago. My level then was 62. I had to fight my GP for months to get on a pulmonary rehabilitation course, which l completed in April.
I asked my doc 6 months ago if my condition would be reviewed even on an annual basis only to be told that there was no point until l become very ill. I have told the doctor that l feel lm getting worse, and was told that was to be expected. Still no review forthcoming. I also told the doctor that l feel the inhalers l am on are as much use as a chocolate teapot, again it falls on deaf ears.
I feel totally isolated ;-(
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scotstaz
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G.P. sounds as though they have all the charm of a gnat unfortunately. Change G.P.? If not possible is there a respiratory nurse available? Probably only highlighting things you already know, so apologies if I have
At the very least, you always have this site to help and support you with whatever you need at the time. BLF Helpline team are very good so I believe - their number is 03000 030 555.
Ask for a 2nd opinion or an appointment with a Respiratory Specialist.
You should be having at least an annual check-up for your COPD.
I'm sure someone else will have advice too, and I strongly suggest you phone the BLF helpline on 03000 030 555.
All I will say is they are not following NICE guidelines by refusing an annual check. That might be something you can take up with them or through PALS. Failing all else, I would think about changing your doctor.
Hi scotstaz. Does your gp's surgery not have a respiratory nurse? Most have a nurse who is there once a week who is fully trained and usually gives reviews yearly or less depending on what stage you are at. I know the feeling of isolation, and I know that if you dont learn from this site and then question your gp, you get nowhere.I have had to fight every step of the way but it paid off.My resp nurse knows I am clued up, i,m sure she curses this blog haha. scotstaz it is your health, your life, demand answers or changes in medication. Find a breathe easy support group, but if you gp is not satisfactory, then please change. Dont be fobbed off, stand up for yourself, and demand answers / reviews etc. Dont wait until you are really ill.
I think you should be reviewed at least annually, does your surgery have a respiratory nurse in attendance at any time I wonder, if so book an appointment with her/him for annual check (sometimes the surgery prints this on the repeat prescription page around the time you annual check is due.
If your surgery doesn't have a respiratory nurse and you do change surgery maybe go for one that does have a asthma or respiratory clinic with respiratory nurse in attendance. These clinics usually carry out the spirometry test and also can chat with you about your medicines.
Some times just changing your doctor within the same surgery can make the difference also.
As suggested already. Check with the BLF helpline to get some more guidance from them on this matter.
I would check with the BLF nurses on the phone to see what the average norm is for reviewing COPD. I have an annual review of my health but COPD is only one of my illnesses and I take a lot of drugs. Good luck with getting it sorted
I found changing GP's was the best thing I could have done. After 26 years at the same surgery I felt I my GP had me in a box labelled 'chest' with no contribution towards potential improvement or anything else.
Add 'woman' and '50+' and comments about 'being sick of travelling as part of my job' and the GP added 'change of life and depressed' to the box.
The next three years were a blur (did you have a Millennium?) until my optician diagnosed what turned out to be a nasty bit of gristle in my brain. I was lucky it was a non-cancerous brain tumour and more than enough to spur me into changing my GP!
As an added bit of info, all GPs are recommended to gave a Patients Reference Group. It is worth volunteering to join if you get the chance. You get to see behind the scenes and have the chance to make suggestions to improve things for yourself, the Practice and other patients.
For information between the 1sr and 8th of June is the first ever Patient Participation Awareness Week see napp.org.uk for information!
aah sorry you are having problems getting medical support. I am waiting to attenxd the rehab course but was told itt could be a couple of months to gets one. I dont understand hox
w or where you get a ''level'' score I.e. you are level 62!
good luck - have you tried MUCODYNE capsules I get great relief from them.
Hi puppydogs. After my spirometry results reached my doctor l was called in. She showed me the results on her screen which showed l had lung capacity of 62%, thats where l got the level 62 from. If you want to know your level, the doctor will have to tell you. I didnt ask, she showed me as she was trying to shame me into stopping smoking. I have to admit it didnt work, at first l went into absolute denial. However l have now been off cigarettes for the past 5 months
hi scotstaz my leval is 62% has well and i have been told the same that im not ready for emergency antibioctics or pulmonary rehabillitation but he did say should be reveiwed once a year and i must admitt that since i have been on seretide 500 since diagnosed in january i have not had any problems breathing..just the sound has if i am loseing my voice and i have put that down to the meds im on.
just hope i stay like this for many years...best of luck
Hi music. Yes l was told l wouldnt qualify for rehab, but l insisted she refer me anyway. A few weeks later l was invited to attend an assessment, where l was told l did qualify and started the rehab 2 weeks later. I dont know what your medication is, l am on 2 useless inhalers
hi if ur on blue ventolin and seritide make an apponitment with nurse or gp,tell them u would like b put on seebri or elkira as well, its to get ur lung function up ,u insist ,also it was at breathe easy once i went glad i did,that week 2 nurses were there asked me if i was on reahab /no still waiting from gp nurse who said dont need it yet,they said u do moderate copd they sighned me up,there,start july,should have started this week but had go for mamagram then hovergram ,rung rahab up was very nice ,changed it to july ,either change ur gp like i did or get in there and tell em straight do wat ur paid to do,
Can't offer anymore than has been said - so hope you can change your GP or do whatever else has been advised to help you - please do not feel isolated - know we are only electric people but there is flesh and bone on the other end and sympathy and empathy and support - so take care hope all goes well for you xx
Thanks to everyone for your advice. Ive know for the last year my best chance would maybe be to change doctor. However lve attended this doctor for over 20 years and was always very comfortable with her and found her very supportive. Its just been since the COPD diagnosis that it has all changed.
Anyway, l will ask for a review one more time and if l get nowhere l will seriously consider a change of doctor.
noticed u had ur gp 20 yr i had my ex gp longer but turned out he couldnt read an was to comfortable in his chair just in for the mony ,i rolloked him and got new gp same building different practise ,
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