Noob

Hey there all.

Having just recently been diagnosed with moderate COPD.

Have been left feeling like a leper by my Dr's.

Had enough and feel like maybe a formal complaint to the GMC would get some results but feel half the Dr's would get their butts kicked.

Having gone to the Dr's at least once a month over the past year with chest complaints and short breath and chest pains.

I told them that my sister has emphysema and my mother died of emphysema and telling them i am worried that i might have the same and could they please screen me for anything. Making me feel like i was a hypochondriac............

I had to insist for an xray to be taken and then no one getting back to me about what the xray says. having to phone them 2 weeks later to find out what it says, and to be told by the receptionist the xray results were fine.

After been told i was fine for the last year this has been going on i landed up seeing a locum from a different surgery who was just there for a week as cover. He told me that he could clearly hear that there was something wrong and referred me for a spirometry asap. then to be told i have moderate emphysema, asthma and hay fever but also suffer from Obstructive sleep apnoea. I was told i was going to get tablets and an inhaler.

Having been handed a leaflet and told to go to my Dr's for my script and appointment then being told no appointments for two weeks. Finally got my script and was given a turbo inhaler but was not told what was going on.

Went to pharmacy and was asked do i know how to use an inhaler. to which i responded...

NO.....

Was then handed my bag thinking there was tablets and an inhaler.

got home to find just a turbo inhaler............

SERIOUSLY!!!!!!

Not having been told anything about this or how to use it, i had to watch a video on the internet on how to use this inhaler.......

finally after getting to speak to a nurse from my clinic and ripping her a new one told me to come in and see her tomorrow.

7 Replies

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  • Oh Gazath, I feel your pain. I've had something similar but not as bad. At least my own GP did originally arrange a spirometry at the surgery and I was then referred to hospital, since then she has been unavailable and the other GP I saw didn't tell me my diagnosis just that I needed an inhaler but she couldn't prescribe it until I'd seen the nurse who would show me how to use it. That appointment took a further 2.5 weeks and I then found out that the pharmacist would have been able to demonstrate it!

    Since then chest discomfort has been reported to and noted by the nurse who wanted me to see the Dr so another 3 week wait then I wasn't listened to and came away feeling it was a waste of time.

    No information given by anyone at the surgery, everything I know has been cleaned from booklets and leaflets from BLF and this site. I've never felt so unsupported in my life apart from the nurse who listens to me but can't do anything without me being referred to the Dr.

    I can't change surgery because there isn't another one but I'm wondering if it's possible for you?

    I really don't understand why the pharmacist couldn't demonstrate how to use the inhaler, when mine has been changed he's asked me and demonstrated if necessary.

    I hope things get better for you.

  • Welcome, gazath,

    It seems you are new to the forum, A big welcome to you.

    It seems to me that you are getting a rough deal from your surgery. You are left feeling dissatisfied. I think you need to speak to PALS (patients advisory liasion service) and ask their advice. You need a doctor you can trust and who is approachable.

    You might consider changing your surgery.

    But the best thing is to talk to a BLF nurse, phone 0300030505. They wiil give you the best advice.

    Wish you well, gazath and hope that things will sort themselves out. all the best from anniseed.

  • Hi gazath.I got diagnosed 2 years ago with very severe emphysema. I had to change my doctor as he was next t useless too. The new one is very good. Now I have the correct medicines and get along not too badly.

  • Morning Gazath and welcome. Annieseed is quite right when she says contact the BLF nurses. They are a mine of information and very friendly too. Sometimes the doctors forget they are dealing with real people. My own doctors, though, are marvellous. I get all the information I need and I am called in regularly for tests.

    Best regards, Bobby.

  • WOW! What disparity. I too was messed around for 2 years. Although they still do not know what I actually DO have, it is serious, apparently. Perhaps I might not be so rough if it was taken seriously. I have never been a hyperchondriac but was fobbed of with antibiotics and steroids a LOT last year. It took an AnE doc to tell me I was very unwell and needed to be referred. My grown up kids were very angry but I try not to do anger. A wedge resection has not been the most fun in the world but at least I felt someone was doing something! I hope to get a definitive diagnosis at some point so the meds can be targeted appropriately. I feel let down and disappointed with my GP whom I had trusted. Can't change surgery but I think she must have read some results and felt a little embarrassed. I think a big problem is that GPs now run their own budgets and lung disease is expensive to treat! If they MONITOR me for long enough, I will end up costing them nothing. Sorry - not been feeling great last couple of days. According to my family, I need to stand up for myself more and get cross with them. Not likely, I cry when I get cross and I really hate that. I have consultant appointment in about another 3 weeks so i shall politely ask for a referral to Royal Brompton as they seemore of the unusual cases. Have no idea how I would get there but feel I must do the leg work so to speak as my little 8 year old granddaughterneeds me to bring her up for a few years yet. Sorry to rant but I am feeling rather sensitive about GPs. I have not seen mine since day after Boxing Day when she wrote referrals. Since I have seen consltants and surgeon. I ring Dispensary for meds. This site has been such a help last few weeks. I have found out a lot about lung disease and have had such a laugh reading the blogs. Change doc if poss if not, read up what you can on here and visit doc armed with info. Good luck :-) Alison

  • Hello and welcome Gazath. I am lucky with my care, but I agree with all the others. Give the BLF helpline a call, they are great and can give you some good advice.

    Lynne xx

  • Glad you've found BLF, nurses certainly gave me good advice when my GP wasn't giving me correct treatment. Suggest you give them a call. Good luck

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