Please listen to patients!

Please listen to patients!

I need to vent!

It's so frustrating knowing what you need but nobody listening to you. I understand you're a nurse practitioner and you've had how many patients walk in with asthma symptoms but I am not your usual asthma case. I have very severe, brittle, difficult asthma. I am on Step 4 therapy according to the British Thoracic Society and soon to be step 5. My asthma is cared for by respiratory specialists. You did not even believe that I was on Seretide 500 Accuhaler when I told you what medication I was on, and asked me more than twice if I was sure I wasn't on a lower dose. So when I tell you that my peak flow hardly changes and I only start to wheeze when I am really struggling, please listen to me, so I don't have to ring up NHS Direct like I just had to get seen by an out-of-hours doctor for some prednisolone that I needed just as much when you saw me 2 hours before.

So many health professionals contradict each other. My named doctor at my practice hates giving me prednisolone, so much that once when I saw the other doctor for some, he told me not to take it against her word. I have ended up in hospital overnight so many times that I cannot remember. I have been in HDU and had so many wires monitoring me that I looked like the back of a television. I understand prednisolone is not a nice drug due to it's side effects but when I tell you I need something more, please listen to me. The nurse who I saw today told me my chest was as clear as a whistle and I was not having an exacerbation; however when I couldn't even eat my dinner because I was that breathless that told me something different. The doctor told me I was sensible for ringing NHS Direct and not leaving it, so if anyone has any second thoughts, please get a second opinion.

I stress again, PLEASE listen to us patients. We know ourselves better than any of you.

(P.S. please don't think this is coming from a deep-rooted fear of hating medical professionals. I am a nurse myself).

19 Replies

  • I am sorry you had such a bad experience with your Doctor and practice. If I could I would give you my doctors surgery with my GP (found out he's the asthma lead in the practice) , the nurse practioner ( experience respiratory nurse ) and finally my asthma nurse Louise (with 20 years experience) forgot the other GPs. I want you to know that there is good medical professionals out.

    I have moderate asthma asthma and had mild asthma for 10 years til end of end of last November when I had my first ever asthma attack. Followed by 3 weeks of getting me better in conjunction of with my GPS to get me well again. I had a good winter after that on 250 seretide 2 puffs twice a day. Spring/summer off that on just a preventer and monkelaust 10mg for my hayfever. Still on it as I have been told by my asthma nurse. Back on seretide 125 mg October asthma attack 2 due to tree spores. Number 3/4 within 2-3 weeks of each other. Seretide increased to 250 after 3rd one. Back to see my asthma nurse for review Friday.

    That's a very potted history of me and my my doctors. Do I like being ill but I feel care for by such an amazing people. They are human but that's ok I am too.

    I hope and pray you get the care you name.

  • Thank you so much for sharing your story with me and hoping I get the care I need and deserve. I'm glad there are some doctors out there who know what they're talking about, maybe I should look around and try and find one to go with! X

  • Your not alone in having had a difficult experience with a nurse practitioner. I encountered one during a weekend in that period between GPs being allowed to opt out of out of hours work, but before 111 came in. I hope never to encounter another one for an asthma flare up. A waste of time. I had been told by a triage nurse on the emergency phone line that I needed to see a doctor and where to go to see one. I got there and was seen by a nurse practitioner. Like you I was told that my chest was clear; unfortunately my peak flow also wasn't too bad. On that other hand, breathing was beginning to get difficult, I knew I had a temperature and I was feeling very unwell. But I was told it was probably a virus and to keep taking my inhalers. That was it; I left there with nothing. Two days later I got to see my GP. By this time my PF had dropped further, so had my oxygen sats, and my temperature (at mid morning) was rocketing. She admitted she could hear nothing on my chest, but also said that something had to be causing all the symptoms and she was taking no chances. I left there with oral steroids and a hefty dose of antibiotics.

    The essential difference here is that my GP has known me and been dealing with me and my asthma for twenty plus years. She (along with all the other GPs at that practice) is prepared to listen to me if I go in there and say I have a problem with my asthma. That is the only time I have ended up on oral steroids (my asthma is moderate and usually very well controlled), and I still wonder if that might have been avoided if I had been put on antiobiotics two days earlier.

  • Very true! Thank you for sharing your story with me. It's difficult when people don't know you and assume just because your chest is clear that you are well. I'm glad you eventually got the help you needed!

  • What an awful experience for you and others when medical professionals won't listen to you. Fortunately I have never been in hospital due to my asthma but am aware that often I am not believed when I have to go to the doctors/nurses.

    I have heard that there are a lot of unnecessary deaths due to asthma attacks in this country and I am not surprised hearing some of the stories on here. They don't seem to take asthma seriously and are too reliant on figures instead of listening to you. x

  • I completely agree with you. Too many professionals are complacent and do not take into account the variances between asthma and different individuals. If only someone would listen! I have my specialist appointment on the 20th Dec so hopefully I'll be able to speak to someone who knows what's going on! X

  • The NHS.

  • That must be so frustrating for you and the last thing you need! I know I would find something like that stressing and upsetting which during an exacerbation is not going to help at all! I know sometimes doctors who don't know me look at my oxygen SATS during attacks and are all...that's not too bad when actually I just never dip there until I crash out.

    I'm very fortunate that every member of my doctors surgery including the nurse practitioner are so amazingly great and listen and know me and although I'm often frustrated by the fact they refer me to hospital admission so often that's only because I hate going not because of them doing anything wrong!

    If I were you I would consider going to hospital directly during a bad flare if you know you have no luck at your local surgery or if you have regular contact with the respiratory nursing team use them to gain access (I can ring mine and they arrange urgent consultant care with the hospital team) to try and minimise stress of unbelieving professionals when you need them least.

  • Thank you for your comment. My sats are exactly like that too, but by the time my sats are low it's too late and I have to be admitted and have nebs! You sound like you have a great team looking after you and it's nice that you're so thankful for them! I'll have a chat with my specialist when I go on 20th Dec for the first time and hopefully get somewhere in future! X

  • Absolutely agree with you!

  • I wrote a story based on this a few weeks ago and it really sums up my experience as a Brittle asthmatic. Please may make you feel less alone!

  • Hi, yes it can be difficult, I won't generalize as I have met some very kind people in hospital but sometimes you get those power-driven human beings. I hope you keep well. Take care.

  • Thank you, hope you take care of yourself too.

  • Thanks :)))

  • So sorry this happened, doctors and nurses are like this about everything these days, yet they are all too willing to try and rope you into all kinds of things like flue injections, i'm having to call my doctors tomorrow because of the nurse and the receptionists there being quite useless and pushy, they are called about the flue jab and i have to call them because i'm an adult now, they can only hear it from me, they called because of the fact i had asthma as a kid and got a breathing test done earlier in the year just incase since i have a mold allergy but i'm fine, no asthma.

    I have a feeling they want to pester me about going down to sign off on the swab test list too, which they also roped me into by not being clear that id be signed up to something and keep calling me every year about it to check up on me and they are telling me i need to get it done once a year... very very untrue... it's probs the very horrible nurse that works there who balls at the receptionists and acts like she knows everything, she kept interupting me when i was there telling her about the PCOS symptoms i have and how it runs on my mums side and wouldn't let me explain a thing.

    When i tried she looked at me like she was gonna punch me in the face LOL, definitely not seeing her again unless i really have to, but you just got to be careful with docs and nurses these days, most will just say things to see you off and have no intention of helping you but they want people to be sicker because they get pressure to sell drugs, everythng is about money so you did he right thing calling NHS, your health matters more than the money they can make and if you get really ill they try to talk you into buying other medications, it's not right, look after yourself.

  • I agree that doctors and nurses sometimes want to just see you off, maybe its the fact they are so pushed for time, who knows but it sure is annoying!

    Thanks, look after yourself too!

  • No... they say they are pressed for time but last time i was at the docs to tell them about a health condition i have i went there on a wednesday when nobody is in and the nurse just wouldn't let me get a word in, i think it's more they can't be bothered and they aren't aloud to really say much about anything to you so they can lead you to taking all sorts of other drugs that may make things worse but they want to make you sicker not better, a sick person gives them more money than someone they make well again, they pretend they don't have a cure for all sorts of conditios just to get you to buy into all sorts of things and sadly women especially do and they walk about it in a show-offy way like they are getting rich treatment or something but i don't know how they can talk that way about drugs that are probs harming them even more... but it seems most women are more than willing to take just about anything and everything if it means getting what they want, as a female i wouldn't ever do that and nobody else should ether.

    They down play all your symptoms too to make it look like it's not as bad as it is so less chance of getting any help at all.. .but the other symptoms are relivant no matter what, but they just go "don't be a baby" and see you off even when it may be something serious, or their favorite "It;s all in your head", it's terrible.

  • I get where you are coming from here. I saw a London G/P a few years ago who I had never seen before tell me that I didn't need the medication that my Respiratory consultant, (who another G/P in the same practice had referred me to,) had prescribed.

    I promptly asked her for qualifications as a Respiratory Consultant!!! She had none, and had not even done the specialist asthma g/p course. She was so adamant that I said ok, ring the consultants office and speak to him, I had his direct line. So she did, while I was there, I don't what was said, but she went bright red in the face!! I walked out with my prescriptions.

    But what it goes to show, is someone less forceful than myself might have believed her and then ended up in A&E.

    There are some brilliant G/P's and Practice Nurses out there, but a lot of them are muppets about asthma and really don't have a clue.

  • I'm so happy you told her how you felt! Too many people think asthma is easy to treat and for most it is not, and it's quite difficult to understand fully, especially with all the new drugs and how they react and respond in the system. General doctors have no right in going against respiratory specialists opinions on RESPIRATORY problems, but a lot insist on doing so anyway!

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