Problems with Professionals

Hi,

dont know if any one experiences the same but my asthma nurse seems to be hopeless she never listens to me and never seems to help, when i go to the doctor they help a little bit but then always refer me back to the asthma nurse.

my asthma is relatively bad i am only 18 and as i very active person who is studying horses at college it is very frustrating when my asthma gets bad!!! usually i can controll it but i do suffer from very bad attacks which really frighten my friends and needless to say me, my college teachers get worried and have to go to the doctors who then gives me more steroids etc and then i get sent to the asthma nurse who has been told to alter my medication and look at other things but she never does she doesnt help at all never looks at my peak flows and so on and so forth, so i then go back to college still feeling really bad.

when i have to go in to hospital they always qestion me by saying, why hasn't your nurse or doctor done anything to help you... and i cant really reply or when i do they seem really suprise they alter my medication and then i get sent back to the nurse who says something like ohh good they seem to have made you feel better ect.

just wondering if anyone has the same or got any advice.

27 Replies

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  • sorry you having rough time i feel like that with my con. after escaping from a 4/52 admission including w/e in itu saw con only for him to say i c you had a spell on the ward your chest is clear we'll see you in 3/12. helpful or what. they seem more hung up on spirorometry's on each visit. I don't actually see asthma nurse at gp surgery as gp said no point just to stick with ones at costa. at costa there are 2 a male and a female. the male is brill and can go and if feeling really down can moan at him and he understands whereas female one drives me up wall. i gues its all down to personality and how well they actually understand you. try seeing diff doc.

  • I had a similar problem with my asthma nurse that i saw like once i think. She really kind of pished me off because it was my first visit after moving, and i had previously seen a consulant whom was very good. Anyway, she didnt look at any of my records or anything (that we brought to her) she just did one peak flow reading and did NOTHING! Then i went to see a doctor and got referred to a consulant, and he is absolutley awesome. I dont really have any advice, maybe try seeing a different nurse if that is possible.

  • Hi Kat

    Do you see a hospital consultant or are you Gp managed? If you are Gp managed could you not ask to be referred, most hospitals have respiratory nurses attached to them and they seem more clued up than Gp nurses (in my experience anyway). I have problems with my Gp in that currently my own Gp who is amazing is on maternity leave for a year. I have since seen 3 other Gps at the practice and they have all told me I am too complicated for them to treat! This leaves me a bit stuck when I'm not at the A&E stage but am slowly getting worse -ie with a cold. As I am a fairly new brittle asthmatic I don't have an asthma plan yet because things are trial and error.

  • Hey,

    I'm 18 also with uncontrolled asthma, my advice is to seriously try a different doctor! One horrible woman I saw (just once) refused to look at my records, (kinda important!?) measured my blood pressure incorrectly, prescribed me a whole box of Industrial Strength painkillers for some unknown reason that I reacted badly to; then on seeing some old medical scars on my arms accused me of self-harm!!

    Try seeing if you can switch within the practice or (if they're all like that!) find another surgery nearby & they can transfer your records. :)

    My new docs are fantastic, terrified of me, but are always really nice & friendly. Asthma nurse is okay- gets really excited about demonstrating placebo inhalers!! :D lol

    Good luck,

    Wheezy x

  • Hi Kat,

    If you are having regular hospital admissions and your asthma is interfering with your life, and your GP/practice asthma nurse are not getting anywhere in managing it, you should really be under a hospital specialist - you could ask your GP to refer you.

    Hospital consultants have more experience of some of the more unusual treatments that might be useful for you, and their asthma nurses are usually dedicated asthma nurses or at least dedicated respiratory nurses, so have more experience. The 'asthma nurses' you see at GP practices are often general Practice Nurses, and, while some of them are excellent on asthma, some have their main strengths in other areas and are not so experienced with asthma.

    Otherwise, if you are not happy with the care that your GP is giving you, or if he/she doesn't want to refer you, the option of going to see another GP at the same practice, or even changing practices, is worth considering.

    No-one should be content with poor control, regular admissions or interferance with their lives due to asthma until every possible treatment option, up to and including referral to a specialist tertiary referral centre, has been exhausted! If you have not had a proper assessment and work-up by a hospital respiratory specialist, I would strongly suggest that you give it a try.

    Hope this helps

    Em H

  • I just want to say thank you to everyone for all there help - will hopefuly find the strength to go back to the GP as can feel my asthma getting bad again :(

  • Hi Kat,

    I am an asthma specialist and I am horrified at the lack of care you are getting.

    In my opionon you are a classic 'missed' candidate who obviously requires specialist care however is not receiving it!

    You need to go back to your GP and demand that you see a specialist. Out of interest what medication are you on? Do you take antihistamines, what preventative treatment are you on?

    Asthma is controlable and with the right help you should see a marked difference in your care.

    I hate to think people like you are not receiving the right treatment.

    Best wishes,

  • I just wanted to address a comment to Gavin Dolman.

    You comment that 'asthma is controllable' - thankfully, for the vast majority of people with asthma, this is true, and I believe that it will probably be the case with Kat, if she is seen by a specialist and gets appropriate treatment.

    I would disagree with your generalisation, though.

    The minority of asthmatics, including many people on here, have asthma which unfortunately cannot be completely controlled despite high doses of every class of medication and treatment by a specialist team.

    Many of us who are in that situation suffer a great deal from the misunderstanding and misconception, on the part of healthcare professionals, that all asthma is controllable, and that if someone is not fully controlled on appropriate medication they must therefore be non-compliant or otherwise doing something themselves to provoke their symptoms. It is a very common - almost universal - experience amongst severe asthmatics, to have been accused of non-compliance for these reasons. The sad fact, though, is that some of us have asthma that cannot be completely controlled, and continue to suffer high levels of symptoms, regular hospital admissions and poor exercise tolerance despite being on a great deal of medication, being fully compliant, making all the appropriate life-style changes and being under expert care. This is an extremely frustrating state of affairs to be in, and it is made much worse by the ignorance of some healthcare professionals who assume that it must in some way be our fault.

    I am sure that you realise all of this, and that you did not intend your comment to be generalised to all cases of asthma; I do think that it is important, though, that as an asthma specialist you are portraying an accurate view of the condition.

    Em H

  • Em H,

    Firstly if in any way you thought that I was generalising then please be assured that was not my intention.

    I am infact not only an asthma specialist but a chronic asthmatic myself and have been since the age of 18months, I am now 26. My suffering and neglect of care as a child has led me to my career now.

    I must reply to your comment that although there is a proportion of asthmatics that despite every medication available and 100% compliance, they remain uncontrolled. You are right and it is sad that this is still evident.

    What I must emphasise though is that there is a huge number of asthmatics that do take their medication, they remain uncontrolled due to lack of care and that they can dramaticaly improve with the right education. It is not discussed enough that 'asthma is controllable' and for those that can be improved it is imperative that people like myself try to help them.

    My comment to Kat is that there is still avenues to pursue. She could well be in a minority that despite 100% compliance and advanced treatment there is no further interventions that can be made, however I would not stop at that. I would continue to try and develop new ideas and methods.

    I understand your comment but people need to be aware that there is a very long process before being the minority patient who just can be controlled adequatley. She needs to take this further and ensure it is dealt with soon. Her post is in reference to 'professionals' and I am here to ensure that asthmatics know there are professionals like me who believe 100% that their asthma may be able to be better controlled. I dedicate my career to helping others like me who suffered immensley as a child. It seems that you may have also had bad experiences with professionals however we are not all the same!

  • Mr Dolman,

    I am a health care professional myself, as well as being a severe asthmatic who falls into the catagory of remaining very poorly controlled despite maximum medication and opinions from some of the country's leading specialists in difficult asthma.

    I am always keen to encourage others to seek further help if their asthma is not controlled, and to make it more widely known that the vast majority of asthma can be well controlled with the correct medication. You will see from my post in reply to Kat's original query that I said quite clearly that she should not accept the degree of control, and the level of treatment, that she is currently getting. In fact, it is something that I say to nearly all new board members - that, despite the impression they may gain from the rather unrepresentative sample of asthmatics who post on this board, 95-97% of asthmatics can be controlled to the extent that their symptoms will have little or no impact on their lives, with the right care and combination of medication.

    The fact remains, though, that to make a blanket statement such as 'asthma is controllable' on a board such as this, which attracts a high proportion of people for which that just isn't so, will inevitably feel like a kick in the face to many.

    To make a generalisation - generalisations are usually wrong.

    Em H

  • I'm sorry but I dont agree.

    As we are both aware yes there is a degree of patients like yourself who's control has reached a max.

    However, and I quote 'Be in Control' is a term used by this site and many professionals so my point is not to kick anyone in the face, just highlight that asthma can be controlled. If we all thought the worse where would that leave our asthma patients?

    I understand again you are in a minority but the majority of patients simply do not recieve the right treatment and education, more often than not because of lack of education to the health care profession.

    My whole point of replying to this post is to give hope to the uncontrolled patients who are unsure what to do next due to a lck of input from thier Dr or Nurse, why does it seem you are dampening this idea?

  • OK, I'm stepping forth as a mod now to ensure this debate doesn't get too heated.

    Mr Dolman, welcome to the boards. As a new user you probably have yet to get a feel of the type of users we attract on these boards. The majority of the regular users fall into that 3-5% of asthmatics who remain uncontrolled despite maximal medication, education and health care input. As such, I simply ask you to understand that the statment ""asthma is controllable"" can drop like a lead balloon. ""The grand majority of asthma is completely controllable"" is one I use more frequently myself.

    If you re-read EmH's posts, she is not putting a dampner on the idea that most asthma is controllable. She quite clearly emphasises that this is the case. She, like most of the regular users of these boards, are keen to make sure that newcomers to the site are not given the impression that this board is representative of ""normal"" asthma management - because it's not!

    So, to sum up what has been said over the past few posts:

    1) Most asthma (95-97%) is completely controllable with the correct medication, adequate education, and health care input

    2) There is a subset of asthma patients who do not receive adequate education or input, and as such may settle for substandard asthma control

    3) There is a small subset of patients - of which this board is representative - whom have persistent uncontrolled asthma despite maximal medical input, education and health care. They may have been subject to accusations of non-compliance, etc.

    Here endeth the moderation.

    CathBear

    (Moderator)

    (Health Pro)

    (Chronic Asthmatic)

  • Hi,

    Thanks for your reply.

    I am confused though. Forgive my ignorance but I thought these message boards were for all asthmatics, not just or simply the 'normal'?

    I hope I in no way offended anyone but It seems that on my first post I have been subjected to deliberation on a subject that I specialise in. I know this is a discussion forum but I quite simply had a point to make, no to upset anyone.

    I would have thought that as asthmatics and professionals we are allowed to have conflicting discussions without it 'going down like a lead ballon'?

    I am so keen on emphasising increased control beacuse after 2 resucitaions, 14 years of severe asthma and decreased lung function, I know first hand that lungs can be 're-educated' on how to work properly. Surely by me passing this message on I am not raising a sore point?

  • Mr Dolman, I am also confused.

    Did I at any point in my message suggest that these boards were *not* for all asthmatics? I don't think I did, so I apologise if you gained this impression. I was simply trying to offer some friendly guidance so that you know the kind of audience you are posting to.

    The point which you seem to be persistently missing is about your sensitivity in making the comment that implied that all asthma could be controlled. As both myself and EmH have pointed out, now several times, WE AGREE with you that MOST asthma CAN be controlled. We are not disputing this fact!! I'm not sure why you think we are...so there is no ""conflicting discussion"".

    I have spent long enough in medicine to know that we can all learn more on any particular subject area, no matter how great our knowledge. Of course you have been engaged in discussion - these are discussion boards and are visited by probably some of the most ""expert patients"" you will ever come across. They can, and will, subject you to healthy debate. Don't feel offended or irritated that they will do so.

    I am pleased that your asthma is now under control. However I don't think it really adds to the discussion to tell me how many times you've been resuscitated. Try to come round the table and view some of your comments from the viewpoint of some of the asthmatics on here whom I know have been resuscitated more than that and are still struggling with uncontrolled asthma. I am just asking you to be a little more magnanimous and senstive with some of your comments, that's all.

  • Hi CathBear,

    Your Quote: ''She, like most of the regular users of these boards, are keen to make sure that newcomers to the site are not given the impression that this board is representative of ""normal"" asthma management - because it's not!''.

    This says to me that this discussion area is not for 'normal' asthmatics. Where can they discuss their asthma if this is not the place. I may have missed something being a new member.

    Thankyou on your guidance for the audience we are posting to however this post was generated by an 18 year old who is poorly controlled because her health profesisonals are neglecting her care.

    My simple reply was to tell her that she should push for further intervention. I think she may well be overwhelmed by the responses posted today! I hope she doesn't get the impression she cant be controlled.

    Again, apologies for anyone who has been offended but my point all along has been to Kat, the post generator in question that her asthma is not controled enough and that she should persue it further.

  • Gavin Dolman wrote:

    ""Hi CathBear,

    ""Your Quote: ''She, like most of the regular users of these boards, are keen to make sure that newcomers to the site are not given the impression that this board is representative of ""normal"" asthma management - because it's not!''.

    ""This says to me that this discussion area is not for 'normal' asthmatics.""

    Well, that's odd, because if you *actually read it* as opposed to taking offence at it for the sake of it, it says to me that the majority of the more regular posters on this board are not representative of ""normal"" asthmatics. It catagorically, clearly does NOT state that this message board is not for ""normal"" asthmatics.

    I won't quote the rest of your post, because there is no need. Why are you trying to turn this into an argument? What you say about the original poster on this thread is EXACTLY THE SAME as what CathBear and EmilyH have said about her! You are all in agreement.

    EmilyH and CathBear both - rightly - picked you up on your suggestion that asthma was controllable as being an insensitive generalisation considering the audience here. You seem to think that these people won't read this thread because they didn't make the opening post. This is not the case, and we ask that all board users remain sensitive to ALL other members when posting, and not just those who happen to already be taking part in the thread in question. You have now apologised for this, so thank you.

    However, that is all that CathBear and EmilyH were disagreeing with. There's no need to keep repeating your own advice as an argument against two doctors who both agree with you!

    Steve

    (Moderator)

  • Thanks, Mr Steve. Yes, Mr Dolman, what I said was simply to clarify the bias that exists on this board towards the more severe end of the spectrum. That bias is not of anyone's making, it is simply a fact of life that support fora of any kind are going to attract more severe sufferers who need more support. I didn't say that this board is solely for them - no-one has ever decreed that.

    Thank you for understanding. I hope you continue to post here and engage in more lively debate ;)

  • PeakSteve,

    In response to your post I appologise. I have misunderstood the point that was being made and under no circumstances am I trying to argue with anyone!

    I guess we all miss-read things at times???????

    Thankyou for pointing it out to me, I have had a long day and I obviously didn't read it properly. Sorry to CathBear and EmH.

    I wasn't aware of the audience this site gets however I now am, so I will bear it in mind!

    I am a big fan of Asthma UK though and raised 12k for you last year. Its good to see there is people out there who are very passionate about asthma.

    Again to all, appologies.

  • Thanks, Gavin, for your reply. As CathBear has said, please continue to post here; you clearly have something to offer the debates on this message board.

    The regular user base here is very much skewed towards the more severe-brittle end of the asthma spectrum, although there are still many others who are much less severe - see the ""Sensitive Subjects and Sensitivity"" thread in the General Forum for a further discussion on this.

  • Thanks Gavin, yes, please *do* continue to post here - it's useful to have as many different professional and personal viewpoints as possible. We have a few doctors - mainly here as patients - some asthma nurse, practice nurses, hospital nurses and even a physio or two - but I don't think we have an asthma CNS, so it'd be great if you could stick around and offer us your thoughts on things.

    And remember, 95-97% of asthma *can* be controlled... enjoy dealing with few of the other 3-5% that you'll meet on here! ;)

    Cathy

  • Hi Kat,

    Over the years I have had terrible problems with G/P's, Nurses, and Consultants. I have also had some brilliant ones. I have been diagnosee with whooping cough 5 times, (even though I was vacinated against it), I have also been told to move house to get better, and to give up horses even though I am not allergic to them. I have been told that I must be non compliant even though I am.

    Currently I deal with 2 respiratory consultants, (who quite often disagree despite being in same the hospital) and and 2 registrars. I play telephone tag with the nurse through the consultants, and the nurse doesn't speak great english, although she is good. (and I think may look at these boards occasionally)

    Recently I was sick, I ring and say 'the action plan says take pred, can you ask dr...? if I should take it'. Message comes back from one of the consultants Don't take the pred.and don't take anti-biotics either. Nurse then says she no longer wants to play telephone tag, can I call consultant directly. Consultant doesn't return messages I give up sending them.

    I carry on being pretty unwell for quite a few weeks. I go for a Clinic Visit 7 weeks later the consultant sees my peak flow chart, and says you should have taken the pred....

    AHHHHH!!! This is life with asthma. No consultants say exactly the same.. mostly they approximate the same page. A month before this illness episode I got completely lectured for not exactly following the action plan by the registrar, who made me feel really stupid.

    Dealing with professionals is really difficult, my core advice would be to keep a peak flow diary, and then put the figures into a spread sheet chart. I take a print out chart to every consultation that I have. I find that doctors find it more comforting to look at a piece of paper rather than talk to me. Its very good for getting action out of asthma nurses too.

    Not much help, but do look for new doctors, you can find good ones.

    RI

  • Hello all,

    Apologies for not responding to the latest posts on this thread sooner - I have been out for most of the afternoon at an OPA seeing my consultant (one of the leading professors of respiratory medicine in the country, and a researcher for Asthma UK, by the way!).

    Thank you very much to Cathy and Steve for clarifying things - top modding as usual, guys!

    Thank you, Mr Dolman, for your apology. I'm sure you now realise that I was in no way disagreeing with the overall tenor of your post, in terms of your advice to Kat - in fact, I had already said virtually the same thing in an earlier post. It was just the one comment that you made that I felt was rather insensitive in terms of its irrelevance (and incorrectness) to the majority of the readership of this board.

    Having said that, I am sure that you have many useful things to contribute, and I echo Cathy's wish that you stay around and continue to post. We are a friendly and diverse bunch with varying levels of asthma and knowledge, and I am sure that we can learn from you, and you from us.

    Lastly, I would also like to apologise to Kat, for the disruption on the thread that she started, and I hope that at least some of the answers have been useful, and that she can take away some ideas about where to go next with her asthma care.

    Take care all,

    Em H

  • EmH, PeakSteve + CathBear,

    Thanks for correcting me earlier. I have had a long hard day today however that is no excuse and I was wrong. Its good to know when you are wrong and the key is to put your hands up and realise you were wrong! In this case I was so thanks for great comments and discussion that made me see right! This discussion should hopefully encourage people like Kat, Rihobbs and others to see we are all very passionate obout our asthma and our work.

    Good luck to Kat and to Rihobbs, there are some good asthma professionals out there so keep doing as you are and I hope you find them soon.

    Best wishes all.

    Gavin

  • And at the end of the day their doctors not god?

  • Quite so, Andrea. The number of things I see on a daily basis that I wish I had the power to sort out but I can't is legion - and quite humbling.

  • Crikey, thank you for the advice - i have got very mixed up in that conversation but thank you for your help! have been a little poorly today to have decided i better go back to the doctors :(

  • Heh Kat, sorry about the debate....glad you have decided to go back to the doctors, I hope you get somewhere this time and get the opportunity to air your concerns.

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