Plea for common sense (apologies for shouting)

While Asthma DOES have present in different forms, please lets not blame it for all of our perceived symptoms. There are many things within the doctors encyclopaedias of common illness which share similar symptoms.

PLEASE, if you are in any way worried or concerned, no point coming on just to hear that others have similar symptoms when they may, just possibly, be not for the same reason at all. Please go to your GP to check any symptoms out. If for whatever reason GP doesn't listen properly or you feel you are being fobbed off then either complain to the practice manager or move surgeries.

I'm truly sorry if this seems a harsh post but at one time on the old AUK, we had a healthy number of threads on which people who had REAL history of asthma, themselves or that of a close family member, were of great help to newbies. IMO, this 'source of goodness' has, in the last few months, been very much diluted by pointless advice from posters without this asthma history and some of whom are talking ..um..well, you know what I mean.

Suspect we have lost a goodly number of friends off AUK. Lets give them something decent to come back to.

PS If you do not agree, well..fine. I just know I've been slightly turned off.

28 Replies

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  • I agree GrannyMo. I know I use other places to chat to friends more. But here was where I could, when I needed to, moan. I try not to share everything on other places as I don't need everyone knowing everything about my health.

    Geina x

  • Thanks GrannyMo, I was actually thinking about this subject myself today!

    As a relative newbie myself on the AUK forum, I was always under the impression that people posting on here about really important health matters were medically qualified in that area! Forums are such a fantastic place to share ideas, get support, learn about new breakthroughs or to ask simple questions but most importantly to make new friends :)

    I think where a potential life threatening condition is concerned, people should be very very careful about how they answer posts to people who are not experienced in these matters as they may take their advice as that of a fully qualified medical professional! If I wasn't sure about whos giving out advice here, then I'm sure a lot of other people may be in the same boat.

    Happy Breathing everyone :)xxx

  • I completely agree Moira!

    Let's not forget after all that doctors do undertake a lengthy training and exams to become qualified and though we may not always agree with them.......WE are NOT doctors and, as you say attributing everything and anything to asthma or asthma medications is a very unsafe idea.

    I have been very put off the AUK site, rarely come on here anymore. Partly this is because of the amount of (in my opinion) pointless posts/replies.

    It becomes meaningless after a while if every post is about the same thing and every reply is the same. Introducing some rational thinking before replying to a post and asking yourself...do I actually know what I'm talking about? Do I have some constructive advice to offer this person? Would be great and might turn this forum back into the funny, supportive and informative place it used to be.

    Feejay

  • I don't agree with this at all. This is a place for people to write what they feel like writing on that day. It is an evolving forum with different people joining all of the time so it will never be the same as it used to be.

    There are also differences between experiences of people with 'classic' asthma and the non-classic asthma. And just because someone is not going to A & E all of the time does not mean their experiences of SOB impacts any less on their lives.

    I think a little more respect is needed here and less policing of the forum!

    (Can't wait to chat with you Philomela on the PM when it is up and running.)

  • Could you clarify what is meant by ""a real history of asthma""? Are you saying that there are people here who don't have asthma offering advice and support? Because noone, not even a qualified health professional, can make that judgement from words on a screen.

    I also don't see a problem with coming here to hear that people have had similar symptoms - I thought this site was a place to share experiences of living with the condition, and perhaps some things that have helped them? I do NOT mean medicines or anything like that, but if someone came on with a problem that someone had experienced and who could offer ideas for a bit of symptomatic relief until an appointment with a professional, I don't see a problem with that.

    Sometimes a little reassurance can be needed about symptoms too - someone to take your concerns and frustration seriously. I don't see how that is a problem either.

    I don't know if I've got the wrong end of the stick re the meaning of your post and I don't want to be argumentative, but this is my opinion.

  • I agree with granny mo. they are some users that while they say are waiting for diagnosis of asthma are then going on to offer advice as if they have experienced the symptoms and or have knowledge of it ... When its obvious they have read an article on the Internet or Someone has said to them .... I have previously said that using this knowledge for diagnosis of a condition is dangerous and only a qualified medical practitioner should give this diagnosis or detailed advice ..... I don't recall granny mo naming any names ,so was surprised to see someone wanting to discuss this further with another named person in private messages . Who hasn't even had any input on this thread !!!!

  • Gussypoo, JF and I often chat by PM about all sorts - I don't think she meant we were planning to discuss this thread. JF - looking forward to it being ready too.

    I'm not sure that I've seen anyone offering medical advice as though they were a professional (other than the people on here who actually are professionals, though they would of course still be likely to ask someone to go to their GP etc if concerned since they can't advise online). However, perhaps I missed these posts or just didn't register that someone was overstepping the mark of what you can do on a forum - I'm sure it has happened.

    I certainly hope - and I realise this was probably not aimed at anyone in particular - that none of my posts have ever come across that way, as I'd be worried if they did. I've learned a lot on here and sometimes I feel it's helpful to share it (eg very basic things like if someone is taking a lot of blue reliever but has no preventer then they might find they need something else to control their asthma and should go back to the doctor) but I always try, and hopefully succeed, in stressing this is just my experience/stuff I've picked up from here, it might not be relevant to everyone, and people should visit their surgery or ask the adviceline (I feel like I'm being a stuck record with how often I tell people to call the adviceline but I've personally found them pretty helpful.) I certainly have noticed others telling posters to go back to their GP.

    Re the symptoms - no not everything is asthma, and yes people do need to check with a professional if they're worried and not obsess, but like Piglet says, I can't see a problem with sharing ideas about temporary short-term relief of symptoms, as long as it's made very clear that this is not professional medical advice and is based on someone's own experience, and is not 'take this medication'. I've learned an awful lot from this forum about the actual symptoms and triggers of asthma as experienced by sufferers, and if you have something annoying, chest-related but you've been told not serious it can be nice to know that you're not the only one and have a bit of a moan - I thought that this was partly what the forum was for, within reason obviously.

  • Got to disagree with you philomela. I think there was no need to mention you in that quote. Maybe I'm paranoid but it does makes one suspicious

  • Maybe, but maybe it was just an error of judgement? As the PM system is down JF can't really communicate with me other than by saying something in a thread. Perhaps this wasn't the best one to choose as in the context there are other ways of interpreting the message, but maybe this didn't really occur to her at the time. I really don't know - but it can be easy for people to say something online that doesn't come across the way they meant, or has more significance than they intended.

  • Tho the private message is down she has done several replies to you in previous posts . So its not that she hasn't been communicating with you So why mention private messages now . Least if granny mo gets reported to the moderator she will know where it came from

  • I can't speak for someone else, but disagreeing with someone's post and saying so in a reply doesn't automatically mean you're planning to report them to the moderators - there are going to be a range of opinions on here which people are free to express providing they don't breach the forum T&Cs. I presume if the mods feel there's a problem with what anyone has said here then they will step in and say so, as they would if someone were offering inappropriate advice.

  • Surely posts which are not appropriate should be reported and dealt with by the moderators if required and not by ordinary members on the board.

  • *big disappointed sigh*

    Surely posts which are not appropriate should be reported and dealt with by the moderators if required and not by ordinary members on the board.

    Yes, that's the general idea.

    A number of posts in this thread fail at two of the most basic rules of using the message board:

    * Keep your messages civil, tasteful and relevant

    * Maintain respect for other people

    I'm not going to start issuing warnings or naming names, but I will say these three things:

    If you have a problem with a post on the board, click the ""Report?"" link at the bottom of that post, and we moderators will be notified and investigate as appropriate. Open forum is not the place for this.

    If you have a problem with a moderator decision, and now that the PM system is down, you should email webeditor@asthma.org.uk with the details and the entire moderating team will discuss it. Open forum is not the place for this.

    Inflammatory accusations which are unfounded and aimed an any specific member of this forum will result in an official warning. We consider this to be ""flaming"" that particular member.

    As JF said above, there will always be ""older"" members posting less frequently and new members taking their place. Every member here has an equal right to post whatever they want to as long as it doesn't break the terms and conditions of using the board. Membership of the board is not - and never has been - dependant on you having asthma (longer-standing members may be aware that I am not asthmatic).

    The way to get back to the ""old way"" is to be welcoming to new members, to politely correct any information that we spot that is wrong, to offer the advice that our shared experiences of living with asthma has given us to help the newly-diagnosed and the struggling, and to remember that what may seem trivial to us may be a ""big deal"" to another member, and thus it doesn't mean that their problem has any less merit just because of that. A ""real history of asthma"" provides the means to help those who don't have that history; but it does not provide the right to judge them.

    However, this cuts both ways. Grannymo is absolutely right in saying this:

    PLEASE, if you are in any way worried or concerned, no point coming on just to hear that others have similar symptoms when they may, just possibly, be not for the same reason at all. Please go to your GP to check any symptoms out. If for whatever reason GP doesn't listen properly or you feel you are being fobbed off then either complain to the practice manager or move surgeries.

    It is impossible to diagnose any issue via a message board - any advice provided is never going to be done in full possession of all the facts. We can offer suggestions but nothing more. However, no member is in a position to guess or assume how much knowledge any other member has on any given topic. So, rather than suggesting that those who are less experienced don't post their advice, it is instead perhaps best for the recipient of any advice from any member (or, indeed, any moderator) to assume that there is just as much chance that it might be wrong as there is that it might be right! To put that another way, if you request advice from members of this message board, or follow any advice given by members of this message board, you do so entirely at your own risk.

    And also, Grannymo makes a valid point about feeling ""fobbed off"" by your GP: if this happens, don't use the message boards as a substitute! There may be other GPs at your surgery you can see, or you may be better off moving to a different surgery. You could try the ""find a doctor"" function of the NHS Choices website, which shows you performance scores for surgeries and reviews from existing patients which might help you pick a more suitable GP.

    The most important thing I'm trying to get across is this: every member has a right to be heard. Every member has a right to ask a question. Every member has a right to reply to a question. And every member has a right to question those replies! And so on - it is a discussion forum, after all. If we all engage in the debates, offer our own advice if it is appropriate, or just offer some friendly support, without being judgemental or dismissive, we will have a message board to be proud of.

  • You will be amazed at what people get reported for .... Using the wiord Neb instead of nebuliser and forgetting a question mark when asking a question !!!!! And my appologise to granny mo . I didn't mean to side track your post .

  • Because my asthma is (mostly) fairly well controlled and I haven't so far needed to make the dreaded trip to A&E I tend to read many posts without responding, on the grounds that there are many people on the forum who know far more than I do. Also, I usually stick to the General and Off Topic areas, again because I feel that I have very little to offer people using the Medical or Parent & Carer areas, whose condition is far beyond my experience. Because of this I feel that I'm unlikely to have seen the post(s) that have caused GrannyMo concern so I probably shouldn't comment one way or the other on the content.

    However, I can comment on what I notice in the General and Off Topic areas, which is that most people are trying to support others and usually qualify their advice with a suggestion that a visit to a GP would be approptiate. This type of support and understanding certainly helped me when I first found the forum and I was very grateful for it.

    Sadly, I also notice that a post can attract a great deal of hostility so that, rather than having a grown up discussion, offence is taken where none was meant and matters quickly get out of hand. This is probably due to the fact that two important elements of conversation - tone of voice and facial expression - are inevitably not possible via this medium. However, we now have lots of lovely formatting tools available to us so maybe we can work out a way to convey our feelings using font colour, highlighting etc. Who knows, after 10 minutes spent colouring in an irate post we might decide that it's all too silly and not bother! Can I start by suggesting that this rather nice blue means that I REALLY don't want to offend anyone?

  • Just to clarify, I am looking forward to chatting with Philomela in the PMs about anything but this topic. Which is why I put it in a separate paragraph and in brackets. It is the only way I can contact her at the moment and I wanted her to know I am missing our chats. Please don't put your own interpretation on my reply.

    I am not on here to argue or disagree with anyone, we are all different and we don't need to be told what we should or should not be writing about unless it is breaking the AUK rules. I believe in tolerance! This will be my last reply on this topic.

  • I'm with JF on this one, we should be allowed to post whatever we like unless we are breaking the rules, it should be a fun and friendly place to visit, and i personally thought the original post was a bit harsh. Also it is not just newbies who need advice, we all need advice from time to time, and to be honest whos to say who is a so called ""real"" asthmatic and who is not. we should all be helping and supporting each other.

    lejaya

  • I completely agree with this. I'm driven mad when people relate EVERYTHING to there asthma!

    If someone's not willing to listen to doctors and take on board there advice/diagnosis, then they can't just make up one that suits them.

  • Ooohh Annista, now I'm having to experiment with the colours as well! Didn't realise you could do this, as I tried with my sig and it just did plain black :(

    Just intrigued by what you said about not really posting in Medical - I don't tend to reply to the Parents & Carers threads either for the same reason as you, though I have very occasionally.

    But I've never been really sure of the difference between Medical and General - I'm guessing there's supposed to be one but based on what's there I can't tell, and when I start a new thread myself I've never been quite sure where to put it - I tend to go for General as I figure it's probably covered by that. There are certainly some threads I wouldn't generally comment on, other than perhaps to offer sympathy if appropriate, but I would probably have read them and they seem pretty evenly spread over the various sections.

    Perhaps we'll notice more of a difference now the mods have the ability to move threads to the correct section.

  • But I've never been really sure of the difference between Medical and General - I'm guessing there's supposed to be one but based on what's there I can't tell, and when I start a new thread myself I've never been quite sure where to put it

    I've always gone for general meaning things like discussions about docs, hospital, consultants and issues such as action plans, whilst medical refers to the more 'medical' aspects - medicines, treatments, etc.

    I'm not sure where chocolate would come into that though ... love your signature! :)

  • Thanks Ratty!

    I'm guessing chocolate cures EVERYTHING so can therefore be raised in any section. ;)

    Makes sense re the divisions, but I suspect it hasn't been adhered to, hence my confusion.

  • Makes sense re the divisions, but I suspect it hasn't been adhered to, hence my confusion.

    Ratty has the general idea spot on - ""Medical"" was intended for specific medical questions, whereas ""General"" was intended for any asthma-related stuff that was less specific. On the old board we couldn't move threads that had been created in the ""wrong"" place, so the boundaries were blurred. We can move stuff on these new boards, so we will endeavour to do some housekeeping and shift new things to the correct area where necessary.

  • Makes sense re the divisions, but I suspect it hasn't been adhered to, hence my confusion.

    Ratty has the general idea spot on - ""Medical"" was intended for specific medical questions, whereas ""General"" was intended for any asthma-related stuff that was less specific. On the old board we couldn't move threads that had been created in the ""wrong"" place, so the boundaries were blurred. We can move stuff on these new boards, so we will endeavour to do some housekeeping and shift new things to the correct area where necessary.

    Thanks Peaksteve - I kind of thought that might be it, especially since once people start mixing things up it makes it harder to work out the difference; hopefully as you say it will be easier now you can move threads around.

    TJ, are there no forum rules about having a sig which gets tunes stuck in people's heads? ;) Especially for moderators, tut tut. hehe

  • TJ, are there no forum rules about having a sig which gets tunes stuck in people's heads? ;) Especially for moderators, tut tut. hehe

    Nope, not that I'm aware of, sorry :)!

  • As a moderator, I agree with Peaksteve and won't go over the same again.

    Would add though, no-one has been reported for use of particular shortened words or punctuation symbols. However, more forum terms and conditions are to ""Read your posts before submitting them ... writing on message boards is different to the spoken word, and a simple written comment may be unintentionally offensive to others""

    ""Avoid using ""text speak"" in your posts, as this can prove extremely difficult for users with dyslexia to understand""

    This is a forum for all, with or without asthma personally. Debate and discussion welcome but please keep it civil and friendly!

  • As a moderator, I agree with Peaksteve and won't go over the same again.

    Would add though, no-one has been reported for use of particular shortened words or punctuation symbols. However, more forum terms and conditions are to ""Read your posts before submitting them ... writing on message boards is different to the spoken word, and a simple written comment may be unintentionally offensive to others""

    ""Avoid using ""text speak"" in your posts, as this can prove extremely difficult for users with dyslexia to understand""

    This is a forum for all, with or without asthma personally. Debate and discussion welcome but please keep it civil and friendly!

    thank you for pointing out yhe dyslexia part tj as I am massivly dyslexic and have been struggling a great deal to read peoples threads etc which is one of the reasons i have quietened down a little as i dont want to have red something wrong and then replied with not helping people...i will apologise now if my spelling or grammer is wrong, as i say i have dyslexia and unfortunatly cant notice my mistakes...i dont do it on purpose, promise!! Xx

  • I'm so pleased that the General and Medical forums have been clarified as to what should go where because I have been unsure if I have posted messages in the correct discussion forum, now I know, so thank you.

  • I don't like to step into to many posts but I felt the need to comment

    I've been hanging around (in a nice way) the site for many many years now I've seen many users pass on I different ways And just wanted to say everyone is entitled to an opinion/belief ect in whatever it may be granny mo has made some very valid points in my eyes but most of all I just wanted to say everyone's different but let's all be civil we are a support network Arent we ?

    It's not nice reading comments that could upset others whether ment it or not ! Think this is where you say if youve nothing nice to say , say nothing at all !

    Sorry if I overstepped my mark abit :( Xx

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