Forums a Danger!!!

[Sparticus]

According to my specialist forums are full of idiots talking about things they have little knowledge in.

After being called into edinburgh for talks with my specialists due to complaints I had made I was quite taken back on the things they said about forums including alot of people on them just lie about having OSA and the charts they aquire are just copied of medical sites. He told me and showed me that I was doing well with an AHI of 2-4 and that I shouldnt mess with something thats working. Having slept like a log last night "WITHOUT" my apap and dont feel to bad, my machine will stay in its bag until I feel I need it again if not it will go back forth with.

I do agree with my doc that chart subjects and the supporting of changing peeps preasures is a dangerous thing to do and should not be supported by the forum as they are not qualified to give such advise and are leaving themselves wide open to be sued!

After being told all I talk is drivel I have stopped posting on the forums which to some members on here will be happy with that but to my friends I hope all is well and that you stay in touch, Ohcrob wait for me mate!!!

[Fredxx]

Sounds like you Specialist is that special kind of idiot that reckons he knows everything and nobody else knows anything - something that is more dangerous than everything else put together. Consultants who are not prepared to openly discuss your condition with you, and help empower you to manage your condition "I know about your condition, so you have to do what I say", are completely out of touch with the modern world and the BMI guidelines.

In my experience, the best clinics are the ones that are happy to discuss your condition with you, and take the time to work through why something you might have heard is wrong, not those who just say "don't talk to anyone else with the condition, they will only tell you rubbish". Consultants that act like that are just insecure in their knowledge of the subject, and don't want you in any position to question their expertise. Pathetic really.

Yes, Some people on forums can give bad or even dangerous advice, but there is also some very good helpful stuff out there as well. The real position is that you have to approach what you read on forums with appropriate skepticism and handle the information accordingly. I would never take as gospel something I heard in one place without doing more research into it.

You say he showed you you were doing well with an AHI of 2-4 - yes, that is true that you are doing well then (surprisingly, that is what the advice on the forum says as well). You don't say how he measured your AHI - did you do another sleep study? did they give you an oximeter to use? did he take a reading off the machine? If they did, great, sounds like you are getting appropriate treatment,if not appropriate communication.

The advice on the forum has never, as far as I can see, been to change the pressure yourself, always to go to the clinic as a first port of call. The advice has been given though that if you are going to change it...small amount and try for a few nights - hardly something that is going to get you sued.

If you do decide to leave, good luck with your continuing quest for health and your dealings with the NHS. As for me, I will be continuing to talk to people here, and to help people get answers to the questions they can't get answered at their clinics.

[silvercarper]

To stop using your machine and only using it when you feel the need is completely bonkers!

I hope you dont drive or do you consider "feeling the need" when you full asleep at the wheel.

[Dead Short]

Forums a Danger?

I agree that it is common sense to take specific advice with a degree of scepticism, although you should not disregard too easily comments made with long experience.

I do not underestimate the value of communication with others who are suffering from the same illness whether it be Cancer or OSA. Although nationally there may be a surprising number of people afflicted, SA and its treatment in my experience almost qualifies as fringe medicine. Tales of delay, lack of resources and skills abound. It is of comfort therefore to be able to discuss issues, let off steam and benefit from the experiences of others. Long live the Forum.

Dead Short (of breath)

[Berneta]

Too Much Knowledge

HI Everyone--I happen to believe that too much knowedge in the wrong hands can be a bad thing. I have never agreed that the majority of people on Paps should change their settings if the settings they have are the results of expert testing. If I changed MY settings myself it would invalidate my insurance and they would stop payment-- after getting that news from my Certified Respiratory Therapist. It seems to me that if you go to all the trouble of having tests and getting certified results from people who are Certified to handle Therapy--then what is the point in having the test done in the first place? On the other hand those who buy their own machine and need to know how to set it up can get that information here or in a booklet that comes with the machine. Those who get their machines through insurance may be risking losing the insurance. This forum is a great place to learn how to deal with the little problems that come up and even see some amusing conversations like Flirting or on Rugby. But perhaps the majority of people should not be messing with their settings--and if they feel they have a problem should go to their Clinic (or Dr) to arrange new testing. And of course we all know that there are situations that change the need for the Breathing Assistance. Some people lose a little weight and no longer need the machine for sleeping. I think we ( On the forum) are all smart enough to know whether or not we need the machine for breathing-- as we always get very tired if we need it and don't use it. So in my opinion too much knowledge can be misused. If I was giving out knowledge about how to change settings I would not worry much about being sued--I would worry that my advice might cause someone their death. I will continue to check in on the forum and give advice on the little health problems that arise with the use of the machine and mask--but I will leave the settings to the experts. xx Berneta

[dravidio]

According to my specialist forums are full of idiots talking about things they have little knowledge in.

After being called into edinburgh for talks with my specialists due to complaints I had made I was quite taken back on the things they said about forums including alot of people on them just lie about having OSA and the charts they aquire are just copied of medical sites. He told me and showed me that I was doing well with an AHI of 2-4 and that I shouldnt mess with something thats working. Having slept like a log last night "WITHOUT" my apap and dont feel to bad, my machine will stay in its bag until I feel I need it again if not it will go back forth with.

I do agree with my doc that chart subjects and the supporting of changing peeps preasures is a dangerous thing to do and should not be supported by the forum as they are not qualified to give such advise and are leaving themselves wide open to be sued!

After being told all I talk is drivel I have stopped posting on the forums which to some members on here will be happy with that but to my friends I hope all is well and that you stay in touch, Ohcrob wait for me mate!!!

Sounds like the medical profession is flexing its old "we know best" muscles and don't dare to question our expert advice. No you don't talk drivel Sparticus. Doctors and medical professionals owe their existence to serving their patients. Not the other way round. Time to de-mistify them.

[shuckie]

Sparticus

Having slept like a log last night "WITHOUT" my apap and dont feel to bad, my machine will stay in its bag until I feel I need it again if not it will go back forth with.

I have to confess, I'm confused. You know that you have sleep apnoea and you also know that you need your CPAP machine to prevent apnoeas in the night. Even though you may have slept one night without your machine and feel as though you have slept like a log, surely nothing has magically changed after your consultation which means you no longer have sleep apnoea? Without CPAP how can you be sure that you really are sleeping properly?

Although other members have been advised in other threads not to worry too much about a night or two without CPAP - for example, if their machine breaks and they have a wait for an appointment to get it repaired or replaced - I personally think it is even more dangerous to advocate an "I feel fine so I'm not going to use my CPAP until I feel I need it again" attitude.

With regards to advising people about changing settings, my understanding has always been that forum members are discouraged from advising others how to do so, and that if people insist upon changing the settings themselves then they are doing so by their own choice. People are also advised to change their settings gradually, or preferably discuss the situation with their clinician.

I'm sure that if Intus had any concerns about the advice being given out by forum members they would be deleting posts, sending private messages to individuals or taking other measures if necessary. I'm not a legal expert by any means but I don't think Intus could be held responsible for the opnions or advice of the forums members, especially when most people add a disclaimer such as; "I'm not a medical expert" or "...this is only my opinion".

It's a shame to see you go Sparticus as you've certainly been one of the more active and entertaining members since I've joined!


Take care

shuckie

[martin]

You cant abandon us ............ we need humour, wit and pictures taken in strange places (that look insane to try to get to) in weather that isn't designed for the human life form. As regards not using the machine, I had to do a couple of days without and while i could cope sleeping upright with nasal strips i wouldn't claim to have been 100% . (Though since it was a holiday I could blame the wine).

The medical stuff is only half what this forum is about and although i tend to blither, the exchanges on the more humourous/bleak end of hoseheadedness helped me with some stuff at the start (and the middle, and probably for a good while yet) as much as the doctors advice with the machine.
At least pop in every now and again to check we aren't talking about you behind your computer/human interface............anyway be well and keep climbing.

[jackyk]

why are you off sparticus? need your wit and wisdom on here. you dont talk drivel, dont let ANYONE tell you that , though i think i might know who you are referring too there.
rethink the need to stop using youre machine too, you have sleep apnea so should be using it,
keep in touch, add me on facebook if need be, u have my name from pm previously.

[Berneta]

I agree

Hi Graham. This place is so dull without you to add your wit and charm, and tales of climbing. Drop in more often. Like Jacky-- I would like to be added to your FB site as a friend. xx Berneta

[Sparticus]

Its seems that my hospital didnt like me complaining too much and sent their top man, Prof. A. Pap. Like the picture they took my arguments completely out of contex.

I have now been off my machine for nearly a week and I still feel as bad as when Im on it. Its nothing to do with preasures or leaks but other factors which again the doctors wont listen too but would act against me if I did say anything. Glad to see more new starts appearing and hope all are well, bye for now

[Berneta]

Cpap Problems

THE CPAP TEAM WE ARE ALL NOT WANTING TO SEE COMING OUR WAY! LOL. xx Berneta

[westozman]

hang in there

It sounds like your specialist is afraid of your ability to build knowledge of your own condition. Would money have anything to do with this??
I've been on this & other forums for about 6 months now & find them very helpful in understanding my OSA. After my sleep study, I didn't buy my equipment from the specialist, when he found out that I was buying from a cheaper source he didn't want to deal with me anymore.
Stick with your CPAP, trust your fellow hose heads on here after all we aren't motivated by anything except helping people with OSA, after all we all have experience of the condition which is worth a lot more than any text book will teach a doctor.

[James @ Intus]

Let's all put some perspective to it.

Facts:

1. Nobody should blindly trust healthcare advice from forums like this, or any forum for that matter. I hope we all realised that when we started here. You don't trust random strangers advice for stuff that influences your wellbeing. You read it, discuss it, learn from it, put it in perspective, use the bits you agree with or independently verify, you mix it with the advice form your trusted healthcare provider/doc/GP etc. and you carry on with life. So yuor specialist is right in that sense.

2. Few specialists enjoy being outsmarted by their patients. If you know what you are doing (and you so happen to know yourself better than the specialist, you are the specialist on you) or if you know better than him/her what you are doing, they will always slag off what you are trying to do.

3. Specific info on how to change machine settings aren't tolerated here. But if somebody links to a publicly available source, there's no point in stopping that. It's out there anyway, we just don't want it here. So if you see such info here (not a link, the actual info) report it and it will be removed. Indeed, it's never a good idea to change the pressure if you don't grasp the full extent of sleep disorders and its forms of treatments. Indeed, the specialist is right, it can be a dangerous thing to do (changing the pressure yourself).

4. It is equally, if not more dangerous to not get the treatment you need. So if you can't get help through the NHS, it's only logical people start to take matters in their own hands. What's worse, somebody upping their pressure from 10 to 14 or having to struggle on at 10, waiting for next year's 5 minute appointment?

5. Nobody should feel the need to leave a forum just because a minority call your posts drivel. Communication is a two way thing. The person talking can re-evaluate the way they talk but also, they recipient should ponder whether pershaps the person is posting with the best intentions, whether you agree with the topic or not. So I certainly hope you continue to hang around as a good number of your posts are very entertaining, helpful, useful, interesting or otherwise beneficial for the public reading this.

6. Calling forum users, when you don't know them individually, all idiots isn't nice. Calling a well educated, well intended specialist an idiot isn't the way forward either. Both groups can learn from eachother one way or the other! We'd very much welcome clinic staff and specialists to join the forum to give some apparently much-need clinical balance.

[Patsyw]

Knowledge

I have found my Sleep Scientist to be far more knowledgeable than my consultant. She also realises that I need to know and understand every little detail before I will make a decision about my own body and she is willing to listen and discuss everything I need to know - this is why I have respect for her knowledge. It comes down to `who do you respect`. Just because someone has passed exams and become a consultant, doesn`t necessarily mean they have the right attitude to individual dilemmas. All sleep professionals are only human and have their faults and biases - it comes down to finding one that you click with. If I got the slightest hint of a sleep tech or consultant having a superior `I know best` attitude, I would not see them again.

As for forums, I don`t know how I would have managed without this one, even though one has to be discerning about some of the advice being given.