Sleep Apnoea Forum Bringing Help + Support to the Patient
There is one thing that I pick up on throughout the forums that I visit is the differences in the way that various Sleep Clinics deal with us there patients.
There most definately seems to be a variation with regard to what they can and can't do, what is expected of us as patients and how much we have to do on a self help basis.
I consider myself quite fortunate that I am under a consultant who specialises in sleep medicine and the technician who I have regular contact with has a very proactive approach.
But there is a fine line between what they are prepared to do to help and what they are allowed to do to help.
I think the hardest thing to acheive is having some control over your machine, the particular machine I have seems to be the standard issue model used by the NHS, which is set up by the hospital and the only way to diagnose how it is working for me is to take it to the hospital and get them to download the data.
I have asked for a way to access the data myself on a regular basis so I can keep tabs on any changes but this is frowned on.
I even have managed to get the relevant software to analyse the data but I cant get hold of the data cards or a card reader to then analyse whats going on .
Its a shame that we can't access this data on certain machines as it would save on the already stretched resources at our clinics.
I am probably not far wrong when I say that the UK is very much behind the rest of the world when it comes to diagnosis, treatment, analysis, help and follow up of our condition, and it's only due to patients on forums like this that we can share our experiences and offer support and help to our fellow "HoseHeads"
The best piece of advice I could share as a footnote to this post is never be afraid to ask questions, not only at the clinics but in forums such as this we are not alone in all of this, we share a common bond, we all go to sleep with an alien strapped to our faces, or looking like fighter pilots when we go to bed.
Sleep well all :)
Views: 218
Hi Tiger
No I have never actually seen or heard Dr Wilkinson! I assume she does exist - at least she signed one letter to my GP at the outset!
Interestingly I was told by one nurse, quite solemnly, that I must switch the entire CPAP machine off at the mains every morning "because otherwise the heater in the humidier will overheat and catch fire".
I wonder if it was the same one as the nurse with your "exploding lungs" warning.
They must think we were born yesterday.
The reason I asked about the oximeter is that I have the CMS50F and am still trying to interpret the results properly. This is the wristband version. I am thinking of setting up a new discussion thread specifically on oximeters, so that we can all help each other. Rock has also said that he would be happy to help us - his expert input would be invaluable.
No, it was not me masquerading as a Hadley - I have only been in Southampton for a mere 5 years and my vast sailing experience consists of various cross-channel and other ferries only - a real landlubber I'm afraid. Should I admit that, living here?
Tigers Fan said:
Hey JohnHave you ever met the elusive Jane Wilkinson, consultant? I have not even seen her at a remove as far as I know. How about Male Nurse "Pate"? Ain't he a cracker? He tried to give me a lecture on why I shouldn't adjust my (their) machine myself (as if they know how to!!) and the best end shot he could come up with was that if the machine malfunctioned and exploded my lungs, I wouldn't be able to claim on the NHS. Apart from being dead, there are legal reasons why not?
My oximeter is a Contec CMS60C - the sort with a long lead on the sensor. If you invest in one of these, I recommend buying a meter of 'Velcro cable tie', also from eBay, to make a finger ring and a bracelet to control the sensor cable. Symmit uses the wrist-watch style from the same people - he put me onto them.
I don't suppose you are 65, know what TGS stands for and used to sail a GP14 out of Eling? Went to sea on deck? I remember him as Hadley, but you never know.
TF
John Hedley said:I was going to say that we share similar hospitals - then I realised that we were both in Southampton, which explains it!!
Which pulse oximeter are you using please?
An oximetry thread would be good! The easy way to interpret the reults is to compare the summary with the charts - identify the words and numbers of the summary with points that are events (black overhead markers) on the charts.
My theory on the elusive Wilkinson is that she does not exist, in fact - she is merely a payroll name, her salary shared out by the others. Ask yourself, is such a poor department more likely to be lead by a consultant or by the staff? Mind, maybe she does exist and just never bothers to come in from the golf course or where-ever - which is kind of the same thing. (Scoff not! my NHS manager got away with it for a couple of decades!)
TF
John Hedley said:
Hi Tiger
No I have never actually seen or heard Dr Wilkinson! I assume she does exist - at least she signed one letter to my GP at the outset!
Interestingly I was told by one nurse, quite solemnly, that I must switch the entire CPAP machine off at the mains every morning "because otherwise the heater in the humidier will overheat and catch fire".
I wonder if it was the same one as the nurse with your "exploding lungs" warning.
They must think we were born yesterday.
The reason I asked about the oximeter is that I have the CMS50F and am still trying to interpret the results properly. This is the wristband version. I am thinking of setting up a new discussion thread specifically on oximeters, so that we can all help each other. Rock has also said that he would be happy to help us - his expert input would be invaluable.
No, it was not me masquerading as a Hadley - I have only been in Southampton for a mere 5 years and my vast sailing experience consists of various cross-channel and other ferries only - a real landlubber I'm afraid. Should I admit that, living here?
Tigers Fan said:
Hey JohnHave you ever met the elusive Jane Wilkinson, consultant? I have not even seen her at a remove as far as I know. How about Male Nurse "Pate"? Ain't he a cracker? He tried to give me a lecture on why I shouldn't adjust my (their) machine myself (as if they know how to!!) and the best end shot he could come up with was that if the machine malfunctioned and exploded my lungs, I wouldn't be able to claim on the NHS. Apart from being dead, there are legal reasons why not?
My oximeter is a Contec CMS60C - the sort with a long lead on the sensor. If you invest in one of these, I recommend buying a meter of 'Velcro cable tie', also from eBay, to make a finger ring and a bracelet to control the sensor cable. Symmit uses the wrist-watch style from the same people - he put me onto them.
I don't suppose you are 65, know what TGS stands for and used to sail a GP14 out of Eling? Went to sea on deck? I remember him as Hadley, but you never know.
TF
John Hedley said:I was going to say that we share similar hospitals - then I realised that we were both in Southampton, which explains it!!
Which pulse oximeter are you using please?
QUOTE: "The reason I asked about the oximeter is that I have the CMS50F and am still trying to interpret the results properly. This is the wristband version. I am thinking of setting up a new discussion thread specifically on oximeters, so that we can all help each other. Rock has also said that he would be happy to help us - his expert input would be invaluable."
I hope you will start the Oximeter Thread John as it will help lots of people :)
No sooner said than done Kath. New discussion now posted
Kath Hope said:
QUOTE: "The reason I asked about the oximeter is that I have the CMS50F and am still trying to interpret the results properly. This is the wristband version. I am thinking of setting up a new discussion thread specifically on oximeters, so that we can all help each other. Rock has also said that he would be happy to help us - his expert input would be invaluable."
I hope you will start the Oximeter Thread John as it will help lots of people :)
Can't stop myself telling the tale of my first 'sleep' study - the nurses wore high heels and clip-clopped around the ward all night between chats on the ringing ward phone,, they started off by setting the low oxygen alarm incorrectly so as soon as I did drop off the alarm woke me (and the rest of the ward) up again, they set the pressure to 15 from the off and declared me fixed because that stopped me having apnoea's - no attempt to find the minimum (and hence most comfortable) pressure. They woke everyone on the ward up at 6:30 am for breakfast, 'Sleep' study? - what a joke. I too have decided that the best person to monitor my apnoea is yours truly.
Can't stop myself telling the tale of my first 'sleep' study - the nurses wore high heels and clip-clopped around the ward all night between chats on the ringing ward phone,, they started off by setting the low oxygen alarm incorrectly so as soon as I did drop off the alarm woke me (and the rest of the ward) up again, they set the pressure to 15 from the off and declared me fixed because that stopped me having apnoea's - no attempt to find the minimum (and hence most comfortable) pressure. They woke everyone on the ward up at 6:30 am for breakfast, 'Sleep' study? - what a joke. I too have decided that the best person to monitor my apnoea is yours truly.
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