"It sounds like you're getting rainout issues (condensation) so here's an article to help with this.
www.hope2sleep.co.uk/water-in-the-mask-hose-known-as-rainout"
Sleep Apnoea Forum Bringing Help + Support to the Patient
Sleep Clinics Help Or Hinderance.
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: 190
Replies to This Discussion
-
Permalink Reply by John Hedley on
-
Those of us who are unlucky have a basic M-Series CPAP given to them which has no data collecting ability at all, save for usage statistics (which the clinic do not check anyway).
Ironically I would not have a problem sourcing the card, reader and software for that machine (unlike others), but if I fit a datacard, it will still not give me any information re AHIs etc.
There is not much point in my asking the clinic any technical questions on my annual "check-up" because it is nurse-led, and the nurses know a lot less than their patients about CPAP matters!!
C'est la vie!!
-
Permalink Reply by Jackie on
-
round of applause - well said :)
too much conflicting info every time I saw a different person at hospital.
The hospital demand that you write in for supplies parts etc and this is a pain and the last one I did got lost somewhere in their system so I asked about emailing - no they said. Saw doctor in November and asked him and he said he would look into it.
Got a letter eventually from the doctor with an email address to use ....
Great I thought ------- but you get an out of office reply saying it will take upto 21 days to process my email !!!!
technology at its finest!
sweet dreams :)
-
Permalink Reply by RockRpsgt on
-
I do understand the fine line you talk of. My stand on sleep and patient advocacy has landed me in the hotseat on may occasions. I lost a job due to my involvement with SG's sister site. There was more to it then that but the final decision was based on sleepguide.
What do the fully data capable machines cost in the uk? I highly advise getting one. The Resmed S8 is an older model that I would put up against any newer version.
-
Permalink Reply by Kath Hope on
-
Crikey Rock - sounds like you've got yourself in a heap of trouble in the name of speaking out the truth!
Fully date APAP's (like the Respironics PR One + Devilbiss Sleep Cube - called Intellipap in the US) are around £500 = approx $800) without the software etc.
-
Permalink Reply by Tigers Fan on
-
I like my 'M' Series Standard Issue NHS CPAP that records only usage figures. I have two ways around the data problem - use te 'M' Series APAP I bought privately in the States or use the pulse oximeter I bought on eBay for £75 out of China. The oximeter shows the data in a different way but tells me exactly when I had an apnoea, duration, O2 % dip, pulse and it counts all the events and tabulates them. To a trained Medic I'm sure it would reveal much more, but that info enables me to see the effects of tweaking my pressures, using C-Flex and how much, etc.
-
-
To answer the thread title - I think they are a hindrance but a necesary evil, given our health sytem. My clinic have yet to show me any sign of OSA knowledge beyond dispensing CPAP machines - mind, it is a Respiratory Centre rather than a Sleep Clinic. You can't get a new cushion for your mask, or a new headgear - you can only have a new, complete mask.
The up-side of them being all but useless is that I am now a proficient and dedicated DIY PAPer, absolutely in control of my own therapy. Just how I like it.
Tip for those who think they are too fat - buy jeans several sizes too large. How can you be fat if your jeans fall down as soon as you loosen the belt? Fun can be had at airport security, too.
TF
-
-
Great to share humour on here. Mind you, you have to have a sense of humour don't you when you dress up every night for bed looking like Darth Vader? LOL
How often does your clinic give you a full new mask then if they can't supply the parts?
Tigers Fan said:To answer the thread title - I think they are a hindrance but a necesary evil, given our health sytem. My clinic have yet to show me any sign of OSA knowledge beyond dispensing CPAP machines - mind, it is a Respiratory Centre rather than a Sleep Clinic. You can't get a new cushion for your mask, or a new headgear - you can only have a new, complete mask.
The up-side of them being all but useless is that I am now a proficient and dedicated DIY PAPer, absolutely in control of my own therapy. Just how I like it.
Tip for those who think they are too fat - buy jeans several sizes too large. How can you be fat if your jeans fall down as soon as you loosen the belt? Fun can be had at airport security, too.
TF
-
-
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?
-
-
I'm pretty much self sufficient, I did my sleep test at home from an online provider, bought my own APAP and oximiter and for a few weeks sent data to and fro. Now I probably only check in every couple of months, and tweak the minimum pressure up or down 1 notch as required. It's actually very easy to do after a bit of support and experience.
I took to therapy very quickly, if the NHS worked more in this way with patients that can then costs would be reduced and outcomes would be better for those patients, and clinics could spend more time with those that need the hands-on approach.
Cost in the difference an Auto-CPAP machine with data adds to the cost of therapy over five years and it's negligable, if that results in better outcomes and fewer clinical or surgical interventions then surely it's got to be a better idea.
If anyone wants to set up a private clinic with full telemedicine I can provide hardware and software :)
-
-
Every year at review, I ask for a cushion and headgear. Every year, that is impossible and I'm given a brand new, in-the-wrapper, complete mask. Inside the wrapper of every mask is a parts list. Being Resmed masks, they all come with a medium headgear - useless to me. It took a year, but last time they eventually supplied a large headgear. Using retail prices, I wanted £70 worth but had to take £150 worth to get what I needed. Cost cutting NHS? First, they need to know what they are doing!!
This year, I want a Quattro FX mask and large headgear. Freakout!! They don't stock those, even if they are cheaper than an old Quattro, I bet.
Kath Hope said:Great to share humour on here. Mind you, you have to have a sense of humour don't you when you dress up every night for bed looking like Darth Vader? LOL
How often does your clinic give you a full new mask then if they can't supply the parts?
Tigers Fan said:To answer the thread title - I think they are a hindrance but a necesary evil, given our health sytem. My clinic have yet to show me any sign of OSA knowledge beyond dispensing CPAP machines - mind, it is a Respiratory Centre rather than a Sleep Clinic. You can't get a new cushion for your mask, or a new headgear - you can only have a new, complete mask.
The up-side of them being all but useless is that I am now a proficient and dedicated DIY PAPer, absolutely in control of my own therapy. Just how I like it.
Tip for those who think they are too fat - buy jeans several sizes too large. How can you be fat if your jeans fall down as soon as you loosen the belt? Fun can be had at airport security, too.
TF
-
-
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?
-
-
Hi symmitA favour of you, please. In order that certain less than desirable individualds don't migrate here, please don't advertise this forum on another we share. PM your chums and let others find it for themselves, I say.
TF
symmit said:I'm pretty much self sufficient, I did my sleep test at home from an online provider, bought my own APAP and oximiter and for a few weeks sent data to and fro. Now I probably only check in every couple of months, and tweak the minimum pressure up or down 1 notch as required. It's actually very easy to do after a bit of support and experience.
I took to therapy very quickly, if the NHS worked more in this way with patients that can then costs would be reduced and outcomes would be better for those patients, and clinics could spend more time with those that need the hands-on approach.
Cost in the difference an Auto-CPAP machine with data adds to the cost of therapy over five years and it's negligable, if that results in better outcomes and fewer clinical or surgical interventions then surely it's got to be a better idea.
If anyone wants to set up a private clinic with full telemedicine I can provide hardware and software :)
About
Sleep Apnoea Forum
New to the Sleep Apnoea Forum?
1. Stop by our Sleep Apnoea Welcome Center to introduce yourself to the SleepGuide community.
2. Start a New Topic of Conversation.
3. Post your photos - of yourself, your old CPAP machine, your new CPAP machine, your pet, something about you!
Interested in advertising, have a problem or need to contact us? Click the Report an Issue page.
Latest Activity
noisy humidifier normal?
Hello,I have an air sense 10 auto.When I have the humidifier and the heated tube plugged in it makes a sort of drumming noise. Like that at the gallows in films.Is this normal? It wakes me up and I have to give up and switch off for the night.See More
Dentists in Hull that know about Mewing ?
I was wondering if there are any dentists in Hull who know about John & Mike Mew, and changing jaw shape over time?I could add that I saw an ENT consultant recently and she said jaw shape, malocclusion, is genetic, which has become a debatable…See More
"I did replace the tank in my SleepCube, and had to regularly take the silicone sealing gasket out and give it a goof clean, but not infrequently found it standing in a pool of water in the morning. The machine sat on a tray because of…"
Nasal valve collapse
Does anyone have any experience of nasal valve collapse?Wondering if I have this but I don't know what the norm is.Been trying widgets that hold the nose open and it's like night and day.See More
"Wow it's the other way round for me.I found with the Sleepcube I'd often have a good bit of water still there in the morning. Today I woke up with a dry tank on the Resmed again and it's not on full heat or flow. I got it on 6…"
F20 AirFit small marking bridge of nose
Please help or give advice all wise people on here.I have had the Resmed F20 AirFit small mask for over a month. Seals yet…See More
"A very helpful reply Jonathan. I found the pressure setting for the full face mask to be too high when I changed to a nasal mask, but perhaps I should have persisted?
I'll try again and I'll also discuss with the clinic whether an APAP…"
"Ramble alert! My history is that I spent part of each week at a different location, so bought a second machine identical to my fixed pressure NHS machine and set it up to match using the clinician menu. This was a very long time…"
"Thanks Jonathan - I had seen the YouTube video. My question is really about the experience of people who have control of their pressure settings, for example those people who have bought their machines directly and not obtained them through an NHS…"
"This is NOT a recommendation
http://www.youtube.com/watch?v=VNUWhd2UgQM"
Air Sense 10 - changing pressure settings
I have been successfully using my air sense 10 since OSA diagnosis, and my AHI is now under 2. I had an appointment with my clinic this week and have been told there is no need for further appointments and just to contact them if I need supplies or…See More
"If you have a helpful GP, I would ask them to re-refer you to the sleep clinic."
A few questions..
A quick bit of backgroundDiagnosed with OSA about 7/8 years ago by my local sleep clinic and given a F &P Icon CPAP. After a couple of follow-up appts to sort out any issues, I was sent on my merry way. I have had no further face to face…See More
"I previously had a DeVilbiss Sleepcube and the dehumidifier did sometimes run dry. On the other hand I now have an AirSense 10 and it never runs dry, and I've had the humidity turned up high."
Airsense 10 -humidifier runs dry
Hi. I'm finding the Airsense 10 the hospital gave me, the humidifier chamber runs dry. It's not even on max settings, which I'm guessing would empty it a lot quicker. Seems like a big design oversight to me. Does anyone else have this trouble? The…See More
Decline in hearing
HiI have regular, well yearly check ups at work. One being a hearing test. Since having my cpap machine my hearing has declined rapidly in 1 ear.....could this be as a result of pressure? I believe I'm on 15cm p max h2o. I just use a nasal…See More
© 2024 Created by The SleepGuide Crew.
Powered by
