"Hi
My sleep clinic discharged me, saying they were happy I was self-managing. Roll on a decade and the cardiologists taking care of me were very unimpressed and I was re-enrolled. I expect remote monitoring with current generation Resmed…"
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: 224
Replies to This Discussion
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Permalink Reply by John Hedley on
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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!!
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Permalink Reply by Jackie on
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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 :)
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Permalink Reply by RockRpsgt on
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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.
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Permalink Reply by Kath Hope on
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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.
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Permalink Reply by Tigers Fan on
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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.
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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
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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
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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?
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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 :)
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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
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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?
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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 :)
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