"Hi
The SleepCube was a private purchase, as way back then my local sleep clinic assessed patients by filming them overnight, whilst wearing an oximeter, and only issued CPAP machines without humidifiers. There was no remote monitoring and…"
Sleep Apnoea Forum Bringing Help + Support to the Patient
Study Trials for New Non-Invasive Electrical Stimulation Therapy
LATEST UPDATE (24/7/15)
ONLY 3 remaining places left for people wanting to be part of the study for the proposed alternative Non-Invasive Electrical Stimulation Therapy for Sleep Apnoea (see below).
LATEST UPDATE (26/6/15)
Final Call for the 6 remaining places left for people wanting to be part of the study for the proposed alternative Non-Invasive Electrical Stimulation Therapy for Sleep Apnoea. They are particularly looking for patients with diagnosed Obstructive Sleep Apnoea who struggle with CPAP. Whilst it would be more convenient for those living in the London area, anyone is welcome who are willing to travel and stay in the Guy's & St Thomas' Sleep Disorder Unit for 3 separate nights. Also bear in mind that patients on CPAP/MAD must discontinue the treatment during the trial (approx 3 weeks or so).
People interested should email one of the following:-
Dr Martino Pengo - martino.pengo@gstt.nhs.uk
Kate Reed - kate.reed@kcl.ac.uk
Dr Joerg Steier - Joerg.Steier@gstt.nhs.uk
IMPORTANT UPDATE (28/1/15)
I've been contacted by Guy's & St Thomas' NHS Hospital to a special thank you to all of you who filled in the survey which helped them collect evidence proving the alternative treatment to CPAP is in high demand. Due to the fact they are about to finish the recruitment for the new Non-Invasive Electrical Stimulation Treatment, as an alternative to CPAP for suitable Obstructive Sleep Apnoea sufferers, they are looking for the last 15 patients for the trial. In particular they are now focussing more on patients with Moderate-Severe Obstructive with a BMI<40 - possibly living close to London or in South of England.
If interested email martino.pengo@gstt.nhs.uk OR joerg.steier@gstt.nhs.uk
Will everyone please fill in this short survey, as requested by Guy's & St Thomas', regarding the new Non-Invasive Electrical Stimulation Therapy as an alternative to CPAP for people who need this? CLICK HERE FOR NEW SURVEY
You may remember the original post about this with a link to full information published in CHEST, to help them get the funding needed for the trial http://hope2sleepguide.co.uk/forum/topics/new-treatment-for-sleep-a...
The trials are now currently underway with promising results, and filling in the survey will help this become another option for people. It is an anonymous short survey and can be filled in by people worldwide.
Thank you!
Views: 1432
Replies to This Discussion
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Permalink Reply by paula fry on
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Hi Kath, thanks for the info. I tried to reply soon after, but my computer was acting up and I couldn't send or receive emails for a couple of days, for some reason! it's settled down now thank goodness. Anyway, I took a look and the mask cushion does look interesting, but I'm with you re the shipping costs. It says the pack is for sizing only and includes a coupon for a free 2 pack of the chosen size, but I'm guessing that the same shipping charges would then apply again? Fortunately, the spots have improved a lot since I last wrote so I'm keeping my fingers crossed for now. I will look again if things worsen and if I do try them in the future I will definitely let you know how I get on with them.
Kath Hope said:Yes, it's worth trying all things to fix our problems Paula. I do remember you telling me about trying the sticky gel mask seals too. When I posted about the strap covers I did think you already had them, so now you've said the problem from is from the mask cushion that makes sense. Look what I found today on Ebay, and might be worth a try http://www.ebay.co.uk/itm/171324676090 The shipping is a bit expensive to the UK but they guarantee no import charges. Let me know if you try one.
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Permalink Reply by Kath Hope on
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IMPORTANT UPDATE
I've been contacted by Guy's & St Thomas' NHS Hospital to a special thank you to all of you who filled in the survey which helped them collect evidence proving the alternative treatment to CPAP is in high demand. Due to the fact they are about to finish the recruitment for the new Non-Invasive Electrical Stimulation Treatment, as an alternative to CPAP for suitable Obstructive Sleep Apnoea sufferers, they are looking for the last 15 patients for the trial. In particular they are now focussing more on patients with Moderate-Severe Obstructive with a BMI<40 - possibly living close to London or in South of England. If interested email martino.pengo@gstt.nhs.uk OR joerg.steier@gstt.nhs.uk
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I would love to have an alternative! The idea of sleeping without a mask n having a proper cuddle in bed would be amazing. I'd jump at the chance of the trial but not sure they want northerners!!!
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It's still worth dropping them an email Sara, as they only said 'preferably' down south, which I'm guessing is because it's easier to get there. If you can travel to London then I'm sure it wouldn't be an issue. Let us know how you get on if you decide to contact them.
Sara said:I would love to have an alternative! The idea of sleeping without a mask n having a proper cuddle in bed would be amazing. I'd jump at the chance of the trial but not sure they want northerners!!!
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Isn't Hungary close enough to London?:-) I would go for it.:-)
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Permalink Reply by Bill Thomson on
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Wonderful news, I seem to fit the criteria so I have emailed them.
Thanks Kath
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Ha Ha Piroska, Hungary is a little off the criteria map
Maybe in time, after all the trials have finished this treatment may be available closer to home!
Piroska Pogl said:Isn't Hungary close enough to London?:-) I would go for it.:-)
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Good luck Bill
Bill Thomson said:Wonderful news, I seem to fit the criteria so I have emailed them.
Thanks Kath
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They'd better hurry up.:-) And then it will take another 20 years to get it here.:-)
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Ha Ha, but meanwhile at least you have the gold standard of CPAP
Piroska Pogl said:They'd better hurry up.:-) And then it will take another 20 years to get it here.:-)
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Hopefully it will be permanent and not just for one day
paula fry said:Hi Kath, I've done the survey. I would LOVE to have an alternative to cpap. I have been using cpap for just over three years now and I'm 100% compliant, but I still keep getting spots on my chees where the mask touches, even though I use my cpap cream every night and morning. The spots are improving now but were very sore last week.
However, I just fall into the severe category too (32) so I guess the new treatment may not be an option for me either?
Hopefully, one day there may be an alternative for all of us! 
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Permalink Reply by Sleep2snore on
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I would love for this device to work, but I think it will only ever work with MILD O.S.A patients.
I don't think it would ever work for me, but if they want to send me one I will try it out
Shame as I would love to carry something around that is small and not the size of a couple of bricks!
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