"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
New Treatment For Sleep Apnoea - Please Fill In Survey To Help!
***UPDATE 19TH JUNE 2014***
The survey linked to this original post is closed and the new survey link is https://www.surveymonkey.com/s/Apnoea Please see new post about this treatment http://hope2sleepguide.co.uk/forum/topics/survey-to-help-with-new-n...
Dr Joerg Steier has contacted me regarding a new project they are working on at St Thomas' Hospital in London for alternative treatment to CPAP. Their London Respiratory Muscle Group, around Professors John Moxham and Michael Polkey, have studied non-invasive electrical stimulation of the upper airway in sleep apnoea with successful results. (There are currently some other similar treatments available in the US which require an implant, but this new proposed therapy does not need this (you can see diagrams in the CHEST article). However, in order to further commit to this project they have applied for funding from the Medical Research Council (MRC) to run a randomised controlled trial. This would allow them to offer this treatment to NHS patients and establish a novel alternative therapy for sleep apnoea. So far, the MRC like the idea and the funding proposal has gone through to the 'final decision round'. Before a decision is given though, the MRP would like to know how this project is regarded by existing sleep apnoea patients. To view more details of this treatment, there is a pdf document you can view of an article which was posted in a recent publication of CHEST.
So how can we help them? I have designed a short survey (link below) that we can all fill in and I can then send Dr Steier the results to help them with their project. Whilst the majority of us are satisfied with our CPAP therapy, albeit dealing with a few frustrations along the way, there are people who cannot tolerate CPAP therapy for different reasons and these people would really benefit from this new therapy. Additionally, were it to prove highly successful, there's no knowing whether other CPAP users may wish to change to this therapy instead.
SURVEY LINK
Views: 1468
Replies to This Discussion
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Permalink Reply by Kath Hope on
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Very strange. I'm using Firefox and it's fine. Have also checked the survey and another 2 people have filled it in during the past 2 hours. I've only had one person who had difficulty and she was using her Blackberry. Try this link SURVEY
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Permalink Reply by snoreyhead on
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I have tried it on my laptop Windows XP and it works fine. It may be something to do with Windows 7 and certificates. feel free to remove my posts on this subject.
Kath Hope said:Very strange. I'm using Firefox and it's fine. Have also checked the survey and another 2 people have filled it in during the past 2 hours. I've only had one person who had difficulty and she was using her Blackberry. Try this link SURVEY
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Glad you've got on. Having said that I'm on Windows 7 too - strange! I won't remove the posts in case anyone else has similar issues.
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Good news that all protocols have been passed for the new alternative Electrical Stimulation Treatment for sleep apnoea. Guy's & St Thomas' have now been given NHS Permission to go ahead with the study and initially priority has to go to newly-diagnosed sleep apnoea sufferers, although consideration will be given to those struggling with CPAP or other treatments. Do bear in mind the actual treatment will not be available immediately, but the trials for the study are now taking place. Anyone interested should email Dr Martino Pengo at martino.pengo@gstt.nhs.uk. Do bear in mind that any study trial will take place at Guy's Hospital, London in their Sleep Lab for 3 nights.
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Permalink Reply by Maria Bryan on
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Sorry Kath,
Tried via both links, but get a message saying the survey has been closed
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Permalink Reply by ALAN NASH on
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survey closed? had 2 surveys at St Thomas with team,very thorough,I think this is the way forward but funding must be forth coming to help thousands of sufferers..my life works around sleep apnoea.give money to a worthy cause.
HELP US ALAN NASH
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Sorry folks, I messed up (dizzy blonde moment and then had to go offline for a few hours). I forgot to put in the link to the new survey so here it is https://www.surveymonkey.com/s/Apnoea and have added it on the original discussion as this is the old one.
Running away to hide now.......
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