"Just to tidy this up, I finally had an in-person review by my sleep clinic yesterday, who agreed the ResMed AirSense 10 was "wheezy" and replaced the machine."
Sleep Apnoea Forum Bringing Help + Support to the Patient
setting up a support group
does anyone have any advice on setting up a local OSA support group AlanJ
Views: 159
Replies to This Discussion
-
Permalink Reply by Kath Hope on
-
The best place to start for setting up a local support group would be with your sleep clinic. All the support groups are attached to hospitals, as you need the clinics imput to find the sufferers in your area. Many of them are happy to be involved - especially if they have willing patients like yourself to do a lot of their work and form a committee or such like. Let us know if you get one set up and of course I'll happily promote any events you have to others
-
Permalink Reply by Alan Jackson on
-
Thanks Kath.
The original approach to me was from the specialist sleep clinic nurse at my last clinic visit. It appears that there was a support group attached to the clinic some time ago but that seems to have "disappeared" over time, I guess through lack of support. I will certainly be looking for further information from the clinic before making any decision. However one of my thoughts is that if we were to proceed, whether a web based support group would be more user friendly rather than periodic meetings or perhaps a combination of both would be more useful. I'll let you know what happens next. In the meantime if anyone has any further advice please let me know.
AlanJ
Kath Hope said:The best place to start for setting up a local support group would be with your sleep clinic. All the support groups are attached to hospitals, as you need the clinics imput to find the sufferers in your area. Many of them are happy to be involved - especially if they have willing patients like yourself to do a lot of their work and form a committee or such like. Let us know if you get one set up and of course I'll happily promote any events you have to others
-
-
Sorry for the unavoidable delay Alan. It's a shame the old group disappeared, and this sometimes happens. St James, Leeds had a great group, but that too had to close
Strong backing from your clinic is definitely the right approach as you need them to be able to contact the local sufferers. I don't really think that web based support works locally, as the few support groups that do have websites don't get much interaction on them. For web-based support people tend to like forums and Facebook (the Facebook group I run has almost 4,000 members and is very busy). People like web support because they can speak with people worldwide, but local support groups are very much in demand. I'm going to two different events in Scotland next month and expecting good turn outs. It is hard work to set up the local events, but with good support from the clinic and having other local sufferers willing to help out, it's very much appreciated by people. Good luck if you go with it, and like I said, let me know if you do and I'll do what I can to get the word out.
-
-
Suggestions
Maybe piggybacking onto another event like diabetes or similar may assist
-
-
Thanks Kath I need to explore just how much support the clinic is prepared to offer.
Alan Jackson said:Thanks Kath.
The original approach to me was from the specialist sleep clinic nurse at my last clinic visit. It appears that there was a support group attached to the clinic some time ago but that seems to have "disappeared" over time, I guess through lack of support. I will certainly be looking for further information from the clinic before making any decision. However one of my thoughts is that if we were to proceed, whether a web based support group would be more user friendly rather than periodic meetings or perhaps a combination of both would be more useful. I'll let you know what happens next. In the meantime if anyone has any further advice please let me know.
AlanJ
Kath Hope said:The best place to start for setting up a local support group would be with your sleep clinic. All the support groups are attached to hospitals, as you need the clinics imput to find the sufferers in your area. Many of them are happy to be involved - especially if they have willing patients like yourself to do a lot of their work and form a committee or such like. Let us know if you get one set up and of course I'll happily promote any events you have to others
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
"thank you jonathan,i did get the it pack so tried the small and still struggled but i was sat up in bed so will try lying down great suggestion "
"Hi
My first thought is "don't panic"! We're all a bit different, and there are many things that can be tweaked. I took to CPAP therapy like a duck to water, but I've had friends who say they can't cope, but…"
1st time and I’ve failed the mask leak test
Hi everyone, today I received my rental kit - prisma smart max, plus a Philips dreamwear mask which I’ve been wearing unconnected to try and get used to it. I just did a mask fit test using a medium mask and got a constant red/orange leak warning…See More
Are every small CPAP machines any good?
Travel sized, micro - any good?See More
"Ha well it lasted a couple of days but started howling again. But it's a step in the right direction, just needs a bit more work."
"Nope, I just accept that some people's throats tend to close when they sleep, due to a loss of muscle tone during deeper sleep. Back when I was diagnosed, the sleep lab just filmed you whilst you slept, stuck an O2 meter on your finger,…"
"Did anyone tell you exactly what the anatomical issue is, Jonathan?"
"Can't say I know about this."
"So I tore some fabric from one of the filters and glued it over the holes - and it worked!It was dead quiet, and the air was still flowing freely.It was quiet all night then after a few hours a bit of whistling until I gave it a wipe.Vast…"
"Hi Jonathan, well see my nose is blocked a lot, so I mouth breath which really sucks a lot more moisture and makes my mouth dry. So I put humidity on maximum, which makes for condensation at the mask end, which becomes a demonic reed instrument.Now…"
ResMed AirSense 10 getting noisy
HelloI have an NHS issued ResMed AirSense 10 with heated humidifier. In the last couple of weeks, it's developed an annoying noise, when I inhale. It bothers me a little and my partner a lot! I sometimes get problems if the water container in the…See More
"Hi
My first question is why is condensation forming? I very occasionally get some condensation, may be once a month, but I can quickly run a finger around the inside of the mask, and wipe it away. I use a nasal mask, with the humidifier…"
"11K+? Ok that's probably where I should look then :-)"
"Hi John. Thanks for the compliment as I do my best popping on here, but it's difficult due to us now supporting 25k+ patients at the charity. To be honest, the forum is quiet because most people seem to prefer Facebook and forums aren't as…"
"There's some information here, but generally it's very common and likely due to our anatomy."
© 2024 Created by The SleepGuide Crew.
Powered by
