how many masks have you been given?

[Chivalry]

Ok,,, im just curious as to how many masks other people have been given untill either they have been given the 1 thats right for them... or there refused any more.. (as this is what happened to me yesterday!)
Basicly went to my drop in center with the same problems .. leaking mask waking me up multiple times during the night..
So far.. when i first went to collect my machine i was given a mirage liberty in small.... which leaked alot,,, went back following week and was given a hans rudolf 7600v2... which was awfull... very hard against my face to the point of being painful in a couple of spots... and was very hard to exhale while wearing it too.. also got leaks,,
Went back last week .. and was informed i had been given the wrong size of mirage liberty in the first week,, and was now handed a medium... but i have the same probs with the medium i had with the small.. :0(

So went yestday.... extremely apologeticily as i know they all have to work to a budget... and unfortunaly got the same unhelpfull technition i have had a couple of times b4,, (same one gave me the wrong size mask to begin with)
and was basicly told i had tried all there masks??? and there wernt able to offer any more help...
I was made to feel like it was somehow MY fault that the masks didnt fit... and she had an impatient and frankly `put out` attitude that i had turned up with the same problem again...

I cant help get the feeling that she was under the impression that if the 1 hybrid mask i had tried.. and the 1 full face i had tried didnt fit me.... then i was beyond help as none of them would,,, which is rediculous as all i have read on these forums and others is that each mask fits differntly.. regardless of style..
I almost felt like she was accusing me of just trying to get masks out of them for the sake of it....
So i was sent home to make the best of the mask i have......


Anyone else had similer experiances? or is it just me...

[Grumpy]

fitting

Didn't you try the mask on at the clinic?

[symmit]

As I am "on my own" out in the private world I have to spend my disposable income on these overpriced things we call "masks"...

You NHS trust has a duty to ensure you get the best possible care, unfortunately it probably has a narrow contract of supply with regards to its CPAP consumables. I have the advantage that I can choose from almost any product on the market, and have quickly researched and found two that work for me.

I've read elsewhere that manufacturers do fitting sessions, it may be worth seeking one out and buying whatever works for you - I hate to say it but I doubt the NHS can suit anything outside of about the 85th percentile of patients.

So maybe others here can help out with recommendations - could you drop a post stating what you've tried and why it didn't work for you.

[Tigers Fan]

Same old same old

Your story is not unfamiliar, Chivalry. I've been in the goodie locker at Southampton and they are not telling lies - they really only dispense these few types.

NHS - make sure you try the mask on at your max pressure, preferably lying down. If they can't stop it leaking and you can't stop it leaking - it isn't for you.

Respironocs and Resmed do mask fitting sessions at their sllep centres. Cost was £25. You can try all their masks at your max pressure, lying on a comfortable couch, with two very personable young women to demonstrate and adjust the mask on you. It is very hard not to buy one to take home - mask, I mean! This is a good investment because you can try all the types of mask not just a few models. Of course, you can wiggle and squirm and turn over to check for leaks, too.

TF

[Chivalry]

Didn't you try the mask on at the clinic?

yup..... but sitting in a chair for 30 secs isnt comparable to 6 hours rokking around in bed

And as i mentioned in an earlier post... the technition didnt even know to turn the pressure up,,, she just turned the machine on and let it sit at its starting pressure (4) while she declared " i cant see what the problem is its a perfect fit as your machine has a green smily face..."

As for the ammount of items on offer... i know for a fact they have at least 2 other masks from resmed they supply.. the quatro and the new quatro FX... as well as the fisher piykel(sp?) masks... and some philips ones...

She was just determined not to try any more masks.... she even suggestedi should try facial surgery to extend my jaw instead!!! what the hell?

[Floatyboaty]

Did you take the other masks back or are you collecting them? They do sterilise and reuse (If they don't then they flipping well ought to!). So maybe if you haven't taken them back, do so, also ring first and see who is on duty before you go, you might get a different technician that way. Their job is to ensure that you are compliant, if the mask don't fit then you are not!

[Tigers Fan]

Goes to show!

There are still a great may of us who believe that we can take the word of medics - from consultants to technicians - as gospel, despite many posts that prove we cannot and should not.

My mask does not fit your face becomes your face does not fit my mask so get your face altered!!

I don't know if PAPers get more mis-information than other patients but boy! do we get a lot. So called experts who know little or nothing about using the kit they dispense - and absolutely no experience.

The mask manufacturers' fitting session rooms all have beds/couches in them (in my experience) so you can test the mask properly. I've yet to see a couch in an NHS sleep clinic room (and they are brand new here in Southampton).

I think the moral of the story is that we check out on the forum whatever we are told by sleep techs.

TF

[Tigers Fan]

P.S.

Here in Southampton they will not accept back any mask taken out of its poly-bag, even for a second.

Also, they still only dispense whole masks. You need a new seal and a new headgear? Have a new mask!

TF

[silvercarper]

They supply masks !!!!!!!
I have to buy my own. GRHHH
All right for some.

[symmit]

Maybe someone like Intus could book some hotel rooms and have regional mask fitting and sales sessions?? Surely the manufacturers will happily sponsor the event, it's not as if there's no benefit for them selling a few pence worth of plastic or cloth for a hundred pounds or more...

The whole thing appears very hit or miss, not enough masks are available as multi-size fitting kits, there should be some kind of scheme that gets you a starter kit of different sizes and types.

[Tigers Fan]

CPAP shops in the High Street!

[symmit]

TF - Why not?

Raise awareness, open shop, have a visiting consultant / sleep therapist or whatever who does the "official" stuff, have a fitting room, rent out sleep test gear, sell masks and supplies over the counter etc.

Could have it a requirement that manager has to be a CPAP user and then you'd actually have someone there who knew what it was like!

Problem would be making it work profitably, you'd need a high number of users in the catchment area who are financially able to pay for their care.

Of course, if the NHS were to make referrals they could even improve the standards of care, but I dread to think how one would make that happen.

What we need is the Chinese to start flooding the marked with CE approved APAP devices and low cost but comfortable masks, get the price point below that of a third flat screen TV and more people would skip the waiting lists.

Enough people are happy to pay £30+ per month for contact lenses, £20+ per month for private dental cover etc. If I buy a new APAP every three years and a new mask every six months that's about 30 quid a month, allowing a bit for consumables.

For goodness sake, I just realised we were paying about £20 per month for breeders insurance on one of our dogs!

The choices are still there, NHS dental care and free glasses still exist for those who want them.

[James @ Intus]

Maybe someone like Intus could book some hotel rooms and have regional mask fitting and sales sessions??

We've been toying on and off with the US style mask fitting insurance idea but logistically, it's a big puzzle to solve. It works when you hit certain numbers, but it's just not comparable here in the UK to the US.

Mask fitting will always be an issue as it's such a personal thing. We explain up front when people ask us to recommend masks on the phone that it's a mission impossible. We could get 100 people raving about mask ABC but you may hate it. You could do an hour's worth of fitting, lying down in a clinic, but unless you fall asleep, or are induced, you can't mimic the facial muscles relaxing.

So it's not a matter of providers/clinics/us not wanting to help, it's just very, very difficult.

in Germany they trialled a custom mask making process for a while, but even that wasn't fool-proof. With moulds on your face etc. To what extent does one need to go until you can say "this works" in terms of a mask fitting procedure. It's a hard task. And ideally, you'd get unlimited masks on the NHS and the ones you don't get one with, can be sterilized and used by the next one. But we're not living in this ideal world so it's indeed difficult, for all parties involved.

So if you finally do find a mask that's close to perfection for you, make sure you keep enough spares etc. as it does happen that manufacturers stop making it (like the ComfortCurve) and then you are bereft of your favourite mask.

As far as high street locations go, that only just starts popping up in the US, where everybody knows what a CPAP is. It's a long way off here. Unless you can go to Harley Street and don't mind paying £500 for a mask of course. We'd have to diagnose and put on CPAP all those hundreds of thousands of Brits before CPAP is such a mainstream diabates-like topic that walk-in shop like situations become possible.

[Barely Awake]

So if you finally do find a mask that's close to perfection for you, make sure you keep enough spares etc. as it does happen that manufacturers stop making it (like the ComfortCurve) and then you are bereft of your favourite mask.

Not just a favourite, this was the only mask I found I could use. Other people could unwittingly be in a similar position, relying on a particular mask only to find out you cannot obtain a replacement after production has ceased. Personally I feel the manufacturer could inform the end user if production of a unique mask ceases - what does anyone else think about this?

[KarenH]

Can't return masks at James Cook Middlesbrough

Did you take the other masks back or are you collecting them? They do sterilise and reuse (If they don't then they flipping well ought to!). So maybe if you haven't taken them back, do so, also ring first and see who is on duty before you go, you might get a different technician that way. Their job is to ensure that you are compliant, if the mask don't fit then you are not!

Hi I know you suggestion seems sensible, however, I returned a mask I had only tried on two nights and was told they cannot take them back as they do not know what you may have done to them. As a middle aged social worker I do not see myself as some sort of terrorist but perhaps others do!