Where did it all go wrong?????

[Sparticus]

Today was my yearly appointment at Edinburgh Sleep Clinic. I left a about 90 minutes so I got there in plenty of time (but I never do) Was looking forward to seeing my nurses. Went up to the first floor rang the buzzer (Security) and my nurse informed me that I was in OPD1 now and that I would be seen there, so after directions of I strolled for the lift. After a wee walk I arrived at OPD1 waiting area to see a mobbed seating area full of nodding dogs (I think this is it) So I managed to find somewhere to sit without anyone drooling or snoring near me and after another wait of about 10 minutes I was called......

I sat down she checked my machine said everything ok, I said yes, she printed a piece of paper and said take this to reception goodbye..........

What the hell is going on here.........???

I was gobsmacked to say the least, I was lost for words as I left the room with my mouth open and went back to reception, I gave her my piece of paper and she told me to come back in "OCTOBER 2012"....... At this point I lost it abit and shouted "HOW FEKKIN LONG" which made several people jump and Im sorry to say one old boy fell of his chair and 2 ladies ran for the toilet as I think they may have been startled (Damp)

I almost felt like making sheep noises all the way out of the hospital. My opinion of today was "Nobody gives a shite anymore"

I finally realise that the NHS just cant cope anymore, I can see me buying my own machine at some point and just looking after my own interest.

[Barely Awake]

At one clinic I was told by another patient that they ask you to bring your machine in once a year ostensibly to test the electrical circuit and issue new filters, but primarily to make sure you still have the machine, are using it, and haven't stripped it and taken it apart. In other words its not a health check of you at all.

[Berneta]

OMG

Well --I would have been arrested-- as I stand up for myself and would have been raising a lot of hell, in a voice loud enough to carry to the Roof. They would have either have me thrown out--arrested-- or they would have checked ME out and answered my questions. My stress level would have been so high I would have gone into a Diabetic Coma. You don't need a gun to get attention--just guts. xx Berneta

[symmit]

Self help is the key here. Hopefully when GPs have more control the private providers such as Intus will be able step up and provide regular contact, remote monitoring and proper aftercare.

Regardless, for as long as I can afford it I'll be avoiding the NHS...

[Fredxx]

Don't you love the double standards they operate...

...You can't get to the interesting information and settings on the machines because that is what we are here for to help you using it; you can't do self help

...come back once a year and we will ask if you are using it, and check how many hours it has run for...we don't have time to give you more help...

[silvercarper]

She checked your machine !!!!!!
All I got was a Epworth and they did not bother to check my machine.
I wonder what the DVLA think of this lack of compliance check.

[Sparticus]

She checked your machine !!!!!!
All I got was a Epworth and they did not bother to check my machine.
I wonder what the DVLA think of this lack of compliance check.

No, the checking of the machine was 3 clicks to see how my hours were registered. They didnt even take the data to check what was happening "We dont do that anymore" Baaaaaaaaaaa Baaaaaaaaa sorry sheep mode was trying to kick in. Its not that I was in and out without so much as a AHI or a VSI or even a MASK LEAK mentioned. The poor lady doctor looked like she needed an hour of cpap with some neat O2. So thats me, I have to now wait 18 months before I get the pleasure, except Im not going to even bother traveling to Edinburgh, I will just phone in and tell them my hours, why should I bother if they dont. Oh and Berneta if shouting would have helped hen, I would have gladly but it would have only woke the patients up outside lol I probably know more about OSA than the doctor, and with friends on the forum I think I will stick to Berneta taking my Tempreture lol

[jackyk]

had my yearly reveiw not so long back.
oximeter overnihght to check everything working ok, machine data checked ie hours used etc.
epworth re-done n checked.
bcos i had a good readout, next year, if oximeter reading ok, i just gotta do telephone reveiw.
will see you if you need anything replacing lol

[Sparticus]

WHY?

Still not sure why they wont let us take our own readings? The hospital dont even bother checking for mask leaks varients in AHI or VSI blood sats??? If you have a problem phone us? What kind of crap is that. I told her that I had the resmed software, her reply was "We cant have patients messing with the setting it would be a disaster" I explain that most people arnt interested but I am and when I started spouting about blood sats, AHI and VSI Readings, she had the cheek to tell me I wouldnt understand it? Utter nonesense, why are these people so scared of letting us look after ourself, after all we only bloody see them every year or so, god its so fustration

[Poppy56]

My annual review is by filling in an online form - I've seen a doctor once in 2 years. Mind you, I have no problems, CPAP is working for me and they send me spare stuff whenever I need it. Works for me - provided that I could see someone if I really needed to.

[Sparticus]

My annual review is by filling in an online form - I've seen a doctor once in 2 years. Mind you, I have no problems, CPAP is working for me and they send me spare stuff whenever I need it. Works for me - provided that I could see someone if I really needed to.

Yes thats how its suppose to be and it does work and thats the NHS's argument but what if I was going on a long drive and that night I had some bad leaks that I didnt know about, how could I check? When visiting my mother I have a 7 hour drive, the last thing I want is to start feeling ruff 2 hours in, also Im a carer for my partner and daughter, I need to be on top form, so is it too much to ask for them to let me check my own results of a nights sleep?

[silvercarper]

Even if you was allowed to see the nights stats then on my machine they are not available until midday when the 24 hour period ends.

Also I believe that you can set a alarm on the machine which sounds when you have a large leak

[Fredxx]

I've always thought the alarms were counter productive...If you have a large leak you will either wake with the leak or with an Apnoea (or a dig in teh ribs from a partner), so the alarm wouldn't be needed...and if it doesn't wake you...well, what is the problem!

[Tigers Fan]

And anyway ......

....... one night's stats have no meaning by themselves. We look for trends.

You don't need stats to prove you woke up tired and/or had a rough night tossing and turning.

Stats and ignorance can be a lethal combination, a lot like a Deck Officer with a shifter in his hand.

TF

Ah! alarms! You are on the money Fredxx. If the parameter in alarm does not wake me, I certainly do not want an alarm waking me to tell me about it. Hmm! maybe I'll reset the alarms a few feet short of death's door and switch them back on.

[silvercarper]

Is a oximeter the best way to find out how good your sleep has been and do they have alarms to wake you if your o2 levels get too low