'2 year Wait times' for Sleep Study re APNEA?

[medianewbie]

I was dx'd with 'sleep disordered breathing' (15 events per hour') in 2014. Given a Cpap. Told it was because of my weight. Lost weight then stopped Cpap in 2018 (because they refused to issue a replacement when it broke as 'I'd be ok now as bmi so much better'. FF to 2020. I think I still have SDB / apnea. Asked to get re-referred. Sleeponess index Score is 17. On waiting list since Nov 2021. Home study 'inconclusive'. What can I do? GP just shrugs. Clinic say '2+ years wait time now'. I'm SO tired.

Anyone k ow if this is as good as it gets atm so I just need to put up with it as I don't have private health insurance?

I'm having a home study in a weeks time. Got referred in March so only waited two/three months. NHS.

I was referred but just told I didn't meet criteria.

Complete aside but how did you lose the weight!? Im sure this would help me..

@LotsOfBalloons it depends what kind of sleep obstructed breathing you might have? It's a myth that its because fat people have fat throats. I saw a 16 y/o when I was there last who must have been size 4/6. It's a lack of muscle strength that does it which is often inherited. Losing weight in general is good.
@BobaTea oh that's really fast. The home study is a different animal to the overnight observation I found, but they can be helpful too. Good luck.

It's really hard to comment because every centre that offers sleep studies and long term Ventilation operate differently. Sleep studies come in varying levels (from relatively simple to very indepth) and each centre will do these differently - some will do the most indepth one as part of an inpatient observation and some do them at home.

I would advise you contact the centre/hospital you've been referred to - I'm not aware of Ventilation being offered privately (although I don't work in the adult sector) What I would strongly advise anyone is don't go and buy your own machine and set it up yourself (it does happen occasionally) Ventilation settings have to be prescribed by a consultant and monitored.

I had a machine to take 🏠 for ONE night. How can that be conclusive?

I hope you get it sorted.

I'm having a nightmare with the Mandibular Device.

Home*

I believe that a CPAP machine shortage has been exacerbating waits. DM waited 6 months for CPAP after diagnosis with severe SA. She was advised to try the mandibular device bought off Amazon while waiting. I am really frustrated because she is not sticking with the CPAP properly, I know there's poor adherence to them because they are not great, but it helps her so much!

@Lzzyisgod
When I had my inpatient sleep study in 2014 it was pretty thorough. electrodes glued over head, filmed in a special room overnight, hooked up to monitors.
I was fractionally below the cut off for apnea (I was 15 & it was 16, from memory). The CPap worked. Frustratingly, by the time I'd lost a lot of weight, the machine needed renewing & they refused without a further study as they said that 'weight loss can cure it' (it can, but not always...). Then Covid etc. Now it's been since Nov 2021 I've been waiting for a futher assessment. I'm sure I still have sleep disorded breathing as I wake suddenly 'can't breathe' many times.
I'm gaining the weight back, I'm SO very tired.

I called the unit direct (one of only 2 in the whole of Scotland) Answerphone only. When they reply they say they'll 'look into it'. They don't. It's frustrating.
Now my GP has asked me to complete a 'sleepiness scale' so I seem to be back at the start? GP doesn't know. Unit doesnt reply. And I'm incredibly tired still.

Yes huge shortage of vents currently and long waiting time for orders to come through. Issues with sourcing the component parts to build them

Do you have Pals in Scotland?

@Lzzyisgod yes we do.
Had a call from the Hospital today.
they have No Idea why I've been given a fresh Epworth scale.
I said I was concerned that meant I was being assessed from scratch.
She said: 'best ask GP'. Gp told me to ask them. Pah.
Options are: home study next month (but past 2 - one 10 years ago & one 1 year ago were both inconclusive whereas the overnight hospital one WAS clear)/ The home study means a round trip of 70m one evening to collect & then another by 7am the next morning. I can't drive that far (sleepiness!) & I cant' get there by public transport during those times either.
Or, 'just go back on the waiting list, but it will be another year I expect'.
I don't see why I can't just be given a fresh Cpap machine.
Maybe I should get in touch with Pals now as I don't think my 'choice' is as helpful as they seem to be implying.

I never got as far as an inpatient sleep study. I wore a thing on my finger overnight to measure my oxygen levels during the night.
They then asked me to do it again. I then saw the consultant who said I had at least moderate sleep apnea and there was no use waiting to do an in depth study as it would show a lot higher readings.
I needed a cpap machine. I was told I had to totally stop driving until I was legally compliant. I couldn’t drive for over 6 months. I am also in Scotland

@Kitkatandcoffee that's interesting. Was it recent? I know there are only 2 centres in Scotland. Were you at the northern one or the southern one please?