how long ?

[madhippy]

hi there,

got referred via Dr to ENT at hospital...

ENT says that he needs to refer to chest clinic - but he can't do it directly - has to write to my Dr ...

(took day off work - he examined ear, nose and throat for 10secs, looked at a registration form I filled in ~ 2 mins with consultant for a whole day off work)

so I have to wait about 3 weeks, then call Dr's ... (been 2 weeks now, nothing shown up at dr's surgery)

in the meantime I'm dropping off to sleep, woke up this am and felt like going back to bed for another 8 hrs, had a sicky last week to catch up on sleep ... 1.5hr each way commute isn't helping so I'm looking at moving (into London) ...

if I move now - will I have to restart the process again ?

[madhippy]

yeah I did the epworth thingy, score between 13-15 depending on my mood!

just ordered one of those sleep strip test things

[Joe McManus]

Yes, it could well be that moving puts you in a different primary care trust and subject you to a new draw in the NHS postcode lottery.

If it's one week till speaking to the Dr. start building your 'case'. These are busy people so you can help do the legwork. Take the Epworth print out and show them. If you've ordered a sleepstrip, keep that and show the results to him. Keep a few days log of how tired you are and note down every time you nod off when you shouldn't have.

Present this to the doc and he should be able to either arrange a sleep study or even prescribe CPAP based on that alone (if very conclusive). Without a sleep study but with a doc's recommendation you can always get an Auto CPAP machine privately.

[flyinpete]

You dont need a consultants letter (most of the doctors I have seen at the sleep clinics are not consultants), but it must be a specialist who has carried out some form of sleep test, be that in the hospital or at home.

I got the local chest/sleep guy to sign the order form from ResMed. He was happy to sign for an APAP machine whilst I was waiting for an apointment with the sleep clinic.

I got the impression as long as its a doctor Resmed are happy to support you, my GP was happy to sign the form when I was going to order from a new company..decided to stay with Resmed in the end so didnt need it.


Peter

[madhippy]

the sleepstrip came up with a 3


I think - since on the segmented '8' style display - a 3 or an E are the same depending on which way up you hold the thingy ... if you see what I mean....

[Joe McManus]

I believe you need to hold it up this way:



So if the three prongs aim away from the sleepstrip, it would be a 3. If they aim towards the CPU, an E.

3 - Severe sleep apnoea - you stopped breathing 40 times or more an hour.

From: http://www.cpap-europe.com/sleepstrip-o-51.html

[madhippy]

thanks - I found a piccie with the results showing ... so it was a '3' ...

guess I just need to send it to GP now ...

also - do I need to tell dvla yet ? I mean I haven't exactly been formally diagnosed ... so I'm guessing not ... only use the car at the w/e for a bit of fun driving anyway ... top off - wind blowing thru hair etc.

[Joe McManus]

I'd wait with the DVLA indeed until a doc confirms it.

Just make sure you know when to, and when not to drive in the meanwhile.

[madhippy]

thought I'd update with latest goings on for anyone else in similar position etc

got back in touch with Dr

He reckons hospital playing silly buggers for not referring from ENT to chest clinic for sleep study - internal referrals don't attract a payment whereas referrals from Dr's do ... hence dr->ent then dr->chest clinic gets the hosp more cash ... took 19 days for letter from ent dr to gp

he'd never heard of the sleepstrip - wasn't interested in it at all.

talked about timescales ...
was planning on a move closer to work to save ~2hrs commute a day, he reckons might as well move then restart with new dr's ( at least that way I get ~2hrs a day back in the near future - move by end March hopefully)

he reckons no point in trying to progress case when moving areas - 'national' health service? - couldn't really move, then stay registered with the surgery till it was all sorted , even suggested hospital wouldnt be keen on giving cpap equipment due to area differences

gave me letter from ENT and some other bits and pieces (blood pressure measurements etc) - to give to new dr so that can start the process again and hopefully speed things up

ENT mentioned - nasal cavities clear, nasal septum mid-line, nasal airway good, patalous (??) palate , long uvula, normal tonsils - recommended sleep study etc

dr also prescribed ramipril - for high blood pressure



bit disappointing but at least I can look forward to getting some time back after the move ...

[gvader]

Hi Madhippy,

As you seem to be getting the run around, does your job kick in with private healthcare? I managed to cut a lot of time off by getting myself referred to a sleep clinic privately, saw the consultant and had a sleep study carried out all within 3 weeks. Once they diagnosed me as a "fairly severe" case my private healthcare dropped me like a ton of bricks and I moved to the NHS side of the clinic - got an appointment for CPAP within 2 weeks and now have NHS provided kit.

If you can manage to do it like that then I wouldn't mention to anyone that you're thinking of moving, the less they know then the faster it might go.......

Regards,

GV

[madhippy]

cheers for the advice chaps

no private cover at the moment - had bupa cover at my previous job - was there about 6 years and never used it once - had to pay extra tax for the privilege too ...

the respironics stardust test has been mentioned as a possible way forward too ... will find out a bit more about that ...


cheers

[madhippy]

thought I'd follow up here again ...


paid for the stardust 2 rental thing - got the results back ...

AHI of 65/hour with a 'number of central events'... no other data listed in the letter ...

anyone know how accurate the stardust is likely to be compared to the NHS ones ??

given 5 options...
1) go via sleep centre
2) gp could fund pap therapy from his budget
3) buy equipment from respironics.
4) buy from the website I hired the stardust from
5) join respironics MOST program - worked out about £690/year for machine/humidifier etc

gp isn't likely to want to do anything as he knows I'm moving in about 4 weeks and seems keen for any treatment to appear on someone elses budget!

[gvader]

Hi madhippy,

I'm not familiar witht the stardust thing you mention but your letter mentioned "central events". There are 2 types of Sleep Apnoea - OSA or Obstructive Sleep Apnoea and CSA or Central Sleep Apnoea, the treatment for them is different. As your letter mentions "central events" then I would vote for the sleep clinic route.