Just diagnosed OSA

[Raymondo111]

Hi,

I was advised yesterday that I needed a 'machine' and to book the next available snoring clinic which I did for the 19th March. Unfortunately my diagnosis as having OSA has really dragged on since June 2008 and I was hoping this would be sorted a lot earlier than this as I have booked a cruise starting 7th February. This means having to share a cabin with my OH and one of the reasons she agreed to go was that I sorted my snoring out!! So here we are just over 3 weeks to go and no machine yet, I think I have resigned myself to the fact that I may need to buy a machine privately but need some advice about how to go about it and what steps need to be taken to get it set up correctly for me. Also when eventually I get my appointment in March what is the timeline in being supplied with a NHS machine and ongoing what happens with maintenance etc on a privately purchased machine. Any advice would be greatly appreciated - I don't fancy sleeping on the balcony on hard chairs!!!

[James @ Intus]

Hi Raymondo,

Thanks for joining.

Getting equipment privately may vary a bit from supplier to supplier but as someone working at one of the bigger private sleep therapy homecare providers I can at least give you the answers from our perspective.

First the requirements. You will of course have to have been diagnosed with OSA and be able to get that in writing. We get many doctors' letters in simply stating "Such and such has OSA and I recommend CPAP therapy, signed, Dr XYZ"

That would be enough for an Auto-CPAP. If you want a fixed pressure CPAP, that letter has to state the recommended/required pressure (3-20 HPa or CM H2O). That pressure they can only know if you've had a trial. So most people end up with an Auto-CPAP (APAP for short) because of the lack of knowing the right settings. These are more expensive but offer a number of extra features which are worth it beyond the auto adjusting nature.

For example, if gain or loose weight, your pressure needs change. Same if you have a cold or have had a night out drinking. With a CPAP, you'd have to have the pressure latered by the clinic or by sending in a chip-card. The APAP will quietly get on with it at the right new pressure. This saves time and hassle.

An APAP also has more sensors, required to facilitate the auto-adjusting features. These sensors record more data than a CPAP can, so you can often run nice reports on the screen or via a data card. The more geekier hoseheads tend to like this.

As they are higher-end machines anyway, they also often have certain handy bells and whistles.

So that briefly settles the requirements for CPAP and Auto-CPAP. If you have not yet been diagnosed you can do an in-home finger pulse oximetry test to confirm you have OSA.

Next is timing. You only have 3 weeks but are asked to wait 2 months. A lot of bad stuff can happen in 2 months, not least ruining the cruise. Falling asleep at the wheel causes as much deaths and more damage than drink driving fo example. We tend the deliver in 48 hours so patients can get on with it fast.

NHS timing varies wildly. Some walk out of the clinic with a shiny bit of kit, others are told they don't have funding. In between it varies from weeks to months and the equipment given varies from great to second-hand.

Maintenance-wise, the NHS will probably call you in for an annual quick-check which depending on the clinic, varies in depth from data analysis and hardware check to a mere filter replacement and compliance check.

Privately, you will be followed up annually to see how you are getting on. Filters can be ordered when you need them. Data cards can be sent in when you want. The hardware, aside form filters, requires very little maintenance. They are built to last. On screen reminders will tell you when it's time to do what but they are virtually maintenance free. If you can maintain a HiFi set, yuo can maintain a CPAP.

If something happens with the machine under warranty, replacements tend to be with you within 2 working days. Couriers will take of it. With the NHS, you will have to come in and loaners may or may not be available, again depending on the funding available in said clinic.

All in all, there's positives and negatives to both routes. Untreated sleep apnoea makes you feel crap and isn't good for your health so if the budget allows it, speed should probably be a top priority. If they can't promise you can walk out with a full bit of kit on March 19, that there's a chance you then have to wait more, you have to weigh up the benefits of sleeping better next week as oppose to this summer.

Many here can vouch for a happy ride buying privately and a similar number have good stories with their sleep clinics on the NHS. The question in the end of the day is, can you afford it and when do you want it?

Feel free to contact me or one of my colleagues on the number listed on the website here: http://www.eu-pap.co.uk/

[Raymondo111]

Hi James,

Thanks for the information, just to clarify, I have done the at home study where I was wired up from 11pm to 6am and then returned the equipment to my NHS Trust. This took place in November and yesterday was the follow up with the Consultant, I was told that due to the number of 'events' I think I remember 250? he told me that I needed a CPAP machine and told me to book the next available appointment at the snoring clinic. As stated previously this is not until March 19 so I need to move rather quickly to get this sorted out. From your information I believe I would be better with an APAP machine which if I understand correctly would not need specific calibration? If I can't get to speak to the Consultant or his sidekick can I go to my GP to get a prescription completed? bearing in mind that he initiated the original referral. I will contact your Company tomorrow for more details but once again thanks for the information.

Raymondo

[James @ Intus]

Wow, so it already took between November and January just to even get the results. They're taking their time aren't they?! 250 events over 7 hours would be 35-ish an hour putting you in the moderate-severe category, which makes it even more importantr to act fast.

Without an NHS trial, an APAP is indeed your way forward. It does the calibration (titration) by itself.

You don't need a prescription as such but you do need a confirmation of the fact you were diagnosied. A copy of the letter they gave you (if they gave you one) or a copy of the sleep study may suffice.

[Raymondo111]

James,

I will try to speak to the Consultants secretary to see if I can get hold of a copy of the report, one other question, if I decide to buy from you is it possible to visit to see what the best mask etc is best for me? I think I have already decided on the machine -Devilbiss Autocube with humidifier but not sure on what mask so do you have any demo ones to try?

[James @ Intus]

No real demo units as such and not really a customer facing shop as such, just a warehouse and an office really. As far as picking a mask goes:

1. Can you breathe through your nose consistently well? If yes, a nasal cushion or nasal pillow (straight on your nostrils) mask is least-bulk and most comfrtoable.

If not, you will be a mouth-breather (at times). Waking up with a dry mouth could be an indication of this. These people need a full face mask, covering nose and mouth, and subsequently, more often than not a humidifier.

Most masks have sizing gauges you can print and hold against your face to find out whether you need medium or large. Some, like the FlexiFit 432, have all 3 size seals in the box.

This quick guide should narrow things down a bit, any further questions, please let me know.