How long is too long?

[JamesG]

I've been told that I need a CPAP after a study paid for by my work health insurance. I now have to switch to the NHS to get my own machine. Does anyone out there know what the waiting lists are like? If it's too long I'd be tempted to buy my own simply because I'm so tired I've got to do something. Does anyone know what the waiting list is like in Maidstone and Tunbridge Wells. FYI my score was 48, sounds alot to me!

[Joe McManus]

Hi James, welcome to the forums!

48 Apnoea episodes is a decent score though it still pales in comparison to some who can manage to put 140 on the score sheet. Whether or not 48 times stopping with breathing per hour is very bad depends on how long each of those 48 breaks are for. At 30 seconds a piece you miss 24 minutes of breathing. At 10 seconds each you miss 8 minutes. If they recorded your blood oxygen levels, that will give a good perspective on severity.

A fellow forum member, also fro Kent, had a pleasant waiting list experience in your area:

http://forums.cpap.co.uk/showthread.php?t=139

Though his conditions were more severe so he may have been pushed along out of 'life or death' necessity.

Basically, if you're lucky it'll be two months; Christmas will be your last sleepy period. If you are unlucky, Christmas could be your last sleepy period. Christmas 2009 that is.

My area didn't have any appropriate sleep apnoea treatment funding at the time so I bought my own.

If you ring up your hospital they should be able to give you some sort of indication where you are in the queue. It may help if you adopt a 'heavy or interrupted breathing voice' on the phone

[JamesG]

Hi Joe, I'll give them a ring, it can't do any harm. I've been told that you get a better machine if you buy it yourself? Is this other peoples experience? I was originally told it was going to be £3000 for my own CPAP machine (don't you just love Harley St consultants). I'm now being told that £750 should get me everything that I need, properly set up. Any Thoughts?

[Joe McManus]

£3000 is definitely not the case. That's just a bad sales pitch that presumably actually does work on city bankers with OSA and hefty XMas bonusses. That's Harley street for you

Some hospitals do provide modern equipment, like Puffin showed in his 'one handed' video. Others have older equipment to shift. Buying privately does put you in the driving seat in terms of choice.

Modern machines with the latest bells and whistles start around £250 with a mask of around £90. That gives you a complete kit for under £400. Add a humidifier and with £500 you could be sleeping well as quick as this coming weekend. £750 will make it an auto CPAP which may have some long term benefits over fixed pressure.

Let me take this chance to recommend our prize sponsor: http://forums.cpap.co.uk/showthread.php?t=118 not just because of the prizes, also because I got my kit from them. Or go to Harley Street, if you prefer

[JamesG]

I've phoned my GP and referal hasn't been processed yet. So when they get round to it the sleep centre concerned (40 miles away)will write to me and ask me to phone in and make an appointment about 4 weeks in the future! All told 6-8weeks to see a consultant. I will then be invited back for a CPAP fitting. Sounds like it's time to pay up and look big! Off to Central Health, so I'll let you know how I get on. I'm looking forward to celebrating by going to the cinema........and not falling asleep! Thanks so much for your help. Top man and a top site!!!!

[Joe McManus]

No problem. Hope things work out for you.

The scary part of having to wait is actually often overlooked. By not having enough oxygen in your system, organs around the body will be deprived, promoting disease throughout. OSA can lead to other bad things or speed them up. Especially those around the country who are forced to wait years are at great risk.

[JamesG]

Easy .......4pm tomorrow, should walk out with my machine under my arm from an NHS facility!!!!!! This country has some serious issues! I can't believe some people wait two years for a machine. I know I'm in a priviledged position but it's not right!

[chelseauk]

Oh Maidstone hospital - that's the trust that doesn't clean things properly

My kit came from Ashford in about 4 weeks. But as said my results were kinda scary !
And it normally would have been 2 months +.

Good luck with it ! - i'll be thinking of my fellow man of kent (or are you are kentish man) when i stick mine on tonight.

[Joe McManus]

Easy .......4pm tomorrow, should walk out with my machine under my arm from an NHS facility!!!!!! This country has some serious issues! I can't believe some people wait two years for a machine. I know I'm in a priviledged position but it's not right!

How did you manage that then? Are they paying for it or you?

[JamesG]

I'm paying........wait would be 10-14 weeks on NHS maybe longer, can't wait! With a young baby in the house who refuses to sleep and leaving for work at 6am I feel in a bit of a downward spiral! How long does it take for people to reap some sort of reward from using their machine?

[Joe McManus]

Provided you quickly get used to the mask and straps etc. it can be overnight. I've heard it said countless of times that the first night on CPAP they slept like a baby and woke up refreshed for the first time in years.

Though in fairness, there's also those (like chelseauk) who had some issues the first night. Those types of CPAP users tend to report an improvement around the 10-14 days mark.

Sometimes it's the people around you who notice it well before you do.

You could keep a bit of a diary, before and after, reporting on a scale of ten how refreshed you feel in the morning and when you start feeling sleepy in the afternoon.

[puffin]

Very first morning after putting it on

[JamesG]

Boy I'm looking forward to this!!!!!

[puffin]

How did you get on JamesG?

[JamesG]

I've had flu so had to rearrange for tomorrow. Can't wait!