Had a 5 day trial of CPAP machine now banned from driving and no chance of CPAP kit !

[Harrow]

I Had a 5 day trial of CPAP machine now banned from driving and no chance of a CPAP machine.

Let me explain, I went to the doctors because I was feeling tired and had spoken to 2 CPAP users that I had met at work.

My GP sends me to ENT clinic and told me I would be referred for a sleep study, an oxygen clip on a finger with a device like a wrist strap.

Go to see the sleep consultant at Central Middlesex and asked him do I stop breathing and he said NO but its your snoring that interrupts your sleep. He says we will lend you a CPAP machine for a week to try that.

Well as you know the fall face mask is not easy and I have trouble getting off to sleep.

I take the machine back a day early (my wife is in that hospital).

Get my appointment to get results and see consultants registrar. He says oh you had trouble using the machine, well that’s it your discharged and you cant drive any more tell the DVLA.

So no machine no next appointment no car driving I am completely screwed?

What do I do next?? I live in London.

[acebass]

Get a second opinion and make a fuss / complaint....they are supposed to help you with the equipment and then give a proper diagnosis, sounds like you got neither....

[Sleep2Snore]

I would agree, just because you couldn't get on with one mask does not mean they can just dismiss you.
Back to doctor and get them to refer you to another hospital for second opinion, maybe the clinic will try to help this time.
As Acebass says, they are supposed to help you.
The machines are not easy to adjust to and do take a while, but you also have to try to use them.
It is worth the struggle to use these machines, I know it is not easy, but you have to go back for a second opinion and try your best.
So your snoring is disturbing your sleep and you don't have Sleep Apnoea!
Your other option is to go private, but that can be costly.

[Fredxx]

the Registrars advice "you can't drive any more, tell the DVLA" is not a consultation and diagnosis, and so is just garbage from a grumpy overblown lacky.

If the consultant has diagnosed you with Sleep Apnoea, you need to be properly told that and, yes, that is something you have to tell the DVLA.

If you didn't see the consultant and were not told you have Sleep Apnoea, you have not been given a diagnosis, and so have nothing to notify the DVLA about.

If you have received a diagnosis through the registrar of Sleep Apnoea, this is classed as a life threatening condition and the consultant has a duty of care to make sure you know the risks and available therapies, otherwise they are being negligent in their professional conduct.

Either way, go and see your GP again and consider making a complaint against the consultant.

Oh, and ignore the DVLA comment until you have a proper diagnosis and are being treated for it.

[Harrow]

Thanks for the replies so far.

I have started a complaint with the PALS team at the Central Middlesex Hospital London and have asked for an update on progress but nothing so far.

I did see my GP and asked IF I have OSA where's my treatment for the related health risks?

Would the NHS refuse to treat your diabetes if you were having trouble adjusting your blood sugar?

If you didn't always remember to take your blood pressure tablets would the NHS stop all treatment?

No, I think because CPAP cost money its far too easy to refuse treatment.

I have told my wife if anything goes wrong with my health that could possibly be attributed to OSA the she knows who to sue !

[Sleep2Snore]

Yes, Fredxx is right in that you do not have a proper diagnosis.
Go back to your GP and ask to be referred to a Sleep Clinic with the view to you having Sleep Apnoea. Maybe you can get proper care and advice from them. Don't get pushed around, they are there to help you not to brush you aside at the first hurdle.
When you get a machine, take your time is choosing a mask as this is where most problems lie. It is very much a positive mind you need when going through this and you do need the attitude that it is going to work.
A lot of the rest is just trial and error until you work it out.
However, we are here to try to help you through this, none of us are doctors, but we have all been there and dragged through the mill as it were.

[symmit]

As I understand it unless you have the symptoms of sleepiness then you need not stop driving, if you do en you owe it to yourself to stop.

What did you find prevented you from using CPAP? The mask, the pressure or just the whole experience? Maybe we can help you through it.

If it was the pressure then an auto machine may help. If the mask then a nasal mask or nasal pillows may help. As for getting off to sleep, when you're tired enough it will happen!

It can be a difficult path but effective, don't give up!

[Sleep2Snore]

Yes, if you are tired, don't drive. It may well be the last time you do it.
It's just not worth it.
As far as I can see though you have no official diagnosis to date.

There are a lot of things can cause you problems when you start CPAP and you are not alone in giving up first time around. But most problems can be overcome with a little advice and a bit of help. Pressure, masks leaking, rainout (condensation in the hose and mask), panic attacks and to much pressure to breath against when breathing out are all common causes that make people give up. But trust us, it is well worth giving it another try and with a bit of advice and a bit of help you may get your life back again.

[andysnorer]

Am I the only one who finds this very peculiar and highly unlikely?

He says oh you had trouble using the machine, well that’s it your discharged and you cant drive any more tell the DVLA.

If a member of the NHS said anything like that, then it would be grounds for them to be struck off/be dismissed.
For one thing, if the patient is being discharged, then there is nothing wrong with them, so there is no need to inform the DVLA of anything.

[Harrow]

Am I the only one who finds this very peculiar and highly unlikely?

He says oh you had trouble using the machine, well that’s it your discharged and you cant drive any more tell the DVLA.

If a member of the NHS said anything like that, then it would be grounds for them to be struck off/be dismissed.
For one thing, if the patient is being discharged, then there is nothing wrong with them, so there is no need to inform the DVLA of anything.

I can assure you this is completely true, I asked could I see the sleep technician, try a different machine or a different mask and the answer was NO. Your discharged back to your GP.

[andysnorer]

I can assure you this is completely true, I asked could I see the sleep technician, try a different machine or a different mask and the answer was NO. Your discharged back to your GP.

If that happened to me, then I would get straight in touch with the head of the NHS trust concerned and my MP - then the media, they would love it.

[Sleep2Snore]

Try the head of the NHS trust to try and resolve it, of this doesn't work try your MP, them the press if nothing happens
That will cause ripples which will turn into waves
You want to try to resolve it first before going to the press, however, you may want to drop that into conversation

[Harrow]

Update to the story so far.

Yesterday I had a phone call and a apology for what has happened, and the junior doctor has been counselled.

I have an appointment this afternoon with the consultant and I will let you know how I get on.

Thanks to everyone for your advice and I am sure more questions will come out from this afternoons appointment, I will let you know how I get on.

The last few weeks have been very stressful, thank you for your support.

[Sleep2Snore]

Result, let us know how it goes, and don't be afraid to ask

[Harrow]

Well today's appointment had a shaky start because I again saw registrar this time pregnant.

After a difficult conversation where I pressed my point that I wanted someone who would work with me and support me.

After being told I was getting the best service in the country I said you ought to be reading what people think on the Internet!

I was presented to the consultant and this time the conversation was much more warm and supportive, I still don't believe other people only get a one night trial of a CPAP machine.

Well I now have a 6 night trial of a Respironics Remstar Auto C-Flex and a Respironics Contour Deluxe mask, I will let you know how I get on.