There is one thing that I pick up on throughout the forums that I visit is the differences in the way that various Sleep Clinics deal with us there patients.
There most definately seems to be a variation with regard to what they can and can't do, what is expected of us as patients and how much we have to do on a self help basis.
I consider myself quite fortunate that I am under a consultant who specialises in sleep medicine and the technician who I have regular contact with has a very proactive approach.
But there is a fine line between what they are prepared to do to help and what they are allowed to do to help.
I think the hardest thing to acheive is having some control over your machine, the particular machine I have seems to be the standard issue model used by the NHS, which is set up by the hospital and the only way to diagnose how it is working for me is to take it to the hospital and get them to download the data.
I have asked for a way to access the data myself on a regular basis so I can keep tabs on any changes but this is frowned on.
I even have managed to get the relevant software to analyse the data but I cant get hold of the data cards or a card reader to then analyse whats going on .
Its a shame that we can't access this data on certain machines as it would save on the already stretched resources at our clinics.
I am probably not far wrong when I say that the UK is very much behind the rest of the world when it comes to diagnosis, treatment, analysis, help and follow up of our condition, and it's only due to patients on forums like this that we can share our experiences and offer support and help to our fellow "HoseHeads"
The best piece of advice I could share as a footnote to this post is never be afraid to ask questions, not only at the clinics but in forums such as this we are not alone in all of this, we share a common bond, we all go to sleep with an alien strapped to our faces, or looking like fighter pilots when we go to bed.
Sleep well all :)