Some info and clarification:
That bit where the Northampton clinic gave you an Autoset for a few weeks – that was never intended to be permanent. They give patients the auto machine for two, three, or four weeks solely to find out the pressure the patient was at or under 90 per cent of the time.
Not 90 per cent of the gap between highest and lowest pressure, but 90 per cent of the time.
In many cases in the US – and only in a few cases in the UK – this finding out what pressures you need is done by having the patient stay over-night in a 'sleep lab', with the technician gradually increasing the pressure to see what effect that has.
When that finding out is done in a US sleep lab it is called 'conducting a titration' or sometimes just 'a titration'.
That term is not used so much in the UK, but I mention it so that, if you come across it here, you'll know what people are talking about.
And it doesn't really matter what it's called. The key thing is: it's the policy in your area to do this finding out, this titrating, at your home. And then it's the policy in your area to only issue you with a fixed-pressure machine for your on-going use.
And the staff are the sleep-medicine department you now attend can say they are doing the right thing because this policy is what is recommended for sleep apnea in the NICE guidelines.
There are lots of people – including some sleep-medicine professionals – who say that these guidelines are out-of-date and need revising.
And the doctors and consultants in many other areas of the UK have all by themselves moved to a position where they are ahead of the NICE guidelines – because they know from experience that issuing auto machines is more cost-effective.
It may cost them a little bit more per machine, but patient compliance and treatment are both highter, and patient management is easier.
Anyway ... that's for background.
Now for where you are and what to do next.
It does seem to me, and in my opinion, your case has been poorly managed by the Leicester clinic.
Best UK practice would say that sleep apnea patients, once accepted by a department, should be seen once a year for follow up, mask part replacement, the trial of new mask designs as they become available, and the keeping of adequate records, both for the hospital's legal requirement, and to provide the basis for supplying an opinion to the DVLA when asked.
(Having said that, I can tell you that some sleep-medicine departments in the UK are now doing follow-ups on a two-year interval basis, such is the case-load they have been presented with.
GPs have realised that, for a overwhelming majority of the patients they refer, modern treatment is both effective and cost-effective. So they are referring more and more patients. OSA treatment in the UK is now a victim of its own success.)
But, from what you say, you weren't even seen on an every-two-year basis – and thus don't have the records which would go with that.
Which makes what records you do have all the more important.
The first thing you should do is make a copy of the SD card you have. For safety, you might make two copies.
Your aim is to let your new, Northampton sleep-medicine department have sight of some previous data, and to let them see that you slept well or reasonably well on the S9 auto machine.
And they can see and compare for themselves that data with how you have been doing more recently on the Elite machine.
And then you can repeat the suggestion that perhaps an 'individual funding request' might be in order.
And see what they say.
PS. Check that this Northampton lot have your NHS number, and that it is correct. And then check that they have your new address and mobile number, and that they do appointment reminders both by surface-mail letters and mobile text message.
