Post
by rick blaine » Sat Nov 21, 2020 11:15 am
Hi ktan49.
Hi, I live in the UK, and I have 10 years experience now of using CPAP. If sleep apnea is indeed what you have, then treatment is available and is effective.
Let me give you some information.
1. You've been to your GP and filled in a questionnaire and got a high score. That was most probably the Epworth Sleepiness Questionnaire, and it gives your GP a way of knowing how bad things are. But it's suggestive, not conclusive.
2. The next step is for you to have a 'sleep-study' – which you do overnight and usually at home. That's what I think you've been referred to an NHS sleep clinic for.
Nowadays, almost every NHS Foundation Trust hospital has a sleep-medicine department or sleep clinic – what you may or may not know is that the waiting time is each area is not the same.
It's disappointing if the waiting time in your area is "up to 40 weeks" – but one reason for this is: this treatment is highly effective and cost effective. And the more GPs realised this over the years, the more they've been sending people in for a sleep-study.
(I have a hunch you're somewhere in Greater London, or the home counties.)
But there are alternatives to that long waiting time.
3. Does your job involve driving? I know that's there's a lock-down, and people are 'on furlow', and there are other changes to 'business as usual' – but the question is still valid:
If your job involves driving, you should be seen by the NHS within four weeks. That's the policy as set down by NICE, the National Institute for Health and Care and Excellence.
4. If the four-week rule doesn't apply to you, and you don't want to wait, then then you can have a sleep-study done 'privately'.
a. One of the two main manufacturers of machines to treat sleep apnea is ResMed UK. They offer an at-home sleep-study for about £150 – or they did before the pandemic. You would need to ask them.
ResMed UK are in Abingdon, on 0800 907 7071. And also on the internet.
b. The other of the two main machine manufacturers is Philips Respironics UK in Chichester.
They also offer an at-home sleep-study – theirs for about £210 – and that was also before the pandemic. You would need to ask them.
Philips Respironics UK are in Chichester, on 0800 130 0844. And also on the internet.
c. A firm called Eu-pap is in Walton-on-Thames – they don't make machines, but they stock them and sell them.
They also used to offer an at-home sleep-study – for something like £190. But again, you would need to ask them what their policy is during the pandemic.
They're on: 0800 024 8050. And on the internet.
5. If you do go private for a sleep-study, that doesn't mean you get seen by the NHS any faster. But you do know if it's sleep apnea or not.
And once you've had a sleep study, you can buy your own machine. Depending on what the study says, the most likely machine for you is an auto-adjusting machine – cost £600 to £700 – or a 'bi-level' machine – a bit more, at about £900.
It's the law in the UK that they can't sell you a sleep-apnea machine without a prescription. But your GP qualifies as someone who can sign a prescription.
6. Remember the other option: if you do wait it out to be seen by the NHS, and you do do their sleep study, and you do score "15 and above", then the diagnosis is obstructive sleep apnea. And the sleep clinic gives you a machine as a kind of permanent loan.
And they also give you a suitable mask to go with it. For free.
If you buy a machine yourself, then you will need to buy a mask in addition to the machine. Cost for most models of mask: around £120.
7. One tip here: some people buy a machine now because they feel they really can't wait. Life is just too awful. But they stay on the NHS waiting list and still go along to the sleep clinic all them weeks later because:
a. sleep clinics are used to people needing support, especially during the first three months, and are happy to give it* (altho at the moment, with the pandemic it's probably 'over the phone');
b. there's an annual follow-up, with a free mask or mask parts replacement (ditto with the 'over the phone' and masks by post);
c. the 'paperwork' with the DVLA for you to resume driving is done by a doctor at the clinic.
If you did do that, then you need this bit of advice. Each sleep-clinic in the NHS usually standardises on one of the two above brands of machine, and not the other. And they use only that company's software to read the data. And not the other.
So, if you're going to do this half-private and half-NHS combination – like wot I do – then it's really wise to ask the sleep clinic: "Which brand of machine do you use?"
And then use the same one.
Otherwise, they can't read the data chip in your machine. And they can't tell the DVLA about you.
A phone call should do it.
* And remember, you can always ask for more advice and help here, on this forum.
currently waiting for referral to sleep clinic from GP but apparently its upto 40weeks wait. Do these symptoms sound familiar? Also get put in a coma state after eating meals...Thanks for reading this apologies for the length. I cant believe I didn't look into SA sooner, filled out questionnaire with Gp and got highest score... bmi is 35, neck is 18" wide.
