Recently diagnosed with Central Sleep Apnea, but doc refusing treatment. Need help (UK)

So, I'm 23 years old, male and was diagnosed with Central Sleep Apnea late November through the NHS home sleep test. I live in England.

I had all the typical symptoms. Waking up to pee 6-7x a night, tiredness, fatigue, etc. Completely wrecked my life.

After getting a home test through the NHS, I was told by my consultant that I had Central Apneas but only in the first hour of sleep (study was 4 hours). My AHI was 25. Very few obstructions. He said the hospital didn't have ASV but that he would offer me a trial of BiPAP, because by symptoms were severe.

Well, weeks go by and he ends up transferring my case over to a Specialist at a bigger hospital. The new consultant tells me that he wants to do his own tests and puts me on waiting list for the sleep study. Fair enough I guess. But he then tells me the waiting list is extremely long (the waiting list for first hospital was fast).

So I ask him whether I could at least have a trial of BiPAP in the mean time because I'm suffering, and he refuses. I was devastated. I begged him but he did not budge. He did however say that "if the first hospital want to give you BiPAP, then I will not stand in the way".

So I call back the first hospital and tell them what he said and ask for a trial of BiPAP. And they refuse, saying they will listen to his advice. I then tell them could I at least have a prescription for BiPAP so I could buy one privately, and they refuse that request.

I am so hopeless right now. I am thinking to ask my GP to refer me to another hospital.. my hope is that I'd get a hospital which see the results of my first study and offer me a trial of BiPAP in the mean time. I don't even mind if they ask for another sleep study, just as long as I could get a trial in the mean time.

I don't know what to do??? Should I go to a private doc? That will cost me. Please does anyone have advice.

Hi - first thing to question would be the 'centrals' early on (only). They often turn out to be what we call sleep-wake junk, not true centrals but stuff at the beginning and end of the night... something though that we can look at if and when you have a machine that will let you use the free software (Oscar) downloaded from the forum and posted so we can interpret for you. So hope you relax a bit for now at least.

Second - you put UK in your title, so Rick Blaine of the UK should see it and give you better answers re acquiring a machine, NHS stuff, etc.
Wait for him to chime in, but if/when you get back here, plse stay in this thread so we can follow what's what and help when. Good luck!

Julie wrote: ↑

Sat Jan 09, 2021 12:23 pm

Hi - first thing to question would be the 'centrals' early on (only). They often turn out to be what we call sleep-wake junk, not true centrals but stuff at the beginning and end of the night... something though that we can look at if and when you have a machine that will let you use the free software (Oscar) downloaded from the forum and posted so we can interpret for you. So hope you relax a bit for now at least.

Second - you put UK in your title, so Rick Blaine of the UK should see it and give you better answers re acquiring a machine, NHS stuff, etc.
Wait for him to chime in, but if/when you get back here, plse stay in this thread so we can follow what's what and help when. Good luck!

Thank you for your response.

I am open to the idea that it might not be true centrals, but I think then it could be UARS. I have all the textbook symptoms, so I saw this apnea diagnosis as validation of this. If its UARS, I have read that BiPAP is often useful, so it would end up helping anyway. However, many hospitals in the UK don't even recognise UARS.

I just hope that a new hospital could look at my results, offer me a trial of a machine and then order another sleep study if they want to be sure. I don't want it to be the case that I have no machine while I wait for my new study (which is what the current hospital is doing, and why I'm.changing from them)

I will stay in this thread. I appreciate any/all advice!

Do you happen to know the name of the home sleep study that you had done?
As part of it did you wear some sort of belt or restrictive device around your chest or abdomen?

Pugsy wrote: ↑

Sat Jan 09, 2021 12:49 pm

Do you happen to know the name of the home sleep study that you had done?
As part of it did you wear some sort of belt or restrictive device around your chest or abdomen?

It was the NHS home test. Nox T3 equipment.

I had a belt around my chest and my abdomen.

Okay...the belt around the chest and abdomen helps with the central apnea flagging stuff.
I asked because some home studies don't use them and still flag centrals and without the belt they can't really know for sure.
The belt measure effort to breathe....a central apnea means you aren't making an effort to breathe.

RickBlaine will be along in a bit and explain your options to you.

See if you can get a copy of that sleep study.

Hi Pugsy,

I'm working on a reply. Taking a little bit longer than usual. It's a slightly tricky case.

As far as I can see, the Nox T3 is a three-channel PSG machine, as per

https://www.youtube.com/watch?v=dBzBo_4bCs4

rick blaine wrote: ↑

Sat Jan 09, 2021 4:09 pm

Hi Pugsy,

I'm working on a reply. Taking a little bit longer than usual. It's a slightly tricky case.

As far as I can see, this is a three-channel PSG machine, as per

https://www.youtube.com/watch?v=dBzBo_4bCs4

Thank you for taking this time to write a reply.

I know I sound desperate, but these symptoms are so bad. I am still hopeful though but it's a bad situation.

Pugsy wrote: ↑

Sat Jan 09, 2021 3:55 pm

Okay...the belt around the chest and abdomen helps with the central apnea flagging stuff.
I asked because some home studies don't use them and still flag centrals and without the belt they can't really know for sure.
The belt measure effort to breathe....a central apnea means you aren't making an effort to breathe.

RickBlaine will be along in a bit and explain your options to you.

See if you can get a copy of that sleep study.

Yeah my home study had all of that.

I actually asked the secretary for my sleep results, and she refused! She was very rude and bemused and asked me "why would you even want them?". Eventually they got back to me and said they wouldn't give me them because "you're not a doctor so you can't interpret them".

Hi RickBlaine....I will leave OP in your very capable hands.
Helping UK members is hard enough even if only dealing with OSA.

Though....remember secondwindcpap.com will sell machines internationally and they won't require a RX for international sales.
So that option is out there.
I just hate to recommend a machine without knowing which might be the best model and maybe save some money.
Now we can dumb the bilevel ASV down if we need to but we can't make a regular bilevel do what the ASV can do.

Here in the US...our laws let us request copies of our medical records and they have to be furnished to us upon request.
Now I don't know how the UK works...but even in Canada you can request your records.
I imagine that RickBlaine knows about any such law in the UK.

"Even" in Canada?

Hi CentralApneaUser909,

The first thing I'm going to do is give you some information. And then in the 'second half' some thoughts about how you might move forward.

a1. It's possible that the reason the first hospital gave you an at-home sleep study so quickly is because of your job. The rules from the standards body, NICE, say that, if your job involves driving,* then you have to be offered a sleep-study within four weeks.

So: does that apply to you by any chance?

(* Yes, I know, under current conditions, if you are employed, you may be currently 'in furlow'. But if things were normal, would any part of your job involve driving?)

a2. Having said that, two things:

(i) even if your sleep-study was prompt, it doesn't necessarily mean you will get treatment quickly. It usually does, but it's not guaranteed. And ...

(ii) whether that NICE rule extends to the second hospital, I don't know. Yours is an unusual case. But if yours is a driving job, it might help to inform the second hospital of that fact.

a3. You say "I ... was diagnosed with Central Sleep Apnea" – who was it said that to you? If I read you right, it was the consultant at the first hospital.

There are all sorts of reasons why I'm not going to criticse either of your consultants. But Julie, who is in Canada, and is thus outside the scope of UK law, is free to offer the very reasonable possibility that centrals in the first hour (or any other time when the patient is half-in and half-out of sleep) might be 'sleep-wake junk'.

Now, the way that can be confirmed, or not, is by having the patient spend a night at the hospital, in what's sometimes called a 'sleep lab'.

What goes on in the lab is to not only have (i) the thing clipped to your finger, and (ii) the expandible tube round your chest, and (iii) the plastic tube with the Y-double-end stuck up your nostrils, but also EEG electrodes stuck on your scalp – to record when you are properly asleep or not – as well as things stuck on your arms and legs – to see if they jerk while you are asleep or not.

And this multi-channel sleep-study may be what the consultant at the second/ bigger hospital has in mind for you.

From what you post, you haven't been told if it is this second, much more thorough, kind of sleep study which is being offered. And yet you're planning to not take it.

You say: "I don't want it to be the case that I have no machine while I wait for my new study (which is what the current hospital is doing, and why I'm changing from them)."

I suggest you don't turn down this second study until you find out precisely what is being offered.

Unlike many patients, you don't seem to be afraid to ring up the hospital and talk to them. Can you find out if an in-hospital study is what is being considered?

Or just a repeat of the three-channel Nox T3 kind?

If it is the over-night-stay kind of study which is being offered, then IMO it is well worth waiting for. Such a study can 'look at' conditions other than sleep apnea, conditions which for example, might mean a referral to neurology.

a4. Last piece of background information for now. You say the first hospital didn't have an ASV to offer you.

What we're talking about here is money. The typical OSA patient in the UK is now supplied with an auto-adjusting APAP machine, cost £680 retail. A bit cheaper to the NHS 'cos they buy in bulk.

The NHS patient who needs a greater pressure difference between inhale and exhale may be supplied with an bi-level machine, cost about £900 retail. A bit cheaper to the NHS 'cos they buy in bulk (altho' not so many of them).

The NHS patient who needs an ASV – the price of that is about £4300 retail – and supplying that to the patient will almost certainly need the consultant having to make an 'individual funding request'.

Usually this four grand comes out of the hospital's budget and not your GP's budget. And it is not covered by the fee your GP pays the sleep-medicine department for the patient's treatment.

So ... what for you to do?

And before we get into detail, I'll just say that you may not like everythng I have to say. But I am a UK citizen communicating with another UK citizen. And AFAIK, it's irrelevant that the website is not in the UK. I am governed by UK law in what I say to you.

b1. What I have to tell you is that, from the system's point-of-view – and in my layman's opinion – the second consultant is being clinically correct and quite reasonable. He or she can decide they need to know more before they treat you.

b2. The first consultant is – again, in my layman's opinion – likewise being clinically correct. The phrases that come to mind are not only that he or she is 'bowing to the greater experience and judgement' of the consultant at the second hospital – but you 'are now this second consultant's patient'.

Which amongst other things, means the first consultant can't write a 'scrip' for you.

b3. You mention asking your GP to refer you to a third hospital. Your GP may not be willing to do that. The two consultations – which you have already had – have come out of his or her budget.

And he or she may be unwilling to go further. Under the laws which cover NHS treatment, there is nothing 'wrong' with the treatment you have been offered and are being offered.

I mean, you can ask. But don't be surprised if the answer is no.

b4. You can go private – and see a UK sleep-specialist in the private sector – first appointment something like £200. And then, after you have bought a machine (see prices above), something like £300 to cover the sessions with the private doctor's nurse, setting you and the machine up, and teaching you how to use it.

b5. Now the tricky bit – if you lived in the USA, there is nothing to stop you engaging in self treatment. It's not only that their laws are different, but self-help is in the culture.

As Pugsy says, there are outfits such as secondwindcpap.com which can sell you machines of all kinds and at all levels.

But as Pugsy also says, if a person in the US were to 'present' with the same provisional diagnosis as you, the question is: which machine should they buy? Difficult to know without the info from a sleep-study.

(I'll come back to getting the results of your sleep study in a minute.)

b6. For sake of completeness, I will add that there are a couple of places in the UK from which – in normal times – you can hire XPAP machines. And one reason for renting would be to try out different kinds of machine.

It is expensive though – typically £100 a week.

As far as 'prescription' goes, I seem to remember that one of the hire places did not ask for a scrip.

But there is also the fact that we are in unusual circs at the moment, what with the virus. And the hire places might simply have ceased business for the time being. I would need to check.

I'll post this now. I may add more later,

Hello again, CentralApneaUser909,

About getting to see your records. The law is that you are entitled to see a copy. And you are entitled to get a printed copy of all letters the hospital and/ or consultant sends to your GP.

As to whether you might or might not understand the records and any letters sent – that is irrelevant. The plain fact is that you are entitled to a printed copy.

If any secretary or hospital person says they're not going to supply same, or puts up objections, that's when you say: "I am asking politely – and that should be enough. But do you want me to make a 'subject access request' ?"

You are the 'subject', and you want – and are entitled to – access. And if needed, there's a procedure for making a formal request.

You'll find details of the procedure on the NHS website. Search on the phrase 'subject access request'.

Hi Rick, thank you for your response! I greatly appreciate it. I will answer your questions, and hopefully if you don't mind, j have some of my own.

1) My job did not involve driving. I was just honest about the severity of my symptoms and they got me tests quickly

2) My first consultant from the first hospital said I had Central Sleep Apnea

3) My second consultant wants another Home sleep test, similar to the Nox T3. His home sleep test would involve the chest strap but NOT the abdomen band, unlike the first one. He said that if the results were not conclusive from that, he would then offer an in lab. But due to COVID-19, it could be a very lvery ong time before that happens. So the only way he would ever consider an in lab Is if it comes AFTER the home test. Realistically he said we are talking months on end

The second hospital is saying very clearly that they will not give me any kind of machine until they have another study..but even their home test will take a long time until ready for me

I've called up the hospitals so many times, I think they both annoyed of me now haha

4) I should state that the first consultant agreed to trial me BiPAP but then afterwards transferred me. So it was initially his plan to give me a machine but changed his mind. But yeah I can see why they may be clinically right, but I just can't stand these symptoms without at least trying something of some kind to alleviate them

5) I thought it was my right to be able to change hospitals? I assumed that it was, and that refusal is unlikely. But if its indeed a possibility as you say , then I am concerned.

I'm planning to tell my GP about my frustrations and how I felt the consultant was dismissive and the wait times were too long. I would like to ask her to refer me to a smaller district hospital. My GP knows me because I first saw her about my frequent nighttime urination. She tested me for diabetes and prostate to see if that caused my peeing but was negative then she referred me to sleep clinic. So she knows how these symptoms have wrecked my life. I am hoping she would be sympathetic.

6) Do you think it is likely that a new hospital would trial me a bipap by using the results of my first NHS study? Or do you think they are likely to refuse?

I have emailed hope2sleep and asked them for advice regarding the situation, whether they could reccomend me new clinics or private places.

If I went private, would the private doctor use the results of my first study? And just go straight to the machine.

Thank you for the info on those sites. If it comes down to it, I could buy or rent from a site such as those.

I will request again for my sleep study results

rick blaine wrote: ↑

Sat Jan 09, 2021 5:59 pm

Hello again, CentralApneaUser909,

About getting to see your records. The law is that you are entitled to see a copy. And you are entitled to get a printed copy of all letters the hospital and/ or consultant sends to your GP.

As to whether you might or might not understand the records and any letters sent – that is irrelevant. The plain fact is that you are entitled to a printed copy.

If any secretary or hospital person says they're not going to supply same, or puts up objections, that's when you say: "I am asking politely – and that should be enough. But do you want me to make a 'subject access request' ?"

You are the 'subject', and you want – and are entitled to – access. And if needed, there's a procedure for making a formal request.

You'll find details of the procedure on the NHS website. Search on the phrase 'subject access request'.

Hello again, I have responded to your questions in your first post in my post above.

I will be sure to request them again and say I'm making a request.