Need some UK advice

[Jan1ce]

I posted this to the main contact address but maybe someone here could advise me.

I have just found out I have sleep apnoea after a sleep study here in Canada. I usually live in the UK and was about to return in March. However, now the doctor here is saying I need to choose and buy a CPAP machine, then get my prescription, then wear it for a month, then have another sleep study, and then get my results 3-4 weeks after that. This would severely delay my return. So my question is would I have to repeat the sleep study to have a doctor again find the apnoea, make a prescription for me and so on? I'm feeling quite confused about this in terms of how long I would have to wait and so on. I would also like to know if there is any NHS provision for CPAP or if I would be on my own re cost - and what might that be? I feel quite anxious to get back to the UK but not at the cost of my health. I am over 60 and live in London.

Does anyone have any ideas or advice?

[jillybean]

Hi Janice

There is funding for Cpap here in the uk.I live in rural Shropshire and I recently got a top of the range Apap and mask all care of the NHS. I think its still a bit of a postcode lottery on the waiting times some on here have got their equipment really fast I had about a months wait. Im sure there will be a reply to you from someone who lives in the London area that will be better informed. Let us know how you get on.

[Tigers Fan]

Here or there

Hi Janice

London is well provided for CPAP-wise if you go to the right hospital - maybe all of them, but only some are reported on in this forum. Read the 'Machines' threads.

If you are going to buy and have US dollars, now is a good time - machines are much cheaper over there than here even at current exchange rates.

You will need a prescription before you can buy.

There is nothing to worry about - do the studies there or wait till you get home - just don't come home and forget about it for months. OSA needs attending to but I doubt another couple of months wait will harm you - look at the schedule your Canadian doctor has given you.

It's impossible to advise you without a lot more information - financial and medical - so the best guidance I can give is to stay in the rest of the weekend and read through this forum, especially 'Machines'. Put 'CPAP' into Google and you can research prices here and there.

And - take it easy! The shock of being diagnosed is the worst bit - apart from getting a good mask fit, of course. (That's a joke to indicate that we can laugh about OSA as well as take care of it.)

Tigers Fan

[musotech]

My part of South London - Bromley, Lewisham etc took a year to get limited funding and only gave in because of the NICE guidance. A colleague has been told by the hospital I went to that he could have a sleep study but if he needed a machine he would have to wait until the new financial year in April. Which means by the time the hospital gets the cash and gets new machines it could be July!
Get in touch with you local Health Trust and ask them what the situation is.
Good Luck!

[Jan1ce]

Thanks for all this advice. I have been reading the Machines threads on your advice. Very interesting.

I suppose I need to find out if the NHS will require me to do the sleep study all over again before they allow me to try out a CPAP machine. And what I don't know is how long I would have to wait to see someone. I did see a doctor at the London Chest Hospital but we had trouble setting up a study at that time. I remember she was really keen on the surgery option though and that's the only thing I don't want to consider. I thought about the dental device but here in Canada I don't have any dental insurance so it's super expensive and my sleep doc said they are 60-70% effective as opposed to 90% for the CPAP. That's why I thought I would go straight for the surer thing, especially since health insurance plan here covers about 2/3 of it.

By the way, my area is Hackney - densely populated so perhaps there's longer to wait on everything.

Another thing I thought was get the machine here then ask for my retest when I get back to London but not sure if I shouldn't start it where I intend to finish it. Even though when he mentioned surgery he said three months away - which indicates that there's nothing truly urgent about it - now I know about this, I am sleeping even worse than before, expecting some incident or fatality overnight! I don't know what happened really. I always woke up once or twice a night but for the past three or so it's been more like 5 or 6...right out of the blue. Before when I woke up I was feeling annoyed but almost always can fall right back to sleep. Now I wake up and think oh no, I must have stopped breathing and that makes it harder to relax and feels so stressful.

How long will this feeling of being a walking dead continue!!!

[leswaller]

Hi Janice
I regret that you appear to have fallen foul of the NHS beaurocracy which is designed to prevent health tourism (people coming over here for treatment then going back overseas) Unfortunately you will have to start again but it shouldnt take too long. You will probably not get a choice of machine, but you should get a choice of mask. Be careful about what you say about how long you are going to be here, you will need to convince (and maybe prove to) the NHS that you will be living in the UK continuously for a period of more than six months in each year. If you cant do that then you will not be entitled to treatment on the NHS even if you are a British citizen. (I work in the NHS)

[Tigers Fan]

No question in my mind!

Hi Jan1ce

I had no doubt even before I read what Les has to say, now I'm utterly convinced.

The NHS is a lottery about what kit you get, if you get any, and Big G only knows how long it will take. Over there, you can choose what you want and only have to pay for one third of it, and it will be at your bedside within a couple of days (it took a US company 36 hours to have mine in my hands).

I'll tell you what I would do were I in your position. I'd high tail it back to my physician/sleep clinic and confirm the diagnosis of OSA, then have them give me a prescription for an APAP (unless they advised me differently in which case I would accept their advice if their reasons made sense to me). I'd talk to them about the most suitable mask, try some on if they have samples.

I would research on line to find the best machine at the lowest price and I would buy it. Similarly for a mask. The prescription will tell the machine vendor what settings you require. Mask, hose and machine arrive, I'd plug them in and connect them up and I'd play all afternoon with them so I was familiar with them by bedtime.

I bought a RemStar 'M' Series APAP with heated humidifier in the US. It has been fixed under warranty in the UK by the maker, no questions.

After a few good nights sleep, I'd file a claim for 2/3 my costs with my insurance company. I'd fly to UK in due course and visit the NHS and get the ball rolling over here.

This way, I'd be in charge of my own destiny, getting PAP therapy PDQ and all for one third the actual cost! This is a no brainer for me, especially considering the NHS lottery.

You turn up at Hackney Sleep Clinic with a PAP machine already in your bag, they will be helpful about masks and on-going studies, I bet.

Tigers Fan

[Jan1ce]

Hi Janice
I regret that you appear to have fallen foul of the NHS beaurocracy which is designed to prevent health tourism... Be careful about what you say about how long you are going to be here, you will need to convince (and maybe prove to) the NHS that you will be living in the UK continuously for a period of more than six months in each year. If you cant do that then you will not be entitled to treatment on the NHS even if you are a British citizen. (I work in the NHS)

Thanks for that. Yes, I have encountered that before. It's a strange situation. How can I prove I will be in the UK for more than six months until I *have* been there six months. Catch-22. When I came to the UK after being away for several years I was really fortunate because I was in email contact with the hospital and clinic where I meant to be treated before I got there - a consultant had me on his books and all my records in his hands. Not a question was asked and everything went well. I don't suppose I can count on that indefinitely!

[Jan1ce]

The NHS is a lottery about what kit you get, if you get any, and Big G only knows how long it will take. Over there, you can choose what you want and only have to pay for one third of it, and it will be at your bedside within a couple of days (it took a US company 36 hours to have mine in my hands).

Well, I am not in the US and will have to buy a Canadian machine in order to claim any money back. I totally agree that this side of the ocean and Canada even more so than the US we can choose where to be treated and by whom. Therefore, I think I will be sticking with getting set up here and then taking what I end up with on the plane with me. I have an appointment on Thursday that should get me sorted.

I'll tell you what I would do were I in your position. I'd high tail it back to my physician/sleep clinic and confirm the diagnosis of OSA, then have them give me a prescription for an APAP (unless they advised me differently in which case I would accept their advice if their reasons made sense to me). I'd talk to them about the most suitable mask, try some on if they have samples.

Yes, will do. And yes will do.

I would research on line to find the best machine at the lowest price and I would buy it. Similarly for a mask. The prescription will tell the machine vendor what settings you require. Mask, hose and machine arrive, I'd plug them in and connect them up and I'd play all afternoon with them so I was familiar with them by bedtime. I bought a RemStar 'M' Series APAP with heated humidifier in the US. It has been fixed under warranty in the UK by the maker, no questions.

Hmm. I am going to look into all this and I am hoping that one thing I could do is say no thank you the internet offers it at this price and see if they come down a bit.

After a few good nights sleep, I'd file a claim for 2/3 my costs with my insurance company. I'd fly to UK in due course and visit the NHS and get the ball rolling over here.
This way, I'd be in charge of my own destiny, getting PAP therapy PDQ and all for one third the actual cost! This is a no brainer for me, especially considering the NHS lottery.
You turn up at Hackney Sleep Clinic with a PAP machine already in your bag, they will be helpful about masks and on-going studies, I bet.

Yeah, not sure how that works. I'm here, I have my machine. What can you do for me? That sort of thing? I'm getting my partner to make more enquiries but it's such a maze for me right now, as you can imagine. It may also help that in the UK I am considered an OAP (sheesh, me!!!) while not here in Canada. Anyway I have the appointment with my sleep doc on Thursday morning but mostly to get the records and the prescription - I don't like dealing with him. He's not friendly or willing to be encouraging or help me make a decision based on my circumstances. I realise that no one else cares that I am severely hindered now in my attempts to get back to the UK, my life, and my partner. So really I have turned into my own advocate and champion.

Will keep posting and hope my news just gets better. Thanks! I needed someone to stop beating about the bush! I'm happy to make a decision but how can anyone do that when they aren't not armed with the information needed to do so!