I am a lot peeved

[ElleCee]

I called the sleep clinic today to say that I am having trouble sleeping properly again and think that I probably need to have my pressure dropped due to loss of weight. (I have tried altering it on my own but am not succeeding) To be sure I would need another sleep study with an apap and was told that I can't just go back to them any more. They will not let me use a finger pulse thingy at home and I need to get a referral again through my GP.
I don't quite understand why as I was only diagnosed in January.
I now have to go through the whole process again via the respiratory clinic.
No wonder the NHS is in trouble!

Do other clinics act this way or are they supportive? Is it just my clinic?

Signed: One very discruntled person who is and fed up, sick to death of having osa.

[Richard]

Hi Lorraine,

You are being shoved aside by someone who doesn't understand the rules.

If this is the clinic that set you up with CPAP therapy, then they are responsible for treating your OSA for now and the future. Having to start all over again is nonsense.

Ask to speak to the clinic manager, don't be fobbed off, quote your Patient Number and tell him/her your problem. If they persist tell them you will refer them to the Health Ombudsman.

best regards

Richar

[ElleCee]

Thanks Richard,
As I wrote in reply to another post....

I saw my GP this evening and was given the paperwork to book a new referral on-line which I have done for Dec 24th.
In the meantime I am going to try a few nights without cpap and note down my waking times and then after a few days try using it again and noting the times again just to see if they are different. Having said that, using cpap may be what I need but I still need to find my optimum pressure which I can't do without a night on apap. I don't fancy a night in the hospital though but I may not have an option.
My pressure was set at 15 and I know that it is too high, I have lowered it to 12.6 but that still isn't right. I have no idea if it is too high or too low now and usually by about 1am I am giving up with it completely and sleeping without it.
My clinic doesn't seem to be properly recognised as in there is no particular department. The room that I go to is at the end of the corridoor where they have the respiratory department and is not listed on the website. It is run by one man on his own as far as I can tell.
No doubt I will find out more when I go in December to the respiratory clinic.
Happy days
Lorraine

[Sparticus]

Shocking

Hi Lorraine
Thats shocking! Im glad I kept my apap. My clinic are there for me night and day, if I have a problem I only have to call them. I guess I am very lucky as up here I have a hospital dedicated to sleep disorders and they cant do enough for you. Sleep labs, nurses, doctors, clinics the whole shabang. It does seem that its a postcode lottery on how you are treated, Im glad I left England when I did. My advise is make a diary on how your sleeping for now, if your tired up the preasure and if your not then lower it until you find its just right but if your worried then try phoning my clinic for advise, Just ask for the sleep clinic

http://www.nhslothian.scot.nhs.uk/hospitals/rie.asp

[ElleCee]

Hi Sparticus,
I am doing as suggested and keeping a note every night of what times I wake up and whether I am using the cpap and if so what pressure it is set at.
I have this sneeky suspician that when I do go for my appointment they are going to tell me I need to go to another hospital.
It is really nice of you to suggest calling your hospital but I don't think anyone would appreciate me doing that, although, I might just do it if I get fed up enough
Thanks also for the words of encouragement. I feel so good having lost all this weight but the OSA part is just getting worse. Still you win some, you loose some
Lorraine

[Berneta]

Pressure Problems

Hi Lorraine, I am so sorry that you can't get the OSA under control. I have to wonder how they feel about you turning the pressure up and down yourself. (Do they know that?) Here in the States--we are told not to alter the pressure settings ourselves-- or they will not treat us. What I got told is that if they set it where they think I need it according to a sleep study, and then I change it--then there is no point in them involving themselves further. In other words--If I alter my pressure on my CPAP--then I am pretty much on my own. I think that you do need another Sleep Study because you have lost a lot of weight (Which is great)--and that changes a lot of things internally, as well as externally. Now it could be that you have more loose skin inside causing problems with the OSA. I agree that if they can't, or won't help you, then you need to go to someone else. Maybe they think that since you lost weight that you no longer have OSA---some people need a lot more training than they have to treat people with OSA . Weight is not the only reason for Sleep Apnea. We are all worried about you--hope you can get this taken care of soon. Good Luck! xox Berneta

[ElleCee]

Thanks for the reply Berneta,
They know I have lost some weight but not how much because I haven't seen them since June. The technician has no idea if I need cpap any more or not, he is not interested in finding out. He lent me the oximeter a few times which helped in fine tuning the pressure before I lost weight but has said quite catagorically that he will not do that any more and if I need it checked I must go through the whole referral process again.
I will not say what I think about that on here for fear of getting banned!
No wonder the heallth service is in deep cack.
I am totally convinced that the respiratory dept is not where I need to be going but on that thought I will phone the hospital today if I get the chance and ask them directly.
Watch this space
Have a good day
Lorraine

[Richard]

Good morning, Lorraine

If you feel that no-one is listening to you, try going to www.chooseandbook.nhs.uk.

You can choose where to go, it doesn't have to be the sleep clinic nearest to where you live.

Hope this helps.

Richard

[Tigers Fan]

Hi Lorraine

If you have to start the whole referral process over again, make sure that you are referred to a clinic of your choice.

In the meantime, you could put your pressure back up to 14 cm and then reduce 0.5 cm every few days looking for an improvement. It takes patience to discover a new setting for your current weight - or a week on an APAP.

Here's hoping the problem is due to nothing more than weight loss.

TF

[Berneta]

TF--What about an APAP?

Hi TF, I am really concerned about Lorraine's problem. I never considered what happens with PAPING as some one loses a lot of weight. I don't think thats even been discussed here on the forum--or have I just missed it? Even if her pressure problems are nothing more than weight loss--the problem will continue as long as she is losing, and she needs supervision as part of her health care. Maybe while she is continuing to lose weight every week-- she should be using an APAP? It makes no sense for her to have to go back for sleep studies every couple of weeks or months. Eventually her weight will level off, and she could go back to a CPAP. What do you think about her asking them about that, and using an APAP while she is losing? Obviously changing the levels herself isn't working for her-- for one reason or another, I don't think I would be nearly as sweet about it as she is. I think I'd be a Witch about the lack of Health Care Supervision she is getting--and they would sure hear it.. What do you think about her asking for an APAP? I don't know much about APAP's --would that even work for her problem? x Berneta

[Tigers Fan]

Ah! Bernetta! You just don't know the joys of our NHS when one runs into an officious manure orifice. It can be good, it can be atrocious but what it consistently does with great expertise is to ignore patient requests.

Each area authority - called a Trust - is handed the same Government 'guidelines' and each Trust does exactly what it likes with those guidelines - except follow them, with a few notable exceptions. We refer to this as the 'post code (zip code) lottery' and bear it with British stoicism, rather than kick up holy hell.

But now we have a Royal Wedding to cheer us up. Many of us actually give a damn and not quite so many of us want a Republic and to fire the royal parasites. You lot did well when Mel Gibson won independance for y'all!

TF

[Berneta]

Bless Mel Gibson

I think maybe we Americans don't know much about the way of life in your part of the world. The only thing I know for sure is that right now--having a President is a lot like having a Queen. We're all in deep Crap! x Berneta

[Tigers Fan]

Oh! no no no no no!

You elect your President and you can get rid of him or s/he goes after two terms, anyway.

We, on the other hand, are stuck with the Royals forever, like it or lump it - short of a revolution, anyway.

Revolution need not be bloody, see http://www.republic.org.uk/ and join if you like what you see.

TF

[ElleCee]

Ahh, our wonderful NHS
I phoned to check that the consultant that I am seeing on the 24th Dec actually knows about OSA, guess what? They say I am going for a lung function test... cobblers. I try to explain my problem, then I get told that they don't know why I insist on going there when the nurse at my GP's surgery can do it. Then she finishes is all with "perhaps your problems are to do with the ashma". No, I say, it is to do with losing weight, perhaps I should go eat myself to death and then I can use the cpap as it is and not worry about the settings.
They then start having a moan at me for losing so much weight!!
FFS this is driving me crazy!
I called my GP and asked if they can refer me somewhere else and I get told that they can only go back to the consultant that diagnosed me in the first place. Well there was no one, just the technician with the oxometers.
Now I have no one and no where to go.
Did I read somewhere that I can hire an APAP for a night and get a reading sent to me? If so, please could I have the details before I go raving mad?
Thanks
Lorraine

[Tigers Fan]

Ring Intus and talk to James.

Don't go mad! A pink car is one thing, but a pink car with spots or hearts or flowers is beyond redemption!

TF