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In the UK, not sure how much to say... - Printable Version

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In the UK, not sure how much to say... - Boxermum - 07-14-2021

..... to my sleep clinic.

I live in the UK and was diagnosed in July 2019, since then if my AHI was below 5 then they weren't interested in talking about anything else. In April my AHI started to go out of control and I asked for help. I have only had 1 further consultation since diagnosis so not much bother to them. They have literally not given one ounce of help, no suggestions for improvement. The only thing they did was to swap my CPAP to APAP in the hope that the higher pressure would resolve things, it didn't.

I am so happy to have found this board and OSCAR like Thanks

I have always been told not to adjust my machine myself, but I decided 'sod it' it's my body, my therapy, I need to improve things for me. All of your suggestions have worked but, how much do I tell the clinic about what you do and about OSCAR. I want to shout your praises from the rooftops and tell everyone here to join but I don't want to jepardise what you do. 

I am a member of a FB page here for sleep apnoea and I despair at some of the things I read even to the point that someone was told to find an APP to diagnose his sleep apnoea Huhsign

So what do I tell them?

RE: In the UK, not sure how much to say... - Gideon - 07-14-2021

Tell them of your success here.

RE: In the UK, not sure how much to say... - Boxermum - 07-14-2021

(07-14-2021, 01:09 PM)Gideon Wrote: Tell them of your success here.

thank you. I want to have a good old rant at them for their lack of knowledge. They are doing so many patients a total injustice.

RE: In the UK, not sure how much to say... - Phaleronic - 07-14-2021

Good on your for taking control of your therapy.  I realized that my DME was a complete idiot and my sleep doctor only prescribed the baseline pressures for my apap.  Once I was able to look at my own data I was able to adjust my machine according to what I needed. Smile

RE: In the UK, not sure how much to say... - factor - 07-14-2021

(07-14-2021, 01:00 PM)Boxermum Wrote: ..... to my sleep clinic.

I live in the UK and was diagnosed in July 2019, since then if my AHI was below 5 then they weren't interested in talking about anything else. In April my AHI started to go out of control and I asked for help. I have only had 1 further consultation since diagnosis so not much bother to them. They have literally not given one ounce of help, no suggestions for improvement. The only thing they did was to swap my CPAP to APAP in the hope that the higher pressure would resolve things, it didn't.

I am so happy to have found this board and OSCAR
Sounds like my other Post...
My dad used to have a saying..  The person who cares about you is YOU...  
The thing with Healthcare is for the most part its Reactive Care.  Its not Proactive Care.  Like the Police (bobbies?) they dont come to your house and say you need to leave in 10 mins you will be robbed.  They come later and help you file a report and take notes about what happen.  
Like you said its your body and your life.  You take care of YOU... 

I-love-Apnea-Board

RE: In the UK, not sure how much to say... - factor - 07-14-2021

(07-14-2021, 01:22 PM)Boxermum Wrote: They are doing so many patients a total injustice.

We will be here.  Send all your friends we will help them too..  We want them all to Sleep-well

RE: In the UK, not sure how much to say... - Boxermum - 07-14-2021

Thank you all. I am trying to send people to you. The UK needs you ???

RE: In the UK, not sure how much to say... - SuperSleeper - 07-14-2021

(07-14-2021, 04:17 PM)Boxermum Wrote: Thank you all. I am trying to send people to you.


One method would be to print out a few copies of the forum pamphlet (flyer) and hand them out to people along with a few short words, telling them of the forum here.

You can get a color or grayscale copy of the flyer here:

http://www.apneaboard.com/forums/Thread-Admin-Note-Apnea-Board-Handout-Flyer

RE: In the UK, not sure how much to say... - hegel - 07-14-2021

My dme sold me new resmed autosense at a huge discount. I also get masks at an 80% discount. HOwever the autosense came without a card. I emailed my dme and basically told him that I needed a card so that I could use Oscar and make adjustments. He had no problems with that and sent a card in the mail. If you can make a dme understand that YOU understand what's going on and what your doing, they should have no issues with you managing your own care. After all, they can see what's going on as well.

so I suppose it depends on the particular dme.

RE: In the UK, not sure how much to say... - Boxermum - 07-15-2021

(07-14-2021, 04:40 PM)hegel Wrote: My dme sold me new resmed autosense at a huge discount. I also get masks at an 80% discount. HOwever the autosense came without a card. I emailed my dme and basically told him that I needed a card so that I could use Oscar and make adjustments. He had no problems with that and sent a card in the mail. If you can make a dme understand that YOU understand what's going on and what your doing, they should have no issues with you managing your own care. After all, they can see what's going on as well.

so I suppose it depends on the particular dme.

The UK just don't seem to like you to be proactive in your care. They tell you not to adjust your machine  or change anything without their knowledge but then they are not interested if your AHI is less than 5.  There are so many people saying they they are not being helped by their clinic. I am on a mission ?