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The Snoring & Sleep Apnoea Forums

It's time to speak out

Share your experiences with CPAP, request help, find out the latest developments ....
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dan
Site Admin
Posts: 335
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Location: Reigate
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Post by dan » Tue Sep 19, 2006 5:41 pm

BigEars wrote: www.sign.ac.uk/pdf/qrg73.pdf

Also check out already existing advice from the above scottish organisation.


^^ This is an excellent document, well worth looking over.
Dan Kew
British Snoring & Sleep Apnoea Association

01737 245638
www.britishsnoring.co.uk
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Ann Bolton

Post by Ann Bolton » Mon Oct 23, 2006 4:57 pm

Hi All,
I live in Newcastle upon Tyne and I think they are a brilliant Health Authority. (Tyne & Wear) Anyone who needs a machine gets one. When I was first diagnosed five years ago the doctor informed me that they had 500 patients now they have 2,000 and are getting 25 new patients a week and have enought machines for them all. I got mine the day I was diagnosed. I have been really surprised to read that some people are having to buy their own or are having to wait for many months. This is not right. Hope all Health Authorities get their act together.
Good Luck to you all. Ann

Jackie2

Post by Jackie2 » Mon Oct 23, 2006 11:16 pm

Ann, Jackie again. Just read your message. Aren't you luck in your area. The Bristol area only give out between 25 and 30 every 3 months!!! I wrote to my MP and Chief at the Hospital Board telling them it wasn't good enough and Bristol needed more funding. Actually my Consultant asked me and his other partients to please do this. I was awarded a machine last week and now wait to hear from the sleep unit. I started investigating my sleep problem nearly a year ago and it has taken all this time. Best wishes Jackie

Roberto

Post by Roberto » Wed Oct 25, 2006 9:20 pm

After reading people's comments here, I truly consider myself exceptionally fortunate to have a CPAP machine. When I was diagnosed by the RSSC at Papworth 3 years ago, I got my machine that day. My diagnosis happened on my first appointment there and I was referred only a short time before that. Reading some of the terrible stories of people who have had to wait years or are still waiting is simply incredulous !

N.I.C.E. have had plenty of bad press recently with passing (or not) drugs for cancer and Alzheimers. Surely the long term savings and benefits afforded to the NHS by issuing CPAP devices, as well as the relief they provide to sufferers is a weighty enough reason.

It would seem to boil down to the management of funding within each Primary Care Trust that dictates who gets CPAP and how many they provide.

Whatever I can do to campaign and help get more sufferers the CPAP machines they need, I will do. Just let me know :)

Rob.

Jackie2

Post by Jackie2 » Thu Oct 26, 2006 9:55 am

Hello Rob. How lucky were you! Got my CPAP machine for keeps yesterday. Only taken nearly a year from beginning to end. Got it on the NHS. In this area funding is poor. I wrote to my MP and Chief at the Local Authority telling them that funding is poor in this area (registrar asked patients to do this. Not quite sure what you could do as services in your area are good. Maybe the PM would like to receive a letter from you and you could point out then the plight of the situation for a lot of us! Best wishes.

ceejayblue
Major Snorer
Posts: 164
Joined: Sun Aug 08, 2004 9:34 pm
Location: Erith, Kent

Post by ceejayblue » Sat Feb 03, 2007 12:26 pm

I'm luck too down where I live. I have two local large hospitals, Queen Mary's at Sidcup and Queen Elizabeth at Woolwich. When my GP referred me to QMs regarding my rhinitus I had a 4 month wait for an appointment to see a consultant, at that visit he diagnosed sleep apnoea and referred me to QE's sleep clinic. Within two months I had an appointment, at the first one I was given a home sleep test to do and on the Monday morning when I took the test stuff back they gave me my CPAP machine! A week later I went back, they tested the results on the machine and told me that I could now keep it for good!

That was 2 years ago and I have had six monthly checks and they have tried different masks with me, resulting that this last visit I was given the Mirage Activa Nasal mask, which is better than my old mask. They now have so many people attending the sleep clinic and the respiratory clinics that they only need to see me once a year!

I have nothing but praise for my local service and feel so sad that the rest of the country don't take this awful condition more seriously.

Visiting Snorer

Re: It's time to speak out

Post by Visiting Snorer » Wed Mar 12, 2008 9:22 pm

Discussed this with my Consultant at my review last week and NICE have now concluded their review and have advised that CPAP is the best treatment this will now mean that NHS Trusts will have to provide CPAP machines free :D :D :D

Guest

Re: It's time to speak out

Post by Guest » Tue Dec 30, 2008 10:11 pm

im not too sure of the basis for this thread
im in nottingham and have had no problem at all getting a cpap machine , not that i flipping want one i am only using it , very badley for about 6 weeks now , so that i can get my driving licence back from the dvla .
the only problem i did find is that the seal failled after the first month and they gave me a new one but when that did not work too well that was it i was told to go away and get used to it !!

Alsacienne
General Snorer
Posts: 2636
Joined: Sun Dec 11, 2005 10:26 pm

Re: It's time to speak out

Post by Alsacienne » Sat Jan 03, 2009 1:48 pm

Guest, you must persevere with using your CPAP! It's of no use to you if it's sitting like a high quality ornament on your bedside table ........ though I'm sure you know that already.

If you feel that the mask is uncomfy, go back to the clinic/sleep centre and ask for help and advice. You may need to change the type of mask you are using, and it's just a question of trial and error.

Having mentioned the word trial, might I risk reminding you that even when you get your driving licence back, you still need to continue using your CPAP every time you nap or sleep. OSA cannot be cured, and you are sadly stuck with this for life (as are we all!). By using your CPAP you are MANAGING your OSA, and if you don't, then your problems will come back to bite you on the bum so to speak. With your CPAP you significantly reduce the dangers of a heart attack or a stroke during your sleep, but if you don't use it, the dangers are still there and your risk of suffering either of these life-threatening conditions rises enormously.

Please don't kid yourself. A CPAP is not merely a means to getting your driving licence back, but the most effective method of controlling your OSA, increasing the quality of your sleep and allowing you to live a healthier life when awake.

leng

Re: It's time to speak out

Post by leng » Tue Feb 03, 2009 9:09 pm

I fully support Alsacienne, keep trying, yes it is not the easiest thing to get used to, mask comfort, noise, and how I look are all minor issues, pipe dragging against your face we all have been there, compared to the risks. Quick look and you will soon find evidence to suggest death can occur if not managed.

We all know from the early days it was hard to get used to, mind you from my perspective, I was not going to let it get in the way so became very bloody minded that this was my lot................ and so got on with it, it was my family that had bigger issues with it than me.
There are several different masks around and although your clinic may have issues with you having more than one, they are recyclable, and just promise to return it if you cannot get on with it.

When working you soon feel the benefit.

tmsheffield

Re: It's time to speak out

Post by tmsheffield » Sat Mar 07, 2009 4:18 pm

Hi all, hope your all ok.
Having read through this thread I decided to set up a petition with gopetition.com.
What I thought would be good is that if as many people sign the petition, I can then pass it onto our government.

Please follow this link:

<a href="http://www.gopetition.com/online/25889.html">Online petition - Obstructive Sleep Apnoea Treatment</a>

P.s Dan the man, I hope you didn't mind me using the britishsnoring website as a website link from the petition site?

leng

Re: It's time to speak out

Post by leng » Sat Mar 07, 2009 4:31 pm

toby your link does not work, but good idea anyway, and I will support any need to spead the word.

tmsheffield

Re: It's time to speak out

Post by tmsheffield » Sat Mar 07, 2009 7:55 pm

leng wrote: toby your link does not work, but good idea anyway, and I will support any need to spead the word.


Sorry Leng ok all folk need do is click on this link:

http://www.gopetition.com/online/25889.html

Then when the page comes up scroll down and click on the blue box that says 'sing the petition'

Hope that helps

Bill Bolton

Re: It's time to speak out

Post by Bill Bolton » Sun Mar 08, 2009 2:22 am

tmsheffield wrote: 'sing the petition'

Oh no, not singning for snorers again.... :lol:

Cheers,

Bill

andysnorer

Re: It's time to speak out

Post by andysnorer » Thu Apr 02, 2009 9:59 pm

Anonymous wrote: im not too sure of the basis for this thread
im in nottingham and have had no problem at all getting a cpap machine , not that i flipping want one i am only using it , very badley for about 6 weeks now , so that i can get my driving licence back from the dvla .
the only problem i did find is that the seal failled after the first month and they gave me a new one but when that did not work too well that was it i was told to go away and get used to it !!


OK, first of all, you have been very lucky to get a CPAP machine easily. Secondly, your attitude could land you in jail. If you have an accident as a result of OSA then you will be investigated. Your CPAP machine will be capable of recording how many times you use it, and for how long.
Get used to it, because it could save your life and maybe that of an innocent person. Nobody "likes" CPAP, but it is necessary for us to lead a normal life.

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