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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 ....
leng

Re: It's time to speak out

Post by leng » Fri Apr 03, 2009 8:32 am

mac

The post code lottery style of approach to cpap, is frustrating, but not only does it include supply of equipment as I found out with my local authority.

I first complained about osa symptoms about 5 years ago, but at that time the health authority localy did not have a nhs clinic, so never got refered, investigated or diagnosed.

The issue with DVLA from what I understand, once the condition is being treated and managed by the clinic, you will not have a problem. I also informed my insurance companies, knowing they would wriggle away from any payment if they could, but none of them had an issue with it. (With reflection the wording managed and undertreatment from the clinc, & following medical recomendation, may be the words that come in handy.)

jippity

Re: It's time to speak out

Post by jippity » Sun Mar 07, 2010 2:31 am

PLEASE sign my petition for everyone in the uk with sleep apnoea to recieve treatment! Pass it along to your friends, family and colleagues!

http://petitions.number10.gov.uk/CPAP-for-all/

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

Re: It's time to speak out

Post by Alsacienne » Sun Mar 07, 2010 8:20 am

Is it permissable for me to sign your petition even though I don't live in the UK anymore Jippity?

User avatar
choosysue
Major Snorer
Posts: 165
Joined: Mon Oct 12, 2009 6:51 am

Re: It's time to speak out

Post by choosysue » Sun Mar 07, 2010 10:27 am

Hi Alsa,

Excuse me jumping in, I've just been there, think you have to have a resident uk address, don't know if there's another way round that?

Take care,
Sue

jippity

Re: It's time to speak out

Post by jippity » Sun Mar 07, 2010 10:42 am

Hi Alsa and Sue

Thanks for signing and being willing to sign :D

There is a drop down box for expats to choose where they are now

User avatar
choosysue
Major Snorer
Posts: 165
Joined: Mon Oct 12, 2009 6:51 am

Re: It's time to speak out

Post by choosysue » Sun Mar 07, 2010 10:43 am

Hi Jip,

My Dad lives in Spain, could he sign ???

Our posts crossed, I see he can.

jippity

Re: It's time to speak out

Post by jippity » Sun Mar 07, 2010 12:55 pm

Hi Sue

lol yes, he can :D

Mountain

Re: It's time to speak out

Post by Mountain » Wed Apr 18, 2012 11:56 am

I will sign this when I get home and then cajole or bully as many of my friends, relatives and colleagues as I can manage into signing.

Edit:
Sorry the link just goes to the general epetion page- has it 'expired'?

Thanks

Vince Green
Major Snorer
Posts: 158
Joined: Thu Feb 07, 2013 6:40 pm
Location: Pinner Middx

Re: It's time to speak out

Post by Vince Green » Thu Feb 07, 2013 7:11 pm

This is the first I have heard of this, although I am quite new to the world of SA.

My route was referral from my Dr.

Appointment at Harefield Hospital within 3 weeks where I was given a machine to take home for a sleep test. Took machine back the next day.

Appointment within a month where I was told yes I have SA. Then saw the person who issues out the machines who said they will order one that day for me and to come back in a week to be given it.

I was not aware that this was a postcode lottery situation

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

Re: It's time to speak out

Post by ceejayblue » Fri Feb 08, 2013 9:23 pm

I had the same experience as you but there are others on here who have had to wait for quite awhile or buy their own machines.

You will find that your quality of life will improve greatly once you start using your machine. My life was a wreck before I got mine. Now it goes with me on holiday, if I nap at home during the day and has basically saved my life.

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

Re: It's time to speak out

Post by Alsacienne » Sat Feb 09, 2013 5:53 pm

Now it goes with me on holiday, if I nap at home during the day and has basically saved my life.
WELL SAID CEEJAYBLUE!!!

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

Re: It's time to speak out

Post by ceejayblue » Sat Feb 09, 2013 6:41 pm

Thanks Alsacienne.

OSA is such an easily treatable condition, but its a horrible condition and I hate looking & sounding like Darth Vader - although my 2 year old granddaughter thinks its really funny and I have to put the mask over her face (I don't turn it on!). It shouldn't be a lottery as to whether you get it or not, although I suppose now that my local health authority is bankrupt (true - been on the news!) funds will not necessarily be available for everyone to have a machine as quickly as I got mine (13 years ago now). I sometimes think people who are newly diagnosed or who have someone in their family who has OSA don't appreciate just how much a difference having a CPAP will make to their lives. Its important that people don't give up using the machine and if they have problems with the mask they must ask their clinic for an alternative.

I'm very lucky, my clinic is very supportive and will always answer questions over the phone or if something goes wrong with the machine or the mask then they will put it right immediately and tell me to come to the hospital to get it sorted or post out new filters etc.

When I was first diagnosed people said to me that they expected me to only have to use the machine occasionally, but I had to explain that I cannot go to sleep without it or I stop breathing and when I do start breathing again the noise from my snoring would shake the windows! Despite there being some tv programmes over the last couple of years I still worry that people don't know more about OSA and really wish that there were leaflets in doctors' surgeries and hospital waiting rooms like there are for diabetes, high blood pressure etc.

Suse
Brigadier Snorer
Posts: 514
Joined: Thu Apr 15, 2010 10:48 pm
Location: Glasgow

Re: It's time to speak out

Post by Suse » Sat Feb 09, 2013 11:47 pm

I totally agree ceejay...I often feel like I'm on an information mission as soon as I mention OSA. In fairness though more people now recognise it and have some idea of what it is (even if some wildly interesting idea that's not too close to reality). I used to have to explain much more, but a lot of people now say 'oh I have a friend/uncle/relative' with that.

There is a slow but sure increase in knowledge (if not understanding) going on - but I think that having leaflets in surgeries, occupational health departments in workplaces etc would increase the chance of the undiagnosed asking themselves some key questions and perhaps getting the treatment they need sooner rather than later!

User avatar
Mr Mouse
Major Snorer
Posts: 188
Joined: Thu Mar 28, 2013 9:19 am
Location: Haverhill, Suffolk.

Re: It's time to speak out

Post by Mr Mouse » Wed May 22, 2013 4:21 pm

I guess I was really lucky then, not only am I only an hour away from Papworth who are just great. But it only took 13 weeks from my GP referring me to when I got my cpap machine, it just seems incredible that there should be such a difference between treatment times up & down the country.

Does anyone currently have an active petition that I could sign to show my support, I'm relatively new to this site having only been on treatment for just over 9 weeks now.

Gerry. :)

Guest

Re: It's time to speak out

Post by Guest » Sun Aug 25, 2013 11:39 am

hi everybody
I have been using a resmed mask and machine for some years and have felt no benifit from it at all.I still find myself falling to sleep during the day and wake with a headache in the mornings has anybody else experiencing this.

Regards Richard

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