Licence back + good news for Essex

[tonybrentwood]

Hi Folks,
Back on line after a break, have been on CPAP for 38 days now, and although waking a couple of times to rip the mask off in a panic I’m really feeling the benefits. Plenty of energy and no more afternoon naps.
The best bit of all is I’ve got my licence back! I contacted the DVLA, they sent a form which I filled in and my licence was back to me in a fortnight. It feels great to drive again, and my wife (chauffeur) is delighted as she hates driving.
I got a letter from the boss of the Mid Essex trust which says that as a result of my complaint to my MP about CPAP provision they are setting up a sleep apnea unit in Chelmsford to cover mid Essex, and it should be up and running in three months. They also say that they will not require patients to buy machines or to gift them in return for masks and servicing, so maybe all the letter writing and hassle was worth it. I think I’ll wait until it’s in place then try my luck for a nasal pillow to see if it stops my occasional ripping off the mask panic attacks.
Nice to be back and to be able to read all the interesting posts, I’ve learned so much by browsing the Forum, I even get a laugh sometimes.
Regards,
Tony.

[silvercarper]

Good news.
Perhaps I should write to my MP that my hospital could not supply me a full face mask.

[tonybrentwood]

Hi There,
It might work, worth a try. BBC Essex radio are talking to me at around 7am tomorrow morning about my experience with CPAP provision, 95.3 FM or 103 FM DAB in case you want to phone in and give an opinion. I think this CPAP provision postcode lottery needs sorting out, maybe a few overpaid MP's need to get told.
Regards,
Tony.

[Tigers Fan]

Times Two

Hi Tony

Double congratulations!! Absolutely and totally well done for advancing your local NHS! and being able to drive to your various interviews!

I'm delighted for you!

TF

[tonybrentwood]

Hi Tigers,
Thanks for that, it seems to have given the trust the jolt they needed.
Silvercarper phoned in too, really helpfull to have someone else phone in after the interview, added credibility to my argument.
In case you didn't get to listen it is on http://www.bbc.co.uk/iplayer/episode...ex_09_06_2009/
just slide the slider about a third of the way to the right until you come to about 07.10 and you should hear it. There were a few people phoned in afterwards to make comments, they're quite interesting.
Regards,
Tony.

[threewheelweave]

Tony You Are A STAR!

Hi Tony

What can we say - a one man crusade ending in success!

Top notch result, not just for you but everyone following in your trail blazing tracks!

Congratulations and well done for all your efforts for the OSA cause!

Cheers

TWW
UK

[James @ Intus]

Excellent job Tony, great to have warriors like you fight for the cause (and get surprisingly fast results). If everyone repeats this around the country, I'll be without a job soon

[tonybrentwood]

Oops, sorry James,
I'll ask the Essex Trust to cancel the new Apnea department in case they set a dangerous precedent lol. You're so helpfull to me and everyone else on the forum that I don't want you to lose your job!
My local paper are doing another article this week about the trust finally providing a unit, that should be the last shot fired, then I can forget about fighting and relax.

Tony.

[John B]

New-member living in Essex

I live 12 miles south-south east of Chelmsford ... but was referred from the local NHS hospital in Chelmsford to the London Chest Hospital. They gave me the CPAP machine and I take it in every two-years for a service. No 'medical' follow-up, just checks on the machine!

So, how do I get myself involved with the new sleep ap unit in my county town?

John B

[tonybrentwood]

Hi John B,
Welcome to the forum, nice to have another Essex boy around.
I have to go to the London Chest Hospital as well, but the Mid Essex Trust are planning to open it's own clinic, unless they have changed their mind.
I am planning on contacting them if I don't hear anything about the unit within a few weeks, otherwise I'll be contacting the papers, local radio stations etc again to give them a shove.
If you do a search on my posts you'll see what happened to stir them into action.
Did you have to wait long for your machine from the London hospital, or did you have to buy your own like me? If you bought yours, did the trust make you sign it over in exchange for servicing? I'd be interested to know.
Finally I hope the CPAP is working as well for you as it is for me now that I've got my nasal pillows (far more comfortable and less claustrophobic than my nasal mask was). You can tell it's working for me because previously I could be heard snoring throughout the whole of essex, so I've probably kept you awake in the past!
Best regards,
Tony.

[Chipman]

Hi Folks,
Back on line after a break, have been on CPAP for 38 days now, and although waking a couple of times to rip the mask off in a panic I’m really feeling the benefits. Plenty of energy and no more afternoon naps.
The best bit of all is I’ve got my licence back! I contacted the DVLA, they sent a form which I filled in and my licence was back to me in a fortnight. It feels great to drive again, and my wife (chauffeur) is delighted as she hates driving.
I got a letter from the boss of the Mid Essex trust which says that as a result of my complaint to my MP about CPAP provision they are setting up a sleep apnea unit in Chelmsford to cover mid Essex, and it should be up and running in three months. They also say that they will not require patients to buy machines or to gift them in return for masks and servicing, so maybe all the letter writing and hassle was worth it. I think I’ll wait until it’s in place then try my luck for a nasal pillow to see if it stops my occasional ripping off the mask panic attacks.
Nice to be back and to be able to read all the interesting posts, I’ve learned so much by browsing the Forum, I even get a laugh sometimes.
Regards,
Tony.

It takes a few months for the mind to accept the fact that an elastic clawed albatross is setting on your face at night. Don't worry about dumping the mask a few times. Just pick it up and put it back on.

[tonybrentwood]

Hi Chipman,
No more ripping masks off for me now I've got my nasal pillows, so much better, not at all claustrophobic and 'clingy'.
Regards,
Tony.

[dravidio]

Hi Tony

I got a nasal pillows mask to try when I was having early difficulties but found it more difficult to use than the full facial one which I have gone back to. Good to hear that it worked for you. I am making improvement with the full facial mask - though I still have a way to go...

[tonybrentwood]

Never tried a full face mask, I would have thought that as I was feeling claustrophobic with a nasal mask I would have felt even more so with a full face? The nasal pillows I have now are so small, a little tube with two tubes sticking up and a very small strap setup, it hardly feels like I've got anything on. I can wear my glasses with it on as well, so I can watch tv and drop off to sleep. Glad you're making improvements with the full face you have, I guess success with CPAP is all about perseverence.
Best rgards,
Tonywithtwoprongsstuckuphishooter.

[John B]

Any news?

Dear Tony

Any news of the development in Chelmsford? I recently visited my GP (nothing to do with sleep) and mentioned it to him. He said he knew nothing of the proposal - so I guess you are the best person to ask!

London Chest Hosp gave me (yes, gave me) the C-Pap machine - gosh it must be five or six years ago. There were no follow-up appointments but the sticker on the machine recommended that I take it back for a service every two years - and that is what I do. My latest visit was because the original mask broke and I had to go and have a new one fitted. (The plastic where the straps are threaded through split.) Although I was warned, when I made the initial call to set up an appointment, that I might be charged for the replacement mask, nothing was said when I collected it. I didn't know that getting these pieces of kit for free was unusual!

Fingers crossed for Chelmsford.

John B