Unbelievable!!

[tonybrentwood]

HI,
After reading other posts (especially the ones from Sussex) I went to see the specialist today at the London Chest Hospital expecting to get a CPAP machine within a few weeks. The specialist said I needed the machine, but there was at least a three to four months wait! As I can't drive until compliant I couldn't wait that long so it's cost me £364 to buy one, being delivered Thursday. They had the cheek to say they will supply one mask and one service a year but only if I agree to give them the machine when and if I don't need it any more. I can't believe that the Essex trust won't provide machines quickly, if Sussex can provide quickly and for free why do I have to pay because of where I live?
I'm writing to my MP, but don't expect much except sympathy but no action. I'm off to vent my anger in a non physical way now!
Regards,
Tony.

[silvercarper]

I have been told that its the Primary Care Trust, for your area, who should be written to.

[silvercarper]

If brentwood is your addresss then this link might help

http://www.swessexpct.nhs.uk/

[tonybrentwood]

Hi,
My Healthcare Trust is Mid Essex, I've written to my MP, the trust and the local paper, but I guess that as I've already pais for it and it comes tomorrow I'm stuck with paying.
Regards,
Tony.

[Tigers Fan]

If it helps ....

Hi Tony

If it helps you feel any better, there are many of us in the same boat as you. I know that doesn't put the money back in your bank account, though.

I bought my RemStar in the States in the times of two dollars for a Pound and a few weeks later learn from GrumpyBiker that in my place of birth, Leicester, the NHS hand out the same model FOC. Not just your bog standard CPAP but a big, fat cherry from the top of the tree. And they have a walk-in centre for CPAP-ers! (Hoseheads, if you don't have your reading glasses on!)

Tigers Fan

[tonybrentwood]

Hi Tigers-Fan (Tigers as in GGGGRRRRR or something else?)
I got more annoyed as time went on about having to pay so as well as writing to my MP I cotacted my local paper, and they are coming around on Monday to take photo's and do a story about the lack of CPAP machines n Essex. It won't help me as I've already paid, but maybe it will speed up provision for patients after me. I've submitted a thread on the CPAP machine posts to ask about peoples experiences with waiting times to give to the reporter on Monday, but it hasn't appeared yet until cleared.
Regards,
Tony.

[Tigers Fan]

Plenty of Grrrrrrrrr!

Hi Tony

Tigers as in - we're going to thrash the Blues and go on to win the Heineken Cup as well as being Top of the League and then win the Premiership Championship.

Tigers as in - Leicester Tigers. Yeahhhhhhhhh!!!!!!!

I very much like your stance and stir on behalf of future Essex hoseheads - good luck with the campaign. If you are successful - please let us know - then I just may copy you here in Southampton!

One of the thousands of fans and supporters - Tigers Fan

[tonybrentwood]

Ah, now I know there are different kinds of Tigers! I bet the kit is striped too!
I'll let the Forum know what happens with my campaign. I'm not holding my breath for quick change though, but I'll keep plugging away.
If you'd like to read the letter I've sent to my MP PM me and I'll send it.
C'MON THE TIGERS!!!

[Hamish 2009]

In Maldon and a long term sufferer

Hi Tony I live in Maldon and been a sufferer for the past 10 years, I have had to pay for all my machines and masks, I have never had assistance from the NHS even though I am registered disabled and dont pay for my prescriptions (I have diabeties and heart trouble) so what you have done to improve our cause is fantastic. would love to know how things go will certainly keep any eye on this forum to which I have just joined, are you at the Longfield or Blackwater practises. Longfield are more atuned to our needs but this might not be the case with the Doctor you are seeing.

[Alleycat]

Hi Tony
Unfortunately it is the whole NHS postcode lottery....depending where you live depends on the service you get.
However, there is now something called the 18 week wait. Which means you should never have to wait more than 18 weeks from GP referral to treatment, so this includes all the time it takes to wait for your sleep study and then see the consultant and then to CPAP. Failure to comply with this means a fine to the trust.
If there is another hospital that you can get to that has a shorter waiting list, patient choice means you are entitled to move your care. Unfortunately you are a bit too far away from a lovely hospital I know that has about a 2-3 week wait and will usually fit in urgent cases (eg drivers-ie those who need to drive for work, very severe cases or simply patients that have travelled a long distance) the same day or within the next few days where possible.

Keep badgering your MP about the unfairness of the postcode lottery!!

AC
xxx

[ukjoel]

I was under the impression that the 18 week rule didnt just incur a penalty for the trust but allowed you to request treatment elsewhere or privately to be paid for by the trust.

[Richard]

Hi Joel,

The NHS now operates its 'Choose & Book' scheme. If your GP has agreed to refer you for a specialist sleep-study, you can choose which sleep-centre you go to. It may not be the one closest to home, but the one with the shortest waiting-list.

I would suggest you find, say, the five nearest to where you live, give each one a call and find out how long you would have to wait. Then make your choice.

Another point to think about: if you find a sleep-centre with a three-week waiting-list, how long would you have to wait after your sleep-study until you have your CPAP machine? In fact, the machine would be supplied by your local PCT anyway.

The NHS offers the patient the opportunity to choose where they are treated, rather than simply going where the GP thinks they should go. This suggests that, if you are unfortunate enough to have a multitude of disorders and conditions, then the 'Choose & Book' scheme could involve you travelling the length and breadth of the UK to seek treatment. Think of the Airmiles and Nectar points you could collect!

[mintra]

I recommend crime

Drug addicts account for a lot of crime, your need is more.

Steal money or things you can sell for money then look in the ads, get an apap machine which can be used as either cpap or apap, get the nhs people to advise you.

I loath the concept of private health, or paying for anything when it should be on the NHS anyway, but dont let this political thing stop you buying one yourself.

I have an autoset spirit 2 and I sometimes use it as apap or cpap depending on mood. There was one in the ads for £275

If you get caught then blame me for recommending crime.

On the other hand a couple of months is not a long wait really.