British Snoring & Sleep Apnoea Association

I was diagnosed with OSA back in April and still waiting to be referred back to the sleep clinic at Bristol. Anyone from the Bristol area with same story and if so what is the waiting time to be seen? I also informed DVLA back in April of this condition and to date they haven't stopped me driving. Fortunately I do not go far in the car and have never fallen to sleep or felt sleepy, so I guess I can carry on driving until told otherwise. GP says it is ok but don't drive if feeling sleepy. Now diagnosed it is frustrating as I want to get started on treatment, although I will have to purchase my own machine as no funds available in this area. Yesterday there was a bit about SA on a morning hospsital prog. (informed by Mother to watch!) I was taken aback by the size of the mask and head gear the chap was wearing and I felt unhappy afterwards. Is it as bad as it looks??

I had to wait 6 months before getting my cpap machine, thats in Edinburgh though.

Since then, they have been great in providing me with various masks to try.

I dont understand why you have to buy your own when the NHS provides them. It's shocking that they say they dont have enough money. I would be pushing for one from the NHS - I was provided with a machine, humidifier and had to try different mask - all this would prove pretty expensive.

Hope you dont have to wait much longer.

Rosie

Jackie,

I can only echo what Rosiebud has said about waiting times as 5-6 months is not uncommon , (I also went to Edinburgh).

I am also waiting to hear from the DVLA having told them in late March/early April and despite the fact that I know my consultant and GP have both received a request for a report and have both sent them a report. I suppose unless they tell you otherwise then you can carry on driving.

As for the mask and straps, try thinking about it this way. Would you rather look and feel a bit weird for a day or two as you get used to something that will improve your quality of life or would you rather carry on as before? When you look at it in these terms then the answer seems obvious and it does not seem so daunting. It may also help to give your machine a name as this can also make it seem less daunting.

I totally agree that the NHS should be paying for your machine and that nobody should have to pay for what is potentially life saving treatment. After all how many drug addicts have to pay for their methadone treatment? Why should people who have sleep problems be treated any differently.

Thank you both for replying to my questions. Apparently Avon Health Authority will only supply CPAP machines to Bus Drivers,Taxi Drivers straightaway. The rest of us have one month's trial on a free one and then we have to give it back. We can either buy one or go on a waiting list for a free one which currently is over 12 months. So that means if you can't afford one the health authority is well aware that treatment is good only to take it away after one month ,so back you go in life.

Write to your MP, that often has a surprising effect. CPAP is a very inexpensive effective treatment.

That is what I intend to do once I have been back to the hospital and they confirm the up to date situation as the information I received was on a leaftlet they gave me and dated 2002 but still applies. Probably waiting list longer by now or hopefully shorter.

Hi Jackie

Ive been under the team at bristol general now for about 14 years had my cpap about 13 1/2 years Ive never none anyone to have to buy their own machine When i had my yearly check up last October the bearings in my machine were begining to make a wineing sound so they just went to their store room and got me a new one. I changed to the sleep unit at Gloucester royal about 3 years ago but Adrain Mc Kendrick said to me that Gloucester didnt have much money for cpap users anyway i tried them but he was right anyway i went back to Bristol because they said they had a much higher budget for the machines and their appiontments were quicker. It has changed alot over the years ive been going their you used to be able to phone and speak direct to Adrain but now you have to battle through some secretary and you could go and see them when ever you needed to without an appointment but now if you turn up with out one you get turned away if i were you just give them a call and ask how long it will be untill you get seen again and if the secretary says your have to wait for it to come through the post be insistant and demand a rough date dont take any messing around this your long term health your talking about which if left untreated will slowly deteriate


Anyway hope this helps

Tas

Hello Tas. Very pleased to hear from someone being treated in Bristol. I have contacted the General Hospital to ask when I am likely to been seen again and they said should be in July for a sleep. Does that mean that I have to sleep over? Until I am seen I can't ask about paying for the machine as I am only going by a leaflet a Dr. at the BRI gave me just as I was leaving. She didn't tell me verbally!! I will certainly write to my MP and complain if I have to pay for it.

Hi everyone,.

My husband was confirmed as having OSA last week (Wednesday), he went to our local sleep clinic at the Norfolk & Norwich University Hospital for a mask fitting on Thursday, and also had his CPAP delivered (NHS) on Thursday, and was using it Thursday night.

Our local sleep clinic has a scheme whereby the sleep study is done at home with a Stardust machine (appointment on a Thursday, Stardust arrived on Friday), and despite three attempts to get the sleep study result (nasal cannula came off) it has taken only five weeks in total to get to being prescribed a CPAP machine and using it.

The waiting time on the list for the inital appointment was six weeks.

I am shocked by the length of time it appears to be in other parts of the country to get diagnosed and treated.

I think we are just lucky where we live here in Norwich.

I think I read your posting with me mouth open!! I started all of this back in January and on Friday week I will have a CPAP on loan for one month, after which time I will have to buy my own - No I am not a private patient but the health authority cannot afford it. I will be writing to my MP to complain about this and to the Health Authority- I will let you know if I get my money back. I am so pleased that your husband was treated so well and so quickly so it can be done, but we in Bristol are dead slow and stop. Although I am not looking forward to what is ahead I am keeping positive that it will work for me. If your husband can give me any advice on what to ask them at the hospital or tips I would be glad of them. I am not even getting an appointment to myself but have to share it with others but should I ask for a one to one I would have to wait for about l year. Jackie

As I said, I think we are lucky where we live.

Our local hospital are pioneering a completely home based service. The two consultants, Dr. Phillipe Grunstein and Dr. Orion Twentyman, used to send patients down to Papworth Hospital for overnight inital sleep study, but they have teamed up with a company in Bognor Regis called Respironics. After an initial consultation with the specialist, where he basically asked the Epworth questions (which included, to my horror and surprise, questions regarding my husbands sexual morning habits!!) he said that my husband "ticked all the boxes" and needed a Sleep Study. The Co-ordinator faxed Respironics there and then, and Respironics phoned my husband that day and asked where he wanted the Stardust machine delivered. It arrived next day, and it went backwards and forwards for three attempts before a result.

Our next appointment was to be 31 August, but I phoned the Co-ordinator and had a few fractious tears (as I am suffering as well), because my husband is a hairdresser, and you can only imagine what damage a tired hairdresser could cause to a client! I was told that our consultant was on annual leave until then. The other consultant looked at the sleep study tests, called my husband, and the mask fitting and delivery of the CPAP was achieved in two days. Respironics send a new SIM card every six months, and request that you change the SIM and send the old one back for analysis. The results of your last six months are sent to the consultant ready for your next appointment.

I believe the two consultants had to fight every inch of the way to get the support of the local Trust and the NHS to get this off the ground, but they have succeeded and boy! does it work.

I am shocked that so many of you have to wait so long......

Jackie - I hope you get a result from your MP and the Regional Authority, I know the NHS are in dire straits but.....

I actually suggested on my fractious day that we went and bought a CPAP ourselves, and was told that it was not advisable as it could cause more harm than good as we would not know the settings.

As for sharing an appointment.... it smacks of the dark ages! It seems to me that your local NHS do not appreciate the importance of quality of sleep or life. I understand now why sleep deprivation is used as a form of torture.

Sorry for the long post, but it is really a relief to get my story as a partner of an OSA, off my chest. Promise other posts will not be so long!

Lovely forum site, and I am sure that we will have loads of questions in the future.

Dear Ryebase,

Thank you for having the courage to tell us your story. It is wonderful to hear when things go right for a change. Interesting that one of your husband's consultants has a French name - I'm living in France and have found the French to be very up-to-date as regards OSA and its treatment!

Well done for persevering - and hope that your husband enjoys a better quality of life and sleep from now on - and that this rubs off positively on you!

Kindest regards to you both,

Alsa

Hi Alsa, thank you for your welcome.

Dr Phillipe Grunstein is definately very French with a pronounced French accent, it was he and Dr Orion Twentyman that pioneered the scheme, and I'm really pleased that it works brilliantly.

I was glad to get my story down on paper so to speak. As my husband says, all he knows is that he's really tired when he wakes up and for the rest of the day. It is the partners that know what they are up to during the night - from a fill scale chain saw drama in the bedroom, well in sound anyways, to thrashing around in a whirling dervish!!

Our neighbours have even said that they have heard the bed moving around in the night (!!).

My husband is feeling some benefit already, and his mood is changing as well, he is more upbeat and motivated, instead of doing everything on auto pilot - which of course, affects me, as I am starting to get some sleep as well.

We look at it in the bank account analagy - he is very overdrawn on his sleep account, and little by little he will pay that overdraft back, some days there will be hiccups when he can't pay back as much, but I know we'll get there!

Thanks again Alsa,

Take care

I was amazed to read you story from beginning to end. I am afraid that Bristol is in the dark ages as far as sleep is concerned - they need a rocket!! As I said I will only be given the machine for 1 month and then it has to go back. The choice then will either buy my own or go on a waiting list for about 12months to receive one on the NH but in between time I wouldn't be treated. They can however give me the names of companies supplying the CPAP machines. I wish I lived in your area. Jackie

Quick update on hubby..... Respironics phoned him today to ask how he was getting on, and if the CPAP suited him.

Now, I call that service!