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how often do you go to the clinic?

 

i go to oxford and just phone up for spares.  i havnt been for 6 years to an appointment.  mind you i have to get three buses each way so dont want to go too often,  but i do worry that my machine might die of old age LOL!!!

Diane

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Here in Hull we are fortunate to have a great team who insist that we have an appointment every year.  If anyone has any problems or concerns before then, they are always given an emergency appointment, and people having problems with their masks are invited in to in order to sort their problems.  I guess we're lucky here compared to some we'll be hearing about.
I go to GWH in swindon. Got my cpap 4 years ago and never been recalled for a checkup despite losing 10stone in weight and wondering if I still needed the cpap. Got myself referred back to the hospital recently as I was having problems with my machine and masks. Now have a direct contact in the sleep services department and can get to see someone quickly if I need to. Also have email and phone access.    I've just had my cpap replaced and also given a variety of masks to try so Iam a happy bunny but do wonder why I was never recalled on a regularly basis?
I cannot believe this Suzie, even though I know this to be true.  Pleased you're back in the 'system' though.  Am wondering if you could do with another sleep study though after losing 10 stones!  You must feel like a new person.  Well done and I hope you were told this by your sleep clinic!  Let us know what masks you have and what you think of them.  It helps us all :)

I had a sleep study last week Cath - one of those home pulse/ox tests...still waiting on the results but obviously it wasn't as comprehensive as my first sleep test where I stayed overnight in hospital . It will be interesting to see what they come back with although I was experiencing problems with my mask when I had it the test done so not sure if that will affect the results? After months of having problems and not using my cpap hopefully this has got it sorted and I will start using it again every night....... and all for a sticky valve on my mask! :( 

 

Will update you with masks etc over the weekend ----off to get some much needed sleep ZZZZZzzzzzzzz xxxx

 

Will await your news Suzie.  Interesting that they only did a Pulse Ox this time.  I wonder why they didn't send you home with proper sleep equipment.  However, you obviously had a good test the first time if you stayed overnight in hospital.  Although here in Hull we're treat very well, we only have home tests as there's no facility for overnight stays in the hospital.  So often people who lose loads of weight like you, don't get rid of the OSA due to the fat tissue still in the neck.  It would be great if you were the exception though :)

suzie Stiles said:

I had a sleep study last week Cath - one of those home pulse/ox tests...still waiting on the results but obviously it wasn't as comprehensive as my first sleep test where I stayed overnight in hospital . It will be interesting to see what they come back with although I was experiencing problems with my mask when I had it the test done so not sure if that will affect the results? After months of having problems and not using my cpap hopefully this has got it sorted and I will start using it again every night....... and all for a sticky valve on my mask! :( 

 

Will update you with masks etc over the weekend ----off to get some much needed sleep ZZZZZzzzzzzzz xxxx

 

 

I recently had to renew my driving licence because I'm on 3 year renewals due to diabetes and sleep apnoea. On the forms it asks when I last had an appointment with a 'consultant' and I realised it had been over two years. I didn't think that would go down too well with the DVLA so I contacted the sleep clinic at St James' in Leeds to ask if I could have an appointment and if something had gone awry with the recall system?

 

Turns out there IS a problem - they have just two people trying to cover a vast area (I'm in Burnley, Lancashire - Leeds is a 20 min car drive, a 1 hour train ride and a taxi away)  and they are currently running 10 months behind with appointments. However, they appreciated my problem and gave me an appointment straight away - which it seems is all it took to satisfy the DVLA, so long as I was GOING to be seen.

 

It's a disgrace - the staff at Leeds are obviously overstretched yet it's unlikely anything wil be done to improve the situation. Years ago I was involved in a radio interview with a minister who questioned whether sleep apnoea existed! Just how many people are wandering around (Driving!!) with undiagnosed OSA because the resources to find them and treat them simply aren't there anymore.

 

Hull are also vastly overstretched, serving a very wide area, yet the latest news is that the department is 'under review' due to the latest cutbacks :(


I was at a support group meeting once where the speaker (a sleep doctor) commented that the NHS can't actively go out and recruit undiagnosed sufferers, as if they all suddenly needing treating then the NHS couldn't cope!!
Caveman said:

............It's a disgrace - the staff at Leeds are obviously overstretched yet it's unlikely anything wil be done to improve the situation. Years ago I was involved in a radio interview with a minister who questioned whether sleep apnoea existed! Just how many people are wandering around (Driving!!) with undiagnosed OSA because the resources to find them and treat them simply aren't there anymore.

 

HMMMMMMMM.....................
Are you in shock Rock reading about us across the pond ;)

Rock said:
HMMMMMMMM.....................

I go to St James’s Hospital Leeds once a year. I am very lucky to have a direct contact in the sleep services department and can get to see someone quickly if needed.

I have had problems with a variety masks due to a plate in the bottom of my eye socket and pressure with the straps. Thanks to the staff at the unit giving me the opportunity I have tried a variety of masks to try. With slight adjustments that I have made to the Mirage FX it seems to be working fine and I have had two good nights sleep since the modifications

It's a disgrace - the staffs at Leeds are obviously overstretched and it's unlikely anything will be done to improve the situation any time soon.

My experience in the east of Scotland has so far been similar to Kath's in Hull.  Here we have annual check ups, but will be fitted in at other times if we are having problems.  Staff are excellent and respond promptly to email or telephone queries.

Nope no shock here. Our system is not much different from what I am hearing. Most people do not see a sleep doc in the U.S. Post-study problems are handled by the Primary Care Physician(PCP) or the Durable Medical Equipment(DME) provider. It is very common for a person to go a year or 2 without being seen for their sleep. The above mentioned people or companies are only involved as much as you make them be.

 

They still don't teach sleep in our medical or nursing schools over here.

Kath Hope said:

Are you in shock Rock reading about us across the pond ;)

Rock said:
HMMMMMMMM.....................

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