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The Snoring & Sleep Apnoea Forums

How long did it take you to get diagnosed?

Talk about all aspects of sleep apnoea. Request help from others with the same problem, tell your story, exchange tips & techniques ..
Guest

How long did it take you to get diagnosed?

Post by Guest » Tue Feb 07, 2017 3:51 am

I'm currently waiting to be diagnosed and was wondering how long it took others to get their diagnosis and mask?

I'm not really functioning at the moment and I already feel like I've been waiting for an eternity, I'd like to know how much longer I can expect to endure this hell.

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Sleep2Snore
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Location: Aberdeenshire

Re: How long did it take you to get diagnosed?

Post by Sleep2Snore » Tue Feb 07, 2017 9:20 pm

A lot depends on where you are in the UK?

It is a bit of a postcode lottery.

If you tell us where you are, someone might be in the same area.

However, once you get contact from the hospital, tell them you will take a cancellation at short notice, but be prepared to go at short notice.
S2S - Sleep2Snore

big G
Corporal Snorer
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Re: How long did it take you to get diagnosed?

Post by big G » Sat Feb 18, 2017 6:00 pm

I am in SCOTLAND, still waiting for sleep study, have been since October, and on cancellation list.

I too struggle, most nights on sofa , off work with depression.

Long stressful process

G

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Sleep2Snore
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Re: How long did it take you to get diagnosed?

Post by Sleep2Snore » Tue Feb 21, 2017 6:16 pm

Scotland. Well, I suppose it would depend which hospital you are going to.
Edinburgh used to be good (once you get there) but I have not dealt with them for years, Glasgow also used to be good, but they also deal with more complicated sleep problems there as well. Once you get to see someone in the hospital it used to be that you got through quite quickly, it was the waiting to see someone that was the longest wait!
Dundee, I don't know about, but I believe they do it there as well, it has just been a long time since I went through the mill.

Maybe If you tell us where you are going maybe someone will give you a better idea of how long they waited.
S2S - Sleep2Snore

big G
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Re: How long did it take you to get diagnosed?

Post by big G » Sat Mar 18, 2017 10:54 pm

I waiting for overnight study, from October , now being told May.

It's crazy

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Sleep2Snore
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Re: How long did it take you to get diagnosed?

Post by Sleep2Snore » Mon Mar 20, 2017 8:59 pm

big G wrote:
Sat Mar 18, 2017 10:54 pm
I waiting for overnight study, from October , now being told May.

It's crazy
Phone the clinic and offer to come in at short notice if there is a cancellation.
But do be prepared to go at short notice.
S2S - Sleep2Snore

big G
Corporal Snorer
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Joined: Sat Jan 14, 2017 9:10 pm

Re: How long did it take you to get diagnosed?

Post by big G » Mon Mar 20, 2017 10:09 pm

Sleep2Snore wrote:
Mon Mar 20, 2017 8:59 pm
big G wrote:
Sat Mar 18, 2017 10:54 pm
I waiting for overnight study, from October , now being told May.

It's crazy
Phone the clinic and offer to come in at short notice if there is a cancellation.
But do be prepared to go at short notice.
I saw someone recommend that before, I call every other week to get an update and check if any.

Am about an hour drive away, so would go straight away

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Sleep2Snore
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Re: How long did it take you to get diagnosed?

Post by Sleep2Snore » Tue Mar 21, 2017 10:02 am

The more you phone the more you are on the radar.
It pays to be a pest sometimes. :)

After all it is your health, so they can't hold it against you for trying.
S2S - Sleep2Snore

Guest

Re: How long did it take you to get diagnosed?

Post by Guest » Thu Apr 06, 2017 1:27 pm

Just re reading this thread, i.was not.aware of dundee doimg it, i was unfer the impressuon it was all done at edinburgh.

Finally have an apt dor end month.

If ir is osa which is suspected and i jave to.get a.mask.and.machine. does.this happen at the same time ot have to go.on waoting list again.

Gordon

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Sleep2Snore
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Re: How long did it take you to get diagnosed?

Post by Sleep2Snore » Thu Apr 06, 2017 5:17 pm

I don't know how things are these days at Edinburgh.
I was lucky in that they got a delivery of new machines the day after I was tested and I was still there as it was the morning after.

I don't know if Dundee has a Sleep Study Centre or they just do the follow ups, however, I was given the impression that they did.

Ninewells Hospital, Sleep Clinic, East Bloc, Ninewell Drive, Dundee, DD1 9SY
Telephone: 01382 660111 ext 34596
Contact: Dr Robin Smith, Consultant Respiratory Physician


Don't know how old this information is?

Edinburgh is or was geared up for it, but it was busy when I went there over 20 years ago.
They had only two sleep study rooms back then and when I went down to see Prof, Douglas way back then, they had a cancelation for a sleep styudy that night, so I was offered it as I had already had a study done in Aberdeen. However, it was not a polysomnography where they can do extensive testing.
It was just like a home test attached to a computer that read the data much like the software Sleepyhead.
It was just luck that machine had just arrived. I believe there is a wait these days.


Others that have been to Edinburgh lately might jump in and let you know.
S2S - Sleep2Snore

big G
Corporal Snorer
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Re: How long did it take you to get diagnosed?

Post by big G » Fri Apr 07, 2017 12:35 pm

Just when reading some posts about wales etc. How they have to apply for funding etc before sufferers get machines. After waiting 6 months of waiting for sleep study. I was curious if anyone knew.

Thanks for your help.

G

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Sleep2Snore
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Re: How long did it take you to get diagnosed?

Post by Sleep2Snore » Sun Apr 09, 2017 6:05 pm

As far as I understand it, it is the differences between England/Wales and Scotland NHS.
When I was first diagnosed, if you were in England you did NOT get a machine off the NHS, you had to pay for it. Not sure about Wales, but likelt to have been the same. Then they changed the rules, which meant that funding for each patient had to be applied for, this budget gave the patient a machine and the rest of the equipment + spares if needed and follow up care. This is how it was explained to me at a annual conference by a consultant from I think it was Oxford, but I can't be certain he was from there. However, he did deal with the NHS and this is how he explained it.
In Scotland the NHS had decided that people get the machines if it is needed. They decided near the beginning that it was better to prevent other problems the patient could or would develop over time. In other words they thought it was cheaper to prevent rather than cure later, it boils down to cost.
Cheaper to prevent than cure.
I don't know why the NHS has chosen to stick to having to apply for funding. I don't know if the consultant has to provide evidence of the patients condition or not.
Best way to find out the situation now is to ask the consultant when you see him.
Then you can update us!

Hope that helps, though it is a bit outdated.
S2S - Sleep2Snore

Guest

Re: How long did it take you to get diagnosed?

Post by Guest » Wed Apr 12, 2017 6:33 pm

I was offered a sleep study at my local hospital (Nottinghamshire) but, after four weeks of waiting I returned to the GP and asked to be referred to a Derbyshire hospital - I was seen/had my study within a month.
Don't know if Scotland is different but, if travelling to the hospital is an option, you might be worth trying a different one - can't do any harm (I did point out to the GP that sleep deprivation is used as torture in some parts of the world!)
Good luck - oh and as you only attend once a year once set up it's not a big problem

Granny3
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Re: How long did it take you to get diagnosed?

Post by Granny3 » Sat Apr 15, 2017 11:10 pm

I am also from Scotland but could not get my GP in 2011 to take me seriously as my age and sex did not fit his perceived OSA profile. Instead I was diagnosed in Germany where I worked at the time however, that was also not easy being a woman.
In 2012 mild OSA (11 events per hour!) was diagnosed via home monitoring device but no treatment was offered. My condition continued to deteriorate accompanied with other complex pathologies which eventually led to an acute episode of cardiac decompensation in May 2015. Respiratory tests continued to demonstrate that I had problems other than asthma therefore a sleep study was conducted August 2015. The results were mild OSA but more worrying cardiac related issues ... Once again no treatment. My symptoms continued and I could barely function, barely think and was giving up the will to live. No one believed me, no matter how unwell I was, I always managed to look ok. I covered my plethoric face with makeup and struggled to walk into the respiratoy clinic. Usually the two hour wait recharged my batteries as I slept in the waiting room disturbing all with my loud snoring. Eventually another home sleep study was conducted in January 2016 once again positive for OSA and I was put on the urgent waiting list for the sleep clinic. This "urgent" appointment took 11 months to materialise and at the end of November 2016 I was diagnosed with OSA and severe sleep disordered breathing related to diastolic heart failure and a neurological failure of my brain sending the message to my chest muscles to breath. Overnight my blood pressure and oxygen saturation were dangerously low which was frightening. However, I was kept in hospital for a second night and started on CPAP therapy with amazing results. The next morning I was given my own CPAP machine and I've never looked back since, everyday I improve dramatically nevertheless, I know that my complex progressive diagnosis cannot be cured, I must simply make the best of a bad situation.
What bothers me is the length of time taken to diagnose (accurately) and reach the decision to treat. Sleep apnoea can lead to other problems if not treated therefore, I cannot understand the delays. I also feel angry by the comments made during my trajectory; that I didn't look sick. I still don't look sick and now my diagnosis is terminal.
Keep phoning, pester the life out of them, don't give up, get that appointment at all costs. The earlier you get a proper diagnosis and appropriate treatment, the sooner you will start to live a normal life again ...and can prevent potential complications.
Good luck!

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Sleep2Snore
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Re: How long did it take you to get diagnosed?

Post by Sleep2Snore » Tue Apr 18, 2017 9:01 pm

Thanks for taking the time yo post your story Granny3, it is always nice to hear others stories and how bad the system is at picking people up.
Your story has a familiar ring to it, Doctor not listening (maybe they are scared to look stupid for sending people in the first instance in case they are wrong), long waiting lists, bad diagnoses with home studies and no follow up with a polysomnography at a Sleep Clinic to find out just how bad things really are with the patient. Mild Sleep Apnoea nearly always gets worse (I have found anyway) just due to the fact it takes a lot of effort and stamina to get out of your seat at night and do something to loose a bit of weight. Instead you feel depressed and are inclined to eat instead, exactly what you should not be doing! The long wait just makes things worse is a lot of cases.
If they would just treat the mild Sleep Apnoea right away it would give the patient the energy to get up and do something.

Shame you didn't get the attention you should have gotten Granny3. :?
S2S - Sleep2Snore

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