Sunday, 13 October 2013

Sleepless in London

● Jon Danzig couldn't sleep during his overnight sleep test
Photo by David Mansell The Guardian


The average Briton only sleeps six-and-a-half hours a night. It's not enough.






Last week BBC TV broadcast an experiment showing that such little sleep can lead to less mental agility, more stress, and a possible risk of cancer and diabetes. Volunteers underwent overnight sleep tests for the BBC, and demonstrated that just one extra hour of shut-eye each night can considerably improve health.  

I had an overnight sleep test at one of London’s most prestigious hospitals.  It was a comical disaster and I didn't sleep a wink.  That's because the machinery to test if I snored was louder than my snoring.

This was no ordinary hospital.  My sleepless overnight sleep test took place ten years ago at the world famous King Edward VII, the exclusive medical establishment in London attended by the Queen, the Duke of Edinburgh, Prince Charles, the Duchess of Cambridge, and top military brass.  

(Except in my case I was admitted only as a ‘category four patient’  – meaning an ordinary member of the public.)

Persevere


I complained. But after two 'extensive' investigations by the hospital and months of correspondence, the King Edward VII couldn't find anything wrong. Well, I've learnt in life that sometimes you have to persevereIf you know in your heart that something is wrong and needs to be put right, don’t give up. Intervention might save lives.

I catalogued a list of complaints. The hospital didn't deny my version of events, but still they couldn't find anything amiss.  This seemed bizarre.

Under the Data Protection Act, I obtained their medical records about me.  I then began to realise that the word 'bizarre' was totally inadequate.  I wrote back the same day:

'Your hospital's record of my admission does not give me confidence in the abilities of your organisation.  My height was incorrectly recorded, as was my weight and my age.
'Most alarming, however, was your hospital's medical note that my testicles had been removed.  I can only be thankful that in the circumstances I did remain awake.  Heaven knows what else might have happened had I fallen asleep.  I can assure you that I am entirely complete.'

Never accuse Jon Danzig of having no balls!  This was now war. 

Back came the hospital’s reply.  They agreed my testicles were intact.  The medical entry, they now explained, stated a small lump (lipoma) had been removed from my testicles. 

Yet this too was wrong. 

I got out a magnifying glass for a closer look (at my medical records). It then all became clear. A lump had been removed some years earlier from my back. But the nurse had written what looked like 'balls' instead of 'back'.  Then another nurse crossed out the word 'balls' and wrote 'testicles'. 

This was becoming one almighty cock-up.

Action only came when I fired a missive telling-all to the hospital’s then top man, the Brigadier Colin Harrisson, OBE.

Thank goodness he didn't just sleep on it.  Immediately  he suspended all sleep tests at the hospital, ordered a review, admitted the hospital had been wrong, apologised, refunded my money and paid compensation.  In my opinion the Brigadier Harrisson was an officer and a gentleman. 

Out-of-body


My doctor had ordered an overnight sleep study because sometimes I snored and stopped breathing in my sleep, a condition called 'sleep apnoea'.  I also experienced strange out-of-body experiences.

At 11 pm, when I was ready to snooze, the nurse didn't know how to set up the computer properly.  She started banging it and asked me if I knew how it worked.  I didn't.

She then asked how tall I was.  I replied, '5’10'. 

'What is that in centimetres?' 

I didn't know.  

She then asked my weight in kilograms which I did know.  Then I got into bed and was tethered to various wires connected to the computer. 

When I looked at the computer screen, I saw that my height had been put down as '5'.  

'What does that mean?' I asked the nurse. 

'That’s your height,' she replied.

'But it says five.  I am not five.  What measurement is it in?' 

'Centimetres.'  

'You have told the computer that I am just five centimetres tall?' 

'I’m sure it doesn't matter.'  

'Doesn't matter?  What’s the point of the exercise if it doesn't matter?  You have told the computer that I am 85 kilograms in weight and five centimetres tall.  The computer will do its calculations based on an extremely short but incredibly wide dwarf.'

The nurse pondered for a while, then disconnected me from the computer, handed me a tape measure and stood me against the wall.

I thought she was going to measure me.  But she said she was busy.  

Have you ever tried to measure your height on your own?  It was not easy, especially at midnight, when I was supposed to be rested for an overnight sleep study. But after eventually completing the exercise, the nurse reattached me to the computer and told me, 'Go to sleep.'

Whooshing


I tried. I really tried. But 15 minutes later, there was a whooshing noise, a constriction in my right arm and then another whooshing noise. It was the blood pressure cuff affixed to my right arm. It was scheduled to go off every 15 minutes through the night.  I can’t sleep through that!  

What was I supposed to do, have 14 minute naps interrupted by the snoring blood pressure unit? 

If that wasn't bad enough, every ten minutes, the computer started to whistle at me. Maybe it got turned on by the thought of being hooked up with an over-weight dwarf.

At 3 am the nurse came in again. 'Jonathan, are you asleep?' she asked.    Of course I wasn't.  So she started talking to me. 

The next morning, bereft of sleep, another nurse came in.  

'Good morning, Jonathan!' she exclaimed brightly.  

Then she leaned over the bed and whispered, 'Jonathan, I've heard all about your out-of-body experiences.'

'Oh yes,' I replied. 

She leaned over a little more. 'Can I ask you, Jonathan, why you came here for these tests?'

'Well,' I replied, 'I've often felt tired and without much energy.'  

She looked around to check that no one else was in the room. She then started to talk in a low, conspiratorial voice.   

'I shouldn't be telling you this.  But I know a bit about out-of-body experiences,' she said. 'Let me give you some advice.  All that flying about at night is bound to make you very tired.'

Evidence


Later on my doctor reported that there was no evidence that I had sleep apnoea.  It made me realise what a joke some tests can be. There was no evidence of sleep apnoea that night because there was no evidence of sleep. 

The exercise had cost £400 ($650). That was something else to keep me awake at night.

I now know that during sleep tests there should be no noisy equipment to wake up the patient. And blood pressure monitoring during the test is not even necessary. 

I had expected better from a hospital designed to cater for Royalty.

But the then Chief Executive of the King Edward VII's Hospital, the Brigadier Colin Harrisson, OBE, personally wrote to me, 'I accept that the conduct of your sleep study was poorly managed. I have suspended sleep studies in the hospital pending an internal review.'

He  refunded the cost of my sleep test and paid £600 ($1,000) in compensation, from which I made a donation to the Pituitary Network Association.

● A shorter version of Jon Danzig's overnight sleep
test was published by The Guardian, click to view.

Sleep Apnoea - what is it?


Sleep apnoea is a serious and potentially life-threatening condition if untreated.  

People with sleep apnoea snore and repeatedly stop breathing for ten seconds or more during their sleep, sometimes hundreds of times throughout the night. Mostly the patient is completely unaware they've stopped breathing so often, but their sleep is so disrupted that they can feel extremely tired the next day. 

It's a common disorder, affecting about 4% of men and 2% of women. According to the National Institutes of Health, around 12 million Americans have sleep apnoea. 

Although sleep apnoea often results in snoring, not everyone who snores has sleep apnoea.

There are two types of sleep apnoea: the most common is called 'obstructive', where blocked airways restrict breathing; and the more rare apnoea is called, 'central', where a faulty signal from the brain interrupts breathing during sleep.

Unfortunately, because of the lack of awareness by the public and healthcare professionals, the vast majority remain undiagnosed and therefore untreated, despite the significant consequences.

The disorder can cause high blood pressure, stroke and other cardiovascular disease; memory problems; emotional instability; diabetes; weight gain; impotency and decreased libido; headaches; severe fatigue and daytime sleepiness. Untreated sleep apnoea can result in poor performance at work and car crashes, with drivers involuntarily falling asleep at the wheel.  

A diagnosis of sleep apnoea that affects your ability to drive must by law be reported to the Driver and Vehicle Licensing Authority (DVLA).  Fortunately, sleep apnoea can in most cases be successfully treated, after which the DVLA usually confirms that you may keep your driving license.

● A special face mask attached to a CPAP airflow
device helps to prevent snoring and sleep apnoea.  

Photo courtesy of ResMed
Following my disastrous overnight sleep study at the King Edward VII hospital, I was able to have a more successful sleep test at home, using portable equipment. This confirmed that I had sleep apnoea. 

Fortunately, a special mask I can wear at night has cured the problem.  It may not seem very romantic, but then, there's nothing romantic about snoring. Since wearing the silent, unobtrusive mask every night, I've never snored or had sleep apnoea again, nor had any more out-of-body experiences.

Modern successful treatments for sleep apnoea have dramatically improved the quality of patients lives; made our roads more safe from over-tired drivers, and saved hundreds of thousands of marriages and relationships across the world. 


8 comments:

  1. A hilarious article but one that highlights a much under-diagnosed problem. Research shows central sleep apnea is common after head injury (around 20%) and delays recovery, but it is not mentioned in any of the guidelines on head injury produced by NICE and their Scottish counterpart SIGN.

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  2. Hilarious indeed! I also hope that this informative piece makes its way to those who can benefit from the deeper story told. I've 'shared' it on Facebook.
    Tina

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  3. A sad and woeful experience. Better suited for a TV sitcom than medicine. NOTE: In 2013, the researchers who published the original estimates of sleep apnea frequency (quoted by NIH) published an updated analysis reporting that sleep apnea is several times more common today - mostly explained by the increase in obesity. See. http://www.ncbi.nlm.nih.gov/pubmed/23589584

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  4. Thanks for this Jon. I have a friend who is enduring these same problems. The hospital were taking him in for an overnight this weekend but have now told him he can take a machine home instead. I think he will be relieved once he reads your article.

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    1. Well, what happened to me was hopefully unusual. However, I’d say an overnight sleep test at home is always better, because for the test to be valid it’s important to be able to get to sleep. That’s often not easy at hospital, even when things go well.

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  5. I had similar expereince during sleep test: I could not sleep and I developed an allergic reaction to the gel used to paste the leads on my face. I told the nurse immediately, I showed her the welts and swelling around my nose and eyes; yet she insisted the test should go forward. Big surprise--in the morning they told me they knew what to do for me--shedule another sleep test at their facility b/c I hadn't slept enough and they suspected I had an obstruction in my nasal passage (hello, nose swollen from allergic reaction to gel)! They never mentioned my tossing and turning due to joint pain (my original complaint, and I was later diagnosed with inflammatory arthritis). My doctor just guessed at my neck measurement ( over a certain size is an indication for sleep apnea, so he guessed I was just over that size). When I measured my own neck at home with a fancy tape measure, the doc was off by 2.5 inches, and I did not have that risk factor for sleep apnea...Because I admitted to snoring when I had a cold, the doctor said I snored habitually (another risk factor) although my husband and son say I don't snore. The doc said "husbands always lie about this to protect ladies' feelings." It was a bizarre experience.

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  6. sleepless in Seattle
    sequel
    sleepless in london

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  7. Thanks for sharing this amazing and informative article ... enjoyed every bit of it .. :)

    Apu

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