Anne Wollenberg 

Time to wake up to sleep disorders

Anne Wollenberg Millions in the UK have conditions that affect their sleeping – and waking – lives. Why is it so hard for them to get diagnosed?
  
  


How have you been sleeping? Not very well, if you're among the 25% of people in the UK who suffer from one of the 80 or more known sleep disorders.

These include insomnia, sleep apnoea (pauses in breathing during sleep), narcolepsy (which causes daytime sleep attacks, among many other symptoms), idiopathic hypersomnia (which is very similar to narcolepsy and which I suffer from) and Klein-Levin syndrome (characterised by a need for excessive amounts of sleep and an abnormally uninhibited sex drive).

It seems logical to assume that disturbed sleep may be caused by a sleep disorder. But visit your GP to discuss problems relating to sleep – difficulty staying awake during the day, for example – and you're likely to find these disorders are at the bottom of the list of possible causes after diabetes, thyroid problems, drug abuse, depression, laziness and poor sleep hygiene. Take the lorry driver suffering from sleep apnoea who caused a pile-up which killed one man. He'd been tested for diabetes, but sleep apnoea hadn't been considered. Most of the narcolepsy and idiopathic hypersomnia sufferers I have spoken to report spending between five and 15 years trying to obtain a diagnosis (in my case, it was around seven).

The same stories come up again and again. Sufferers say their GPs have misinterpreted their symptoms (for example, disturbed night-time sleep is an established symptom of narcolepsy, but is often seen as a sign that the patient simply needs to improve his or her sleep routine) or informed them that tiredness is a fact of life. One girl suffering from daytime sleep attacks was kicked off the waiting list for treatment – because she fell asleep and missed her appointment. "I know I am lucky to have such severe symptoms", narcoleptic Katie Antoniou wrote last year. "Those with mild narcolepsy ... can go their whole lives being labelled lazy, forgetful, clumsy or stupid."

In March 2006, the British journal of hospital medicine reported that, by international standards, the UK has been slow to adapt its healthcare systems to deal with sleep disorders, and detects and treats far fewer cases than other countries. "We have a recurring problem with GPs refusing to refer people", a consultant at one sleep clinic told me. But why? Doctors aren't out to get their patients. They want them to get better. How is it, then, that people who present symptoms of sleep disorders find it so difficult to obtain the correct diagnosis and treatment?

"It's common for diagnosis to be greatly delayed", says Andrew Cummin, director of the Imperial College healthcare sleep centre. "Narcolepsy is relatively rare but common conditions causing sleepiness such as sleep apnoea are also not being diagnosed promptly. One problem is that there has been relatively little training in sleep medicine in this country – certainly there is no structured training for sleep physicians."

There are thousands of medical conditions jostling for GPs' attention. But with so many sufferers in the UK, surely it's time for the medical profession to wake up to sleep disorders.

 

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