Sleepiness is a common problem in the workplace, often put down to late
nights and burning the candle at both ends. But some people battling to stay
awake at work may be suffering from a serious medical condition called
narcolepsy. By Carole Hunter
Narcolepsy is a neurological disorder affecting about 20,000 people in the
UK1,2 – although it is estimated that only about 2,500 people have been
diagnosed and are being treated. There have been some well-known people among
the ranks of those who suffer from the condition, including the actor Arthur
Lowe – best known for his portrayal of Captain Mainwaring in the television
comedy Dad’s Army. The key symptom experienced by all people with narcolepsy is
excessive daytime sleepiness (EDS) – they can fall asleep anywhere, at any
time, doing anything. While anyone might doze off in a long meeting after a
heavy lunch, a person with narcolepsy might fall asleep while presenting at a
meeting. It is a debilitating condition that can have a major effect on
people’s social, family and work lives.
Low awareness of narcolepsy means many people do not realise they have the
condition, and are therefore not seeking help. If they do seek medical help,
sometimes their symptoms are mistaken for epilepsy, depression, chronic fatigue
syndrome or another sleep-related disorder such as sleep apnoea. On average,
diagnosis takes about 14 years from the onset of EDS3 – as a result, many
people with narcolepsy go through life labelled as lazy and work-shy. Many feel
they have no choice but to give up work, and some are dismissed. Ninety two
percent of people with narcolepsy who were involved in a US study said they had
experienced problems with work – 24 per cent had felt forced to leave their
jobs, and 18 per cent had been dismissed because of their illness.4
Occupational health practitioners have a key role to play in helping to
identify people in the workplace who may have narcolepsy, helping them seek
medical assistance, and ensuring an appropriate working environment and
conditions are provided for them.
Background
Narcolepsy affects the area of the brain that controls waking and sleeping –
the main symptoms are probably related to a disturbance of rapid eye movement
(REM) sleep. Recent research suggests it is caused by the loss of specific
brain cells which secrete a message-carrying chemical called hypocretin5. The
condition is equally common in men and women.6. Â In a third of cases, the first symptoms appear before the age of
15 – the most frequent age of onset is 20 to 40 years, and it is unusual for it
to appear after the age of 55.6
Excessive daytime sleepiness (EDS) is generally the first symptom to emerge.
This symptom creates an uncontrollable desire to sleep, even after a good
night’s sleep. People may have a nap and feel refreshed, only to feel sleepy
again a few hours later. EDS can cause "sleep attacks" to occur – a
person may be in mid-conversation when their head will drop forward and they
will sleep for anything between a few minutes to a half an hour. Upon waking,
they will often resume their conversation where they left off, unaware that
they have been asleep.
Because EDS can be a result of one of several other conditions, diagnosis of
narcolepsy can be difficult unless other signs appear.
Another prominent symptom of narcolepsy, cataplexy, is a sudden loss of
muscle tone in response to strong emotion such as laughter or anger, and can
range from a sensation of "jelly knees" or drooping face to – in the
extreme – complete collapse. The person remains awake and aware of what is
happening during the attack, which may last from a few seconds to 20 minutes.7
An attack of cataplexy could be triggered by a joke or nervousness in
anticipation of a difficult meeting.
Other symptoms of narcolepsy can include:
– Automatic behaviour – when people "run on auto-pilot" to carry
out tasks they later have no memory of performing.
– Sleep paralysis – when people find themselves unable to move or speak as
they are falling asleep or waking up.
– Hallucinations – vivid, intense, life-like images and, or, sounds that may
occur when the person is feeling drowsy, falling asleep or waking up; and
disturbed night-time sleep.
Not everyone with narcolepsy will have all of these symptoms, and the
symptoms may vary in severity from person to person. They can cause anxiety and
embarrassment – many people who have not told their employer about their
condition try to hide their symptoms, some resorting to measures such as taking
naps in the toilets, and avoiding situations that may trigger cataplexy. This
seemingly bizarre behaviour can attract as much attention as the symptoms
themselves would have.
EDS alone does not necessarily equate to narcolepsy, and diagnosis can be
difficult. Doctors who suspect their patients have narcolepsy should refer them
to a specialist with experience in the field, and the patients will often
undergo a series of tests to measure sleep brain waves and sleep patterns.
Narcolepsy is a life-long condition for which there is no cure – but
treatment is available. Most people with the condition find that lifestyle
changes can make a difference, and medication is prescribed to treat serious
symptoms. EDS has traditionally been treated with amphetamines and related
compounds. A wake-promoting agent, Provigil (modafinil) is now available, which
means any possible problems associated with having a controlled drug in the
workplace can be avoided. Cataplexy, sleep paralysis and hallucinations are
treated with antidepressants.
Narcolepsy and work
Narcolepsy does not affect intelligence levels, but it can affect
concentration and confidence. Excessive daytime sleepiness can lead to mistakes
and loss of productivity, which can be frustrating for the person concerned and
his or her colleagues and employer.
More seriously, untreated symptoms of narcolepsy can have dangerous
consequences – for example, someone may fall sleep, have a cataplectic attack
or go into "auto-pilot mode" while operating machinery. Sleep
deprivation can be dangerous even for people without sleep-related disorders –
accident rates have been reported to increase by up to 25 per cent during night
shifts compared to early morning shifts.8
People who have been diagnosed with narcolepsy must report this to the
Driver and Vehicle Licensing Agency (DVLA), and should not drive unless they
have obtained written permission from the DVLA. Many people with narcolepsy are
able to continue to drive.
Narcolepsy affects everyone differently – some people with serious symptoms
find it difficult to continue to work. However, others can continue to perform
at a high level – following treatment, and in an adapted environment under
revised working conditions.
Some people are dismissed from their jobs before they are diagnosed with
narcolepsy, because of misconceptions that their behaviour is due to laziness
or lack of interest rather than a medical condition. Employers should be made
aware that it is a serious medical condition, and they may face unfair
dismissal claims and compensation payouts if they dismiss a person who has been
diagnosed with narcolepsy – the Disability Discrimination Act should be kept in
mind.
Patient groups dedicated to providing support and advice to people with
narcolepsy, including on any employment issues, have been trying to increase
awareness of the condition among staff at the Citizens’ Advice Bureau,
Department of Social Security and DVLA.
Identifying and helping people with narcolepsy
Sleepiness and fatigue can be a sign of many different problems and medical
conditions. A checklist (see box) can help occupational health practitioners
and employees determine whether they should seek specialist advice about
whether the person has narcolepsy. Some people with sleep problems also find it
useful to keep a "sleep diary", which can be a useful tool for later
consultations with doctors. Their colleagues, family members and friends may
need to help them with this record of sleep habits and naps, as they may not
recall all of them.
If people who think they have narcolepsy seek further medical advice, it is
very important that they tell the doctor about all of the symptoms they have
been suffering from – even if they do not think they are related. Many people
would not think collapse due to loss of muscle tone could be associated with
feeling excessively sleepy, but this link could be crucial in making a
diagnosis of narcolepsy.
Once they are receiving treatment, many people with narcolepsy remain in
employment. They may have to alter their duties – people with narcolepsy should
avoid jobs which require them to operate moving machinery on their own, drive
long distances, or work at a height. Some jobs, for example in the emergency
services, would probably not be appropriate because of the risk of cataplexy in
stressful situations. People with narcolepsy are often best suited to work
which has variability, involves contact with people, and allows them to be
active.
Part-time jobs should be arranged for the hours when the person is most
likely to be alert, and long hours and shift work should be avoided. Shift work
can disrupt sleeping patterns and cause sleep deprivation, which can lead to
excessive daytime sleepiness.9 The European Commission’s Working Time
Directive, which was implemented in UK domestic law in September 1998,
stipulates that where possible, night workers should be transferred to suitable
day work if they suffer from health problems exacerbated by the night work.10
There are some simple, practical steps that can help people with narcolepsy
control their symptoms in the workplace, including:
– Starting work at the same time each day.
– Scheduling two or three short (10 to15 minute) naps during the day.
– Taking regular breaks from activities that involve long periods of
concentration or sitting/standing still.
– Taking some exercise during the day.
– Making sure work areas are well-aired and well-lit.
– Planning ahead to ensure alertness for important tasks or meetings.
A level of understanding and support from employers and colleagues is also
very important. They should be made aware of narcolepsy – particularly the fact
that it is a genuine medical condition – and of any workplace changes that will
be required.
Summary
Narcolepsy can have a devastating impact on people’s lives. The key to
dealing with the condition in the workplace is recognising, acknowledging and
understanding the condition, and working with the employee to overcome any
problems associated with it.
Occupational health practitioners are in a good position to identify
employees who may have narcolepsy – there are practical steps they can take to
help people suffering from the condition be more productive and feel more
fulfilled.
Carole Hunter is occupational health nurse manager at Castle Hill Hospital
in Hull
References
1 Parkes JD, Clift SJ, Dahlitz MJ. The narcoleptic syndrome. J Neurol
Neurosurg Psychiatr. 1995; 59: 221-224
2 Parkes JD. Sleep and its Disorders. London: WB Saunders, 1985
3 Shneerson JM. Handbook of Sleep Medicine. Blackwell Science, 2000. p127
4 Kales A, Soldatos CR et al. Narcolepsy-cataplexy II: Psychosocial
consequences and associated psychopathology. Archives of Neurology. 1992; 39:
169-171
5 Morris K. Further clues to narcolepsy mechanism found. Lancet. 2000; 356:
835
6 Shneerson JM. Handbook of Sleep Medicine. Blackwell Science, 2000. p122
7 Shneerson JM. Handbook of Sleep Medicine. Blackwell Science, 2000. p125
8 Shneerson JM. Handbook of Sleep Medicine. Blackwell Science, 2000. p112
9 Shneerson JM. Handbook of Sleep Medicine. Blackwell Science, 2000. p120
10 Council of the European Union. Council Directive No. 93/104/EC of 23
November 1993 Concerning Certain Aspects of the Organisation of Working
Time. Section III, Article 9.1(a)
Narcolepsy checklist
People who answer yes to one or more of the questions below should seek
advice from their doctor.
– Do you feel excessively sleepy during the day, with an irresistible urge
to sleep?
– Do some of your muscles go weak when you have strong feelings of emotion
such as laughter or anger?
– Do you feel the need to take several naps throughout the day, and do you
awake from these naps feeling refreshed?
– Do you sometimes have intense, life-like dreams just as you are going to
sleep or as you are waking up?
Sign up to our weekly round-up of HR news and guidance
Receive the Personnel Today Direct e-newsletter every Wednesday
– Do you sometimes wake up in the mornings and find that you cannot move,
although you are aware of what is happening around you?
– Do you sometimes "run on auto-pilot", for example, find you have
done things without being aware of what has happened?
