CPAP Blog

Bill Bolton, a bit of a sleep forum legend, posted this interesting bit of research, published in the American Journal of Respiratory and Critical Care Medicine. Universities around the world combined efforts to establish the ease of access to diagnosis and treatment of patients with suspected sleep apnoea.

I can tell you the not-so-surprising results in one short sentence. The UK comes out worst!

With 84 sleep labs on just short of sixty million people and in those clinics just 170 polysomnography beds we are nowhere near as well equipped to handle the growth in OSA prevalence as nations like Belgium, Australia or Canada.

They estimated some 25,000 new patient sleep studies (that’s not including necessary follow-ups for existing OSA patients) per year, or 42.5 studies per 100K population. In the other countries featured, this number is higher yet they all cope much better in terms of raw numbers.

It gets worse… Waiting times in the UK (as we know) are off the scale. Where in Belgium a suspected patient can expect to be tested and treated in around 2 months, in the UK it can vary from between 7 and 60 (!) months. In other words, between half a year and 5 years! In Australia and the US you would also have to be unlucky to wait more than a year.

The research abstract puts it as follows:

Waiting times vary widely across the country with no clear geographic trends. The average time for a nonurgent referral to be seen by a specialist is around 6 months (range, 2–24 months) and for a sleep study thereafter around 4 months (range, 0–48 months). Thereafter the delay for a CPAP titration is 4 months (range, 3–6 months). Thus, the overall wait from referral to CPAP averages approximately 14 months.

At the current rate, if you insist on public services instead of private, your wife gets to enjoy 14 months of more snoring and you get to live the regrets of 14 months more of walking around with potentially fatal blood oxygen levels.

At the Edinburgh Royal Infirmary the routine works out like this:

General practitioners refer half of the patients to this service and hospital specialists the other half. Sleep studies are ordered by one of two sleep physicians. To deal with the mismatch of demand and capacity, all referral letters are reviewed and prioritized by one of the sleep specialists. All patients living within 100 miles (160 km) are offered home-limited sleep studies, and only those with equivocal results get polysomnography. Patients living beyond 100 miles get split-night studies if their Epworth sleepiness score exceeds 11 (total score = 24) or if they report sleepiness when driving. Night nurses are cleared to start titrating CPAP if a sleepy patient’s apnea–hypopnea index (AHI) exceeds 20 after 2 hours of good sleep.

From that excerpt you can see that with a bit of exaggeration (inflated Epworth score or mention falling asleep when driving - may have licence implications though) you may get helped faster (referral priorization) and more thoroughly (full polysomnography). I don’t recommend gaming the system as you will delay others’ needs but you can see how and why people would.

Having said that, how it’s done in Edinburgh is not representative of the rest of the UK:

These practices differ from those elsewhere in the United Kingdom. Overall, in the United Kingdom around two thirds of all “sleep studies” are oximetry alone and 20% are limited sleep studies, with only 10% being full polysomnography studies. […] Oximetry alone studies are especially prevalent in England. Some general practitioners refer patients to otolaryngologists, who have no specific training in sleep, because of the long waiting times.

An otolaryngologist, for your information, is an Ear Nose and Throat (ENT) doctor. Fancy being diagnosed for your sleep issues by someone who knows more about ears than sleep? And by only measuring blood oxygen levels without looking at apnoea events?

If you are interested in how the other countries compare to ours, please continue reading here. This table tells it all it a nice format.

In summary for the UK with Canadian figures in brackets for comparison:

• Population: 58.8m (31.4)
• No. of sleep labs: 84 (100)
• No. of sleep beds: 170 (440)
• No. beds per 100,000 people: 0.3 (1.4)
• No. sleep studies per year: 25,000 (116,000)
• No. studies per 100,000: 42.5 (370.4)
• Waiting time in months: 7-60 (4-36)

Does this come as a surprise to you? What is the way forward? Are you contemplating moving after reading this? Whatever your thoughts, post them as a comment below or discuss your views in the forums.

If you suspect you, or someone you know, may be suffering from sleep apnoea then please take this questionnaire which will help determine whether this is indeed the case. It may take away some of the doubts you may have.

We discussed Sleep Apnoea in drivers before when we dug up some frightening statistics regarding the prevalence of sleep disorders amongst drivers in Britain. As this is such an important topic and often asked about in the various forums, we decided to dedicate another post to the matter of Sleep Apnoea and driving cars or trucks.

There are many good sources on the web benefiting drivers with sleep disorders. A good starting point is the road safety charity aptly named Brake. They list a staggering amount of scary statistics, pointing out the large groups of people endangering our roads on a day to day basis. They estimate that one in ten road accidents are down to driver sleepiness; that statistic alone warrants utmost caution among those who know they aren’t sleeping well. Brake quotes:

Sleep scientist Melanie Marshall says, “Untreated, undiagnosed sleep apnoea individuals are more lethal on our roads than individuals who have been drink driving.”

Brake has great further information on Driver Tiredness, Driver Stress & Emotions, Risks for Older Drivers and Laws regarding Death by Dangerous Driving. They also have PDF documents for fleet managers containing information about how they can assist their drivers in road safety. Those relevant to sleep disorders include Stress & Distractions and Driver Assessment & Monitoring.

If you are unsure whether you are just not sleeping well temporarily or a sleep disorder might cause your sleepiness symptoms, take this free online screening test and discuss the results with your doctor. If a clinical diagnosis confirms you have a sleep disorder like Obstructive Sleep Apnoea (OSA) you are obliged to inform the DVLA.

Group 1 licence holders (car/ motorcycle) diagnosed with sleep apnoea must stop driving until the symptoms have been controlled and confirmed by medical opinion.

Group 2 licence holders (LGV) diagnosed with sleep apnoea must stop driving until the symptoms have been controlled, and must have ongoing treatment. Licensing reviews will be carried out regularly, usually annually.

The Driver & Vehicle Licensing Agency (DVLA) has many pages on their website dedicated to tired driving and Sleep Apnoea in drivers. This PDF leaflet called “Think! Tiredness can kill!” explains the implications of Sleep Apnoea for drivers. Their D9 form tells us:

If you have ever had or presently suffer from any of the following
conditions you must write to the Drivers Medical Group, DVLA,
Swansea SA99 1TU or telephone on 0870 600 0301 with the nature
of your condition, as it may affect your fitness to drive.
FAILURE TO DO SO IS A CRIMINAL OFFENCE PUNISHABLE
BY A FINE OF UP TO £1,000.

• …
• Narcolepsy or sleep apnoea syndrome
• …

The DVLA’s medical section has all the information you need including how tell them about your sleep disorder and what happens next. Your licence can be accordingly issued, revoked or refused. In some cases they may contact your doctor, arrange to be examined or ask you to undergo a driving assessment or test. They aim to resolve most medical enquiries within 15 working days. CPAP users tend to get their licence re-issued after they confirm with the patient’s doctor that the CPAP therapy is having the desired effect.

Some people may feel opposed to risking their licence by telling the DVLA or even by seeing their doctor. After all, some rely on driving to pay their bills and food. It is important to realize the full extent of the risks you expose yourself and other road users to if you keep on driving whilst sleepy, fatigued or lethargic. It’s not just yourself who can be harmed or killed. Think about your children in the back seat or the car behind you.

UPDATE: There is a scheme called “Access to Work” run by the Employment Service (ES) which can help people with disabilities and those who’s licence has been revoked for medical reasons to regain access to work. A good write-up can be found here and an evaluation here.

The Government has produced various leaflets and posters to hit home the risks you pose. You can see some of them here and here.

Some of the slogans designed to make you take direct action:

• [Disabled Parking Sign] Every Hour A Driver With OSA Makes Someone Else Eligible To Park Here
• Daddy Used To Drive A Big Lorry, Then He Fell Asleep
• Bet You Wish You’d Crashed At A Mate’s
• You Drive For A Living But You’d Kill For Some Sleep?
• Think You Can Do The Job With Your Eyes Closed?

You can watch a video or listen to audio by the THINK! Road Safety initiative here. Also read their publication called “Wake up to the signs of tiredness” here.

If you are worried about nodding off whilst at the wheel, we urge you to do the following:

1. Take this online test today.
2. Consult your doctor and if need be, get referred to a Sleep Clinic to get diagnosed.
3. Based on the outcome of the sleep lab test, consider your sleep disorder treatment options. This can range from surgery or dental splints to CPAP or lifestyle changes and weight loss.
4. Don’t forget to tell the DVLA about your test results.
5. For some forms of treatment you may have to join the queue on the NHS waiting lists though most are available privately as well.
6. Once receiving treatment, arrange a follow-up with your doctor or sleep clinic to confirm the symptoms have sufficiently reduced.
7. Now re-apply for your drivers license, if applicable.
8. Don’t drive when feeling tired!

If you have any questions about OSA, CPAP and driving please leave them in the comments below or discuss them with fellow drivers in our forums.

Let’s have a look at the various search terms people use to find sites like cpap.co.uk and other CPAP or OSA related websites. By digging through the access logs, we can spot the common, strange and sometimes funny queries people type into Google or Yahoo to get an answer.

“Sleep Apnea + will I die?” This web surfer must have been in a fair bit of worry and doubt. To answer the question, it is unlikely you will die from sleep apnea. People only die from sleep apnea if they let this condition go untreated. They could (worst case) die in their sleep from a lack of oxygen or get brain damage and die later. Others fall asleep at the wheel and die in the subsequent car crash. Others carry on living in a constant state of sleepiness for so long they put so much stress on their body they develop cancer or heart failure. On the bright side, with treatment such as Continuous Positive Airway Pressure (CPAP) all of these scenario’s can be avoided quite comfortably. Talk to your medical professional or in the various Sleep Apnea and CPAP patient and user forums to get answers to all your doubts, worries and questions.

“Sleep clinics UK“, “Sleep lab Edinburgh“, “NHS Sleep Clinics” etc. These searchers seem to be looking for a sleep clinic near to where they are. We have a sleep clinics map here, it features clinics in the UK, USA and Canada. CPAP-Europe has a map with all UK clinics here. The Sleep Apnoea Trust has a map here. Between the three of them, you should be able to find a sleep clinic from Devon to Aberdeen and London to Glasgow.

“Side effects of CPAP” or “Side effects of using a CPAP machine” - Generally, if all is set up well, there are few to none. The most common one happens when the mask fits poorly so you get air blowing in your eyes. Some people swallow air when the pressure is too high and they may feel a little bloating. Otherx occasionally get a skin rash from the mask rubbing against their face. But generally, these can be overcome with quality equipment, good preparation and proper care.

“Alternatives to a CPAP machine” , “CPAP Alternatives” - The professional medical consensus is that CPAP is the best treatment for sleep apnoea. However, for some people, alternatives to CPAP could work well. Those alternatives could sometimes also be tried in conjunction with CPAP therapy in order to improve the underlying cause of the obstruction in OSA. Whether or not the following are a good option to explore for you depends on your doctor’s opinion.

Alternatives to CPAP include mandibular advancement devices, which is like a gum shield for Rugby players. It helps position the jaws in such a way that the tongue and throat is less prone to blocking the airway. A splint could also achieve the same goal by forcing the airways open. Some have reported that singing tones the muscles in the back of the mouth and throat in such a way that they experience fewer collapses of the airway. Yet others resort to surgical intervention such as nasal, septal and adenoid surgery. These are intended to remove blockages or improve the airway. Tonsillectomy or uvulo-palato-pharyngoplasty (scrabble, anyone?)could also be beneficial. These remove or reduce the size of the tonsils to avoid them blocking the airway. Somnoplasty is similar, in that it makes tissue around the airways shrink in size so the air passages open up and are less prone to collapsing.

“Where can I buy a CPAP machine?“, “UK CPAP Shop” or “Where can you buy a CPAP machine?” - Most people wait for the NHS to supply one. Those who choose not to wait for months, or in some cases years, have the option to pay for CPAP therapy with their own money. Respironics CPAP machines can be bought online or via the phone from CPAP-Europe.com. That’s where I got my Auto M-Series from. ResMed machines can be bought direct from ResMed. The BS&SAA can supply GoodKnight machines. I don’t know if they sell directly or just via the NHS but Fisher & Paykel’s website is here.

“Can I claim the VAT back on CPAP?” - You generally don’t have to pay VAT in the first place but if yo have paid VAT on the equipment and it is for personal use then you should be able to claim it back. CPAP equipment is eligible for relief from Value Added Tax under Group 12 of the Zero Rate Schedule to the Value Added Tax Act 1994. If you are in any doubt as to whether you are eligible to receive goods or services VAT Exempt you should consult Notice 701/7 - “VAT reliefs for disabled people” or ring the National Advice Service on 0845 010 9000.

“How much are CPAP machines?” or “How much does CPAP equipment cost?” - This varies per model but an entry level CPAP machine costs around £250 with advanced models like autotitrating machines going up to £500. A basic mask starts at around £50 with more advanced models going up to £130. Whilst the machine should last for many years, the mask tends to need replacing every 12 to 18 months. Maintenance of the machine involves replacing filters every now and then. This tends to cost you around £15 a year. Electricity costs for running a CPAP machine have been calculated to be as low as 6p per hour or around 50p per night.

“What is the best CPAP machine?” or “Who makes the best CPAP machine?” - There’s no way of giving a correct answer to that one. As these are life critical devices you can expect every brand to deliver continuous positive airway pressure machines that do the job perfectly, consistently. Though to give you some idea, if you define ‘best’ by the amount of research and development, experience and market perception, it is safe to say that the Respironics REMstar M Series range and the ResMed S8 family are the creme de la creme in CPAP land. They have so much technology packed into them, it would probably make NASA proud. I don’t think you can go wrong with either manufacturer.

That’s enough search coverage for today, if you liked this exercise, we’ll pick some more at a later stage.