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Advice for current CPAP patients

CPAP Patient Handbook

Please speak to a member of staff if you need this leaflet in large print, braille, audio or another language.

The CPAP equipment provided to you remains the property of the Sleep and Ventilation Service at all times and you will be required to sign a loan agreement when you receive it.

  • If the equipment is lost, stolen or damaged by improper use then you will be required to pay for its replacement at a cost of approximately £500 plus VAT.
  • Please ensure that you have adequate home insurance in place to cover the cost of replacing the equipment.

Please bring all your equipment with you whenever you attend clinic for a review.

Introduction

Continuous Positive Airway Pressure (CPAP - pronounced ‘see pap’) is the most effective treatment for moderate and severe Obstructive Sleep Apnoea (OSA) and is recommended by NICE (National Institute for Clinical Excellence) as the first choice of treatment if you are diagnosed with OSA.  

This handbook is intended to help you obtain the most effective treatment from your CPAP equipment and to provide routine equipment care and troubleshooting information.

It is not meant to replace the discussion between you and your doctor / healthcare professional. If you have any concerns or require further explanation, please discuss this with your doctor / healthcare professional or contact the Patient Helpline by email or telephone

Obstructive Sleep Apnoea (OSA) is a common condition affecting up to three in 100 people.

OSA is a result of the upper part of the airway behind the tongue narrowing and collapsing during sleep. This causes an interruption to breathing. Events are ended when a brief awakening triggers a loud snort, and normal breathing is resumed.

Occasional brief obstructive events are harmless and are quite common in a normal adult.

However, many OSA sufferers experience hundreds of episodes each night.

This means that each brief awakening required to re-open the airway destroys the normal sleep pattern and sleep is severely disrupted.

This prevents the sleeper from enjoying sufficient deep sleep to feel refreshed and energetic the next day.

If OSA is untreated it can result in increased risk of serious medical conditions including high blood pressure, heart attack, stroke and diabetes. Sufferers may also have to surrender their Driving Licence.

Various lifestyle changes may help to reduce the severity of OSA. These include:

  • Weight loss. If you are overweight or obese then weight loss is likely to improve your breathing at night. Speak to your GP about referral to a specialist weight loss service if this is something that you would like help with.
  • Avoid alcohol and sedative medication (for example sleeping tablets). These will relax your muscles more and make OSA worse.
  • Change your sleeping position. Some people with OSA find that their breathing is better if they don’t sleep flat on their back.

If your OSA is mild, then these lifestyle measures will often be enough to control your symptoms. If your OSA is moderate or severe then other treatment such as CPAP is usually required.

If you have mild OSA, CPAP is only recommended if your symptoms affect your quality of life or other treatment options have not worked.

CPAP treatment consists of a small air compressor, a hose and a mask that is worn over the nose, or nose and mouth.

The CPAP machine

The CPAP machine

The hose

The hose

The mask

The mask

CPAP works by blowing pressurised room air into your throat via a mask to prevent your airway from narrowing whilst you are asleep.

To get the most benefit from the treatment, CPAP should be used every night for the entire time that you are asleep.

The benefits of CPAP treatment include:

  • Sleep quality is improved.
  • Snoring is prevented.
  • Oxygen levels and heart rate are kept stable at night.
  • The risks of high blood pressure and heart disease are reduced.
  • Morning headaches related to OSA are prevented.
  • You wake feeling more refreshed.
  • You become more alert and less sleepy during the day.

Some of these symptoms may be related to other medical conditions or medication that you are taking. CPAP only controls symptoms related to OSA.

Your CPAP has been tailored to your specific requirements.

 The settings on your CPAP must not be changed.

The only settings that you should adjust are Humidification (when fitted) and Ramp.

 Sleeping when wearing a mask and breathing pressurised air can feel strange at first and it may disturb your sleep. Most people take a few nights to get used to CPAP. This is understandable and it is important that you persevere and continue with the treatment even if you are having difficulties.

Useful tips to help you get used to the treatment include:

  • Ensure that you are happy with how to fit the mask properly. Refer to the booklet provided with your CPAP mask or contact the Patient Helpline if you need more information.
  • Some people find it helpful to practise wearing the mask whilst they are awake or whilst they are having a short daytime nap. This should help you get used to it.
  • If you wake during the night and the air pressure feels strong then use the ramp button to reduce the pressure to allow you to fall back to sleep.
  • Eventually the aim is for you to use the machine for the whole night but if you can’t manage this at first then it is better that you use the treatment for a few hours than not at all. If you keep trying with it every night then you should find that it gets easier and that you can sleep for longer with it. The majority of people sleep most deeply in the first two or three hours of the night so if you can use CPAP during this period then it may still be of benefit.
  • Your device has the capability of being paired to an Android or an iPhone by downloading the free DreamMapper App provided by Phillips Respironics to enable you to self-monitor your own treatment if you wish to do so. (Please see page 14 of your User Manual on how to sync your phone to your CPAP)
  • If you have any concerns about your treatment then please contact the Patient Helpline by email or telephone using the details provided on page 26.

If you are struggling with excessive mouth or throat dryness, it may be necessary to add heated humidification to your CPAP circuit. The air that you breathe in passes over a small chamber of water that has a heating plate beneath it. You can control the temperature to suit your needs. This is designed to add comfort, not improve the control of your OSA.

The humidification unit pushes onto the side of your existing CPAP machine. When this is attached and the air starts blowing, you will notice a number either next to the dial or on the screen depending on the CPAP model supplied. The number relates to the water temperature with zero being off and five being maximum heat and humidification level.

  • The setting can be changed until optimal comfort has been reached. However, please be aware that this may depend on the season of the year.
  • If you are still suffering from dryness, try setting the humidification level higher.
  • If you find condensation in the mask or tubing, set the humidification level lower.
  • Although the condensation is not a risk, it is best to ensure the CPAP machine is below your head level whilst in use, ideally on the floor. This will ensure any water does not track to the mask.
  • Fill the chamber with freshly boiled water that has been allowed to cool down each night.
  • Do not allow the chamber to run dry.
  • Any water left in the chamber in the morning should be discarded.
  • Fresh water should always be used in the chamber. Never top it up.

The latest CPAP machines that we provide have the capability to enable a cellular modem for data transmission.

This can be beneficial as it allows us to remotely monitor your data, when necessary, in order to deliver the best treatment options for you.

Using the modem allows us to send you notifications and also change CPAP settings remotely rather than you having to attend the department with your machine for this to be done.

Your CPAP modem capability will be enabled and utilised according to clinical need. We will inform you when we intend to use this technology and discuss with you the reasons for our decision. We will explain your data protection rights and how your data will be used and safeguarded according to the General Data Protection Regulations (GDPR).

Instructional videos on how to use and clean your CPAP, along with mask fitting videos, can be found on our website www.uhnm.nhs.uk under Sleep Service.

In order to maintain the equipment in the best possible working order we recommend that you carry out simple routine care and maintenance procedures as follows:

Mask

Do not wash masks using bleach or chlorine compounds or place the mask in a dishwasher. Do not dry the mask on direct heat.

  • The cushion should be cleaned using a clean damp cloth / wet wipe every day. This is important to prevent it from causing skin irritation and to ensure that it continues to provide an airtight seal.
  • Masks should be cleaned thoroughly at least once per week with warm soapy water. Choose a mild detergent that does not have a strong fragrance, e.g. baby shampoo.
  • After washing, rinse with water and leave to air dry.

You will be provided with two masks per year, this complies with the manufacturer’s life expectancy of the mask.

You can purchase further masks if you wish and we will provide manufacturer’s details for you to contact them directly.

Headgear

Do not place the headgear in the washing machine or tumble dryer.

  • The straps should be removed and washed at least once a week.
  • The straps should be hand washed only.

Hose

  • The hose should be removed and rinsed through with warm soapy water once a week.
  • Leave the hose to air dry after washing.

CPAP Machine

Do not immerse the unit in water.

  • The compressor should be kept clean and free of dust.
  • Wipe over with a damp cloth weekly and clean off any spills or stains.
  • The filter should be removed once a week, washed in warm water and dried thoroughly before replacing.

An adequate supply of washable pollen filters can also be supplied on request.

Your CPAP machine will be checked by us every five years for electrical safety and flow pressure.

Humidification Chamber

On a weekly basis, the water chamber should be washed in warm soapy water. Alternatively, the water chamber can be placed in the top drawer of a dishwasher.

Most people can manage without CPAP for a few nights. Whilst you may not sleep as well it will not be harmful. However, your levels of daytime tiredness may increase so it is not advisable to drive until your use of CPAP has resumed and your symptoms have resolved.

Occasionally you may be unable to use your CPAP as a result of unforeseen circumstances including:

A Power Cut

If you are aware of a power cut during the night, remove the mask and turn the CPAP off. Sleeping with the mask on and CPAP machine off is not dangerous. All CPAP masks have a special valve to enable you to breathe room air in the event of a power cut, so do not be concerned if a power cut occurs while you are asleep.

CPAP Breakdown

CPAP machines do occasionally breakdown. If this happens, contact the Patient Helpline and your call will be returned as quickly as possible to arrange a mutually convenient time to return the faulty machine so we can assess the fault and repair or provide a replacement.

Mask Breakage

Contact the Patient Helpline.

CPAP is a treatment that you should use every night, including whilst you are away from home. If you are going on holiday, we would recommend that you take it with you.

  • Hotel rooms do not always have a plug socket close to the bed. You may wish to consider carrying a small extension lead in your CPAP bag when staying away from home.
  • If you are camping or caravanning it would be beneficial to book somewhere with electric hook-up. However, it is possible to purchase leads that enable your machine to run off a battery supply from an electrical store or direct from the manufacturer.
  • The CPAP machine is voltage adapting and will work anywhere in the world as long as you have an appropriate adaptor for the mains plug.

 Travelling Abroad

Before travelling abroad please contact the Patient Helpline so that we can supply you with a customs letter. This will explain that you require CPAP for your medical condition and therefore you must be allowed to travel with it.

You are responsible for your CPAP equipment whilst on holiday so please make sure that you have adequate insurance to cover the cost of any loss or damage.

Flying

  • Always carry your CPAP as hand luggage when flying.
  • If you contact the airline in advance you may be able to have an extra carry-on allowance.
  • Some airlines permit the use of CPAP on long haul flights but please check specific arrangements with the airline before flying.

Travelling by sea

  • If you are going on a cruise contact the company beforehand to let them know that you will be using a CPAP machine.
  • Please ensure that there is an appropriate power supply in your room.

If you are going to be staying in hospital for a period of time, particularly if you are having an operation, it is very important that you let the hospital know that you have obstructive sleep apnoea and that you will be bringing a CPAP machine with you to use. This is essential information for the doctor if you are going to be given an anaesthetic.

  • CPAP treatment is specialised and not every hospital has experience of using it so be prepared to set up your machine and mask yourself during your stay.
  • It is not certain that the hospital will be able to provide spare CPAP equipment so please double-check that you bring everything you need for your stay.
  • Ensure that your CPAP equipment is clearly labelled with your name and contact details and remember to keep track of it when moving between different wards and when you go home.

After your CPAP has been issued, you will be reviewed by a nurse or physiologist at regular intervals to assess how treatment is progressing. This review may be by phone or by appointment at the Sleep Clinic and you will be notified by letter / telephone. It is imperative that you attend these reviews.

  • Please bring all your equipment and this handbook with you whenever you attend clinic.
  • If you have any concerns or queries about attendance, please contact the Patient Helpline.

Failure to attend may result in safety issues and your condition being inadequately treated.

  • Should you fail to respond to two consecutive appointments, phone or face-to-face, without prior notification, it is our policy to discharge you from our care and therefore no further consumables will be issued and machine servicing will become your responsibility.
  • If you are discharged from our clinic, but later decide that you wish to be reviewed then you have to be

referred back to us once more by your GP.

You are under no obligation to continue using CPAP. However, we do need to review you to ensure you are making an informed decision regarding withdrawal from treatment. There can be long-term health implications of untreated sleep apnoea. We also need to remove you from our patient list and inform your GP of your decision.

If you have made the informed decision to withdraw from treatment we would appreciate the prompt return of the CPAP equipment so it can be utilised by others.

Failure to return equipment once treatment has stopped may result in you being charged for the necessary replacement.

It is every driver’s responsibility to avoid driving if they are too sleepy to do so safely. Driving whilst sleepy has been shown to be as dangerous as driving whilst drunk.

Please refer to the DVLA leaflet provided regarding their rules concerning OSA and driving. Alternatively visit the DVLA website https://www.gov.uk/government/organisations/driver-and-vehicle-licensing-agency and search for ‘excessive sleepiness and driving’.

Please refer to the driving and sleep disorders section of the website for more information.

Do not drive if you are not alert enough to do so.

When you use CPAP treatment effectively and your sleepiness symptoms are resolved, you should be able to drive as normal.

You can be fined up to £1,000 if you do not tell DVLA about a medical condition that affects your driving. You may be prosecuted if you are involved in an accident as a result.

The following table provides possible solutions to common problems that users of CPAP may sometimes experience.

Problem

Cause

Solution

Sore or dry eyes

Leak due to mask

Reposition and adjust mask.

Mask size not appropriate

 

Contact Patient Helpline for a mask refit.

Air from Exhalation Valve

Unfortunately all masks have this feature DO NOT COVER Exhalation holes. Some models have covers to minimise this.

Redness on face where mask is in contact with the skin

 

(A little redness and marking is inevitable)

Headgear adjusted too tightly

Loosen headgear.

Mask size not appropriate

Contact Patient Helpline for replacement mask.

Irritation or allergic reaction

 

Contact Patient Helpline for advice.

Sore on the bridge of nose

Loosen Headgear; nasal pads can be issued.

Contact Patient Helpline.

Runny nose or recurrent

nose bleeds

 

Nasal reaction to airflow

 

Heated Humidification may be needed or refit to Full Face Mask. Contact Patient Helpline.

Cold nose

 

Tubing letting off heat

Reposition tubing so that it runs under bedcovers to insulate the tubing.

Bedroom too cold

Increase heat in room if problem continues. Heated Humidification may be needed.

Dryness of throat or nose

Air too dry

Heated Humidification may be needed Contact Patient Helpline.

Nasal, sinus and/or

ear pain

Sinus or middle ear infection

Contact Patient Helpline.

Feelings of discomfort from the sensation of too much pressure

High CPAP pressure may cause feeling of discomfort but may be necessary to relieve apnoea

It may take up to four weeks to adjust to the system. If you are still having trouble after this time contact Patient Helpline.

Air from the flow generator seems warm

Filter obstructed

Change filter or move flow generator away from bedcovers or curtains.

Room too hot

Reduce room temperature.

Treatment pressure seems low

Filter is dirty

Clean or replace filter.

Tubing not connected properly

Check and tighten both ends of tubing.

Tubing kinked or punctured

Straighten and check.

Plugs missing from mask ports

Replace plugs.

Pressure changed

Contact Patient Helpline.

Symptoms of sleep apnoea recur

Your pressure may need increasing

Contact Patient Helpline.

The treatment isn’t helping.

 

Bear in mind that most people with OSA have had the condition for many years before being diagnosed.

 

Using CPAP treatment is not always an instant fix and it can take several weeks of using it before the full benefits are felt; consider, are the symptoms being caused by other problems?

I’m struggling to breathe against the pressure or finding the mask claustrophobic.

 

Try practising with the treatment while you’re awake or having a daytime nap.

 

Contact the Patient Helpline if problem continues.

I keep taking my mask off when I’m asleep.

A common thing to happen with new CPAP users

Persevere. It can take time to get used to the treatment.

 

Make sure that the mask is correctly adjusted and try changing the humidifier settings or contact the Patient Helpline.

 

I feel bloated or I have trapped wind at night or in the morning.

Swallowing air which is common with full face mask

It may stop happening as you get more used to using CPAP, but if it doesn’t:

 

Try drinking peppermint tea in the mornings.

 

Try sleeping with an extra pillow to elevate your head.

 

Try increasing or decreasing the humidifier setting.

 

Contact the Sleep Service as you may require a pressure adjustment – this can be done remotely or you may need to trial a different mask.

 

How long will it take to get used to CPAP?

Most people adjust to CPAP in one or two weeks, but occasionally it may take a little longer. This could be because you are very sensitive to noise or the feel of the mask on your face.

How soon after I start using CPAP will it be before I notice an improvement?

If all your symptoms are related to OSA, you should notice an immediate improvement when you start CPAP treatment. However, some symptoms may still be present if related to other health conditions or medications.

How often will I need to use my CPAP?

You will need to use your CPAP every night. If you do not use it your symptoms will return to their previous level.

Will the pressure on my machine ever need changing?

The CPAP automatically delivers the pressure your airway requires to keep it open, although sometimes there is a need for fine tuning. If you find your pressure difficult to tolerate, notice an increase in daytime symptoms or snoring, then contact the Patient Helpline.

Will my blood pressure improve after I start CPAP?

Sometimes, but do not alter your medication without consulting a doctor.

Is it easier to lose weight when using CPAP?

It may be. You may find that your energy levels increase and you feel motivated to increase your level of activity.

Do I need to take my machine with me if I need to be admitted to hospital, even for a day?

Yes, and you should clearly label your device. Your condition may take longer to improve if you stop your CPAP treatment and your general wellbeing starts to deteriorate. If you are having surgery, either planned or urgent, it is very important that you tell both the surgeon and the anaesthetist that you are being treated with CPAP.

I’m a light sleeper. What do I do if I find my CPAP a bit noisy?

Place the CPAP on a heatproof mat to reduce noise vibrations. You could place a large cardboard box over the CPAP ensuring there is adequate air circulation around the filter and/or place the machine under the bed. If there is noise from the mask frame vents, check that there is nothing blocking them. Alternatively, try ear plugs. We are unable to guarantee you a particular model of machine, but if you feel this is a significant problem, once you are settled on treatment we can provide you with information on purchasing an alternative machine.

I’ve just started CPAP and it’s irritating my nose.

The cool dry air of CPAP can cause a runny nose and sneezing in some people but it usually settles down within a few days to a week. If the problem persists longer than a week you should contact the Patient Helpline.

I find the air through the mask is cold and disrupts my sleep.

Some people experience dryness of the nose, mouth or throat when on CPAP, particularly during the winter months. If the air through the mask is cold and disrupts your sleep try adjusting the temperature of the room, place the tubing under the bedclothes (as body heat will increase the temperature of the air passing through the tubing), or insulate the tubing by wrapping it in lagging material (available from most hardware stores). Heated Humidification can be introduced if necessary.

My nose gets blocked regularly, so I have to breathe through my mouth. What do you advise?

Since the nose is the only effective point of entry when using nasal CPAP, it is necessary to keep it clear. Olbas Oil & nasal sprays can be used in the short-term. Alternatively a mask refit to a Full Face Mask may be required. You should contact the Patient Helpline to discuss this problem.

I feel air leaking out of my mouth as I fall asleep.

If you are using a nasal mask, your mouth needs to be closed while you sleep to ensure that you are effectively treated. This can feel strange at first. If you are opening your mouth during the night, a chin strap could be tried or a Full Face Mask fitted - please contact the Patient Helpline.

Can I use CPAP if I have a cold?

Upper respiratory tract, middle ear or sinus infections can cause difficulty in continuing CPAP treatment. If you are unable to breathe through your nose, stop using the machine until the infection has cleared. However you should be aware that if you experience an increase in your daytime tiredness you should not drive until symptoms have resolved. If you continue with CPAP during an infection, it is advisable to wash your mask and tubing thoroughly every day.

Will I ever be able to stop using CPAP? Will I ever be cured of my snoring and sleep apnoea?

OSA is generally a long-term condition. CPAP will effectively control your sleep apnoea as long as you continue to use it. With weight loss the severity of OSA may be lessened and CPAP air pressure may be reduced. Occasionally if enough weight is lost and OSA is cured, CPAP is not needed. However, repeat investigations would be required to prove this. For some people OSA can still require treating despite weight loss due to the structure of the jaw and upper airway.

Quite often I wake and find I have taken my mask off in my sleep. How can I avoid doing this?

This may indicate that your CPAP pressure is either too high or not high enough to completely control your sleep apnoea. If this occurs frequently you should contact the Patient Helpline and your pressure will be reviewed. It could perhaps be due to nasal congestion which could make tolerating CPAP pressures difficult, therefore nasal decongestants may be necessary short-term or a refit to a Full Face Mask may be required. Please contact the Patient Helpline. Occasional use of hairgrips to wake you as you remove the mask can also help break the habit, if there is no other known reason for the removal.

Why do I feel that I have to push against the air when breathing out on CPAP?

Some people find they experience a need to push against the airflow when they breathe out. In this case you may feel the pressure makes it hard to breathe out but this is merely a sensation. Breathing out against the flow of air will happen automatically when you are asleep. The CPAP machines have a comfort feature called either A-FLEX or C-FLEX depending on the type of machine. This reduces the pressure that you breathe out against – please contact the Patient Helpline to discuss further.

Using the Sleep Service Patient Helpline will ensure that your enquiry reaches the right member of staff and therefore will be dealt with quickly and efficiently. The Patient Helpline is staffed Mon-Fri 9:00am – 5:00pm.

Stoke Patient Helpline: 01782 675470

County Patient Helpline: 01785 887672

This is a voicemail service. Please leave a message and we will call you back as soon as a member of staff is available.

Please leave the following details when you call:

  • Your name and telephone number.
  • Your Hospital Number.
  • A brief message.

Messages left at the weekend or on Bank Holidays will be accessed on the next available working day.

The department does not offer a walk-in service. It is unlikely that you will be seen unless you have made a prior appointment.

Alternatively, you can email the Sleep Service at:

Stoke Email: sleephelplineemail@uhnm.nhs.uk

County Email: sleephelplineemailCO@uhnm.nhs.uk

The Patient Advice & Liaison Services (PALS)

Compliments, questions, concerns regarding Sleep Service

Tel: (01782) 676450/676455

Email: patient.advice@uhnm.nhs.uk

British Snoring and Sleep Apnoea Association

Tel: 01284 717688

Email: orders@britishsnoring.co.uk

www.britishsnoring.co.uk

The Sleep Apnoea Trust

Tel: 0800 025 3500

Email: info@sleep-apnoea-trust.org

www.sleep-apnoea-trust.org

British Lung Foundation

Tel: 03000 030 555

Email: helpline@blf.org.uk

www.blf.org.uk/

DVLA

Drivers’ medical enquiries

Tel: 0300 790 6806

www.gov.uk/contact-the-dvla