Introduction

If you are reading this leaflet, the person you care for may have been told they have a condition called obstructive sleep apnoea (OSA).

What is obstructive sleep apnoea (OSA)?

For people with OSA, the airway gets narrower and collapses while they are asleep. This stops air getting into their lungs and oxygen getting into their blood. People briefly wake up when this happens then fall back to sleep. For people with OSA, this happens lots of times while they sleep.

The signs and symptoms of obstructive sleep apnoea (OSA)

• snore
• stop breathing while they are asleep and make grunt sounds when they start breathing again
• sleep badly, which can make them tired during the day, find it difficult to remember things, be irritable or low in mood.
• wake up to do a wee a lot of times in the night
• they might have heart palpitations at night
• children may be hyperactive
• adults might find it hard to sleep

These symptoms usually happen gradually over a number of years. Putting on weight can make OSA worse.

OSA can be very serious. If people do not get the treatment they need, they can have serious heart problems, which can sometimes cause death. This is why treatment is so important.

Finding out if someone has obstructive sleep apnoea (OSA)

OSA is diagnosed by sleep services at local hospitals. If you think someone has OSA, their GP can refer them to the hospital for an assessment. The assessment usually involves a sleep study which usually takes place at home. This will show whether the person has OSA and how it should be treated.

What can help?

Sleep services usually suggest that people try to lose weight first, as well as making sure the person has good sleep habits. For people with lots of symptoms and severe OSA, other treatment options will be tried. The most effective treatment is called CPAP, which stands for continuous positive airway pressure.

What is continuous positive airway pressure (CPAP)?

Patients are given a CPAP machine with a long tube attached to a mask, which they must wear while they are sleeping. The CPAP machine blows air through the mask into the person’s nose (or their nose and mouth); this stops their airway from closing while they are asleep. CPAP helps people to sleep better, helps their OSA symptoms to get better and helps to keep them safe from having serious problems with their heart.

Why is it so important to use a continuous positive airway pressure (CPAP) machine for obstructive sleep apnoea (OSA)?

Recent safeguarding investigations have found that people with a learning disability and autistic people have died because they haven’t used their CPAP machines.

If people do not use their CPAP machine regularly when they are asleep, they could be at risk of having serious health problems, such as:

• high blood pressure
• having a stroke
• dying with heart disease

If someone finds it hard to use their CPAP for any reason or stops using it, you must speak to the hospital sleep service and ask for help, to keep the person safe.

Continuous positive airway pressure (CPAP) for people with a learning disability and autistic people

Obstructive sleep apnoea can be common in people with a learning disability, especially people with Down’s syndrome.

CPAP machines might feel strange when they are first used and some people with a learning disability and autistic people may need extra encouragement to help them get used to it.

Some people find it hard to breathe with CPAP to begin with; help them to relax and reassure them that they can breathe. Some people do not like the feel of the mask or the noise from the machine.

It is a good idea for people with a learning disability and autistic people have a CPAP machine that can be remotely monitored.  Ask the hospital sleep service for this type of CPAP machine if the person does not have one already. This will help the hospital to check how often the machine is being used and whether the settings are right (you will still need to contact the hospital to ask them to do this).

Staying healthy

Smoking, drinking alcohol and being overweight can all make obstructive sleep apnoea worse. Making sure that people exercise, eat healthily and lose weight can make them less likely to need continuous positive airway pressure (CPAP) treatment. Drinking less alcohol, stopping smoking and having medication reviewed can also help.

Some people with a learning disability do not have capacity to make decisions about what they eat and how much exercise they do. This is because they find it hard to understand, weigh up and communicate information about staying healthy.

People with a learning disability who do not have capacity to make decisions about diet, exercise and weight must be safeguarded against reaching an unhealthy weight. It is important that people are cared for in ways that support them to stay healthy. If extra help is needed, speak to the person’s GP.

How to use the mask

There are different types of continuous positive airway pressure (CPAP) masks. The mask may cover both their nose and mouth or just their nose.

It is very important that the mask fits well and is comfortable so the person is happy to use their CPAP machine.

Please see our mask fitting leaflets and videos for instructions on how to put on a CPAP mask (note: there are different instructions for different types of masks).

When the person is using CPAP, the mask should be sealed to their face. This means that no air will leak from the soft cushion around the mask. (Please do not tighten the mask too tight to seal it. Masks should not leave a mark on the skin).

If air leaks from the mask, CPAP cannot work properly to keep the airway open. It can also wake the person up.

To stop air from leaking:

• Pull the mask away from the face while the person is still wearing it and then gently put it back on their face. Often, this is enough to stop the leak by resealing the mask.
• Make sure their mask is fitted correctly (see our mask fitting leaflets).
• Contact the hospital sleep service for help if you cannot stop air from leaking.

Please note that all masks will have some holes in them where some air leaks out, to get rid of the carbon dioxide breathed out. These holes in the mask are important and should never be blocked or covered, as they are there to stop the person from suffocating.

Turning the continuous positive airway pressure (CPAP) machine on

Turn the CPAP machine on by pressing the on/off button once. Air will start blowing into the mask.

Turning the continuous positive airway pressure (CPAP) off in the morning

When the person wakes up, push the off button on the CPAP machine. Help the person to take off the mask and leave it next to the machine.

Humidifier

If the person gets a dry nose or mouth when they use their continuous positive airway pressure (CPAP) machine, tell the hospital sleep service. They may provide a humidifier with a water tub that attaches to the CPAP machine, to stop the person getting a dry nose or mouth. The water tub will need to be filled up every night with water that has been boiled and then left to cool down.

Using oxygen with continuous positive airway pressure (CPAP)

Some people may be prescribed oxygen to use with their CPAP machine. If the person has oxygen, please read our attaching oxygen to CPAP leaflet for information and safety advice.

Getting used to continuous positive airway pressure (CPAP)

If somebody is new to CPAP, it may take them longer to fall asleep than normal. Some people may wake up after they have fallen asleep when they are using the CPAP machine; this is normal. If they wake up, press the on/off button once to turn the CPAP machine off and press it again to start it again. This will reset the pressure to make it easier for the person to breathe.

Leave the mask on and encourage the person to try and go back to sleep. If they are anxious or stressed, take the mask off and give them a short break until they feel ready to put it back on.

Some machines start themselves as soon as the mask is put back onto the face, while others will need you to press the on button.

The ideas below can help people to get used to CPAP:

Cleaning the continuous positive airway pressure (CPAP) machine

It is important to keep the CPAP equipment clean to keep the user safe and healthy and to stop infections. There are some parts that need cleaning every day and some parts that need cleaning every week.

Cleaning every day

The soft plastic mask cushions that touch the face will need cleaning every day. Take the cushions off and wash them in warm water with washing up liquid. Rinse any bubbles away using the tap and leave the cushions to dry face down on a clean towel or kitchen roll.

If the mask cushions cannot be removed from the mask, put a cloth into warm water with washing up liquid, ring it out until most of the water has gone, and then use it to wipe the soft plastic cushions (inside and out). Wipe away any bubbles with a clean cloth rinsed in clean water.

Cleaning every week

The CPAP machine will need wiping once a week with a clean, dry cloth.

The CPAP mask, straps and tubing will need cleaning once a week. Wash them in warm water with washing up liquid and rinse any bubbles away using the tap. Squeeze excess water from the straps. Allow the mask to dry face down on a clean towel or kitchen roll. The tubing is best hung over a shower door to dry. This should stop dripping water and puddles, which can cause slips or falls.

Filters will need checking and either cleaning or replacing. In general, black filters will need washing (in warm water with washing up liquid) and rinsing every week. They need to be dry before being used again. White filters should be checked every week, but these generally cannot be washed. They will need replacing every 1 to 2 months.

You will have been given a leaflet telling you how to take care of the filters in the CPAP machine. Please follow the instructions on the leaflet.

Watch our cleaning the filter video to help you to clean them.

If the person has a humidifier water tub, remove it from the CPAP machine and wash it in warm water with washing up liquid.  Rinse any bubbles away using the tap and leave it to try. (Check the CPAP machine’s instructions to find out how to remove the water tub).

Checking the continuous positive airway pressure (CPAP) machine

The CPAP machine needs to be checked from time to time and every machine will have different service schedules – please check with the hospital sleep service how often the person’s CPAP machine needs checking.

Important

If the person has any problems or stops using their continuous positive airway pressure (CPAP) machine, you must contact the hospital sleep service straight away and ask for help. The person will not be safe and could become seriously ill and even die if they are not using their CPAP machine.

Please contact the hospital sleep service straight away if the person has any of these problems:  

• they feel poorly
• they feel like they have a full tummy or feel bloated
• they have a dry mouth
• they have water in their mask
• their nose is bleeding
• they say the CPAP is not working properly
• they saying that their CPAP is noisy
• any other problems that are not normal for them.

Supporting people who drive

People who drive must tell the Driver and Vehicle Licensing Agency (DVLA) if they have a health problem that makes them sleepy when driving. They could have to pay a fine if they do not tell the DVLA about their sleep problem, because this can be dangerous. Ask the hospital sleep service if you’re not sure how the sleep problem affects the person’s driving.

You can contact the DVLA at: Drivers Medical Enquiries, DVLA, Swansea, SA99 1TU, Telephone: 0300 790 6806