• Reference Number: HEY-985/2021
• Departments: Respiratory Medicine
• Last Updated: 1 March 2021

Introduction

This leaflet has been produced to give you important information for you regarding your care and treatment from the Home Ventilation Service.  Most of your questions should be answered by this leaflet please keep it in a safe place as you may need to refer back to it in the future.  It is not intended to replace the discussion between you and your doctor or specialist nurse, but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss with a member of the Home Ventilation team.

What is home ventilation?

Home ventilation is also known as assisted mechanical ventilation which is provided in a patient’s own home, Hospice, Nursing or Care home setting. It is a treatment to help with breathing, if your breathing becomes difficult or your muscles tire it may lead to a build-up of carbon dioxide and low levels of oxygen in your blood. A number of different medical conditions can cause your breathing to be reduced or become less regular, especially while you are sleeping.

This treatment is usually delivered through a face or nasal mask and is referred to as Non-Invasive Ventilation (NIV). In some cases, due to their clinical condition, a patient may have a tracheostomy inserted and ventilation will be given through this route (Invasive Ventilation).

This treatment is not the same as Continuous Positive Airway Pressure (CPAP) which is commonly used to treat Sleep Apnoea.

Why do I need assisted mechanical ventilation?

You will have had various tests and investigations performed which will have shown you have respiratory failure. Your respiratory condition will have affected your ability to breathe effectively overnight so you do not gain the full benefit of a good night’s sleep. Some of your symptoms may include tiredness during the day, disturbed night time sleep, lack of energy and headaches this could be due to lack of sleep but also due to ineffective breathing. If you are diagnosed as having respiratory failure it means your lungs cannot breathe out the waste products it needs to leading to a build-up of Carbon Dioxide. If the level of carbon dioxide gets too high you will become very unwell.

By using assisted mechanical ventilation you should have an improved sleep quality leading to better energy and concentration levels during the day. It can also make you feel less breathless so you feel more able to perform daily tasks. You may also feel brighter on waking and be headache free if this was a problem. It can also reduce the likelihood of you getting chest infections requiring admission to hospital for treatment.

If you do require admission to hospital please ensure you take your ventilator and patient leaflet to hospital with you. You must continue with this treatment in hospital. Some areas of the hospital and some nursing and/or medical staff may be less familiar with this equipment, please ask them to contact the Home Ventilation Team as soon as possible for support and advice.

How does assisted mechanical ventilation work?

Assisted mechanical ventilation provides support for the lungs through a tight mask fitted over the nose and/or mouth. This is attached via a tube to the ventilator which blows air into your lungs to help you breathe by supporting the muscles which make your lungs work. This is known as positive pressure ventilation. By assisting your breathing the aim is to reduce the levels of carbon dioxide in the blood and it may also increase the oxygen levels.

You need at least 6 uninterrupted hours on your ventilator overnight to maximize the effectiveness of this treatment.

The mask can sometimes feel uncomfortable initially, the nurse will support you to get used to the sensation of the mask and air blowing on your face. Most people need to use the ventilator throughout the night however some people may require to use it during the day as well.

If your breathing becomes less regular as you sleep, the ventilator helps to make sure you take the right number of breaths per minute. In this way both the rate and depth of your breathing will stay level even while you are asleep.

When you are initiated on the ventilator the Home Ventilation nurse will assess the correct mask to use and set the pressure level on the machine, you will be shown how to correctly fit the mask and start the ventilator.

This is a relatively simple treatment for you to use and you, your family members and carers will be given support and advice to manage your condition. It may take time to adjust to using the mask and ventilator however most people get used to it fairly quickly, if you have any questions or concerns please discuss this with a member of the Home Ventilation Team.

Mask Fitting

Mask fitting may feel strange at first but will become easier with practice. The mask does not need to be over-tightened, loosening the mask may sometimes help to reduce leaks and discomfort. Practicing putting on and removing your mask during the daytime may help.

Always fit your mask to the delve in your chin upwards. This prevents the mask from sitting too high on your nose which will cause leaks. Once the mask is in position on your face, hold it with one hand and slide the straps over your head with the other hand. Adjust the straps so that the mask fits snuggly against your face. Position the lower straps well down at the back of your neck, so that they pass below your ears. Try to adjust the straps evenly on both sides.

Once the machine is switched on, tighten the straps to make sure the mask fits without air leaking around it. You may need to readjust these straps once you are lying down.

The ventilator is designed to compensate for some leakage of air, so you are advised to avoid over tightening the mask as this can cause skin damage to the face, as well as affecting the leak.

If you require oxygen while you are on the ventilator you will be shown how this is fitted. Ensure this is connected and your concentrator turned on when using your ventilator.

If you wake in the night and feel uncomfortable with any aspect of the mask or ventilator, stop the ventilator and take the mask off for a few minutes. Clear your nose if necessary and then put the mask back on and recommence treatment. Drink plenty of fluids during the daytime to prevent excessive mouth dryness while on the ventilator.

Troubleshooting problems

Common side effects people experience are:

• Wind or a distended stomach, gulping air can cause this. Sleeping propped up may help. Peppermint tea or water may relieve some of the discomfort. Avoid eating just before going on ventilation. If the problem persists please inform the specialist nurse who may be able to adjust the ventilator settings.
• Sores to the face and nose, this is caused by the mask being too tight. Loosen the mask and then reposition it. Mask fitting can take a lot of practice and patience to get it fitted properly. If problems persist please speak to your specialist nurse as dressings and other masks are available.
• Sore Eyes, this is caused by air leaking from the mask and blowing into your eyes. Loosen the mask and reposition it. Do not continue with the air blowing into your eyes as this may cause significant damage.
• Dry Mouth, you need to drink plenty throughout the day to ensure you are hydrated and to avoid you becoming too dry overnight. Please discuss with your Specialist Nurse if this continues to be a problem as there are additional filters and humidifiers that may help.
• Nasal irritation or congestion, occasionally the treatment can cause irritation to the inside of your nose giving you a runny nose and sneezing or a feeling of being blocked and congestion. This may settle on its own but if it does not, then nasal sprays may help, speak to your pharmacist for further advice.

Ventilator Alarms:

As we use a number of different ventilators we cannot list every different alarm. If you are unable to solve the problem from the following please take a note of what the alarm says and contact your specialist nurse.

• Circuit Disconnection – the ventilator has detected a large leak. Check the tubing is connected correctly and that there are no cracks or splits. Reposition your mask until the leak is eliminated. DO NOT over tighten the mask as this will make the leak worse.
• High Volume – again this can be due to a large mask leak, reposition the mask until the leak is eliminated. Alternatively check the tubing is not kinked or trapped.
• Internal battery in use – there has been loss of external power. Check if there has been a power cut or the electricity cable has fallen out of the back of the ventilator.
• External power failure –there has been a power cut or the electricity cable has fallen out of the back of the machine. If there is a power cut you could contact your electric supplier who may be able to give you an update as to when your power will be reconnected.
• System Failure – in the event of an equipment failure please contact the Home Ventilation Office by telephone (01482 624130) or email. In an emergency out of hours you can contact the Respiratory Support Unit on Ward 5 Hull Royal Infirmary (01482) 875875. However the majority of people are safe to manage overnight and contact the Home Ventilation Team on the next working day.

Care of Equipment

Masks are very expensive; looking after your mask is your responsibility. If you keep your mask and tubing in optimal condition it will last you at least one year. You will be issued with one mask per year, if you would like additional masks these can be purchased direct from the manufacturer. Please discuss with your specialist nurse which mask you require.

Daily cleaning – each morning use a clean damp cloth to wipe around the mask to remove any oil or saliva build up. Leave the mask to air dry, ensure it is not in direct sunlight and do not place near a source of direct heat.

Weekly cleaning – Hand wash your mask and straps in a bowl of warm soapy water (washing up liquid). Rinse the soap from the mask and leave to air dry, ensure it is not in direct sunlight and do not place near a source of direct heat. Do not use a towel to dry as this will cause a build-up of static.

Tubing – this can be washed in warm soapy water, rinsed and hung vertically to air dry once a month.

DO NOT USE ANY GELS, WIPES OR ANY CHEMICALS ON THE MASK.

These can cause the mask to perish and cause damage affecting its use.

Your ventilator will have a green label on the side to say when its next service is due. Please inform the Home Ventilation Team when this date is approaching so that a replacement ventilator can be left for you to collect or be exchanged at your next clinic appointment with the specialist nurse.

Cleaning – wipe the outside of the machine with a damp cloth. Ensure the machine is unplugged from the mains electric prior to cleaning. Do not immerse the machine in liquid. Most machines have a simple dust filter covering the air inlet- these should be changed every 3 – 6 months depending on the environment the ventilator is used in. The filter will be checked when your machine is serviced, but if it looks especially dirty please contact the Home Ventilation Team for a replacement.

The ventilator requires mains electricity. Some models have an internal battery, to ensure this is fully charged the ventilator should be plugged into mains electric socket at all times. Ventilators with an internal battery are portable; please speak to one of the Home Ventilation Team regarding a portable manufacturer designed bag.

Clinic appointments

You will be sent clinic appointments with the Home Ventilation Nursing Team as required. Your clinical condition and response to treatment requires monitoring while you are using non-invasive ventilation. By consenting to start treatment you are also agreeing to attend these appointments. Failure to monitor effectiveness of treatment may be detrimental and affect your health.

During your appointment the nurse will check your ventilator settings and filters, if a service is due your ventilator will be exchanged. Please ensure you bring all your machines with you.  You may have a Capillary Blood Gas sample taken to check the effectiveness of your treatment and to identify if any adjustments to your ventilator settings are required. You may also be given an Oximeter (a device to monitor how much oxygen your blood is carrying) for overnight monitoring at home, the nurse will explain how to use this equipment; you will be asked to return this the next morning for the team to download the results.

This appointment is a good opportunity for you to ask any questions or raise concerns about your treatment with the nursing team caring for you.

If you are unable to attend your clinic appointments please contact the Home Ventilation Team as soon as possible so that we can rearrange this to a more convenient time.

Contact information and hours of service

The Home Ventilation Service operates from Monday to Friday 08.00am to 16.00pm (excluding Bank Holidays). Please be aware the Team may be on Home Visits or in Clinic so may not respond to your call immediately.

For advice or information regarding your Home Ventilation service contact us on

Tel: (01482) 624130 (24 hour answering machine)

email hyp-tr.huth.hmvs@nhs.net

If you require emergency advice out of working hours please contact the Respiratory Support Unit Hull Royal Infirmary (01482) 875875.