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Patient Information Non-invasive Ventilation (NIV) Author: Pulmonary Physiology & Sleep Medicine Produced and designed by the Communications Team Issue date Oct 2015 - Review date Oct 2018 - Expiry date Oct 2019 Version 1 Ref no. PILCOM1751 What is Non-invasive Ventilation (NIV)? Non-invasive ventilation (NIV) is a treatment to help with your breathing. If your breathing becomes difficult and your muscles tire, it can lead to a build-up of carbon dioxide in your blood. In addition you may not have enough oxygen in your blood. NIV is used to support breathing in exacerbations of chronic obstructive pulmonary disease (COPD or emphysema), in infections e.g. pneumonia, respiratory failure, muscle weakness, motor neurone disease, chest wall disorders and sometimes if breathing is limited by obesity. NIV must be worn every night during sleep. It provides support for the lungs through a tight mask fitted carefully over the nose and/or mouth. This is attached with a tube to the ventilator (breathing machine) which gently blows air into the lungs to help you breathe in and out easier by supporting the muscles which make your lungs work. It doesn’t breathe for you, but gently assists each breath that you take. By assisting your breathing, NIV can increase the oxygen levels and decrease the carbon dioxide levels in your blood. The mask can sometimes be uncomfortable. The clinical staff (nurse/ physiologist) will spend some time with you as you get used to the sensation of the mask and air blowing on to your face. Most people need to use the breathing machine throughout the night and some people constantly for the first 24 hours, with breaks for eating/drinking and medications. Your timing will be explained to you when you are set up. You will have been issued the following: Machine (with power lead) Filter Hose Mask (with headset) Carrying bag You will be shown how to set up and use the equipment. The mask provided has been specifically selected to fit your face and the machine has been set for your breathing. The physiologist or nurse will set up the machine and make sure that it is as comfortable for you as possible. They will also explain to you when you will need to use the machine. 2 Benefits of Non-invasive ventilation (NIV)? NIV can improve sleep quality leading to better energy and concentration levels during the day. It can also help you feel less breathless. This may mean you may be able to perform more daily tasks. You may also feel brighter on waking and headache free if this was a problem previously. It can also decrease the likelihood of being re-admitted to hospital. Are there any side effects or risks to the treatment? NIV can feel a bit strange to start with. However, most people get used to it fairly quickly. As with any treatment, side effects can occur. However, the side effects associated with NIV are rarely severe and easily resolved. Common mask problems include: Mask seal problems – a small leak from the bottom of the mask is common and will not affect the performance of the NIV device. However, a large leak or a leak into the eyes can be problematic. You can try tightening the headgear straps slightly, but this can cause further problems. Please contact us on 01268 394033 so that the mask can be adjusted. It can sometimes take a number of attempts to find the most comfortable and effective mask. Soreness on the nasal bridge - soreness on the bridge of the nose is an indication the mask is too tight at the top or a poor fit. The mask will either need refitting or replacing as the soreness can become worse over time. Contact the service immediately for advice – do not wait until your next appointment. Throat dryness - a dry mouth is very common when using NIV, particularly with a mask that covers the mouth. Usually, a glass of water by the bed is enough to resolve this but in severe cases, humidification devices are available. Nasal problems - it is common to suffer from nasal stuffiness, sneezing and a running nose when you first start treatment. This should settle on its own. If it doesn’t settle after a week contact your GP and ask for a prescription for a nasal spray such as Flixonase, Beconase, or Nasonex. 3 Are there any alternatives to NIV? There are no similar non-invasive alternatives to NIV treatment. It is unlikely that the oxygen and carbon dioxide levels in your blood will return to normal quickly without any form of treatment. Frequently asked questions Can I survive a night without my ventilator? Most patients can spend one or two nights off their machine; however, symptoms of tiredness and headaches may reappear. Rarely, however, this can be dangerous in some patients. You will be given specific advice when NIV is started. Does my ventilator need a service? Your ventilator and consumables will be checked every 6 - 12 months at the same time that we see you to assess your treatment. The tubing, mask and filters will be checked or changed and if there is a performance problem we may swap your machine for another. During your annual visits your machine will get serviced by the Medical Engineers. So please ALWAYS bring your machine to these appointments to ensure checks and adjustments can be made if necessary. My ventilator doesn’t feel comfortable or gives me a breath at the wrong time. Is this OK? If your machine doesn’t feel right you should get in touch with us the next working day and bring your machine and consumables with you to service at an agreed time. For routine problems on weekdays (9am5pm) please contact us on 01268 394033. Out of hours you can leave a message with your details and we will get back to you as soon as we can. For urgent problems out of hours, weekends or bank holidays please contact Florence Nightingale Ward on 01268 394618. Do I need to bring my ventilator in the ambulance if I am admitted to hospital? Yes. You must insist that your NIV machine, mask and tubing comes with you if you come to hospital. This is very important. You may need it as the ventilators used on the wards are different to yours and may not feel comfortable. More importantly they might not give you effective ventilation. 4 Should I use my ventilator in the daytime? If you want to have a nap in the day or have a chest infection, it may be good to use your ventilator during the day as well as at night. You won’t become dependent on it – but you will benefit from wearing it. Is there anyone I can contact out of hours if there’s a problem with my ventilator or breathing? If you feel your breathing is getting worse, or you feel unwell, call your GP for medical advice. If your machine malfunctions and you can manage a few nights without it, contact us on the next working day. Can I use oxygen whilst on my ventilator? It is important that oxygen is used with the machine if prescribed. You will be advised on the correct oxygen level when NIV is started or altered in hospital. Why does the machine keep alarming? Usually this is because there is too much air leaking from the sides of your mask. It is nothing for you to worry about and the staff will try to address the problem to ensure the alarms are checked and rectified. I have dropped my ventilator, what should I do? If you drop your ventilator, even if you think that it is working effectively please contact us as soon as possible on 01268 394033. Our maintenance department will need to check its function and electrical safety as soon as possible. What should I do if I begin to feel more tired and sleep during the day or if I am waking up with a headache? If you are waking with a headache or feeling sleepy during the day, this could be the first sign that the ventilator is not supporting your breathing effectively. Please contact us as it could be that the pressure of the machine needs adjusting slightly or there could be a leak in the mask. The physiologist/nurse will be able to answer any questions you have and if a sleep study and a blood test is needed, this can be arranged. If your breathing is getting worse or you feel extremely unwell, please contact your GP or, if necessary, call 999. 5 If there is a power cut what should I do? Firstly don’t worry. Unless you are very reliant on the ventilator, you will not suffer any long term harm if you are unable to use your ventilator for a few hours or for a night. Speak to the company who supplies your electricity to notify them you have a power cut. If you are unable to use your ventilator overnight this a could cause some daytime sleepiness. If you are affected by tiredness or sleepiness the next day, please refrain from driving/operating machinery. I am going on holiday should I take my ventilator with me? Whenever you travel or plan to stay away from home overnight, you should take your ventilator with you. Most machines can be used abroad by using a plug adaptor. If you are flying please ensure that your ventilator is taken onto the aircraft as hand luggage to ensure it is not damaged or lost. Before flying, if you are unsure about travelling please contact us for advice as occasionally patients who use ventilators need to use oxygen on board the aircraft and a fitness to fly test is essential. Cleaning your machine and mask Machine Disconnect from power supply before cleaning. Do not immerse the machine in water. Do not use any cleaning agents on the device. Wipe the machine with a clean, damp cloth and then dry with a soft cloth. Wait until the machine is completely dry before reconnecting the power supply. Daily It is important to wipe the mask every day with a damp cloth or an antiseptic wipe. Ensure the wipes do not contain alcohol or Lanolin, as these substances can damage the silicone of the mask. The more you look after your mask the longer it will last. 6 Weekly Mask - in addition to the daily wipe, the masks will need a good clean every week. To do this, start in the morning, separate mask from all attachments and wash it gently in warm, soapy water (mild detergent e.g. washing up liquid). Rinse with clean, warm water and paper towel dry before allowing to air dry prior to using it again. Do not dry near a source of direct heat. Before you remove the headgear when cleaning, it is a good idea to mark a line on the headgear straps with a permanent marker, so you know where to re attach them after cleaning. Tube - the same procedure can be used to clean the tube. Shake off all excess water after rinsing and hang the tubing vertically to allow the water to drain and dry completely. IMPORTANT: Masks and tubing must be dried fully before use. Contact details For enquiries regarding clinic appointments, clinical care and treatment please contact: Pulmonary Physiology & Sleep Medicine Department (9am – 5pm, Monday – Friday) Tel: 01268 394033 Florence Nightingale Ward (weekends and bank holidays) Tel: 01268 394618 Further information If you have any questions about non-invasive ventilation, please do not hesitate to ask any of the people (nurse, doctor or physiologist) involved in your care. They will be happy to help you. 7 Not to be photocopied Useful sources British Thoracic Society www.brit-thoracic.org.uk/ British Lung Foundation www.lunguk.org Patient UK www.patient.co.uk Neuromuscular Disease Foundation www.ndf-hibm.org Motor Neurone Disease Association www.mndassociation.org Basildon University Hospital Nethermayne Basildon Essex SS16 5NL 01268 524900 Minicom 01268 593190 Patient Advice and Liaison Service (PALS) 01268 394440 E [email protected] W www.basildonandthurrock.nhs.uk The Trust will not tolerate aggression, intimidation or violence directed towards its staff. This is a smokefree Trust. Smoking is not allowed in any of our hospital buildings or grounds. This information can be provided in a different language or format (for example, large print or audio version) on request.