Information for Parents/Carers of Children at Home on Supplementary Oxygen

Transcription

1 Information for Parents/Carers of Children at Home on Supplementary Oxygen Signature of care givers Name (printed) Signature Designation Page 1 of 33 Supplementary Oxygen Care

2 The aim of this leaflet is to ensure that parents/carers will feel safe and confident in giving supplementary oxygen care to their child/young person. Before you take your child home the staff will: Give you appropriate information about your child s condition. You will be given a care plan to take home with you for the professionals involved in your child s care to record care given Ensure that you and anyone involved in caring for your child has adequate training in how to manage oxygen Page 2 of 33 Supplementary Oxygen Care

3 Introduction As a result of modern medicine, children with complex problems are now being routinely discharged home from hospital and cared for at home (Boosfield and O Toole 2000). Many of these children have respiratory problems, requiring long-term oxygen therapy (Table1 on page 5) and home oxygen has resulted in infants, children and young people being discharged home much earlier. Previously these infants, children and young people had to remain in hospital on neonatal and paediatric wards, which had major effects on social interaction and normal family life. Respiratory System The main function of the respiratory system is to provide the body with a supply of oxygen and excrete carbon dioxide. Oxygen is transferred to the blood from the air, carbon dioxide is removed from the blood to the air and the exchange of these gases is called respiration. Effective and efficient exchange depends upon all parts of the respiratory system and any chronic or acute disease of these parts may impair gas exchange. Figure 1. The Respiratory System In the upper airway, air enters the lungs through the nose and mouth, to reach the pharynx [back of the throat], passes through the larynx [voice box] and into the trachea [windpipe]. Air is warmed and humidified and large particles of dust are filtered out as it passes through the nose. Mucus that comes from the tissues that line the airways will become dry, hardened or thickened causing a blockage if it is not warmed and humidified. In the lower airways, the trachea divides into two main bronchi, and then subdivides into smaller bronchi. This division continues until bronchioles end in alveoli and this is where gas exchange takes place. The alveolus is only one cell in thickness and in contact with the blood, so oxygen can diffuse from the alveolus to the blood and carbon dioxide from the blood to the alveolus. Page 3 of 33 Supplementary Oxygen Care

4 The diaphragm and intercostal muscles are the main muscles used in breathing. When the diaphragm contracts it pulls down and air enters the lungs. The intercostal muscles are attached to the ribs and increase the capacity of the chest by pulling the ribs upwards and outwards. The heart pumps blood to the lungs and the body. If a child has heart problems, gas exchange may be inadequate and therefore supplemental oxygen may be required. Disorders affecting the Respiratory System Diseases may affect any part of the respiratory system, causing poor gas exchange and below are some common examples. 1. Disorders that affect the upper airways: Abnormalities of the larynx, trachea or bronchi e.g. stenosis [narrowing], blockage [tumour/ swelling] or abnormal floppy airways Structural abnormalities of the oral or nasal cavities e.g. cleft palate, coanal atresia [blocked nasal passages] 2. Disorders that affect the lower airways: Asthma Cystic fibrosis, which causes increased amount of thick mucus in the lungs and airways Swelling, scaring and other structural blockages 3. Disorders that affect the alveoli: Bronchopulmonary dysplasia Pneumonia Pulmonary toxicity from chemotherapy treatment 4. Disorders that affect the respiratory muscles: Degenerative muscle disorders e.g. muscular dystrophy Spinal cord injuries 5. Disorders that affect the stimulus to breathe: Brain damage from trauma e.g. drowning, suffocation, birth problems Certain neurological diseases Page 4 of 33 Supplementary Oxygen Care

5 Table 1 Principle Paediatric Conditions requiring Long Term Oxygen Therapy (LTOT) Chronic Neonatal Lung Disease (Bronchopulmonary Dysplasia) Other Neonatal Conditions (e.g. Pulmonary Hypoplasia) Congenital Heart Disease with Pulmonary Hypertension Pulmonary Hypertension secondary to pulmonary disease Interstitial Lung Disease Obliterative Bronchiolitis End Stage Cystic Fibrosis and other causes of severe bronchiectasis Obstructive sleep apnoea syndrome and other sleep related disorders Neuromuscular conditions requiring non-invasive ventilation Disorders of the chest wall (e.g. Thoracic dystrophy, severe kyphoscoliosis) Palliative Care for symptom relief Reference: Balfour-Lynn IM, Primhak RA, Shaw NJ (2005). Home oxygen for children: Who, how and when? Thorax: 60, Supplemental Oxygen Oxygen reduces the workload on the heart and relieves shortness of breath. When caring for a child requiring supplemental oxygen it is important to be aware of their underlying condition and the possible problems associated with the condition and their treatment. The carer requires a knowledge of all the equipment used, oxygen required [l/min], oxygen safety, infant/child/young people's baseline observations including colour, pulse and respiratory rate and what to do in an emergency situation is essential. The Importance of Oxygen Page 5 of 33 Supplementary Oxygen Care

6 Oxygen is vital for a number of reasons, including: 1. To prevent tissue damage, as prolonged low oxygen levels (hypoxia) can result in cell death, leading to brain or heart damage 2. The need to grow and develop 3. To encourage premature babies to grow new lung tissue Oxygen Equipment Air Liquide is the company providing oxygen in the North West area. Air Liquide have a variety of different oxygen equipment available, including: Oxygen concentrators Static and portable cylinders with integrated valves Liquid Oxygen Associated consumables (nasal specs / masks etc) AIR LIQUIDE Freephone Homecare Helpline Office Hours: Monday Friday am 5.30 pm Why provide oxygen at home? There are many conditions which require treatment with oxygen therapy. These include: Bronchopulmonary Dysplasia (BPD) in babies Chronic lung disease Severe chest infections Children with cancer Terminally ill children Previously this has required extended stay in hospital causing stress to your child and family. It is now widely accepted that oxygen therapy can be provided in the home environment for those children who have a long term need for oxygen. Administration of oxygen Administration of oxygen is a lifesaving intervention but it can often be difficult to do in infants, children and young people, as they do not tolerate oxygen equipment well. There are three main ways of administrating oxygen to children: 1. Via a face mask 2. Using nasal cannula 3. In a head box Face mask Unless the infant, child or young person is old enough to understand the need for oxygen, they will not tolerate a mask being held over their face. Careful explanation to the parents/carers/child or young person will help to maximise co-operation. Careful explanation of the equipment involved is also important to minimise anxiety by reducing the fear of the unknown. Page 6 of 33 Supplementary Oxygen Care

7 Nasal cannula The advantage of using the nasal cannula is that they are usually well tolerated by most children of all ages and carbon dioxide rebreathing does not occur. Humidification is also not necessary as the oxygen is entering via the nasal passages where it is warmed and moistened in the usual way. The disadvantages are that the child mouth breathes, the oxygen concentration is diluted and also high flow oxygen can cause some discomfort and dry the nasal mucosa. Headbox The advantages of this type of device is that they give effective oxygen delivery in a completely non-invasive way which minimises the infant, child or young person s anxiety and fear. It is important that the supply is warmed and humidified prior to administration. It is only suitable for the smaller baby, as it is not well tolerated in babies over the age of about one year old. Important point: Oxygen should be treated like a drug and a Doctor should always prescribe the delivery of oxygen therapy. In any infant, child or young person, the oxygen should be delivered at the lowest concentration level possible and for the shortest time possible. Oxygen saturation levels To prevent the long-term risks of hypoxia, it is suggested that the infant, child or young person s oxygen level may be better kept above 94% saturation, with a baseline of between 96-98% for as much time as possible. How is oxygen supplied at home? There are two ways of supplying the oxygen: 1. In the form of large cylinders which can take up a lot of room at home 2. The most commonly used method and most economical is the oxygen concentrator. This is an electrically operated device that draws in room air, separates the oxygen from the other gases in the air, and delivers the oxygen at high concentrations to the child Observations whilst using oxygen An infant, child or young person requiring oxygen should be monitored closely and carefully. The use of a pulse oximeter is of use, but the parent/carer should also observe for physical signs of deterioration in the infant, child or young person s condition. The signs to watch for are: Increased respiration rate Cyanosis Increase in respiratory effort Care of the infant, child or young person needing oxygen The infant, child or young person who goes home on oxygen is usually well who just requires a set prescribed amount of oxygen to maintain their oxygen levels at the optimum level. There are certain ways to ensure that they receive the best care to maintain a good standard of living. Page 7 of 33 Supplementary Oxygen Care

8 Children and young people with respiratory problems may benefit from being nursed upright, well supported with pillows Infants may benefit from being placed in a baby chair to expand their lungs properly Ensure that the nostrils remain free from dried mucus using warm water to clean them as required If the skin around the nose becomes sore, use a water based cream such as E45, avoiding a petroleum based cream which can react with the oxygen causing the soreness to increase Ensure that the cannula is well secured to the infant, child or young person s face so that they cannot pull it off Home Oxygen Paediatric User Guide You will received the Home Oxygen Paediatric User Guide when the Air Liquide engineer visits your home to install the equipment The oxygen company will: Install the oxygen equipment within three working days (next day delivery if a hospital discharge) of the order being placed Provide an emergency backup cylinder to your home (if using an oxygen concentrator) In the event of a concentrator machine breakdown they provide an emergency call out service and guarantee to be at your home within eight hours of the call out Reimburse your electricity costs (if using an oxygen concentrator) Inform the fire service that oxygen equipment has been installed at the infant, child or young person s address Provide nasal cannula, oxygen tubing, face mask, etc Provide a carry bag for portable oxygen cylinders You will be asked to sign a consent form (step 1) and then your Respiratory Team can complete a Home Oxygen Order Form (HOOF) (step 2). Air Liquide will contact you by phone to arrange installation (step 3). Step 1 Sign a consent form allowing your infant, child young person s information (name / DOB / address / diagnosis) to be shared with Air Liquide Step 2 Your Respiratory Team will complete the Home Oxygen Order Form (HOOF) and fax to Air Liquide. A copy will also be sent to your GP Step 3 Air Liquide will contact you by phone to install the appropriate oxygen equipment in your home. Page 8 of 33 Supplementary Oxygen Care

9 Oxygen Concentrators What is an oxygen concentrator? An oxygen concentrator is a machine operated by electricity, weighs approximately 25kg (55lb) and is 50-70cm ( inc) high. The machine draws air from the room atmosphere, separates the oxygen from the other gases in the air and delivers oxygen to your infant, child or young person. It is simple and easy to use. Oxygen concentrators are not generally used in schools because: 1. They are noisy, therefore can disturb children in a classroom setting 2. The concentrators are installed in one room, therefore there are problems concerning trailing oxygen tubing and health and safety issues to be considered 3. Children in school move around for different lessons and activities therefore concentrators are not practical and a portable oxygen delivery system is more suitable If a child has high oxygen requirements then a concentrator in school can be considered, however liquid oxygen (see page 15) may be more suitable. Air Liquide have this oxygen concentrator available: Airsep Newlife : Standard flow 1 5 l/min (max use 4l/min) Figure 2. Air Liquide oxygen concentrator The concentrator will be serviced by an Air Liquide engineer at three months and then every six months. Between these dates, parents are asked to clean and change the air filter on the machine (standard concentrator only). The filter should be washed weekly in warm water and allowed to completely dry before replacing in the machine. You will be given a spare filter and the engineer will explain what you need to do. Page 9 of 33 Supplementary Oxygen Care

10 Emergency backup service Air Liquide will provide an emergency backup oxygen cylinder with the concentrator. If there are any problems with the concentrator, parents/carers are asked to connect their infant, child or young person to the backup cylinder, setting it at the correct oxygen flow and telephone the company for advice. Some problems can be resolved with advice over the telephone; however the company do guarantee to visit if the problem persists and before the backup cylinder runs out. Further information for parents and carers 1. The concentrator can be slightly noisy 2. It can warm the surrounding room air 3. The concentrator will only work if there is an electricity supply. 4. Be prepared for any electricity cuts in your area. If there is an electricity cut, use the backup emergency oxygen cylinder or your child s portable oxygen cylinder 5. If your child is in school and the electricity supply is off for a long period, the school will contact you to collect your child/young person 6. The engineer will take a reading from the concentrator at each service to calculate the amount of hours / electricity used. Air Liquide will then refund the cost, usually by direct payment 7. Switch off the machine when not in use Static cylinders Air Liquide provide static cylinders for infant, child or young person requiring less than 1l/min of oxygen. These cylinders have integrated values to allow for a micro flow and low flow regulator to be fitted to given oxygen requirements between 0.01l/min 1l/min. M11HQ static cylinder HC10 static cylinder HC10H static cylinder Ambulatory (portable) oxygen cylinders What are portable oxygen cylinders? If your infant, child or young person requires oxygen at night and during the day, they will require portable oxygen cylinders so that they can go out. Air Liquide provide different portable oxygen cylinders and also provide a carry bag for these cylinders. Page 10 of 33 Supplementary Oxygen Care

11 Re-ordering Air Liquide oxygen cylinders The quantity of cylinders required each week will depend on the oxygen flow and amount of time (hours) that the infant, child or young person is away from their home. It is important that the infant, child or young person has enough cylinders each week so that they can participate in normal activities, including attending school. Parents/carers need to ring Air Liquide on to order more portable cylinders Air Liquide will organise delivery of these cylinders within the standard delivery time of three working days. Air Liquide will collect the empty cylinders when delivering a new order Parents/carers will need to ensure that they do not run out of cylinders. They need to constantly check their supplies ensuring they ring before they run out of cylinders Spare cylinders can be ordered for school, using a secondary address. If the cylinder is used, it is the responsibility of the school to have the cylinder replenished Leaks Any leakage of oxygen from a cylinder will be evident by a hissing noise. Slight leaks may not always be obvious, therefore regular checks of the contents gauge will need to be made Leaks most commonly occur at points where attachments are connected to the cylinder Never use any kind of sealing compound or sticky tape to fix a suspected leak. Never attempt to repair a cylinder In the event of a leak, do not use the cylinder. Transfer the cylinder to a safe wellventilated area, generally outside and open the valve to empty the cylinder. Telephone Air Liquide to collect the cylinder, ensuring that they know the cylinder is faulty Use the spare oxygen cylinder. Ensure that your infant, child or young person continues to receive supplemental oxygen. Make arrangements for the spare cylinder to be replaced Page 11 of 33 Supplementary Oxygen Care

12 Static Cylinders Page 12 of 33 Supplementary Oxygen Care

13 Portable Cylinders Page 13 of 33 Supplementary Oxygen Care

14 Mirco Flow / Low Flow regulators Page 14 of 33 Supplementary Oxygen Care

15 Procedure in the event of fire In the event of a fire it is stressed that the safety of all people MUST be the first priority. Do not take any undue risks. In the event of fire, the safety of everyone must be the first priority As soon as a fire is discovered, dial 999 asking for the Fire Service and evacuate the building Ensure to warn the fire services of the presence of compressed gas cylinders or liquid oxygen Cylinders involved in a fire may burst due to excessive heat and therefore the immediate area must be evacuated. Do not attempt to fight a fire in which oxygen cylinders are directly involved Liquid Oxygen Used when patients are on high flow oxygen and require cylinders to last longer. There is a base unit which holds up to 6 litres of liquid oxygen at a temperature of -183 o C and then the portable unit it is refilled from the base unit. Liquid oxygen consists of a large container or dewar (figure 6, page 16) containing liquid oxygen, which is installed in the infant, child or young people s home and a smaller portable unit (figure 6, page 16), which is used to go out. The portable liquid oxygen unit is designed to provide oxygen for extended periods away from the home. Parents/carers decant oxygen from the larger container to the portable unit. The portable unit has a higher oxygen capacity than the portable oxygen cylinders, therefore will last longer for infants, children or young people on higher oxygen requirements. Note: All durations listed are appropriate and times will vary according to usage and atmospheric conditions, such as temperature and storage of both the base unit ant portable unit. It is important to note that once the portable unit is filled, it MUST be allowed to stand for minutes prior to use, this allows the unit to warm up to room temperature and helps to convert the liquid oxygen into a gaseous form. Figure 6. Liquid oxygen container (dewar) Liquid oxygen portable unit Page 15 of 33 Supplementary Oxygen Care

16 Liquid oxygen is suitable for infants, children or young people requiring high oxygen and who are away from the home for long periods and therefore extremely useful when children attend school. Important safety instructions: Always keep the portable unit upright Never cover the portable unit or carry under clothing Always keep the portable unit in a well ventilated area For further information refer to Air Liquide Your guide to using liquid oxygen. Associated consumables- Including nasal cannula, face masks, tubing, etc. Nasal Cannula / Specs What are Nasal Cannula/ Specs? Nasal cannula are used to deliver a low to moderate concentration of oxygen and are easily applied as long as your infant, child or young person s nasal passages are open. Eating, talking and coughing are all possible. As long as the tubes remain clear and unblocked, it is advised to change the nasal cannula every seven days. The small tubes should be soft and pliable and to avoid soreness around the nose. They should be inspected each time you attend your infant, child or young person. If they do become blocked with mucus, hard or discoloured they should be discarded and a new set used. The use of petroleum based creams (e.g. Vaseline) around the nose should be avoided, as these react with oxygen and may cause soreness. Water based creams such as KY Jelly can be used if required. Nasal cannula are not available on prescription but are supplied by Air Liquide (the oxygen company). When the oxygen equipment is installed the company will leave enough nasal cannula with you until the engineer visits again. If you run out of nasal cannula telephone Air Liquide on the customer service helpline to order more and they will send them to you by post. There are six different sizes of nasal cannula: 1. Premature (Ref: 1610) 2. Neonatal (Ref: 1611) 3. Infant (Ref:1601) 4. Intermediate Infant (Ref: 1615) 5. Paediatric (Ref: 1602) 6. Adult (Ref: 1600) Reference numbers are for you to use when ordering further nasal cannula from the company after discussion with your team. Page 16 of 33 Supplementary Oxygen Care

17 Securing the nasal cannula The nasal cannula will need securing onto your infant, child or young person s face to ensure that the tubing does not become dislodged. A dressing is applied directly to the skin under the nasal cannula tubing to provide some cushioning and must be renewed weekly at the same time that the nasal cannula is changed. The nasal cannula is then correctly positioned on the infant, child or young person's face with the prongs into each nostril and secured with the preferred dressing. The lower dressing is left in place and the top dressing can then be changed as frequently as required without pulling the tape directly off your child's skin (Figure 3, below). If your infant, child or young person has sensitive skin there are alternative tapes that can be used. Tendergrips are small round stickers, which can be used if your infant, child or young person has very sensitive skin, eczema or any allergic reactions to the other tapes (Figure 4, page 18). These are not available on prescription or from a chemist. Contact Air Liquide for the Tendergrips. Figure 3. Duoderm and Blenderm (clear tape) or Duoderm and Mefix (white gauze tape) available from your GP on prescription. Figure 4. Tendergrip stickers Available from Oxygen Nurse Specialise or Air Liquide Page 17 of 33 Supplementary Oxygen Care

18 Safety Ensure the nasal cannula is well secured to your infant, child or young person s face, especially at night when you will be asleep If your infant, child or young person starts to pull the nasal cannula off, then ensure the tapes are secured nearer to their nose (so that there isn t a gap between their nose and the tapes), rather than on the middle of their cheeks or near their ears. Put mittens on your infant, child or young person at night As your infant, child or young person gets older they become more active. At night they may wriggle more, therefore the oxygen tubing needs to be checked to ensure that it doesn t become wrapped round them. To help prevent this problem thread the tubing down through their babygro or pyjamas at the side, so that the tubing is positioned against them, and the tubing comes out by their feet Overnight saturation studies can be performed at home to assess your infant, child or young person s oxygen requirement. When performing these studies at home, the probe is generally applied to your infant, child or young person s foot or toe. The probe will therefore come out at the bottom of their crib or cot and connect to the monitor Oxygen is a colourless and odourless gas, which is slightly heavier than air. The presence of oxygen within a building can increase the risk of fire. Oxygen is not flammable but it supports and accelerates combustion and cause substances to ignite more easily and burn more fiercely. Here are a few simple precautions that are needed when using oxygen at home. DO NOT SMOKE NEAR ANY OXYGEN EQUIPMENT. THIS INCLUDES THE USE OF E- CIGARETTES. E-CIGARETTES ARE NOT TO BE CHARGED ANYWHERE IN THE VICINITY OF OXYGEN EQUIPMENT. DO NOT use the equipment near a fire or naked flames DO NOT use grease or oil to lubricate or come into contact with the oxygen cylinders, liquid oxygen, valves or fittings DO NOT handle equipment with greasy hands DO NOT store oxygen cylinders in the same place as paint, petrol, and paraffin, heating gas or other flammable materials DO NOT let children play or untrained persons tamper with the oxygen equipment DO NOT hang clothes over the concentrator or oxygen cylinders DO NOT let a concentration of oxygen build up in a confined space (e.g. by leaving concentrator on when not required) DO NOT use petroleum based creams (e.g. Vaseline) around the nose, as oil based products may react with the oxygen and can cause soreness. Water based creams can be used if required Page 18 of 33 Supplementary Oxygen Care

19 DO contact the local fire department requesting free fire safety advice and smoke alarms. Visit for safety information. (Air Liquide automatically inform the fire service that oxygen has been installed) DO have a full understanding in the use of all the equipment before taking your infant, child or young person home DO know who to contact if the equipment is faulty DO return defective equipment for replacement DO be careful that the oxygen tubing does not become kinked, blocked, disconnected or punctured DO check oxygen cylinders are stored securely where they cannot fall or be knocked over DO store oxygen cylinders away from heaters, radiators and hot sun. DO ensure a spare cylinder is available for emergency use DO keep oxygen supplies at the lowest possible level required School safety reminder In school be aware of using paints, massage oils, aromatherapy oils, candles and during cookery lessons (if using gas cookers). Page 19 of 33 Supplementary Oxygen Care

20 What to do if the infant, child or young person has breathing problems If the infant, child or young person is: chesty wheezy coughing more than usual has a temperature Advised that the child may need a GP appointment for review Do they have any of the following? going blue e.g., looking blue around their lips, nails or ear lobes short of breath or breathing a lot quicker than normal looking unusually pale tugging when breathing - pulling in the muscles around their chest or neck sweaty and clammy a fast pounding pulse rate reduced consciousness or unusually agitated (in older children) confused and / or complaining of dizziness or headaches NO YES Stay calm and reassure the infant, child or young person Check the infant, child or young person s airway Make sure their nose and mouth or tracheostomy is not obstructed with mucus Is the oxygen equipment working correctly? Check: is the oxygen supply working e.g. Is there sufficient oxygen left in the cylinder is the oxygen tubing correctly connected is the oxygen flow set at the correct flow rate is the tubing mucus free and not kinked YES NO If there are any problems with the oxygen equipment then connect the backup supply and contact the child s parents. Check their breathing returns to normal Is there still a problem with their breathing? Emergency procedure Call 999 for immediate help and advice. Increase the oxygen flow to the infant, child or young person, as per care plan. If your child has stopped breathing, start resuscitation procedure, if you are trained to do so whilst waiting for the emergency services to arrive. Stay with your child and await the help of the emergency services Page 20 of 33 Supplementary Oxygen Care

21 Insurance Companies / Fire Service / Electricity Company House Insurance Inform your house building / contents insurance company that oxygen equipment has been installed in your home. The insurance company will make a record of this information on your insurance policy. Most companies will accept this information verbally by phone, however some companies may ask you put the information in writing. If a letter is requested then contact your Children and Young People s Home Care Team (C&YPHCT) Nurse for a letter and keep a copy of the letter with your insurance policy. Most companies will not alter the insurance premium, however if a family do not inform the company it could jeopardise any claims that they make. Car Insurance You are advised to tell your car insurance company that you will be carrying portable oxygen equipment in your vehicle. The insurance company will make a record of this information on your insurance policy. Generally most companies accept this information verbally by phone, however some companies may request that the family inform them in writing. If evidence is requested then contact your C&YPHCT Nurse for a letter and keep a copy with your insurance policy. Most companies will not alter the insurance premium, however if a family do not inform the company it could jeopardise any claims that they make. Secure cylinder in vehicle You MUST ensure that the oxygen cylinder is secured during all journeys either in the boot of the car or behind the front seat with a secure fastening. You may need to purchase elastic luggage straps to secure the cylinder safely. Travelling on Public Transport You may need to ring your local public transport company to enquire if you can travel on their service with an oxygen supply. Some companies may need you to carry a supporting letter. Fire service Air Liquide will automatically inform the local fire services and the fire department will record this information in case of any emergency calls. You are also advised to inform the fire services that oxygen equipment has been installed in your home and request a Home Risk assessment. Cheshire Fire Services will visit your home, check the property, install smoke alarms and give fire safety advice free of charge. Page 21 of 33 Supplementary Oxygen Care

22 Electricity Electricity costs If you are using an oxygen concentrator, Air Liquide will reimburse the electricity costs at the standard rate of electricity. The refund will preferably be a direct payment to your bank account or electricity company, therefore Air Liquide will need the details of your electricity company or your bank details. Electricity Supplier You are also advised to inform your electricity supplier that your infant, child or young person needs oxygen and that the oxygen machine requires electricity to work. If there is a problem with the electricity supply you will need to be a priority for reconnection. Moving House If you are moving house, a new Home Oxygen Order Form (HOOF) will need to be completed with your new address details. Contact the Children s and Young People s Home Care Team informing them of your new address. You will not be able to order any oxygen supplies at the new address if a HOOF has not been completed. Page 22 of 33 Supplementary Oxygen Care

23 Procedure for Administration of Lowflow Oxygen Therapy via Nasal Cannula Aim: To safely administer oxygen and understand how to monitor the infant, child or young person to maintain their respiratory function. Equipment: Supply of oxygen Suction machine if required. Supply of oxygen tubing and nasal cannula. Access to telephone. It is very important that each infant, child or young person has their own care plan and is only given the prescribed amount of oxygen. If there are any changes in the infant, child or young person s colour, breathing rate or delivery of the oxygen PHONE EMERGENCY HELP MUST BE OBTAINED. ACTION 1 Store oxygen as instructed by the manufacturer. 2 Ensure that the appropriate size nasal cannula are correctly placed in the child s nostril and secured in place with non-allergic dressings. 3 Connect tubing to the cylinder or oxygen concentrator. 4 Follow the prescription and the preset levels (usually set by the company) to maintain correct oxygen flow. 5 Monitor your child for breathing rate and breathing effort, skin colour and pulse. If any of these are not normal for your child seek medical help immediately. 6 Observe your child for appearance of oral/nasal secretions and if necessary maintain a clear airway by performing suction (procedure available). 7 If there is a problem with the electricity supply when using the oxygen concentrator transfer the tubing to the cylinder. 8 Inspect nasal cannula regularly; the small tubes should be soft and pliable. If they are hard or discoloured replace with new set. If your child has a cold check that the cannula is not blocked with mucus. 9 If cream is required on the face use a water based cream such as E45, not RATIONALE To maintain health and safety and prevent risk of fire. Appropriate size nasal cannula will be more effective and comfortable. To prevent trauma to skin. To ensure connections are secure. To ensure correct flow of oxygen is delivered. To recognise problems quickly and obtain help. A clear airway facilitates a more effective oxygen delivery. To ensure your child continues to receive their oxygen supply. To avoid soreness around the nose. Petroleum based creams may react with the oxygen and cause soreness. Page 23 of 33 Supplementary Oxygen Care

24 ACTION Vaseline. 10 If your child becomes unwell or there are any sudden changes in their breathing or colour PHONE 999 EMERGENCY HELP MUST BE OBTAINED. RATIONALE To obtain immediate medical help if any problems. Page 24 of 33 Supplementary Oxygen Care

25 Oxygen Saturation Monitoring - Guidelines for parents/carers Pulse oximeter AIM: To monitor oxygen saturation levels to assist in the assessment of your infant, child or young person, and to be able to act on the results. EQUIPMENT: Oxygen saturation monitor Correct size sensor (or probe) Tape Alcohol swab REMEMBER: The main reason for monitoring is to detect any changes, before clinical signs become evident. Therefore if the machine alarms or records an abnormal saturation, first look at the infant, child or young person to see if they are well, then check that the machine is recording properly and that the sensor is in place. CAUTION: If the circulation to their hands or feet is reduced (due to cold or shock) the readings may be inaccurate. ACTION RATIONALE 1 Plug monitor into mains electric To provide uninterrupted power. supply. 2 Connect probe cable to monitor. Clean surface of the probe with 70% To ensure probe is clean to detect the light. isopropyl alcohol (Sani cloth), insert the probe through the slots on the adhesive wrap, or apply finger clip. 3 Press and hold power switch on. A diagnostic check will be visible on the screen. To check the machine is working correctly. 4 Check that alarm levels are set. During routine monitoring to enable your child to sleep without unnecessary disturbance the alarm limits are set at limits which are unlikely to be reached. If it is necessary to have different alarms to those on the monitor, the nurse will customise the alarms before monitoring begins 5 Explain the procedure to your child and select a warm, pink finger or toe. Place the probe on the child s toe or finger. If your child is on oxygen the limits will need to be set for your child. To reduce anxiety and select the best site for a good reading. To ensure that the sensor will detect a good light source to provide an accurate reading. The light source should shine through Page 25 of 33 Supplementary Oxygen Care

26 ACTION the skin from the top of the warm finger or toenail. Make sure the detector is directly opposite the light source. Wrap the adhesive strap around the site and fasten carefully. If used overnight check the site regularly, and move sensor 4 hourly during the night. If necessary tape the cable approximately 10-15cm away from the probe onto the arm or leg. Make sure the excess cable is away from the child s head and neck. 6 Observe monitor Perfusion index is displayed on the monitor and should be over 1. The nurse will discuss this with carers when the monitor is loaned 7 Keep your child as still as possible with distraction therapy. Sometimes it is best to put the probe on after your child has gone to sleep. 8 Alarms: The monitor will alarm if the probe is off your child this can be silenced for 120 seconds by pressing the alarm button. 9 Overnight monitoring requires an average of 8 hours. When monitoring is complete remove the probe and turn off machine, by pressing the on off switch and holding for 2 seconds. RATIONALE To avoid restricting the circulation and causing damage to the underlying skin. To prevent entanglement of the lead and possible injury to your child. To ensure that the sensor is picking up a good signal. The monitor cannot record accurately if there is excessive movement. Alarms will alert parents/carers to the possibility of abnormal oxygen levels or pulse rates. To give a good representation of your child s breathing pattern and oxygen saturation. Holidays Page 26 of 33 Supplementary Oxygen Care

27 Holidays in England and Wales If you are planning a holiday either to visit friends and relatives for a family holiday Air Liquide provide a free holiday oxygen service in England and Wales. If you are going outside the Air Liquide contracted area, then Air Liquide will contact the specific oxygen company for that area and oxygen can still be supplied. Be aware that if you are supplied by another oxygen company then the equipment may vary slightly. What you need to do: You can contact Air Liquide directly to discuss your holiday arrangements Ensure you give plenty of notice (preferably four weeks) You will need to provide details of the holiday address including postcode, holiday dates, accommodation, contact name and telephone number Air Liquide will contact you to confirm arrangements If you are staying in a hotel, guesthouse or caravan you need to inform the owners of the holiday accommodation at your destination that your infant, child or young person is oxygen dependent (for insurance purposes) and tell them that oxygen equipment will be used Holidays Abroad Air Liquide provide a holiday information service for advice if traveling abroad however there is a cost for oxygen provision abroad. For further advice on travelling and to receive the Air Liquide Travel Holiday Guide, contact: Air Liquide: Monday Friday 08.30am 5.30pm More information is available from the: Department of Health travel advice on or If traveling in EEA, please contact Department of Health on British Lung Foundation on or Ask for a copy of their booklet Going on Holiday with a Lung Condition Stopping supplemental oxygen Weaning your infant, child or young person off supplemental oxygen is a gradual process, which may be achieved over several months (occasionally it can take longer). Following discharge from hospital your infant, child or young person will initially be reviewed at home by the Children s and Young People s Home Care Team. They will be seen by their local Consultant between 0 8 weeks after discharge at Leighton Hospital. After four weeks following discharge, the process of weaning an infant, child or young person off oxygen may be considered. Assessment at each review is essential to ensure that the infant, child or young person is well with no respiratory concerns. They must be gaining weight, and be clinically well before stopping oxygen is considered. Their oxygen saturation levels are monitored, ideally when they are is awake, asleep and feeding, although this is not always possible. Page 27 of 33 Supplementary Oxygen Care

28 When the infant, child or young person is being weaned off their oxygen, you will be given instructions about what to do and advise if you have any concerns. When the infant, child or young person has been off oxygen for 12 hours a day for a month, an overnight saturation study in air will be performed. This study can be performed at home whilst they are asleep. The information from the monitor is downloaded onto a computer. If your infant, child or young person s overnight saturations in air are within the normal reference range, then the oxygen will be discontinued. Allowances Disability Living Allowance (DLA) If an infant, child or young person is oxygen dependent, the family can claim for Disability Living Allowance (DLA). The Child Disability Living Allowance forms can be obtained from: Contact DLA office on TEL: Scroll down to either: Download a claim form to print at home (Disability Living Allowance form for people under the age of 16 PDF document 259KB). or Download a claim form to complete on your computer DLA is awarded at different levels depending on the infant, child or young person s illness and needs. If your child is over three years old, the DLA will combine both a carers and a mobility component. Carers Component There are 3 different levels of carer s component: Low/Middle/High. Mobility Component There are 2 levels of mobility component: High level / Low level. If an infant, child or young person has previously been awarded DLA, the claim will be reviewed on a regular basis. If a family has any queries regarding DLA reviews, the office can be contacted on Tel no: giving them the infant, child or young person s name and DLA claim reference number. Page 28 of 33 Supplementary Oxygen Care

29 The Blue Badge Scheme provides a range of parking concessions for people with severe mobility problems who have difficulty using public transport. This enables badge holders to park close to where they need to go. A parent of an infant who is less than two years old may apply for a badge if their infant has a specific medical condition which means that they: a) must always be accompanied by bulky medical equipment which cannot be carried around without great difficultly; and / or b) need to be kept near a vehicle at all times, so that they can, if necessary, be treated in the vehicle, or quickly driven to a place where they can be treated; such as a hospital Carers Allowance (CA) Carers Allowance is a social security benefit to help people look after someone who gets: a) Attendance Allowance b) Constant Attendance Allowance at not less than the full day rate c) Disability Living Allowance at the middle or highest rate for help with personal care. Invalid Care Allowance is paid to the person who does the caring not the person being cared for. For further information or an application forms contact: Carer's Allowance Unit Palatine House Lancaster Road Preston PR1 1HB Tel: Page 29 of 33 Supplementary Oxygen Care

30 Things To Do List You will be seen by the Children s and Young People s Home Care Team. She will arrange for the Home Oxygen Order Form to be completed and oxygen equipment to be organised for your home. Once you have been seen and the procedure explained, then the Nurse will complete the following checklist. What to do Sign consent form, so that your Nurse can complete the Home Oxygen Order Form (HOOF) and fax your infant, child or young person s details to Air Liquide, CCG and GP. Inform your house insurance company that oxygen has been installed at your property. If you rent the property, inform the landlord. Inform your car insurance company (If your child requires continuous oxygen and you intend carrying a portable oxygen cylinder in the vehicle). Ensure portable oxygen cylinders are secured in your vehicle. Cheshire Fire service will provide free smoke alarms and safety advice. Ring Freephone no: and ask for a Home Risk Assessment. If using an oxygen concentrator, inform the electricity board ensuring you are priority for reconnecting, in case of any electricity cuts. If you are on metered electricity ensure you always have enough top up on your card to cover the electricity costs. In case of a power cut always have a torch handy. Ensure you are aware of how to use the backup oxygen cylinders and have a contingency plan in case of a prolonged power cut. Contact the DLA for Child Disability Living Allowance form and this will be sent or apply online Resuscitation training has been completed. Before your infant, child or young person is discharged, check that the: Oxygen equipment has been installed. Portable cylinders have been delivered. You will need to bring a portable cylinder into the hospital, so that your infant, child or young person can be discharged home on the oxygen. You are shown how to secure the nasal cannula. You are given a supply of dressings to secure the nasal cannula. A follow up clinic appointment has been arranged with your Consultant. Tick Page 30 of 33 Supplementary Oxygen Care

31 Glossary of Terms You May Encounter AF Cylinder Apnoea monitor CPR Cylinder valves Discharge planning Flow meter Humidifier Hypoxia Liquid oxygen Low flow gauge cylinder head Management plan Nasal cannula Named nurse Oxygen saturation Oxygen supplier Oxygen tubing Parameter PD cylinder Portable cylinder Respiratory pattern TREM Card Valve outlet Large size of oxygen cylinder (1360 litre capacity) A device that monitors breathing and sounds an alarm if no breathing is detected for more than a pre-set time Cardio-pulmonary resuscitation Oxygen on/off tap Discussion and action about going home from hospital Controls rate of oxygen coming out of cylinder Device to add moisture Abnormally low oxygen in the blood Oxygen gas compressed to a liquid Supplies oxygen at a very slow rate A plan of care for the infant, child or young person s care at home Tubes to deliver oxygen via nose Nurse responsible for child s care Percentage of oxygen in the blood Company which produces oxygen Plastic tubing delivering oxygen between delivery system and mask/nasal cannulas An upper and lower limit A small size oxygen cylinder A small size oxygen cylinder that is easier to transport than a regular cylinder Breathing characteristics Transport Emergency Card (Road). Sign displayed in vehicle to highlight carrying of oxygen with advice on what to do in an emergency situation Part of oxygen cylinder head (top) Valve seat Part of oxygen cylinder head (top) Page 31 of 33 Supplementary Oxygen Care

32 Valve spindle Part of oxygen cylinder head (top) Useful contact details Children & Young People s Home Care Team Leighton Hospital Crewe CW1 4QJ Telephone Air Liquide Home Care Alpha House, Wassage Way, Hampton Lovett, Droitwich, WR9 0NX Freephone: Air Liquide can provide oxygen information in other languages and formats if requested British Lung Foundation Goswell Road, London EC1V 7ER Tel: Fax: enquiries@blf-uk.org Internet: Family Fund PO Box 50,York, YO1 9ZX Tel: info@familyfund.org.uk Internet: This information pack only gives general information. You must always discuss the individual treatment of the infant, child or young person with the appropriate member of staff. Do not rely on this information pack alone about the infant, child or young person s treatment. This information can be made available in other languages and formats if requested. Page 32 of 33 Supplementary Oxygen Care

33 Certificate of Instruction Child & Adolescent Unit Children & Young Peoples Home Care Team Patient s name DoB.. I agree that I have received written guidelines and been instructed how to:... and now feel confident and competent to carry out this procedure/treatment. I understand what problems may arise and what to do if they occur. Parent / legal guardian / patient s signature: (print & sign).. Date Signature of registered nurse assessing competency: (print & sign).. Date Date for review Review Date Parent / legal guardian Nurse assessor This information is available in audio, Braille, large print and other languages. To request a copy, please telephone Printed October 2018 Review October 2020 Ref: WC/CYPHCT/ Page 33 of 33 Supplementary Oxygen Care