Introduction. Verified by Dr Aaron Bell October 2013

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1 Travel and Trips

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3 Contents Introduction Page 4-5 Initial considerations Pages 6-7 Support whilst travelling Pages 8-9 Travel insurance Pages Healthcare abroad Pages Medication Page 14 Keeping healthy whilst on holiday Pages Staying safe in the sun Pages Travelling to cold countries Pages Theme parks Pages Children travelling alone Pages Checklist Pages 32 Further support Page 33 Acknowledgements Pages 34 3

4 Introduction Having a child with a heart condition should not prevent you enjoying a holiday away from home or even abroad, but it is essential to spend some time planning the trip before you book anything. Planning in advance allows you to organise medical, safety and mobility aspects of your holiday. Being prepared will allow you to enjoy a fun, relaxing holiday. This booklet aims to guide you through the planning of your holiday, weekend or even the first time your child goes away without you. If you d like to discuss your holiday plans or anything in this booklet,,please call the Little Hearts Matter team on ,, We are going to Brazil this Friday for a three week holiday in the sun again. Sofia is so looking forward to it. As a traveller with her condition, I have to say I never had any problems with her. She loves going on the aeroplane, in fact this morning she was eating her breakfast pretending to be on the plane already! 4 Verified by Dr Aaron Bell October 2013

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6 Initial considerations Ability to travel Remember that all children s health needs are different and each will have different requirements. Before booking a holiday you will need to seek advice from your cardiologist or specialist nurse / cardiac liaison team to check that your child is able to fly or undertake a long journey. You may need to take a completed fit to travel form or a certificate from your doctor. In some cases the travel agents will arrange for this to be completed. Where to go Having found out your child s medical limitations from your cardiac team, you will have a better idea of suitable holiday destinations. You might also like to think about the following things when planning your trip. Where is the nearest hospital? Many cardiologists advise against small island holidays because of the distance from medical care. You will want to be able to seek medical care for your child as quickly as possible in the event of an emergency. High altitude destinations are also usually not sensible. Check where the nearest doctor and pharmacy are. Temperature. Consider if your child is able to cope with very hot or very cold weather. Check the hotel facilities. Are there fridges in the rooms for medication? Are upstairs rooms accessible by lift? Is there disabled parking? 6 Verified by Dr Aaron Bell October 2013

7 How will you get to your destination and how long will the travelling take? Once you have decided where you are going you may find it reassuring to have the details of the nearest cardiac centre or children s hospital. If you have a patient-held records folder take this with you so all your child s details are to hand, or ask your cardiologist for a letter giving a brief history of your child s condition, treatment received and a list of medications. Take contact details for your child s cardiologist, specialist nurse and cardiac centre with you. Travel and Trips 7

8 Support whilst travelling Oxygen When a long flight is at high altitude there is less oxygen in the aircraft s cabin making it harder for a child with low oxygen saturations to keep their oxygen levels high enough; for this reason your cardiologist may advise travelling with oxygen. The doctor may prescribe it to be there if your child shows signs of cyanosis (blueness) or is finding it hard to catch their breath. In some cases the doctor will suggest that oxygen is given throughout the high altitude part of the flight. If oxygen is prescribed you MUST discuss this with the airline you are going to travel with before you book as they all have different regulations about carrying oxygen and may have different costs. You may need to complete a form or get a doctor s certificate confirming your child is fit to fly. If you have booked through a travel agent, they may be able to do this for you. You cannot arrive at the airport and expect oxygen to be made available without having arranged it in advance. LHM has information about different airlines oxygen policies - please contact the office to find out more. If your child is on oxygen at home, you should ask your home oxygen service how to go about arranging oxygen for the journey and your holiday stay. Allow plenty of time for this, as advance notice is required. There is likely to be a cost involved, so don t forget to take this into account when planning your holiday budget. Buggies Airports are huge, it may be wise to keep any buggies with you until you get to the gate. If your child struggles to walk any distance, talk to the airline about keeping the pushchair until you are on the plane, or any alternative help they can offer. You can ask for special assistance where you will be helped to and from the aircraft - this should be booked via your airline. 8 Verified by Dr Aaron Bell October 2013

9 Milk If you are taking a large amount of milk, it might be an idea to phone the airline before travelling and ask them to agree to any extra weight with no charge. It is also important to plan what you may need to take on board for the duration of the flight. Fluid restrictions in the cabin are still variable so take sterile bottles on board that can be filled with boiling water when you need to make up a feed. Translations If travelling to a non-english speaking country it might be handy to learn a few key words, in the local language, for your child s condition, medication and for emergency help. LHM has a list of some useful medical terms in French, German, Spanish, Portuguese and Italian. Blue Badge The Blue Badge Scheme is recognised in other EU countries, although parking concessions differ from country to country. Do visit to find a comprehensive guide about where you can and cannot use your blue badge. If you are travelling by car or intend to hire a car it may be worth taking,,your Blue Badge with you.,, If your child is on prescription milk like Infatrini, you will need to get a letter from your GP or cardiologist addressed to the airline confirming your child s condition and the requirement including the daily allowance/total quantity so that you can travel with the milk easily and you can also take a few unopened bottles for the flight itself. Travel and Tips 9

10 Travel insurance Once you have had the OK to travel and decided on your destination, it is very important that you have adequate travel insurance including cover for your child s heart condition when travelling abroad. It is advisable to call a variety of different companies; you can try specialist insurance companies that deal with pre-existing medical conditions, although many high street insurers are also able to insure people with congenital heart conditions. Call a few to get the best policy and price. Please remember that you MUST declare your child s heart condition and treatments in full otherwise the policy will be void. You must ensure that the policy fully covers your whole family; please declare your child s condition as some companies take on new policies without asking medical questions. Check that the insurance will fly a sick child home with an accompanying parent. Don t let yourself be persuaded to take out a policy which excludes medical cover for your child s heart condition, even if they have been well recently. It is better to have a holiday knowing that all eventualities are covered. For holidays in the European Economic Area (EEA) your immediate health care may be covered or the costs reduced by the European Health Insurance Card (EHIC). Apply for this card a few weeks ahead of your holiday. For more information read the section on Healthcare Abroad. If you are travelling to countries outside the European Economic Area (EEA), especially to countries such as the USA who operate a private medical system, if you are not adequately insured, you may end up paying for any care. An insurance company may ask you to speak to their Medical Screening Line. It will be easier if you have all your child s details to hand as they will most likely want to know where you are travelling to, dates of travel, your child s date of birth, details of your child s condition, medication, symptoms, any treatment, and whether they are currently on a waiting list. 10 Verified by Dr Aaron Bell October 2013

11 Some examples of medical screening questions Initial screening questions are about: Whether your child takes prescribed medication. Whether he or she has been a registered in or out patient in the last two years. Whether he or she is on a waiting list. Whether he or she has a diagnosis of a terminal illness. Questions specific to congenital heart disease may include: Has the condition been fully corrected? Do the affected person s skin, lips or fingers ever become blue? Is the affected person currently growing at a normal rate? Does the affected person become breathless unusually easily? Does the affected person ever collapse? Most systems only want yes or no answers - it isn t a DLA application! Stating a diagnosis of Tricuspid Atresia may take you to questions about acquired valve disease, so you are better to state that your child has congenital heart disease. Your insurance company may ask for a letter from your child s cardiologist confirming that your child is fit to travel. Ensure that you take a copy of your insurance policy and any contact numbers on holiday with you. LHM has a list of insurance companies that our members have used to gain their insurance although we cannot recommend any specific insurers. Please contact the office for this list. If you have travel insurance with your bank account or if you have medical insurance with a company such as HSA, you may also like to check to see if you can get travel insurance for your child as some companies exclude insuring anyone with a pre-existing health condition. Travel and Trips 11

12 Healthcare abroad If you are travelling to a European Economic Area (EEA) country or Switzerland you can obtain a European Health Insurance Card (EHIC) which will entitle you to reduced cost, sometimes free medical treatment if necessary whilst you are in that country. The card is normally valid for three to five years. This is not a substitute for travel insurance as it will not cover cancellation of a holiday or the cost of transfer back to the UK. Some insurers require you to have one. Each person travelling needs to carry the card, including children who should be listed as dependents when the adults apply for their cards. The EHIC is free of charge. However, unofficial websites may charge you if you apply through them. You can get an EHIC by applying online at or by calling You will need to give the name, date of birth and National Insurance or NHS number for everyone you are applying for. Once eligibility has been verified an application will be processed and you should receive your card within ten working days. Make sure you apply well in advance of your holiday. Any person who is ordinarily resident in the UK, and is of British, other EU/EEA or Swiss nationality, is eligible for an EHIC. If your nationality is not one of those mentioned above you ll have to provide evidence that you are ordinarily resident in the UK, e.g. your visa, a letter from the Home Office or letter from your employer. You cannot apply online. Each country s healthcare system is slightly different. Therefore, your EHIC might not cover everything that would be free on the NHS. However, you should be able to get the same treatment as a resident of the country you re visiting. In some countries, you may have to pay a patient contribution, also known as a co-payment. You may be able to get a refund for these payments when you re back in the UK if you could not do so in the country where you were treated. The EHIC will cover any medical treatment that becomes necessary during your trip, for example because of either illness or an accident. (In an emergency you can dial the 12 Verified by Dr Aaron Bell October 2013

13 European emergency number 112 from any telephone or mobile phone). The card gives access to reduced-cost or free medical treatment from state healthcare providers. It includes treatment of a chronic or pre-existing medical condition that becomes necessary during your visit. The card covers the provision of oxygen and kidney dialysis. You will have to arrange and pre-book these treatments before you go on holiday. You can ask your GP or hospital for advice, but make sure you are not booked with a private healthcare provider as these are not covered by the EHIC. The card also covers routine medical care for people with pre-existing conditions that need monitoring. Some European health systems expect you to pay your bill when you are treated and then claim a refund using your EHIC. Try to apply for your refund before you return home. Find out how to do this in the country-by-country guide on the EHIC website. If you need to make a claim once you return to the UK, call the Overseas Healthcare Team on (Monday to Friday, 8am 5pm). You will need your National Insurance number and UK bank or building society details to hand. Remember to keep all receipts and any paperwork (make copies if necessary). You or your insurance company may need them if you re applying for a refund or reimbursement. Travel and Trips 13

14 Medication It is vital that you have enough medication for the whole trip and extra supplies in case of accidents such as broken bottles or travel delays. It may be a good idea to pack medicines in your hand luggage if possible, in case of lost luggage. All medications must be kept in their original packaging. You may wish to obtain a letter from your doctor to say that your child needs the medication and a list of all medications (proper name not just the trade name) in case you need to replace any or have difficulty going through customs. Taking a copy of your child s repeat prescription is also a good idea. Some liquids are allowed in your hand luggage, although there is a limit on the quantity. The current rules are as follows, though we strongly recommend you check these before you travel. You can carry small amounts of liquids in separate containers, each no greater than 100ml. They must be taken to the airport in a single, re-sealable, transparent plastic bag, which does not exceed 1 litre, so about 20cm by 20cm. The contents must fit comfortably and the bag must be sealed. The bag must be presented separately at the airport security point. Essential medicines for the period of the trip may be permitted in larger quantities above the 100ml limit, but will be subject to authentification. Passengers must have obtained prior agreement from the airline and the departure airport, and must also take along supporting documentation from a doctor. If your child is on Warfarin, make sure you take your CoaguChek machine and spare batteries. Remember that the machines and the strips are sensitive, so avoid exposing them to extremes of temperature. Ensure that you take plenty of strips bearing in mind you may need to do extra INR tests whilst you are away. If you are staying at a hotel you will need to check guidelines about storing medicines in the hotel fridge. Some medications will need to be transported in a cool bag with an ice pack. Make sure that you take the contact details of the people who manage your child s anticoagulation, so that you can get advice if needed. 14 Verified by Dr Aaron Bell October 2013

15 Keeping healthy whilst on holiday Dehydration If you are holidaying in the summer or in a hot country be aware that some children find the heat very tiring and they dehydrate very quickly. All children with half a heart need a balanced amount of fluid in their body to help the blood flow through the heart smoothly. It is also important that children on Warfarin do not become dried out as it can affect the speed at which blood clots, affecting the dose of Warfarin that it is safe to give. A plant shows us when it is dry by wilting, children don t always ask for a drink so offer regular fluid in the shape of drinks and ice lollies. Aways carry a bottle of water with you, you don t need to keep buying the expensive spa type, just buy a sports bottle and refill it from the tap. If you are somewhere hot, water stays cold in a flask, or you can freeze a three-quarters full bottle overnight to take with you the next day. Babies who are only drinking milk need to have their normal amount of feed but might need some cold, previously boiled water in between feeds to keep their fluid levels up. Dehydration can happen even more quickly if a child catches a stomach bug. Being prepared can help prevent severe dehydration so ask your doctor for a rehydration solution to take with you that is safe for your child and an idea of when they think you should use it. Infections If your child is prone to infections you may wish to ask the doctor to give you antibiotics to take away with you. Taking them in a dried form that you can make up with cooled boiled water makes them easy to carry in your luggage. Tips to help avoid stomach upsets Lots of us get a stomach upset when we go abroad because of different water or spicy food. There are ways to reduce the possibility of catching a stomach infection. Don t drink tap water or use it to brush your teeth unless it is clean. Check the quality of the drinking water in the country you are visiting before you travel by visiting the Food and water abroad section of travelhealth. Travel and Trips 15

16 Use filtered, bottled, boiled or chemically treated water. Ice in drinks should be avoided unless you are in a country where you know that the water is safe. Foods to avoid include salads, such as lettuce, uncooked fruits and vegetables, unless washed in safe water and prepared by yourself. Avoid food that has been allowed to stand at room temperature in warm environments or that has been exposed to flies. Ensure shellfish is cooked thoroughly. Only eat freshly prepared food that is cooked thoroughly and served very hot. Good hand washing is extremely important; you may wish to use an antibacterial gel as well. Pacemakers It is fine for children to travel with a pacemaker but it can be affected by the security scanners at the airport and may set off alarms. Make sure that you have the pacemaker card with you and stop your child moving through the scanner. Airport security staff are used to travellers with pacemakers but may be surprised if it is a child with a pacemaker. Air travel If we fly on a long haul flight we all have an increased risk of developing small clots in the blood vessels in our legs, Deep Vein Thrombosis, more commonly known as DVTs. This happens because we are sitting in one position for a long period of time and our legs are hanging down. If you have a complex congenital heart condition you may already be at a higher risk of developing clots, this is why doctors prescribe an anticoagulant like Aspirin or Warfarin. Children who have a Fontan circulation are at greater risk of developing DVTs, partly because of the way blood is pumped around the body but also because the blood has an increased 16 Verified by Dr Aaron Bell October 2013

17 tendency to clot if you have had the Fontan procedure. For more information look at the Anticoagulation information booklet. If the children are prescribed anticoagulation, this will help prevent clots, but there are a couple of other things that you can do to further reduce the risks. Drink plenty before and during the flight, preferably water or non-alcoholic drinks. Dehydration creates an increased risk of clots forming because the blood becomes stickier. Move about as much as possible. Small children tend to wriggle in the seat but if they don t, when they are awake, encourage them to take walks up and down the plane (not to the point where they annoy other passengers of course!). You can also look at the exercise card that is normally in the seat pocket on long haul flights. All of the family can do the exercises together, make it fun. If on arrival or over the holiday your child complains of a stabbing pain in their leg, especially in the calf, and if their leg feels hot to touch seek medical attention. Remember to have your doctor s letter with you so that any medical team can see immediately what is wrong with your child and how to contact their cardiologist at home. Travel and Trips 17

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19 Staying safe in the sun It is important for all of us to protect ourselves from the effects of the sun, but it is essential for a child who has only half a working heart. Below are some tips for enjoying the sunshine whilst keeping safe. Protection from the sun s rays Children s skin is very sensitive, especially along the scar area, and so they burn easily in the sun. Also some medications make the skin even more sensitive. Children on Amiodarone can be particularly sensitive to sunlight, so parents need to be especially vigilant about keeping them well protected. Always protect their skin by using sun cream. It is often useful to buy a good quality product as they tend to have a longer-lasting effect. High factor creams are essential for children. Tanning is not a priority at their age, just being out in the sun will give them a healthy glow. Make sure that their shoulders are covered and that they are wearing a hat and sunglasses, proper UV light protection ones. Always make sure that there is shade in the garden, park or beach. Umbrellas and little play tents can be useful. Sun shades on a pram or pushchair and sun protectors in the windows of cars all help to protect a baby or child from too much sunshine. A baby or child with sunburn is very unhappy and sunburn can be very dangerous. You may find a hand-held fan or a clip-on buggy fan useful. Children do overheat but even in the sun they can get cold If you are going out and about always dress your child in lots of thin layers so that they can have as many or as few layers on as they need to keep them warm but also to keep them cool. A change of clothes is essential even for older children if there is water in the park or if you visit the beach as the tendency will be for children to find water! Children with half a working heart get cold quickly even in the sun so a towel and fresh clothes will soon warm them up. Always remember waterproofs because the weather can change very quickly and a sudden downpour can leave a child soggy and cold. Be careful when using air conditioning as your child may find it too cold, even though it feels comfortable for you. Travel and Trips 19

20 Energy levels in the sun When the sun is shining we all move outdoors. It is great to get some fresh air. When children are outside they often run around more and will therefore tire easily. Plan activities and plan short breaks. Just ten minutes sitting down before your child is up and playing again can be enough to give them a good rest. Even on the beach or at the park have a story book or colouring to hand so that you can entertain your child whilst they take a break. Wax crayons may not be a good idea though as they have a tendency to melt! Swimming with only half a heart Swimming is great exercise for children with heart conditions, the water supports their body making exercise a little easier. If they are swimming in the sea or an outside pool a small wetsuit can keep them warm. They are now easily available in motorway service stations, large supermarkets and sports shops and don t cost a fortune. If they are swimming outside in swimming costumes you need to cover their skin in waterproof suncream and if they are not diving under the water a cap keeps the sun off their eyes. Remember that playing around in the sea can be very tiring so planned regular breaks as set out above are a very good way to ensure that children can enjoy their holiday without getting tired and fractious. Medicines in the sun Even when the sun shines children need to take their medications. Some children need them even when they are out and about. If your child is taking liquid medications it is often important to keep them cool. A little ice pack bag with drinks and medications stored in it will keep them safe, but be careful it isn t too cold as you don t want frozen drinks and medication! Remember to pack some Calpol or Paracetamol because a child who becomes over hot or even slightly burnt will need something to settle them and reduce their pain and temperature. Eating in the sun Not many of us want to eat large heavy meals when the weather is hot and the sun is shining. Children with half a heart are no different but we all know that they need the calories to fuel their heart and help them grow. 20 Verified by Dr Aaron Bell October 2013

21 Lots of small meals and planned snacks that are filled with calories will help to keep their intake high. Ideas include fat-filled ice cream, sandwiches filled with protein like eggs, ham or peanut butter, finger food like chicken dippers, mini sausages or cheese chunks and chopped up vegetables like carrot and celery and milkshakes made with fruit and ice-cream. These are all good fun and tempting for a tired, hot child. Travel and Trips 21

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23 Travelling to cold countries Whilst it is extremely sensible to be cautious when travelling to hot countries it is equally important to take care when travelling to cold climates. Children with single ventricle heart conditions have problems keeping warm so being in an atmosphere that is constantly cold can be a problem. They need lots of layers on, double socks and gloves, scarves and hats. Other issues about an activity holiday on snow could be: Travelling high into the mountains where the atmosphere can have a lower oxygen level. Falls for a child on Warfarin or other anticoagulant. The added energy needed to get around in the snow. Children are not excluded from holidaying in winter destinations but added thought is needed when planning a trip to the snow. If you,,have concerns contact your cardiologist. Although we have always made a conscious effort to let Alex live as normal a life as possible, we knew that before taking a holiday half-way up a snowy Swiss mountain, we would need to think carefully about the possible health risks. My recommendations would be: take advice beforehand from your consultant, use layers, keep a flask of hot drink about you if in extreme low temperatures, invest in some thermal socks, vests and gloves. With all of this, these special children can experience what everyone else can, and have just as an enjoyable time!,, Travel and Trips 23

24 Theme parks Lots of family holidays include a visit to a theme park which often has a variety of rides that include many where there are clear signs that anyone with a heart condition should not take part. It is often difficult to assess which rides would be safe for your child to explore. As always it is very important that you ask your doctor what restrictions they feel need to be in place for your child. The general overview here follows discussions with cardiologists and surgeons who have raised a couple of reasons why the rides might create an added risk for a child or young adult with only one working heart pump. The rise in adrenaline (see information box opposite) during a scary ride makes the heart work much harder and can, even in heart-healthy children, cause the heart rhythm to fluctuate. Anyone who already has a heart condition will be at a higher risk of developing arrhythmias especially as they get older. Anyone who has undergone a Fontan procedure and who relies on the redirection of blood to the lungs may find that the rotational rides create a G force that will affect their circulation, even if it is only for short periods of time. This may leave them breathless and cyanosed (blue) or they could even lose consciousness. Doctors are keen to point out that it is up to each family and young person to decide which individual rides may pose a risk but in general the rides which are scary, go upside down or very fast are usually the rides with the greatest cardiac risk. Rides where you get wet can also pose a risk, this time of the child getting very cold and not being able to warm up again. You might plan to go on wet rides at the end of the day before leaving the theme park, or you could have a full change of clothes ready for afterwards. 24 Verified by Dr Aaron Bell October 2013

25 In some resorts or theme parks there are special services for disabled children and adults. Wheelchair or buggy use, queue passes or entry or access for park events can be organised as long as you show some sort of proof of disability, e.g. the Blue Badge or other medical cards, disability cards, letters or certificates. If you plan to leave your car in a Blue Badge space while you are away, check whether a photocopy on display will be acceptable. Making use of the facilities set up for disabled visitors can reduce waiting times, provide easy access and allow a child the full opportunity to enjoy their park experience as much as any other child. What is adrenaline? Adrenaline is a hormone produced by the adrenal glands during high stress or exciting situations. This powerful hormone is part of the human body s acute stress response system, also called the fight or flight response. It works by stimulating the heart rate, contracting blood vessels, and dilating air passages, all of which work to increase blood flow to the muscles and oxygen to the lungs. Travel and Trips 25

26 ,, We have been to Legoland twice now. They are geared more for disabled guests who don t understand the concept of queuing. They gave us a fast track pass on our first visit but not the second time as it was very quiet anyway. Having said that, the staff were very helpful. You need to take proof of DLA and they also ask for specific details about your disability/ diagnosis. We were asked if we had a hospital letter with a diagnosis on it!,, 26 Verified by Dr Aaron Bell October 2013

27 Children travelling alone From sleepovers to school breaks, as your child gets older they will want to spend time away from home. It is all part of growing up but can frighten parents, both the child s and also the ones of the child who has invited someone with a heart problem to stay. It is all about planning the trip and making sure that everyone understands what staying away can mean if you only have half a working heart. Sleepovers The most important thing is to check that the family inviting your child to stay understand that they visit with a few added things to think about. Invite the hosting parent round for a cup of coffee and have a chat about the normal day-to-day care that you have in place at home. What is wrong with their heart. What medications your child is on. Send all medication already dosed out to make everyone s life easier. What risks there are to their health when taking part in activities. Warfarin and what that means. How to recognise an emergency, what to do in an emergency and emergency contact numbers, remember if it is serious, 999 first, parents second. Whilst it is important to make sure that everyone understands the possible problems with a trip it is also very important that your child has the chance to visit other children and learns to gradually be independent. Make sure that a first sleepover is with a family that really knows your child. It may be a good idea to make sure that a sleepover is one to one to begin with as a large group often leads to mad play and more accidents. Set the rules for your child so that they make the life of their host a little easier. Send them with a mobile phone so they can ring home if they are worried, promise them that you will fetch them home if they are worried. Travel and Trips 27

28 It is important that you, your child and the family they plan to visit are all happy about the trip before it happens. Don t confirm anything with your child until you feel confident. School Trips Children from junior school age upwards (and occasionally earlier) may be offered opportunities to participate in residential trips, as a way of enhancing their education, or as part of an extra-curricular club such as cubs or scouts. These trips are an exciting part of education and growing up, but there can be difficulties in terms of ensuring access to a trip, considering who will support a child, and knowing whether or not a parent is required to accompany them. Regarding school trips, the Equalities Act requires that schools make reasonable adjustments to include children with disabilities in all areas of the curriculum including off-site activities. Planning for residential trips should take place well in advance. If the school or club regularly use the same venue, it might be worth talking to them about your child s needs before an earlier visit (e.g. the previous year), so that they can consider how the location will suit your child when they are on site with the previous group. If it is a new venue, find out when the party leader (teacher or other adult in charge of the trip) is going to visit, and work out a list of questions relating to your child s needs. With your input, the school or club should carry out a full risk assessment, which should cover all proposed activities and free time. You may wish to ask your cardiac liaison nurse to check through the risk assessment. Things you may need to think about Who is in charge of the trip? Which other members of staff / adults will be accompanying the children? Do they know about your child s needs, and would they know what to do in case of medical emergency? What are the proposed activities? Are they safe for your child? Has your child done any of them before? Do you need to ask your child s cardiologist about the suitability of any activities? What is the accommodation like? Can your child manage 28 Verified by Dr Aaron Bell October 2013

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30 stairs or do they need a ground floor room? Does your child use a pushchair or wheelchair? Will they be able to get to all of the activities, or will alternative activities need to be provided? Can any activities take place somewhere different so that your child is not exhausted by simply getting to the activity? Who will be responsible for your child s medication during the trip? Might your child need to check their INR whilst they are away? Can they do this independently? Does your child need any support with personal care e.g. eating and drinking enough, self-limiting, toileting, showering? If so, who will help them? What are the plans for catering? Will this be suitable for your child (e.g. do they have special dietary needs, can they access the canteen, do they need reminding to eat enough, will they be responsible for buying their own meals)? What is the daily timetable like? Are there breaks which could be used for rest breaks? What time is lights out? Is there any way to make sure your child gets as much sleep as he / she needs to keep well? Deciding whether or not a parent should accompany their child is a difficult question. There may be concern that the child could be pushed to do activities which are beyond their physical capabilities or they may be stopped from doing something they could do with certain adjustments. There may be personal care issues which can best be handled by a parent. Or your child may not be particularly well at the time of the trip, so it might be in their best interests to have a parent present, to keep an eye on them and to bring them home early if needed. It is well worth taking the time to plan for these types of trips, as children generally really enjoy the experience of being out of the classroom, visiting somewhere new, experiencing new things and being away with their friends. The majority of our children should be able to enjoy these experiences in the same way as other children, with some careful advance planning and some adjustments to accommodate their needs. 30 Verified by Dr Aaron Bell October 2013

31 Tips Ensure your child is with a group of friends who know them well, so that they can help keep an eye on your child. Instigate a buddy system to help your child be a bit more independent. Make sure your child knows who to go to just in case there are any problems either during an activity or during free time. Together with staff from school, think about how best to keep your child safe during unstructured free time, but also allowing them time to enjoy socialising with their friends. Write a detailed packing list, taking the suggested list from school, and adding extra items as needed such as medication, INR machine, spare clothes, warm clothes, waterproofs, blanket / emergency blanket, copy of repeat prescription, healthcare plan, details of hospital number / consultant s contact details, etc. If the residential is an outdoor activities trip, plenty of warm clothes will be needed. Include your child in planning the trip. If it is an active trip (e.g. outdoor activities), agree limits in advance where possible. Most importantly have fun! Travel and Trips 31

32 Checklist Has your cardiologist said that your child can travel? Is the destination suitable for your child s needs? Have you found out where the nearest hospital is? Do you have travel insurance which includes your child s medical condition? Do you have an up-to-date EHIC card? Do you have enough medication for your whole trip? Does your child need oxygen for the flight? Remember to pack Your CoaguChek machine. Your child s Blue Badge (if applicable). Your cardiologist s contact details and a recent medical letter. Medication list including a copy of your child s repeat prescription. Heart medication. Unmixed antibiotics if needed. First aid kit with lots of plasters and other medication e.g. Calpol or whichever type of Paracetamol your child prefers, rehydration salts such as Dioralyte. Snacks which are easy to carry e.g. dried fruit bars. Drinks for the journey (but beware of restrictions if you are going on a plane). 32 Verified by Dr Aaron Bell October 2013

33 Further support Little Hearts Matter Telephone: ; The British Lung Foundation Helpline: Gives guidance on a number of airlines that fly into and out of major UK airports and their policies on travelling with oxygen. Have a downloadable information sheet. Home Oxgyen Services The FIA Guide for the disabled traveller Provides a comprehensive guide on where you can and cannot use your blue badge. European Health Insurance Card (EHIC) Telephone: Foreign & Commonwealth Office Provides advice on an individual country basis and includes health and safety issues, etc. Travel and Trips 33

34 Acknowledgements Written by: Suzie Hutchinson Chief Executive Little Hearts Matter Isabel Baumber Deb Rahman Verified by: Edited by: Designed by: Photography by: Disclosure: Dr Aaron Bell MB;ChB; MRCPCH Consultant Paediatric Cardiologist Evelina London Children s Hospital LHM Parent Information Team Deb Rahman Information Administrator Little Hearts Matter Families Dr Aaron Bell has no conflict of interest. References are available from the LHM office on request. 34 Verified by Dr Aaron Bell October 2013

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36 Telephone: ; Little Hearts Matter A company limited by guarantee, registered in England and Wales, number , registered office 11 Greenfield Crescent, Edgbaston, Birmingham, West Midlands, B15 3AU, registered charity number LHM TTB 1113 Review date 1116