Information for Children Attending Heart Clinics
Taking your child to clinic for a heart appointment can be stressful. This may be their first appointment with a heart specialist (cardiologist) or it may be one of many. Perhaps this is your first appointment after being discharged home from hospital? The information below has been developed by families of children with heart problems to help you make the most of your appointment.
Where do the clinics take place?
We have many hospitals that provide care for children with heart problems across the North West, North Wales and the Isle of Man. (You can have a look at all of the hospitals who look after children with a heart problem at the bottom of this page.)
After Your Appointment
Remember to ask for a copy of your child’s clinic letter to be sent to you if you would like this. Hopefully all is well, and everything is stable until your next appointment. You can go home and forget about their heart problem until their next appointment. Sometimes the information you receive can either be upsetting or very complex. If you feel that you need extra support with the information you have been provided with, you can always call the Cardiac Nurse Specialists on the helpline numbers (Link to section). They will help you understand what was discussed and will be able to support you.
Sometimes you know that your child has not been as well prior to their appointment and you are expecting the doctors to tell you what has changed and what the plans are. Occasionally those plans are for your child to be admitted straight from clinic for further investigations or treatment. If you have that instinct, that your child is not quite right when you go for their appointment, remember to pack an overnight bag. Put it in the boot of your car. This way if they decide to admit your child you will be prepared and won’t have to worry about the basics that you may need. Hopefully it won’t be needed but best to be prepared.
If you think that your child’s appointment may be overdue and you haven’t received an appointment as planned, you can call the cardiac secretaries who will do their best to help. You can find the secretary’s telephone number at the top of your child’s previous clinic letters or by calling the hospital switchboard and asking to be put through to them. It is especially important to chase your child’s appointment if they are usually seen every 3-6 months and this appointment has not happened as expected.
Frequently Asked Questions
What Types of Clinics Are There?
There are many different types of clinics. You may see a range of different doctors and nurses. The length of the appointment may vary depending on the type of clinic. It is best to allow for at least two hours to ensure your appointment is not rushed.
Most clinic appointments require your child to attend in person. Especially if they need a trace of your child’s heart rhythm called an ECG or a heart scan called an echo. Some appointments can be done by video, for example the young people’s clinics run by the nurse specialists. This is to support young people to prepare them for transferring their care to adult services
What Do I need to Do Before My Visit?
It is worth taking the time to plan your visit. You are likely to be anxious about what is going to be discussed at the appointment and being organised will help. Plan your journey in advance so you know how to get there. Plan your route via public transport if using this. If coming by car, make sure you know where to park and have some money available for car parking in case you cannot use a card to pay. If you have any financial concerns or are worried about transport issues then please contact the nurse specialists to discuss what help may be available.
Think about what type of appointment you are going to and if there are likely to be instructions that you need to follow before the appointment.
For example:
- Your child is having a blood test to check the level of a medication in their blood stream. Make sure that you understand the instructions and when to take their last dose before attending the appointment.
- Your child needs routine blood tests to be done. Make sure your child is kept warm and that they have had plenty to drink. This will help the staff when they come to take the blood sample.
- Remember to take your child’s red book.
- Take your child’s last clinic letter with you. This will help you remember what you were told at your last appointment and what the plans are.
- It is helpful to think about how your child is doing. Think about how active your child is. Are they able to do everything that they were able to do 6 months ago? Or are they more tired? Are they stopping more frequently for rests? Are they able to keep up with their friends? Are they complaining of any new symptoms? Are they more breathless than usual? Has their colour changed?
- You may have lots of questions you want to ask. This leaflet can be printed off if you want to use it to make a note of the questions you want to ask.
- Explain to your child where you are going and why, so that they can prepare too. They may also want to ask questions.
What About My Child’s Medicines?
The doctor or nurse is likely to ask you about your child’s medicines, so it is worth thinking about this.
- Make sure you take any medicines that are due whilst you are in clinic with you
- Take an up-to-date list of the medicines that your child takes. You can take the medication itself with the labels on if you have enough room for them.
- If you are taking a list, be careful to note down the actual dose and not just the volume of liquid or number of tablets. This is because there can be different strengths of liquid and tablets.
- If you choose to take a copy of their repeat prescription from the GP – check it is up to date and doesn’t contain previous medicines or out of date information.
- If your child’s medicines are provided by the hospital rather than by your GP and you are due to have a new supply it is helpful to contact the cardiac nurse specialist in advance so they can have the prescription ready for you. Or make sure to let the clinic staff know as soon as you arrive in the department so they can get this organised for you.
- Think about whether your child has been experiencing any problems taking their medications?
- Do you have any questions about side effects or alternative medications that may be available?
- Do you know why they are taking their medication – remember to ask if you need help to understand.
What Should I Expect When I arrive at Clinic?
When you arrive at clinic you will need to book your child in. This is a good time to make sure that the hospital has your correct details. Your child is likely to need some investigations prior to seeing the heart doctor or nurse specialist. Your child’s height and weight will be recorded. Your child may also have their observations recorded. This includes checking their heart rate, blood pressure and oxygen levels.
Your child may then undergo certain tests. These include but are not limited to:
- A trace of your child’s heart rhythm. This is called an electrocardiogram (ECG)
- If your child has a pacemaker, they may need to have this checked before going to see the doctor.
- An ultrasound scan of your child’s heart to look at how well the heart is working. This is called an echocardiogram (echo)
- A chest X-ray
What Tests Are Done Prior to My Appointment?
Your child might have had several investigations done prior to coming to clinic. These are helpful to help create a picture of how your child’s heart is working. It is particularly helpful in order to make decisions about next steps and future treatment options.
You might be expecting the results of all or some of the tests when you come to clinic. Remember to think about questions you might want to ask about these beforehand, so you make the most of your appointment.
What Should I Bring?
You may need to be in clinic for some time. Coming prepared can help reduce the stress involved in waiting. Things to consider bringing with you include:
- Enough nappies, wipes, food and bottles
- Your child’s medicines that may be due whilst you are waiting
- Easy to forget, but snacks, snacks, and more snacks
- Clothes that are easy to take off and put on
- Our top tip is to put a younger child in a dressing gown. This is helpful for in between getting their height and weight and having investigations done. It saves having to get dressed and undressed multiple times during clinic.
- Older children could wear a shirt or clothing that unbuttons, to make things easier.
- If your child is walking but still uses a buggy when tired, remember to take it with you. It is useful to put things on as well. It is much easier to navigate the hospital without carrying your bags and a child.
- Distractions are always useful for your child: Bubbles, toys or electronic devices. Anything to keep a wriggly child happy and calm will be helpful
What if My Child Needs Special Support Due to a Learning Disability?
If you need reasonable adjustments to be made to help your child to attend the appointment, you can call the nurse specialists (link to contact page) to let them know what support you need. Most Hospitals have a Learning Disability Liaison Nurse or Team that can be contacted via the hospital switch board. They will help the team understand what special support your child needs and can help make sure that reasonable adjustments are made for them.
How Should I Prepare for a Telephone Appointment?
Occasionally you may be offered a telephone appointment rather than coming to clinic. The decision to offer a telephone appointment will have been made with your heart team. Please read your appointment letter carefully so you know what type of appointment you are due. There are some things that are important to think about if you want this appointment to go as well as possible.
- Prepare in the same way as for a face-to-face appointment. Think about how you’re chid has been doing. Make sure you have written your questions down as you will be given an opportunity to ask these.
- Think about who you want to be with you during the call. Having the phone on loudspeaker will allow other people to be involved in the conversation.
- Be mindful of where you are when you take the call especially if you are discussing private information. This is important if you don’t want other people to overhear what is being discussed.
- Make sure your phone is fully charged and switched on. Make sure it is not on “silent” as you don’t want to miss the call.
- Whilst they will give you an appointment time – this is likely to be different to the actual time that you receive a call. For e.g. if your appointment is in the morning then have your phone available all morning.
- Have your last clinic letter with you to help remind you of what was happening and what the previous plans were.
- When you receive the call, it is likely to be a “withheld” number. On this occasion its best to answer in case it is your child’s appointment.
How Should I Prepare for a Video Appointment?
Some appointments will be via a video link so it’s worth considering how to make the most of these appointments too. If your appointment is via a video, you will receive a web link that you click on to attend your virtual appointment. When you click the link, you will enter a virtual waiting room that acts like a physical waiting room. The person you have your appointment with will know you are waiting and will let you in when the appointment is due to start. You will be able to see the person you are speaking to and they will be able to see you and your child. You can choose to log on using your phone, PC or tablet. It is important to make sure that you have an up to date web browser. This is usually Chrome or Safari and you will need a good internet signal. There a few things to consider:·
- Wi-Fi is better than trying to use your own data
- Consider whether your connection is secure. Doing this at home with a password protected, secure internet connection is best but not essential. It will be your choice as to how secure you want the connection to be.
- You will find it works better if your device has a camera and a speaker that works.
- Avoid sitting with the light behind you. It makes it very difficult for the person calling you to see you or your child.
- If you have devices at home like Alexa certain aspects of your conversation may be captured. You may wish to turn them off during the call.
- It’s helpful to try and position your camera so that the person calling you can see you properly. It is difficult to have a conversation with the top of someone’s head.
- If your appointment is likely to be delayed, they are sometimes able to send you a message to let you know whilst you are waiting in the virtual waiting room.
What if I Can’t Make the Appointment?
Please remember to let the team know if you can’t make the appointment. Heart appointments are precious and can be offered to another family who is waiting to be seen. Just give the secretaries a ring and let them know. Even if it’s on the same day. It’s never too late to let them know.
Hospitals
Alder Hey Childrens Hospital
Manchester Royal Infirmary
