Coming to Clinic: Adults

The doctor or nurse is likely to ask you about the medicines that you take.  It might be helpful to think about the following:

1. Remember to take medicines with you – especially if you are due to take them whilst you are there.
2. Take the medication itself if you can with the labels on 
3. If you are bringing a list make sure it is up-to-date and has all the medicines you take including over the counter medication. 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.
4. If you choose to take a copy of your repeat prescription from the GP – check it is up to date and doesn’t contain previous medicines or out of date information
5. Have you had any problems taking your medication?
6. Do you have any questions about side effects or alternative medications that may be available?
7. Do you know why you are taking medication – ask if you need help to understand

When you arrive at clinic you will need to check in. This is a good time to make sure that the hospital has your correct details.  This is quite often done via a touch screen self-check in kiosk where you check your own details. If you are not sure how to use the equipment there is always someone available to help.

You are likely to need some investigations prior to seeing the heart doctor or nurse specialist. Your weight and sometimes your height will be recorded.  You may also have your observations recorded. This includes checking your heart rate, blood pressure and oxygen levels. If you normally have your blood pressure performed in a specific arm, make sure you tell the nurse performing the procedure. If your oxygen levels are normally low, you may be better waiting for a while for your oxygen levels to settle after walking to clinic, especially if it is cold outside. Let the nurse know what is normal for you.

You may have some tests done. These include but are not limited to:

1. A trace of your heart rhythm. This is called an electrocardiogram (ECG). You can ask for a copy of your own ECG or you may want to take a photo of it on your phone.
2. If you have a pacemaker, you may need to have this checked
3. A heart scan to look at how well the heart is working. This is called an echocardiogram (echo).
4. A chest X-ray.

You might have had several investigations done prior to coming to clinic. These are helpful to help create a picture of how your heart is working. It is particularly helpful in order to make decisions about next steps and future treatment options. You might have had some of the following:

You might be expecting the results of all or some of the tests when you come to clinic. Remember to think about the questions you might want to ask beforehand, so you make the most of your appointment.

You may be in clinic for some time. Things to consider bringing with you include:

1.  Bring something to keep you occupied like a book or something to listen to
2. Remember to bring your medicines that may be due whilst you are waiting
3. If you have kept a symptom diary bring this with you
4. Bring something to eat in case you get hungry
5. Bring clothes that are easy to take off and put on
6. If you usually use a wheelchair either some or all the time, remember to bring it with you.  You may need to walk in-between departments if you are having tests done.
7. Having someone with you is helpful to help you remember what was said. Because of the pandemic this has been difficult.  Think about how they can continue to be included in your appointment even if they can’t be there in person by using your phone.

1. Be honest – be open about how you are feeling and any changes in your symptoms or overall well-being. Be specific and give examples of how they are affecting you.
2. Take your time – try not to feel rushed and stay relaxed so you remember the key points you want to discuss. Referring to your notes should help with this.
3. Write things down – particularly if you do not have time to discuss everything you wanted to raise. If you have someone with you, ask them to write notes for you.
4. Agree – the plan for your care and when you are likely to be seen again
5. Ask questions – do not be afraid to ask questions if there is anything you do not understand. It is important to be completely clear about your treatment and care. Ask to receive a copy of your clinic letter.

Please ask if you would like support from an ACHD Nurse Specialist. They can help you understand what has been discussed. They can also help you understand your heart problem and why you are having symptoms, what to look out for and how best to look after yourself.  They are also able to help with lifestyle advice, keeping active, contraception and sexual health etc. If for some reason they are not available at the time you are in clinic or you have had a virtual or telephone consultation you can always call the ACHD helpline on 0151 254 3333 if you need any help or support after your clinic.

If you need reasonable adjustments to be made to help you to attend the appointment, you can call the ACHD nurse specialists on 0151 254 3333 to let them know what support you need. Most Hospitals also 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 you need.

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. This is to reduce the number of people in clinic and to abide by social distancing rules that are now commonplace.  There are some things that are important to think about if you want this appointment to go as well as possible.

1. Prepare in the same way as for a face to face appointment.
2. Think about who you want to be with you during the call.
3. Having the phone on loudspeaker will allow other people to be involved in the conversation
4. 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.
5. 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.
6. 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.
7. Have your last clinic letter with you to help remind you of what was said last time
8. When you receive the call, it is likely to a “withheld” number. On this occasion its best to answer in case it is your appointment.

Some appointments are being done via a video link. The nurse led clinics, pre-assessment and psychology clinics are using this method more frequently so it’s worth considering how to make the most of these appointments. 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. You can choose to log on using your phone, computer 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:

1. Wi-Fi is better than trying to use your own data.
2. If your signal is unpredictable, sit as close to your Wi-Fi Router as possible.
3. 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.
4. You will find it works better if your device has a camera and a speaker that works. It might be worth checking before your appointment.
5. Avoid sitting with the light behind you. It makes it very difficult for the person calling you to see you.
6. 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.
7. 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.
8. If your appointment is likely to be delayed, they are sometimes able to send you a message to let you know while you are waiting in the virtual waiting room.
9. If you think there is a problem with the appointment, you can call the secretaries and they will check everything is ok.
10. Remember, just like a face-to-face clinic, there may be unavoidable delays.

Please remember to let the team know if you can’t make the appointment. Heart appointments are precious and can be offered to another person 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.

Sometimes you only think of things to ask after your appointment has ended. Regardless of which Hospital you attended the number to call for help is the same. Please leave a message and a contact number and one of the ACHD Nurse Specialists will call you back to help with your query.

If you think that your 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 previous clinic letters or by calling the hospital switchboard and asking to be put through to them. It is especially important to chase your appointment if you are usually seen every 3-6 months and this appointment has not happened as expected.

ACHD Helpline: 0151 254 3333

Liverpool Heart and Chest Hospital NHS Foundation Trust