On this page you will find a list of 'Frequently Asked Questions' (FAQs), as generated by some of our patient and parent/carer representatives.
Why do I need to come to Bristol for my surgery/to have my baby/when I need certain types of care?
Care of a patient with a congenital heart condition is considered specialist care. Nationally, there are a small number of specialist hospitals who are ‘designated’ (told they are allowed to) perform specialist surgery and/or other procedures for CHD patients. Bristol is the Level 1 Specialist Centre for CHD patients in the South West and South Wales. This means that the British Heart Institute (for adults) and the Bristol Royal Hospital for Children (for paediatric patients) have all of the specialist staff and facilities to offer you (or your loved one) the best possible care when you need it. University Hospitals Wales in Cardiff is a designated Level 2 Centre for Children and Adults, which means they can offer certain procedures (but not surgery). Your local hospital that provides your outpatient care is known as a Level 3 Centre. The different levels of Centre all work closely together to make sure your experience of moving between them for different types of care is as smooth as possible.
How long will I have to wait for surgery?
If you have been told you will require surgery, you will be invited to a surgical clinic as part of your ‘patient pathway’ (the steps in your care journey) to meet with a specialist congenital heart surgeon. During that appointment, your consultant will discuss a likely timeframe for your surgery to take place, which may depend on several factors, the most important of which is you personally.
They are unlikely to be able to give you a precise date at this point. A date will be given to you by a surgical booking coordinator (an administrative member of staff), who will contact you directly.
Shortly before your surgery is due, you will need to come to hospital for an assessment. This is called a pre-operative assessment. During this appointment, checks will be carried out to ensure it is safe to go ahead with surgery.
For more information on your surgical pathway, please take a look at the Patient Pathways section of the website and click on the relevant age group.
What is a JCC? (Joint Cardiac Conference)
You may hear your consultant talking about a ‘JCC’. This is a Joint Cardiac Conference, which is a meeting of different types of specialist health professionals in congenital heart care (including surgeons, anaesthetists, cardiologists, imaging specialists and others), who come together to discuss the information they have about you and to agree how to make the best plan of care tailored to you personally.
What happens when I go home after surgery? Who is responsible for my care then?
Your GP (General Practitioner) is still your first point of call for general health issues, but if you want specialist advice before your follow-up appointment is due, you can contact the CHD Clinical Nurse Specialists at any point for advice. (Please see below for their contact details).
After you are discharged (allowed home) from surgery, you will be given a follow-up outpatients appointment to see a Cardiologist (Heart Doctor), either at your local hospital or in Bristol. This appointment will be a check-up to ensure everything is healing well after your operation.
If you have an emergency, you need to dial 999 or go directly to your nearest Emergency Department.
If I have concerns, who do I contact?
If you have an emergency please call 999 or go directly to your nearest Emergency Department. If you have a non-urgent query you can call the CHD clinical specialist nurses. (Please see below for their contact details). You can also contact your GP directly or a GP out of hours service, local to you.
How do I make a complaint or give a compliment?
If you would like to make a complaint or give a compliment, you can either contact the hospital directly (see our Hospitals page for details)or you can contact the Network who would be happy to pass on your comments via the Contact Us section of the website.
How do I find out who my local hospital team are?
Our 'Hospitals' pages give details of all of the Congenital Heart teams in the South West and South Wales region. Click here for more information.
What will happen to me during different times in my care?
Lots of things may happen to you during your lifetime with a congenital heart disease condition. We have created some interactive online documents that you can look at to understand a bit more about what happens in different stages of your care. Click here for more information.
How can I meet other people who understand my condition?
Having a congenital heart condition is a unique life experience, and no-one understands that better than other people who are also living with CHD. We have listed some groups where you can get together with others with similar conditions here.
How do I get support for how I am feeling?
It is natural to feel different emotions at different times for anyone, but sometimes living with a congenital heart condition can bring up different feelings. We have created a section of this website that shows you where you can access different types of support on lots of different topics, whenever you might need them. Click here for more information.
Where do I find information on my condition?
There is lots of information out there on congenital heart conditions. Some information is more reliable than others. We have listed some useful resources that we recommend on the website – click here for more information.
If you have a specific question about your condition or health you can contact your congenital heart disease clinical nurse specialists. (Please see below for their contact details).
What happens if my local doctor is not available or away?
If your regular local doctor with expertise in CHD is away, they will normally have arranged cover with a local colleague who also has some specialist knowledge. If there is only one doctor in your local centre with expertise in CHD, you can contact your Bristol-based Cardiologist who will be happy to take queries. You can look at the Hospitals section of our website for more information on the clinical staff at different hospitals.
What information do I need to take when I go to hospital in an unplanned way?
If it is an emergency, do not worry about taking any information with you. If you have to go to hospital urgently but you have time to/it is not an emergency situation, it is useful to take your last clinic letter or discharge summary from Bristol if you have one and are going to a different hospital. However, if you live in Bristol or are going directly to Bristol, you do not need to take anything because your information is saved on the hospital patient administration system already.
Where do I get advice about medication?
Your Consultant or GP would be the best person to contact for advice on medicines, but if you just want to check some basic information, you can look at the following websites:
- For children/paediatric patients: https://www.medicinesforchildren.org.uk/
- For adult patients: https://patient.info/medicine
How do I get more medication?
If you are discharged with medication that you have been told you need to take for more than 2 weeks, you should contact your GP as soon as possible to organise a repeat prescription. If you are struggling to organise this through your GP, you can contact your CHD clinical nurse specialist. (Please see below for their contact details).
What is the role of the Cardiac/Congenital Clinical Nurse Specialist?
The role of the specialist nurse is to provide advice, guidance and support to patients with a congenital heart condition. They are senior nurses with specialist knowledge of CHD conditions and the care of patients with a congenital condition. They can offer advice and support with any part of your care (including but not limited to: inpatient or outpatient issues, surgery, arrhythmias, endocarditis, heart failure, pulmonary hypertension, pre-assessment, learning difficulties, pregnancy/contraception, teenager and young adult care, end of life care). They can be contacted for telephone advice and take thousands of calls each year. They also have a roll in educating clinical staff and patients, and in producing patient information. There are different adults and children’s teams based in both Bristol and Cardiff, the Level 1 and Level 2 Network hospitals. Their telephone contact details are listed below.
Who can I talk to about pregnancy if I have a congenital heart condition?
You will need specialist advice if you are planning to or have become pregnant and you have a congenital heart condition. The Adult CHD clinical team will be happy to advise you and you can contact the Adult Clinical Nurse Specialist teams on the numbers below.
How do I contact a Cardiac/Congenital Clinical Nurse Specialist?
The teams can be contacted on the numbers below. There are different teams for children and adults, based in both Bristol and Cardiff (the Level 1 and Level 2 hospitals in the Network).
The Children’s/Paediatric team in BRISTOL can be contacted on 0117 342 8286 (All areas of Paediatric Care including Fetal and Transition)
The Children’s/Paediatric team in CARDIFF can be contacted directly on the numbers below: Cardiff & Vale 029 2184 5184
Bridgend, Merthyr, Rhondda 029 2184 7021
Gwent 029 2184 5524
Swansea and West 029 2184 4753
Transition care all areas age 13 to 18 years 029 2184 8046
Fetal care 029 2184 1746
Appointments and non-clinical queries: 029 2184 4749
The Adults team in BRISTOL can be contacted on 0117 342 6599
The Adults team in CARDIFF can be contacted on 029 2074 4580
Do the different hospitals liaise with each other? (For example, I am a patient based in Cardiff but will come to Bristol for my surgery).
Yes, the different hospitals within the Network do liaise closely with each other. Members of the various clinical teams will contact each other by telephone, email and by written clinical letters when they need to discuss or share information about a patient. They also work together through structured meetings, including the JCC (Joint Cardiac Conference – see the specific question about this above) and by being part of the South Wales and South West CHD Network, which has shared governance arrangements. Please see the Governance section of the website for more information on this.