Congenital Heart Disease and Heart Research UK

What is Congenital Heart Disease?

Congenital Heart Disease (CHD) is a general term for a range of birth defects that affect the normal way the heart works. CHD is one of the most common types of birth defect, affecting approximately 8 in every 1000 babies born in the UK (NHS, 2020).

How is CHD treated?

Treatment will depend on the type of defect(s) that the person with CHD has. Mild defects, e.g. a hole in the heart, often don’t need to be treated as they may improve on their own and may not cause any further problems. If the defect is more significant then modern surgical techniques often restore most or all of the heart’s normal function.

People with CHD will often require regular check-ups with the cardiac team at their local hospital. An important part of these check-ups is guidance on how much physical activity they are able to do, and indeed should, be doing.

Back in 2012 we asked clinicians all over the UK how much physical activity advice they were giving patients. The response was varied, with written advice very rarely provided to patients (https://ore.exeter.ac.uk/repository/bitstream/handle/10871/25728/Clinicians%20Survey-_Williams_et_al_FINAL.pdf;jsessionid=727B0E237050815CEF5158D4AC15CC9D?sequence=1). We know that medical appointments can be overwhelming, with a lot of information to process in a very short period of time. That’s why we’ve developed the Congenital Heart Disease Physical Activity Toolkits with help from expert clinicians and researchers.

Congenital Heart Disease Physical Activity Toolkits

Our Toolkits contain information on why being active is especially important for people with a heart condition, signs and symptoms to look out for, questions you should be asking your cardiologist and much more.

We’ve got four different Toolkits to make them as specific to you as possible. You can navigate to and download our Toolkits for children, teenagers and adults with congenital heart disease, as well as our Toolkits specifically designed for parents and teachers/club leaders. These forms will give you a guideline on the type, duration and intensity of physical activity you should be doing safely.

 

Cardiac Departments/Clinicians:

If you would like more information regarding the Toolkits or you would like to order any physical copies, then please contact us at toolkits@heartresearch.org.uk

Children

We’ve been working with teams of doctors and people like you to make your Heart Journal as useful as possible. Find your way through our healthy eating maze, collecting fruit and vegetables along the way.

Learn more about your heart by doing word searches, colouring in and more!

Teens and adults

Here, you can access our resources specifically created for teenagers and adults with a congenital heart condition. This Toolkit is suitable for secondary school aged teenagers and adults. It contains information on how to exercise safely, learning to drive with a heart condition, joining a gym and much more.

Parents

Here, you can access our resources specifically created for the parents/guardians of people with congenital heart disease.

This Toolkit contains information on why being active is especially important for people with a heart condition, signs and symptoms to look out for, questions you should be asking your child’s cardiologist and more.

Teachers and Club Leaders

Here, you can access our resources specifically created for teachers and club leaders of someone with congenital heart disease. This Toolkit isn’t just for leaders of sports clubs and PE teachers; it includes information on school trips, medication and the Healthcare Plan.

Want to be part of shaping the next generation of

activity toolkits?

Take part in our 5 minute survey and let us know how the toolkits may have helped you, your family or your students.

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