We would recommend that all schools and clubs have an AED (automated external defibrillator) onsite. This is a portable device that checks the heart rhythm and can send an electric shock to the heart to try and restore a normal rhythm. AEDs are used to treat sudden cardiac arrest. It is always a good idea to have an AED onsite where there are a large amount of people present (such as a school), regardless of whether someone has a known heart condition. This AED should be available anywhere that sports activity is taking place (e.g. swimming pool, playing field and gym). Anyone who has minimal CPR and AED training can use an AED to help save a life. The cost of an AED varies depending on the make and model from £1000 upwards. There are charities that will help finance or raise money for an AED, e.g. SADS UK. Some schools are teaching their pupils resuscitation skills. For example, all Leicestershire pupils are now being trained in AED use and resuscitation.
- For most children with a heart condition it will be necessary to have a ‘Health Care Plan’. (See ‘Managing medicines in schools and early years settings’, available at https://www.gov.uk/government/publications)
- Remember to respect the child’s need for confidentiality. Most children with CHD consider their condition to be private information and wish to have control over disclosure to their peers. It is therefore important not to draw attention to a child’s heart condition in front of their peers.
- Getting around school. Some children with complex heart conditions may need a little more time to get from one lesson to the next, especially if they have a lot of books to carry. It may be useful to consider using a ‘buddy’ system, where friends help to carry books between lessons.
- Be vigilant for any social problems. There is a risk that some aspects of their heart condition may single a child out as different, leading to social isolation or bullying. For example, there may be physical differences, such as small stature, surgical scars or a very pale complexion. Frequent or prolonged absence from school and inability to participate in team sports may also affect a child’s social integration.
- Scars and body image. Some children with CHD will have undergone heart surgery and may have significant disfiguring scars across the torso. For example a sternotomy scar (down the sternum) or a thoracotomy scar (along the ribs). For some, this is a considerable source of embarrassment and an awareness of this can be helpful when encouraging children to exercise.
One of the roles of the child's Clinical Nurse Specialist at the hospital is to liaise with the school nurse and PE teachers about specifics of what the child can and cannot do. If you're unclear on anything the consultant or clinical nurse specialist will be happy to provide further details.
As the nature of each child's condition will be different, we recommend obtaining an up to date Exercise Prescription Form, completed by the child's cardiologist/nurse specialist/specialist physio. This form describes the types of activities that the child can participate in, and at what intensity. Ask the child or their parents if they have been given one of these forms by their hospital. If not, you can download a blank copy below, and ask them to give it to their cardiologist to complete.
If you have not yet received a physical activity recommendations form from your clinician, please print the three forms below and take them to your next appointment. You’ll have one copy to keep and one to give to your school. Your clinician will also be able to keep one on file.