School Advice

  • Starting and transferring schools

    Most children with congenital heart disease can be involved in all activities, but it is useful for the school to have some information such as:
    • Name of heart condition and how it affects them.
    • Any medication and how this could interfere with school day (such as water tablets, blood thinners)
    • Most children can be involved in all activities including PE ( If there are any restrictions this should have been discussed in clinic)
    • Children will have their own thoughts and feelings about how much they want to share with friends and peers about their condition. Sometimes children may be asked questions if they have been absent from school due to surgery. It could be helpful to talk to your child to help them think about what they want their friends to know and how they might answer any questions. If they want their peers to have more information they could think about whether they want to share this information themselves, or whether they would prefer that this is done differently, e.g. their teacher talking to the whole class.

  • Children with complex heart conditions

    For those children with more complex heart conditions here are some of the issues you might like to consider:
    • Your child may not tolerate being outside in cold weather.
    • Children who appear blue should be encouraged to drink plenty, especially after exercise or in hot weather.
    • Your child may have a lower exercise tolerance so school may need to make adjustments for them to participate in PE.

    Every school will have a policy for supporting students with extra needs and some will write an individual plan to make sure these needs are met. In some instances schools may instigate an Education Health Care Plan (EHCP) or an Individual Support Plan (ICP) and will work with you to develop this.

    These plans look at your child’s individual needs and how their heart condition, learning needs, strengths and weakness affect them at school. The plan can give recommendations on actions to be implemented such as individual learning sessions and allowing your child to do things slightly differently.

    If your child’s school requests more information about their condition you can contact the specialist nurses on and they can provide written information.

  • Bullying

    As much as we hate to think about it, bullying can occur to anyone at anytime. It is hurtful. It is scary. It can take many forms – physical, verbal, emotional and on-line to name a few. What ever it is, it can have long lasting effects. Here we hope to give some practical advice on what to do.

    Bullying occurs when an individual or group, verbally and/ or physically hurt another person who has done nothing wrong. Sadly, bullying is a common problem and can happen to anyone at any time. We know that people who bully others do so because they themselves feel insecure, unsettled or unhappy. Bullies pick on people to ‘project’ their bad feelings on to them in an attempt to resolve their own difficult emotions. This is a very unhealthy coping strategy and unfortunately can have many negative consequences for the victim, who themselves may begin to feel worthless, isolated, low in mood, low in confidence, anxious and angry.

    No one deserves to be bullied and no one should have to put up with it. If your child is experiencing bullying in school talk to their teachers or school nurse about it, schools have anti bullying policies to protect their students.

    Please do get in touch with the Cardiology Psychology and Counselling Service if you would like information, support or advice about bullying in relation to living with a heart condition: 0113 3926796 (Monday to Friday 9am to 5pm). You can also contact the National Bullying Helpline on 0845 2255787 or visit for more information.

  • Useful contacts and more information

    • The National Association for Special Educational Needs (NASEN) promotes the education, training, and development of all those with special educational needs.

    MedicAlert Many parents have found a MedicAlert bracelet useful for getting suitable care in an emergency.

    ACE Education Advice and ACE Education Training

    Council for Disabled Children

  • • Special Educational Needs and Disabilities Information Advice and Support Service or SENDIASS is a free, confidential and impartial service for parents and carers, children and young people (up to 25 years).

    • Independent Parental Special Education IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs (SEN) and disabilities.