School Advice

  • Starting Schools/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 for their record.
    This is some of the information they may find useful:
    • Name of heart condition, how it affects them and how often your child is seen in the clinic.
    • Do they take any medication that may interfere with the school day? (such as water tablets, blood thinners). If so they will need to know how?
    • Most children can be involved in all activities including PE? ( If there are any restrictions this should have been discussed in clinic by your cardiologist or specialist nurse)
    • If your child has had recent surgery, explain they will need 4-6 weeks off school and not to resume PE until the sternum has fully healed (approximately 6-8 weeks)
    • Different young people will have their own thoughts and feelings about how much they want to share with friends and peers about their condition. It is not unusual for young people, especially teenagers to want to keep their condition quite private, but sometimes they may be asked questions directly for example after a long absence for a surgery or if another young person asks about their scar. 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 direct questions. It can be helpful for them to think about what they feel comfortable sharing and what they’d prefer to keep private so that they don’t feel put on the spot if someone asks them a question. If they do 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.

  • For those children with more complex heart conditions or taking certain medication here are some of the issues you might like to consider:

    Children with complex heart problems may not tolerate being outside in cold weather.
    Children who appear blue should be encouraged to drink plenty, to avoid dehydration especially after exercise or in hot weather.
    Children with complex heart conditions have lower exercise tolerance compared to their peers. Schools can make adjustments to enable students to participate.
    Every school will have a policy for supporting students with extra needs and some schools will want to write an individual health plan to make sure these needs are met. In some instances schools may instigate an Education Health Care Plan (EHCP) if your child has extra support needs and will work with you to develop this.
    Schools may request more information about your child’s condition. The Specialist nurses would be happy to talk to school, or provide written information. Please contact the specialist nurses on 0113 3925467 or email

  • Individual Support Plan

    The school’s SENCO, with you and their class teacher can put together an Individual Support Plan (ISP). This plan looks at you child’s individual needs. How their heart condition, learning needs, strengths and weakness affect them at school, and their learning. The plan can give recommendations on actions to be implemented , things like individual learning sessions, allowing your child to do things slightly differently if needed. These things can sometimes be small changes that can help your child. They can also look at ways you can help your child.

    Targets can be drawn up, and when the plan needs to be reviewed. This can show progress has been made, or that changes could need to be made. If the school wants to bring i other professionals – like the specialist nurses, they will ask you. You can also suggest outside professionals if you feel their input could help.

  • 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 – 01908 951 045

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


    Useful websites:– ACE Education Advice and ACE Education Training– Preparing for Adulthood– Council for Disabled Children– Recent Ofsted reports– Government Website


    Independent Parental Special Education Advice

    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.

  • Here’s an over view of the process.

    The Statutory Assessment Process

    (20 weeks)

    Once you or the school have asked for a statutory assessment, the LEA must decide within six weeks whether or not to carry it out. They will consult you, the school and other health professionals before making their decision.

    The LEA will write to say whether they are going to carry out an assessment and if so, they will:

    say how they will carry it out and the timescales;
    give you the name of a contact at the LEA ; and
    ask you to give your reasons and provide evidence for why your child should be assessed. (You have at least 29 days to do this.)

    If the LEA refuse to do an assessment, they should tell you:

    why not; and
    how your child’s needs can be otherwise met.
    If this is case, talk to the school about extra help that could be arranged without an assessment.

    Or you can appeal against the LEA’s decision through the Special Educational Needs Tribunal.

    You can also contact the Special Educational Needs and Disability Information Advice and Support Service (SENDIASS) for independent advice and support. (We provide contact details at the end of this information sheet.)

    The LEA assessment

    If the LEA agree to do the assessment, they will ask various people to give their views on your child. They usually ask for advice from:

    your child’s school;
    an educational psychologist;
    a doctor;
    social services (if they know your child); and
    anyone else they think is appropriate.
    You will also be asked for your views, and they may also talk to your child.

    You can also suggest any other groups or professionals you know may be helpful, for example, your child’s cardiac liaison nurse or a dyslexia expert.
    A statement of SEN

    Once they have done the assessment, the LEA will decide whether or not to make a statement of SEN within 12 weeks.

    If they decide not to make a statement, the LEA will explain how they think your child’s needs should be met. If you disagree with the LEA’s decision, you can appeal to the Special Education Needs Tribunal, or use the disagreement resolution service.
    How the statement is put into practice

    At first, the LEA will send a draft statement describing your child’s needs and the measures needed to tackle them. It is important to check if the statement:

    lists all of your child’s needs and difficulties;
    lists everything your child needs;
    gives details of any special equipment your child needs; and
    is easily understood.
    If you are unhappy with anything written in the statement, you should speak to your named contact at the LEA as soon as possible.

    You can also get advice from the Special Educational Needs & Disability Information, Advice and Support Service – SENDIASS, IPSEA (see contact details at the end), or appeal to the SEN Tribunal.

    The LEA will review your child’s EHCP annually, checking your child’s progress and making sure the EHC Plan continues to meet their needs. If your child is 0-5 years, the EHCP will be reviewed every six months.

    Building a partnership with the school

    Forming a strong partnership with the school is central to getting the right support for your child. By creating a close relationship with the school, you can work together to help them plan appropriate support or other activities for your child.

    It is important to give the school as much information about your child’s heart condition as possible. You can also ask your child’s cardiac nurse specialist to speak to the school.
    For support with getting a statement, you may want to ask the head teacher or other relevant professionals to write a letter that supports your application. You can also get advice from IPSEA (Independent Panel for Special Education Advice) on 0800 0184016.

    Moving up to secondary school

    Your child’s primary school will send any documents related to your child’s special educational needs, including their EHC Plan, if they have one, to the secondary school directly.