School Advice

  • Starting Schools/Transferring Schools

    This can be an anxious time for any parent but having a child with a heart condition can have its own worries and it helps to be prepared. Many children will have been going to nursery, but it may be the first time that you have left your child with someone else, and you need to feel confident that your child is in good hands. We would therefore suggest that you contact the school well before the expected start date to discuss their needs. The same applies when transferring to high school – more teachers are involved, that need to be informed about your child’s condition. The Head of Year is usually the most appropriate person to contact. Schools may request more information about your childs 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

    These are some of the issues you might like to consider:

  • Supervision

    In junior school, teachers spend a lot of time with the same children and get to know them very well. If you inform your child’s teacher of their condition they will be able to supervise them appropriately and it is unlikely that they will need any special provision. However, children with complex heart problems may not tolerate being outside in bad weather and may need to stay indoors at break times when supervision will be needed. Children who appear blue should be encouraged to drink plenty, to avoid dehydration especially after exercise or in hot weather. As they get older, children recognise when they are being treated differently from their friends so any extra supervision should be approached sensitively.
    Children with complex heart conditions have lower excercise limits than some of their peers. Schools should be supported to be aware of this and can make adjustments to enable students to participate.

  • If you are worried how you child is progressing at school, always talk to their class teacher. If you feel they need extra support to learn and achieve their potential, then each school will have a policy for supporting those students with extra needs. Ask to see you schools Special Educational Needs Policy. Each school will also have a a member of staff who coordinates and over views students with extra needs – a Special Educational Needs Coordinator “SENCO” – arrange to see them.

  • 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.

    If you or the school feel that more help and support is needed, a statutory assessment can be requested. These used to be called Statement of Educational Needs. These were changed to include health assessments – Educational and Health Care Plan “EHCP”. These plans can, if needed be in place whilst the young person is in education up to the age of 25.

  • Educational Health Care Plan – EHCP

    Some children need more help at school. These can be due to a variety of reasons – educational, emotional, health and behavioural.

    Obtaining an EHCP can seem like a long process, and even after all the assessments, local authorities can say a child does not need an EHCP.

  • Useful contacts and more information

    Special Educational Needs & Disability Tribunal (SENDIST)

    SEN helpline: 01325 289 350



    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 liaison nurse (CLN) to speak to the school. CLNs are trained to advise teachers on meeting your child’s needs and are also normally able to reassure them about any concerns they have.

    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.