Most of the information you have seen in the sections above is available in printed or downloadable form.

Click on any publication you are interested in to access a PDF version or ring the office team and we will pop one in the post. Our publications are free to our family members, but if you are a professional or non- members there is a small charge for them, click here to download the publications order form.

If at any time you would like to chat through the information you have been given, do not hesitate in giving the LHM team a ring on 0121 455 8982.

Transition to secondary school

In this book we will concentrate on the middle years in school and briefly touch upon the transition between Key Stage 2 (Years 3, 4, 5 and 6) and Key Stage 3 (secondary school).

As children develop and age they have to take steps forward in their education. For a majority of the time these steps are small and are made between classes. But from Year 6 to Year 7 or between junior to middle and then secondary school, the changes usually involve movement between classes.

Every school is run differently according to the ethos of the school’s head teacher and board of governors. Many secondary schools specialise in a specific area of education: science, sport or performing arts, for example. Other factors shaping schools are the national curriculum and local policies and educational support services.

This booklet has been created to help children and parents to plan the move into secondary school and to build a partnership between school and family.

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Healthcare plans for children and young people with a single ventricle heart condition

Every child with a single ventricle heart condition will have added needs within the school environment, although each individual’s needs will be different.

This booklet has been created to support parents/carers and young people to achieve a greater understanding of their needs within the school environment and to support the creation of an individual Healthcare Plan or Management Plan to be used in school a safe learning experience.

Click here for more information on Supporting pupils at school with medical conditions.

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Support for a child with special educational needs (SEN) within nursery, school or further education

This booklet has been created for parents of children with complex heart conditions to improve their understanding of the support available to enable their children to reach their full potential in the school/education environment.

In September 2014 the process for supporting children with added needs in school was changed. Gradually over the next three years School Action, School Action Plus and Statementing will be replaced with school-based support and/or and Education, Health and Care plan (EHC plan). This booklet explains the process in more detail.

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The Fontan

The Fontan Booklet provides lots of information on the operation, what you can expect to happen when you go into hospital and the changes you may notice afterwards.

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‘From us to you’ – bereaved families share their journey through grief

‘From Us to You’ has been written by families who want to share their personal knowledge of bereavement to support others experiencing similar feelings to their own.

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MCT diet

The MCT Diet is a specialised diet which is sometimes required by children for a short period of time in hospital after heart or chest surgery or for a short period of time at home. The medical staff at your child’s hospital will advise you if your child requires the diet and the dietitan will help you understand how to follow it and provide recipes and food supplements. This booklet is designed to be used in conjunction with the information and recipes from your dietitian. Do not follow this diet unless you have been instructed to do so by your child’s cardiology team.

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Preparation for hospital

This booklet has been designed to help parents to prepare their children for a hospital visit through the use of books, toys and play activities. It also includes some practical tips which other parents have found useful in the hospital environment.

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Toy list

A list of toys to help with hospital play.

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Book and DVD list

A list of books and DVDs about going into hospital which are aimed at children.

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Sport and exercise

Our Sport and exercise booklet is written for young people with half a heart, parents, teachers and club leaders. It aims to give overall guidance for leisure and school sport and exercise, and includes a chart which can be used by individuals to give an up-to-date personalised picture of what is safe for them.

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    Lexie is down at the PAN London transition event with Xander from Youth at Heart. This great event is being held at the house of vans and is informing young people from GOSH, The Evelina and The Brompton all about their upcoming transitions to adult services.
    There is so much going on including 3D printed hearts and a heart VR experience.
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