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. Publications are free for members, and LHM will put one in the post.
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.
Key stages 3 & 4 secondary school – years 9 – 11
Year 9 is a pivotal year at school for most young people. Many of them will be growing up through puberty and seeking a greater independence from their parents. Within school it will be the year when they will need to make choices about their education in relation to their further education and employment aspirations.
This booklet has been written to help young people, parents and teachers weigh up the opportunities and choices available at school from Years 9 to 11, thinking about ongoing study, qualifications and employment whilst balancing the possible restrictions of having only half a working heart.
Key Stage 3 secondary school – years 7 and 8
The move from primary school to secondary school is a huge, but very positive, step forward in every child’s life. It is the beginning of a greater independence, an opportunity to explore new areas of learning and a great place to gain friends and develop a strong social life. The education provided is not just academic: children are able to develop their confidence and explore a growing ability to make decisions and become more independent. The school you have chosen for your child will hopefully be able to meet all of their needs.
The aims of this publication are to help parents and carers plan and support children with complex heart conditions so that they achieve as much from their school life as their condition will allow; to support, inform and empower the children as they learn how to get the most from their life at school and to support and inform teachers who are looking to ensure that a child with a complex heart condition remains safe in the school environment whilst being encouraged and supported to
reach their full educational potential.
The Independent Review of Children’s Cardiac Services at Bristol Royal Hospital for Children
This is a plastic filofax which contains information on single ventricle heart conditions, possible treatments and lifestyle information. This can be added to as the charity produces more information.
Antenatal information pack
Our antenatal information pack has been written for expectant parents who have received a diagnosis of a single ventricle heart condition during a routine pregnancy scan.
This booklet and supporting DVD explores the tests that will be offered to help confirm the diagnosis, the treatment options that will be offered during the pregnancy and the management of the pregnancy. It then discusses the treatment options for the baby at birth and the lifestyle challenges faced by children with half a working heart.
This booklet has been written in partnership with Obstetric and Cardiac teams as well as families who have experienced this type of diagnosis.
The DVD answers many of the questions that LHM are asked about the diagnosis process and the lifestyle issues faced by children and their families. It contains interviews with health professionals and footage of children and their families talking about life at home with heart disease.
The booklet and DVD are free.
Antenatal diagnosis – questions to ask
This booklet contains some ideas of what to ask the next time you visit the hospital. Questions are divided into the following topics: About The Diagnosis, Treatment Choices, The Future, Delivering The Baby and The Plan For The Baby.
It is part of our antenatal pack.
Antenatal diagnosis – practical tips for expectant parents
This leaflet contains some practical hints and tips for parents expecting a baby with a single ventricle heart condition.
Living with anticoagulation
This booklet aims to equip parents and children with an understanding of why anticoagulation is needed, how to manage it on a day-to-day basis and what the associated risks are.
Benefits – a guide for parents
There can be many extra expenses involved when you are looking after a child with a single ventricle heart condition, for example, with feeding, warm clothes for winter and frequent hospital visits.
We hope this guide will point you in the right direction of some of the sources of funding which may be available to help families.
Disability Living Allowance – a guide
Disability Living Allowance (DLA) is a grant that may be paid every four weeks, on application, by the Department for Work and Pensions (DWP) to help families achieve the extra care that children with complex heart conditions require.
In this booklet we hope to offer help to all those who have to complete the complex forms involved when applying for DLA. It is important to remember that each child is different and the suggestions given here are only general rules and ideas. The booklet accompanies the baby and child sample forms which you can find along with further information about DLA.