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.
Heart transplantation – A guide for families
This booklet provides an introduction to transplantation. The aim is to help anyone facing this treatment to gain a greater understanding of the assessment process, surgery and an overview of the risks involved.
Your guide to university with half a heart
This booklet hopes to provide a guide for young adults with single ventricle heart disease who would like to explore going to university, and answer some of the questions you may have about life at university with a complex cardiac condition. It also includes the experiences of LHM members who are at university.
Personal Independence Payment (PIP) – a guide
In June 2013 a new benefit called the Personal Independence Payment (PIP) was introduced to help with some of the extra costs caused by long-term ill-health or disability. It is expected to be in place across England, Scotland and Wales by September 2017. The dates for Northern Ireland are still to be confirmed.
The following facts and tips have been written to help young adults and their parents/carers as they negotiate the process of applying for PIP. The aim of this publication and the support services available from the Little Hearts Matter team will be to improve adults’ access to Personal Independence Payment support enabling them to achieve as independent an adulthood as possible.
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 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.
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.