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Education
We have produced three information booklets to help families positively face the challenges that single ventricle heart disease creates for children in school. More information about each booklet can be found below. You can download the booklets from our Publications page.
Depending on funding, we hope to be able to produce a booklet on secondary education in 2011 but in the meantime, if you have any queries about education please do not hesitate to get in touch with us. You might also wish to visit the
Useful Links section to find out further information.
Infant Booklet
This pack is part of a series helping children with single ventricle heart conditions to make the most of their education, and covers Early Years and Infant School. Much of the information is also applicable to pre-school and childcare settings.
The key aims of this pack are to make parents aware of what to do and when, what to expect / what to request, and to give them the tools and confidence to ensure their child is appropriately supported. In a recent membership questionnaire, one member commented "because the children look fine, they think you're a paranoid mother", - we hope this pack will help families to overcome this kind of reaction by explaining the help our children may need.
If any element of the booklet is not clear, please do not hesitate to contact the Little Hearts Matter office on 0121 455 8982. You are also very welcome to phone the office to discuss your child's individual circumstances. We can put you in contact with other parents to share experiences and solutions if you would find this helpful.
You can order or download this booklet from our Publications page.
Junior Booklet
Going to school is such an important part of every child's life. The education gained during all the stages of school provides stepping stones to their eventual independence.
Ensuring that each child fulfils their personal potential takes thoughtful preparation by parents, guardians and teachers. If the child has a complex heart problem a great deal of research and planning is needed.
This booklet has been developed as one in a series of resources to help families positively face the challenges that single ventricle heart disease creates for children in school.
In this book we will concentrate on the middle years in school and explore the transition between Key Stage 2 (Years 3, 4, 5 and 6) and Key Stage 3 (senior school).
In the meantime, if you have any questions regarding education, please call the office on
0121 455 8982 or
Contact Us via email.
You can order or download this booklet from our Publications page.
Transition to Secondary School
As children develop and age they have to take steps up 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 schools.
Every school is run differently according to the ethos of the school's head teacher and Board of Governors, although the curriculum will be national and educational support services will be dictated by the Local Authority.
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 home life.
In the meantime, if you have any questions regarding education, please call the office on
0121 455 8982 or
Contact Us via email.
You can order or download this booklet from our Publications page.
Developing a Healthcare Plan
Education is so vital to all children, and every parent will want to ensure that their child’s heart condition does not become a barrier to them accessing a good education in order to move towards an independent fulfilled life as an adult.
Every child with a single ventricle heart condition should have a healthcare plan in place in school. Some children need support with their education, however many manage very well in mainstream schools with some thoughtful adjustments to suit their needs.
A healthcare plan is a way of making sure that medical information about your child is available in an easily accessible and understandable format. It is a document held in school identifying the level of support your child needs throughout the day, signs and symptoms to look out for and what to do in an emergency. It should be written in non-medical language which can be understood by a range of school staff. The healthcare plan should be used as a tool to help everyone to understand your child’s needs.
When developing the plan, it can be a good idea to go through a typical school day and write down every aspect of care which your child needs which is different to their peers in any way. This section needs to include all the common challenges for the children within their day at school: ability to exercise, need for energy-filled snacks, coping in cold weather, concentration levels, homework, etc. The plan should also include information on your child's diagnosis, treatment plans, medication (and effects) plus any specific limitations your child may have. The plan should also set out the best course of action in the case of an emergency, for example:-
• if a child on anti-coagulation therapy should fall;
• if they become uncontrollably breathless;
• if they complain of chest pain.
What action should the school take?
Who should the school call?
It can be really helpful to have a laminated information card with a plan of the actions needed if a child falls ill in school. When displayed on the school office wall, the PE department, the staff room and in any relevant classroom it allows school staff easy access to the emergency information. It is also useful to have the child's medical information available to take to hospital in the case of an emergency.
If other health or social teams are involved with a child's care it is important that they are able to add to any health plans or education plans. For example a physiotherapist may have exercises that could be incorporated into a PE lesson. Or a psychologist may advise that a supportive approach to hospital should be introduced into the classroom.
People who can help with writing your child’s healthcare plan are the health visitor (for under 5s), the school nurse, your community nurse (if you have one) and your Cardiac Liaison Nurse. Once the healthcare plan is written, the health visitor or school nurse should then talk it through with the school staff, and provide any training necessary, such as administering medications.
Little Hearts Matter can provide you with sample healthcare plans used by other parents – you will of course need to remember that every child is different, but some of the formats and ideas used by other families may be helpful. A sample of a blank government format healthcare plan can be downloaded here (opens in a new window).
Please don’t hesitate to contact the LHM office if you have any queries at all about any aspect of education.
Page last updated: Feb 2011