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.
If you are still in the planning stages for the move to secondary school see LHM’s Transition to Secondary School booklet.
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;
- 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.
- Getting to and from school
- Developing independence
- Day-to-day challenges
- Challenges to being able to learn
- Psychological effects of congenital heart disease
- Key terminology and people
- Further information
Getting to and from school
If getting to school poses a physical challenge to a young person with half a heart it is important that their needs are highlighted in the ‘Mobility’ section of their Disability Living Allowance form. It is important to remember that, although they may be able to catch a bus to school, the energy they use may reduce the energy levels that they then have to learn in school.
School transport may be provided if a child is in receipt of the mobility part of Disability Living Allowance or if the best school to meet a child’s needs is out of your local catchment area. Policies for transport vary by council.
The council will provide travel assistance for children who live in their area, are of compulsory school age and attend a qualifying school. They must either live more than the statutory walking distance (two miles for primary, three miles for secondary) away from the qualifying school or be unable to walk the statutory walking distance to the qualifying school due to their special educational need or disability.
Qualifying school means the nearest appropriate school which can meet the child’s needs. The council will explain what supporting information they need to consider your application. There are a number of ways they may offer support with transport; a seat on a vehicle such as a taxi is not guaranteed.
One of the most important aims of education is to gradually build a child’s independence and an ability to learn enough to support their independent life in adulthood.
Each child’s ability to take on this independence is different. For some, the challenges of life at school are taken in their stride while for others it is more difficult, especially if they have a delay in taking on personal responsibility.
In secondary school, a great deal of emphasis is put on achieving independence. In Year 7, the children have to take on personal responsibility, such as time-keeping, remembering school books, handing in homework, buying meals and care of their PE kit.
It is important for the children to learn all of these things, but the teaching staff also need to understand that it may be a challenge for them.
Careful planning for each day at school the night before can help the children cope with each day. The use of the homework book, email links and regular communication with form tutors will help the children to keep up with their peers and reduce their stress levels.
Where necessary, a formalised review process can be put in place and it is often helpful within the first half-term after the move to secondary school.
Building each young person’s confidence is really important, especially if they need to learn to speak up for themselves. Include your child in everything that you are doing for them in school. Allow them to build their own voice so that they can talk to the teachers with confidence. Encourage them to get involved in activities that will allow their confidence to grow, for example, drama, singing, team games (not physically too competitive).
LHM’s experience is that many of the children work to find a place within their friendship group where they are confident – they may become the class clown!
Get involved with interesting things at school that will allow you to find lots of new interests. Have confidence to politely speak up for yourself.
This section explains how your child’s heart condition may affect their secondary school education. Schooling should be a positive experience and so it is always a good idea to approach teaching staff in a positive way.
Teachers can be very concerned when they hear that a child has a problem with their heart. It is important to clearly set out any challenges whilst helping them to have confidence in the abilities of your child; this will enable them to look for positive solutions to any problems.
When explaining your child’s heart condition to a teacher it is important that they have a general understanding of:
- The condition and treatments.
- The short- and long-term medical effects of the condition, e.g. that your child will always have only half a working heart.
- The day-to-day medical needs of the child, e.g. the effects of medication, how to treat breathlessness, the limitations of exercise tolerance in relation to the school’s layout as well as physical lessons like PE and drama.
- The effects that the condition has on normal child development and your child’s ability to learn.
Getting the most out of every day at school is partly up to the teachers, but it is also up to you. Get involved with the discussions about your health and the school day, and make sure that the teachers know about the challenges that you feel you have in school. Be positive about school, but honest with yourself and the teachers about things that you find difficult, both because you get tired, but also if you feel your heart is working too hard. Make sure you enter into every lesson positively, but tell the teacher if you are struggling.
You can ask for an LHM Information Filofax and a further copy of this booklet for the school to keep to help explain your child’s needs.
Individual Healthcare Plans
Every child with a long-term disability is entitled to an individual Healthcare Plan. This document sets out each child’s medical and physical needs within the school environment. It also includes information on what to do in a variety of medical emergencies.
It is important that the hospital specialist nurse and cardiologist, as well as the school nurse, community team (if they are involved) and any lead teaching staff have an opportunity to work with you to create a comprehensive plan of care for your child whilst they are in school. For more information refer to the LHM Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition booklet.
When your child is unwell
It is important that, as parents, you are always thoughtful about when to send your child to school.
There will be some days when you are unsure as to how well your child is. If you have any doubts that your child can cope with a day at school, either arrange to speak with the school at midday to check their condition, or keep them at home.
Although it is always important that your child is able to attend school as much as possible, it is very difficult for them to achieve if they are unwell and it is also difficult for the teacher to support them adequately in the classroom.
If your child misses a great deal of school because they are regularly unwell or very tired, talk to your son or daughter and the school about how their day and their week can be balanced.
If long periods of absence, due to ill-health or hospitalisation, are anticipated then tell the school. If a child is away from school for an extended period, home tuition can be organised through the local authority.
Outpatient appointments and medical tests
Throughout your child’s life they will need to be seen at the hospital for check-ups and possible treatment. It is important that all teaching and support staff understand that this is a normal part of your child’s life. Their absence from school should not be questioned with them in class and they should be supported in catching up with any work missed.
If a longer stay in hospital is planned, it is important to also plan the absence from school and the return to school.
Returning to school, especially after a long absence, needs careful planning with a slow introduction back into the classroom and an understanding that the hospital experience may have affected your child’s confidence. Work with teachers to gradually build your child’s confidence in being back in the school environment.
Make sure that teachers know the days you will be away from school for a planned trip to see the doctors. It is good to get into the habit of politely telling each teacher whose lesson you will miss that you will be away that day.
Even if mum or dad have sent a letter it is good to speak to the teachers directly.
Remember to highlight that homework may not be handed in on time if it is due on a day when you are at the hospital. Make sure that your mates understand that it is not a fun day out.
As independent living will be encouraged in secondary school, children who take medication during a school day will be expected to gradually take on self-medication. The school nurse or another designated member of staff will be assigned to help children taking medicine.
Ask the school for their medication policy and ensure that they understand the daily medication needs of your child.
The effects of medication during a school day
If your child is on medication that might affect their school day, it is important that all of their teachers understand the implications so that they can support them.
Ask the school if they have a hand-held information slip or medical card that can be produced in class to affirm their need for support.
If your child is taking a diuretic (e.g. Furosemide) in the morning, they will need to be able to go to the toilet throughout a school morning. It is important that the teachers know that there will be some urgency for your child to go to the toilet and they need to be allowed to go when they ask to be excused.
Children on Warfarin are more susceptible to bruising and bleeding if they bump or cut themselves. Teachers, support workers and playground staff need to be aware of the added risks to a child and understand the way to manage any bleeds. See LHM’s Living with Anticoagulation booklet.
It is important to explain that your child may also have other conditions where school medication will be necessary, such as inhalers for asthma.
As you grow up it is important that you begin to take on the responsibility for taking your own medications and understanding what the medicines do to keep you healthy. As you go through school, talk to your parents or carers, or the doctors and nurses at the hospital about your medicines and why
you need to take them.
It is also really important that you understand about side effects or risks. For example, if you are on Warfarin, what should you do if you cut yourself, or you fall over in the playground?
Most congenital cardiac specialist nurses and anticoagulant nurses recommend MedicAlert bracelets for children with single ventricle heart conditions, especially if they are taking Warfarin. A range of designs are available.
As well as the obvious benefit in the case of any emergency, many parents report that the MedicAlert bracelet is a useful way of discreetly reminding teachers of your child’s heart condition.
This bracelet should not be removed during a PE lesson as it is one of the high-risk activity times. This may need planning as the wearing of jewellery is not usually allowed during sports lessons.
The physical effort of being at school
Every day at school will present different physical challenges. These will be discussed in more detail below, but it is important that teachers know how to deal with a child who has become exhausted at school.
They may show signs of breathlessness and cyanosis (blueness), especially following exercise which may be simply walking between classrooms or climbing a flight of stairs.
- Firstly calm them down as they will be frightened that they can’t breathe properly.
- Sit the child upright to allow for good lung expansion.
- Encourage them to breathe in a slow rhythm; as this will make each breath more effective.
- Seek first aid help.
- If there is no improvement in their condition, initiate the school plan to gain more professional help by calling for an ambulance. At the same time call parents or the school contact person.
- Do not put the child in a car to drive them to seek help.
- It is important that teachers have the right information about the child’s medical care to take with them to the hospital.
Remember to include details of physical needs and how to treat problems in the Healthcare Plan.
Many children with single ventricle heart disease have some sort of restriction with their physical abilities in comparison to their peers. Having only one heart pump doing the job of two will restrict them, but it should not exclude them from taking part.
Children with single ventricle heart conditions are usually able to participate in PE lessons, and should be encouraged to do so. However, their exercise tolerance will be lower than that of their peers, and they may be unable to participate in a whole lesson. Provision should be made to allow them a rest when they need one. If PE is being played outside, provision to keep the children warm must be made during times of inactivity, but equally they must not overheat or become dehydrated.
Sport becomes more competitive in secondary school and many children with cardiac problems would like to be able to compete with their peers. This makes the organisation of PE lessons a challenge for an inclusive teacher. It is important that you and your child work with the school to ensure that they are able to reach their full physical potential in PE.
The bleep test
Many schools encourage children to take part in the 20 metre multi-stage fitness test or bleep test. This is a fitness test that tests the fitness of children or young adults taking part in PE. It is also used by some sports clubs and other organisations such as Cubs and Scouts. The test starts slowly with a child running between posts or stages 20 metre apart with a bleep sound setting off the next run. The time between each bleep gets shorter and shorter with children running more and more quickly between each stage. In theory, children can stop when they get tired and so some children with only half a heart like to be included in the early stage of the test, stepping away when they get breathless, or at a pre-agreed limit.
But LHM would like to put out a warning. This is a competitive activity. Children may be put into teams or just race themselves against the clock.
Recently one of LHM’s young members collapsed whilst undergoing the bleep test at school because she pushed herself to keep up with her friends beyond what was safe for her heart. She is now OK but was rushed by ambulance to hospital and was still off school nearly a week later.
The LHM team is very keen for children to get involved with as much activity as possible but competitive exercise can pose a danger for children who do not listen to their heart or lungs. Remember the golden rule.
If you become so breathless that you can’t talk… STOP.
For more information see the LHM Sport and Exercise booklet.
It is really important that you have a chance to take part in PE because sport is good for your whole body and helps to keep you fit, but getting involved must be balanced with not pushing yourheart beyond where it feels safe.
Always take a grown-up attitude to getting involved, have a go at a gentle pace to start with, then talk to the teacher when you feel that you are pushing your body too far.
Remember the ‘GOLDEN RULE’ – if you are too breathless to talk then you are pushing your body too far, so you must stop.
Other physical activities may cause similar issues to PE, for example, drama, dance, science and home economics lessons, or any activities involving standing up for long periods. The same support considerations should be incorporated in every lesson.
Moving between classrooms
Secondary school education is spread throughout the school. Many classrooms are in different buildings or require movement between floors. A careful assessment of each child’s ability to get around school must take place and thoughtful solutions to any problems sought. For example, extra time can be allowed to move between lessons, classrooms can be changed around for lessons where stairs are a restriction, and in some schools the use of the lift can be arranged. A buddy system could also be put in place for friends to help carry books between classrooms.
Remember that it is often difficult to see all of the challenges before a child starts school. Planning a meeting with the teachers to discuss how things are going just before the October half-term will give everyone a chance to re-evaluate the Healthcare Plan and change any provisions in place that do not meet your child’s aims.
It is really important that you have a chance to get great things out of every day at school. It is not your fault that your heart is not as fit as some of your friends. They will have challenges with different parts of their school day as well as you.
It really is OK to ask for help if you find the stairs tough, or the time given to get from one lesson to another is too short. If you don’t tell the teachers when you have a problem, they won’t know and won’t be able to do anything about it.
In many schools added activity in sport and games is offered after school or in the holidays. Although the added energy needed to take part in school clubs may need to be balanced, many children can take part in music, drama, computer skills, literature, language, cookery, board games, writing (on a computer if necessary), science and technology clubs. The same inclusive attitude needs to be extended to extra-curricular activities as to a normal school day.
Life when you have half a working heart is a balance. Make sure you learn, but at the same time having time for fun and games, is very important.
Part of growing up with a heart condition is learning how to balance getting the most out of school and enjoying it.
Talk to your mum and dad and your teachers when you are finding the balance difficult.
Throughout a child’s school experience there will be opportunities for trips away from the classroom.
It is important that teachers think about the needs of children with disabilities in their class as they plan such trips, as it should always be possible to include them in these fun educational activities.
What questions should you ask?
- Will extra staff be needed to support your child’s physical needs,
e.g. pushing a wheelchair, accessing a toilet or time for rest?
- Will staff be informed of any special needs and treatments?
- What is the medical provision in the area?
- Will your child be able to access all areas of the site to be visited?
- Will your child need medications whilst away?
- Will your child be safe on the activity, especially if it is a physical activity?
Some trips involve an overnight stay, so it is important to ensure that children with special physical needs have help in coping with the challenges of staying away, activity beyond the school day, different diet and sleep patterns, the need for added concentration and the need to be more independent, which is often the aim of the trip.
It is really helpful if you and your child work with teachers, and if necessary, the staff at the venue booked for the visit to ensure that everyone knows what challenges the children might face and, most importantly, what can be done to get around the problem. All trips are now risk assessed and the provision for children with disabilities forms part of the assessment.
This should be a very positive experience for your child and they should be as excited as their friends about the event.
For more in-depth information on planning a trip see LHM’s Travel and Trips booklet.
It is great to have a chance to go away with your school friends. Remember that it is your responsibility, with the teachers, to make sure you keep safe when you are on a school trip. Don’t push your heart beyond where it feels safe, remember when to take your medications and tell the teachers if you do not feel well.
They will have a plan of action to get you the help you need.
This can be a problem, especially during the winter months, but even in the summer on a cold damp day, children get cold. It is useful to make sure your child and school staff understand how important keeping warm can be, and think of suitable extra layers. This is of course increasingly difficult as the children succumb to the influences of their peers. Gradually each individual child will need to take on personal responsibility with encouragement from home and school.
On particularly cold days, staying inside at break and lunchtime may be the most sensible solution. There is often a designated area within the school library or classroom where children can stay in secondary school.
Remember as you grow up you need to take more and more responsibility for your health. Your heart condition makes you unique: listen to your body and make sensible decisions about how to keep safe and warm.
Children born with only half a functioning heart have a greater need for calories. Some of them are used to power their body, which works inefficiently, and some for growth.
However, it takes energy to eat food. To ensure that each child can cope with a busy day at school it is important that they eat little and often.
Planned snacks should be available throughout the day. As many schools are now employing a healthy eating protocol, it is important to ensure that teachers see calorie-filled snacks as part of your child’s treatment. Their school day will be far more productive if planned snacks are allowed.
It may be helpful if you provide the snacks each day. Bear in mind the healthy eating policy; dried fruit, sandwiches and cereal bars are healthy but filled with calories.
Some children need extra fluids, for example, if they are taking diuretics, e.g. Furosemide, or to prevent the risk of blood clots.
It is sensible to discuss with the school their policy on drinking within class. Many schools now encourage all children to drink water from a water bottle throughout the day. This should be encouraged for cardiac children as dehydration can cause complications.
In secondary school most children buy their lunch from the school canteen or they bring a packed lunch from home.
Peer pressure often leads to a swift lunch break with much of their food being left as they rush out to the playground with their friends. Unlike junior school there are few lunchtime supervisors. The children are encouraged to be independent at meal times.
To ensure that your child has enough food over the day you might like to think about some of the following suggestions.
- Ensure that your child has a good breakfast. Some schools provide breakfast.
- Suggest that they eat a snack at break times. Some schools provide breakfast at first break and have healthy snack machines.
- Discuss lunch choices: salads are healthy but they do not provide enough calories for the afternoon activity. Pasta dishes, rice dishes, jacket potatoes are easy to eat and, with added sauces and vegetables, are filling and provide an energy boost.
- If your child takes a packed meal it is often helpful to ensure that it is filled with easy-to-eat food. Small sandwiches, pieces of cheese, cubed vegetables and pre-cut fruit. Biscuits and chocolate may not be allowed, but cereal bars and dried fruit
- The children will need a snack for the trip home as they are often starving as they leave school.
Encourage your child to take control of their meals at school but also instil in them that, where there is choice, there needs to be responsibility.
If the school has a nurse, make sure that they are aware of the nutritional needs of your child.
If mum and dad have worked hard with the school to make sure that you can have a drink when you need one or have an energy-filled snack, don’t forget to have them!!
Everyone needs energy to concentrate. Children with complex heart disorders have lower energy levels than their peers; they often have difficulties concentrating, particularly towards the end of a school day or towards the end of a week. Some children show this lack of concentration by fidgeting, which can make it hard for their teachers to understand the real problem, and it can be interpreted as disruptive behaviour (sometimes it might be, of course).
In junior school the day is structured to include most core lessons in the morning but that will not be the case in secondary school. A full lesson timetable will spread all subjects over the week, and sometimes the timetable is spread over two weeks, allowing for longer lessons.
A lesson of longer than an hour can be a struggle for children who already have problems with concentration. A planned break for a rest and water can be scheduled into each lesson; this will benefit all the children in the class.
If the tiredness and lack of concentration become an issue, it is important that you and your child work with the school to find a solution. Sometimes it can be helpful to plan for a subject to be dropped, allowing for free lessons. Planned afternoons off can be helpful, although work needs to be caught up. Planning a balance between achieving at school and becoming too tired to enjoy and benefit from school often takes time, and requires a good relationship between the child, parents and the school teachers.
Remember that key lessons are maths, English and science. They take a great deal of brain power so save some energy to help you concentrate in those lessons.
Have energy boosts set through the day like healthy but energy-filled snacks to have at break times or between lessons.
Don’t waste valuable energy mucking around during lesson time; save the fun and games for break time or after school. If you are struggling because you are tired talk to your mum and dad and the teachers.
Having a heart condition is not an excuse for mucking around. Teachers will lose patience with you and start to forget your heart condition if you don’t play by school rules.
Homework is an essential part of secondary school life; it offers a continuation and consolidation opportunity for lessons taught in the classroom. For some children, the time needed for homework adds to their tiredness and stress. Teachers are usually more than happy to allow an extended plan for homework, allowing a week for it to be completed.
If the children become worried or stressed about the amount of homework they receive it is important to work with the school to ensure that the children can take part in homeworking, but in a positive and productive way. Use of the homework diary to communicate how much effort was put into homework ensures that both the teaching staff and parents work together to support, not stress the child or young person. Often an email communication can be set up to ensure that parents and teachers can quickly respond to concerns.
Homework might seem like a pain but it is a very important and grown-up way of working. Having a heart condition does not mean that you can be let off homework, but it does mean that everyone, including you, needs to think about the best way to get homework done so that you can do well in school but not exhaust your heart.
It is very important that young people get used to the exam structure that they will need to undertake all the way through school. Ongoing testing and timed essays all help pupils learn about planning and timing. For a pupil who has educational challenges it is a really good time to be able to assess their strengths and weaknesses. Any concerns should be raised with the school SENCO as the school years progress so that support provision can be introduced.
For some that will mean extra exam time so that a pupil has time to plan what they are going to write. For others there will be aids to help them get their answers to exam questions down on paper or on a computer. Some pupils will need to leave the exam room to visit the toilet because of medications, so will be allowed to stop the clock, while others may need to start a second exam of the day later than everyone else to allow them to rest between the tests.
Any exam concessions are applied for by the SENCO or specialist assessor to the Joint Council for Qualifications (JCQ). This should be done well in advance of the final exams and should be part of your child’s normal way of working, for example, using a laptop for subjects that require writing at length.
Exams in hospital
If you are in hospital when you are due to take important exams such as GCSEs, please talk to the staff from the hospital school. They are very experienced at supporting children in hospital and will help you to make a plan, then liaise with your school if necessary to administer the exams appropriately, taking account of your health and needs at the time.
In some schools GCSE choices will be made in Year 8 so that the exam curriculum can be started in Year 9. For more information on GCSE choices see the LHM Key Stages 3 & 4, Secondary School, Years 9 – 11 booklet.
How will we ensure that the school team understand what is wrong with my child’s heart?
Under new statutory guidance every child with complex heart disease should have a Healthcare Plan – a document that identifies the level of support your child needs in regard to their health throughout the day in school, signs and symptoms to watch out for and what to do in an emergency. Are they on anticoagulation, do they get arrhythmias, do they become tired and breathless on simple exercise, like walking up the stairs? This information should be provided by the specialist congenital cardiac nurses from the congenital cardiac unit and passed on to the designated school nurse and the teaching and support staff at the school.
Statutory Guidance for Managing Medical Conditions in School sets out the rules for this area of care. More information can be found by using this link – www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions or by asking for the LHM Support for a Child with Special Educational Needs within Nursery, School or Further Education booklet.
Secondary school lessons in Year 7 are planned to give each pupil a broad understanding across the subjects.
More time will be spent on core subjects such as English, maths and science, but the introduction of the humanities, languages and business lessons, as well as practical subjects like art, drama and design technology will allow your child to explore their strengths whilst building on the foundations of learning that they bring from junior school.
Your child will be introduced to life skills sessions (these sessions are called a number of different things such as Personal, Social, Health and Economic education (PSHE) or Get Wise Days). These are invaluable lessons where they will explore how to manage money, think about insurance, sex education, drink and drugs. It is important for your children to attend these lessons with their peers, but it is also important for them to realise that the general advice given may not relate to their own circumstances.
It can be helpful for children and parents to have a breakdown of these sessions so that they can ensure that they have any additional information on sex, drugs and drink to add to what has been taught in school. It can also be helpful for the life skills teachers to have an understanding of any differences so that they can support your child in class without making them appear different.
Challenges to being able to learn
Repeated surgery, low oxygen levels and regular interruptions of normal family life for hospital appointments lead to varying degrees of developmental delay. There may be evidence of delay in the development of fine and/or gross motor skills (how a child holds a pencil or balances on a beam).
If a child is showing that they are having difficulty with a physical or mental activity that should be within the developmental range of their peers, it is important that they are offered the opportunity of a full educational assessment.
It is very important for parents and teachers to work in partnership to identify, and then support each child to ensure that they reach their full potential.
Teachers in your child’s junior school will hopefully have identified any problems that they think will still be present as your child transfers from one school to another. Any support mechanisms should be put in place and transfer with your child. It may be necessary to formalise the support structure through an individual Healthcare Plan or further formal educational assessment.
Good liaison between schools via the special educational needs co-ordinators (SENCOs) and careful forward planning can ensure that the move between schools or class years goes smoothly. Pre-transition visits can help both the child and you as parents have confidence in the move.
Support with learning
Many children with complex congenital heart disease require support to aid their learning in school. Most pupils will have had those needs identified during their primary education and should be reassessed in the first part of secondary school.
If a child, parent, teacher or school team identify that a pupil may have special educational needs they will need to organise a Learning Difficulty Assessment, which is normally conducted by the special educational needs co-ordinator (SENCO) in school and may involve other professionals.
If this assessment identifies areas of support that will help a child achieve within school, they will be entitled to extra help to reach their learning potential.
This is a tiered plan that ranges from an in-house support provision to added external funding if a full Education and Healthcare Plan is awarded by the local authority.
Over the coming years this system will replace the Action Plus and Statementing process and will revolve around added funding rather than hours of added support provision.
Further guidance for this provision can be found in detail on www.gov.uk/children-with-special-educational-needs/extra-SEN-help and within the LHM Support for a Child with Special Educational Needs (SEN) within Nursery, School or Further Education booklet.
If a young person with only half a heart does not have any or all of these assessment and support tools in place, and the young person or their parents have identified that there are issues with learning then they need to make an appointment to talk to the schools designated special needs co-ordinator (SENCO) about their relevance in their individual case.
Psychological effects of congenital heart disease
It should never be underestimated how individual children are affected by the restrictions that their heart condition creates.
Encouraging each child to become confident in their areas of strength rather than always stressing their weaknesses will help to strengthen their self-worth and reduce their frustrations. For some children, every physical and educational restriction is seen as a challenge, and they are happy to work to solve any problems. For others, the fact they are ‘different’ from their peers is a problem, especially if they are restricted in an area of school where their friends excel, for example, sport.
Fears for their future health and physical ability are magnified through the physical and emotional changes in adolescence. It is important for the school to understand why a child with a complex heart condition may rebel more than their peers, why they may appear less cooperative on occasions or why they may withdraw or lose self-confidence.
It is important for your child to build a relationship with teachers that they trust. As well as talking to you as their parent, they may also need someone to talk to about school-related issues. They should be encouraged to express their worries and woes and work with the school team to find solutions to their problems, always remembering that there may be issues where compromise is the only way through.
The school’s rules and punishment scheme must be understood and acknowledged, but if poor behaviour is reprimanded through a detention system, it must be planned that your child’s physical condition is not compromised through an extra evening at school.
It can be really useful to find out what the school’s policy is for dealing with children’s worries and woes. They may well have a pastoral care team who could prove helpful.
Psychological effects of hospital visits
Every time a child visits the hospital it brings their heart condition to the fore. Throughout their school life, children with heart problems want to appear ‘normal’ to their peers. Hospital assessments and treatment remind them that they are not as fit as their friends. An increasing awareness of their mortality can create an added strain throughout their secondary school years.
It is helpful if the school can take an active part in explaining congenital heart disease throughout the school, although it is important not to make the child with the heart condition a target for bullying or questioning.
To help your friends learn more about congenital heart disease why don’t you ask to do a talk in the classroom or assembly, or organise some fundraising for Little Hearts Matter so more staff and pupils understand what having half a working heart really means?
Bullying is a common problem in school. Children don’t need a reason to pick on someone they perceive has a weakness. It is very important that parents look out for signs that their child may be being bullied at school:
- Unexplainable injuries (bear in mind that if your child is on Aspirin or Warfarin, this may just be bumps and bruises from the playground).
- Lost or destroyed clothing, books, electronics or jewellery.
- Changes in eating habits, like suddenly skipping meals or binge eating. Children may come home from school hungry because they did not eat lunch.
- Difficulty sleeping or frequent nightmares.
- Declining grades, loss of interest in schoolwork, or not wanting to go to school.
- Sudden loss of friends or avoidance of social situations.
- Feelings of helplessness or decreased self-esteem.
- Self-destructive behaviours such as running away from home, harming themselves, or talking about suicide.
Of course, many of these signs may point to a change in their medical condition, so don’t jump to conclusions, but do take time to chat to your child about their day or week at school. Talk about their friends and generally talk about bullying.
Every school has to have an anti-bullying protocol – a set path through how they will deal with a bullying problem. If you have any concerns, go and talk to your child’s tutor or the pastoral care team.
Moving into big school and having to make friends with new boys and girls can be a challenge. If you are finding the world of school tough or if you feel you are being bullied, don’t be afraid to talk to your mum and dad or big sister or brother about it. You can also go and speak to your form tutor or a teacher that you trust in school. Don’t sit at home worrying about things that can be made better.
School offers great opportunities and can also be fun. It is a place to make friends and create a social network as well as a place to learn new things and begin to gain some independence. Every child should be seen as an individual as every child has different needs. Having a heart condition should not stop you from gaining something from school.
Don’t let your heart stand in your way!
Key terminology and people
A specialist doctor who is an expert in looking after children with long-term health needs and who will link with other medical and educational professionals.
Congenital Cardiac Specialist Nurse
A nurse based at your child’s heart unit, who can help with many aspects of life at home, including education.
Education Health and Care Plan (EHC Plan)
When added educational support has been identified, formally assessed by the LA and a formal plan outlining education health and social care support has been set in place.
Healthcare Plan (HCP)
A document held in school relating to your child’s medical condition(s), 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.
Individual Education Plan (IEP)
Details how the school will meet the needs of your child, for example, interventions and support they may receive.
Key Stage 3
Also known as KS3, this is the phrase used for the three years of schooling that cover Years 7, 8 and 9 (when your child is aged between 11 and 14).
Key Stage 4
Also known as KS4, this is the phrase used for the two years of school education which incorporates GCSE education in Years 10 and 11 (when your child is aged between 14 and 16).
Local authority (previously Local Education Authority or LEA).
My Support Plan (MSP)
Similar to an IEP but more detailed and usually a prerequisite to applying for an EHC Plan.
The government agency which inspects schools, early years settings and LAs in order to improve standards of education and childcare.
Provides support for children’s medical needs in school and will help you to draw up a Healthcare Plan.
SEN – Special Educational Needs
Describe the extra or different help that a child with learning difficulties needs in pre-school settings or school.
SENCO – Special Educational Needs Co-ordinator
Person responsible for the setting’s/school’s special educational needs policies and children.
Special Educational Provision
When a special educational need has been identified, the school-based provision plan sets out the added support for each individual child.
IAS Services (previously known as the National Parent Partnership Network)
The Information, Advice and Support (IAS) Services Network provide information, advice and support to disabled children and young people, and those with SEN, and their parents. They are statutory services which means there has to be one in every local authority.
Advisory Centre for Education (ACE)
Independent charity offering advice to parents about state education in England and Wales.
Tel: 0808 800 5793
Independent Parental Special Education Advice (IPSEA)
Free independent advice on all aspects of special education.
Tel: 0800 018 4016
Children and Families Act 2014
This act, adopted in 2014, sets out the provision for children with disabilities within all areas of their life.
Equality Act 2010
The disability section of the Equality Act is a law to end discrimination against people with disabilities and sets out their rights in employment, property, education and use of transport.
Please contact Little Hearts Matter for further advice, support and signposting.
Updated: April 2016
Review due: April 2019