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 fulfills their personal potential takes thoughtful preparation by parents, guardians and teachers. If the child has a complex heart problem a great deal of added research and planning will be needed.

The 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 section 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).



Whenever a child moves between schools or changes class it is important to revisit the needs that the child will have in their new environment, and to think how those needs might change.

It is often useful to talk to current teaching staff to ascertain if they think that your child may have extra needs, either physical or educational, but it is also very important to concentrate on what your child is able to do so that any support in school allows him or her to develop interests and skills.

Compile a list of areas where you feel that your child may need added help and support and use it as the basis of conversations with teachers as you plan your child’s move within school.

Teachers within junior and middle schools are usually very supportive of each individual child and will normally work with families to ensure that each child gets the most out of every day at school.

Questions to ask yourself

  • Does your child need help getting around the school?
  • Do they need help or special provision at break-time?
  • Do they need medication in school? Will their medications affect any part of their school life?
  • How do they cope with physical exercise?
  • What care do they need if they feel/become poorly at school?
  • How do they cope with homework?
  • Do they have long periods away from school?
  • Do they need to visit the toilet during class time?
  • Do they have problems with concentration?
  • Do they have special dietary requirements?

Who do I need to speak to in school and when do I need to see them?

It is always useful to see the team that will be teaching and caring for your child in the term before they move class.

This team should include: the form teacher, special educational needs co-ordinator (SENCO), school nurse, classroom assistants and any teachers who take the class for extra lessons. It is also important to ensure that lunchtime assistants and peripatetic tutors (visiting teachers) know about your child’s needs. A meeting with the head teacher should also be arranged to ensure that all staff are aware of your child’s condition and particular needs.

What will the teacher want to know?

Most teaching staff are very concerned that each child will be safe in school. The mere mention of heart disease often causes staff to worry that a child will have a heart attack.

Ensure that you discuss what the risks are for your child and also clearly state what they are able to do and what signs there will be if they fall ill. It is helpful to create links between the school team and your specialist nurse especially when drawing up your child’s Healthcare Plan.

All children with a single ventricle heart condition have long-term medical needs and therefore must have a Healthcare Plan in place in school. For more details see the LHM Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition booklet.

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Day-to-day challenges

This section explains how your child’s heart condition may affect their Key Stage 2 school education and discusses potential problems and their possible solutions. Schooling should be a positive experience and so it is always a good idea to approach teaching staff in a positive way.

Medical needs

When explaining your child’s heart condition to a teacher it is important that they have a general understanding of:

  • the conditions and treatments;
  • the short- and long-term medical effects of the condition, i.e. that your child will always have only half a heart;
  • the day-to-day medical needs of the child, e.g. the effects of medication, their exercise tolerance and how to treat breathlessness;
  • the effects that the condition has on normal child development and on your child’s ability to learn.

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 has been missing a great deal of school because they are unwell, talk to the medical team and school about balancing their days and booking days out for recovery where small amounts of work can be done at home.

If long periods of absence from school are anticipated, it is important that home tuition is arranged. Please refer to www.gov.uk/illnesschild-education for up-to-date information on the responsibilities of the school and the local authority in making these arrangements.


Where possible, it is important that children take their medication whilst at home, but when a midday dose of medication is necessary it is important that you as parents talk to the school about their policy for giving medication.

Normally teachers do not administer medication, but either a school nurse or classroom support member of staff may take on the responsibility to give the medication.

They will need clearly labelled bottles (original packaging and label) and clear instructions as to when the medication needs to be given.

It is often helpful to ask the doctor to make out a separate prescription that is available for school.

Managing medicines on school premises

The rules about the management of medicines in school have been updated as part of the ‘supporting pupils at school with medical conditions’ guidance within the Children and Families Act 2014.

Here is an extract from the current guidance for schools.

  • Medicines should only be administered at school when it would be detrimental to a child’s health or school attendance not to do so.
  • No child under 16 should be given prescription or non-prescription medicines without their parent’s written consent – except in exceptional circumstances where the medicine has been prescribed to the child without the knowledge of the parents. In such cases, every effort should be made to encourage the child or young person to involve their parents while respecting their right to confidentiality. Schools should set out the circumstances in which non-prescription medicines may be administered.
  • A child under 16 should never be give medicine containing Aspirin unless prescribed by a doctor. Medication, e.g. for pain relief, should never be administered without first checking maximum dosages and when the previous dose was taken. Parents should be informed.
  • Where clinically possible, medicines should be prescribed in dose frequencies which enable them to be taken outside school hours.
  • Schools should only accept prescribed medicines that are in-date, labelled, provided in the original container as dispensed by a pharmacist and include instructions for administration, dosage and storage. The exception to this is insulin which must still be in-date, but will generally be available to schools inside an insulin pen or pump, rather than in its original container.
  • All medicines should be stored safely. Children should know where their medicines are at all times and be able to access them immediately. Where relevant, they should know who holds the key to the storage facility. Medicines and devices such as asthma inhalers, blood glucose testing meters and adrenaline pens should be always readily available to children and not locked away. This is particularly important to consider when outside of school premises, e.g. on school trips.
  • A child who has been prescribed a controlled drug may legally have it in their possession if they are competent to do so, but passing it to another child for use is an offence. Monitoring arrangements may be necessary.
  • School staff may administer a controlled drug to the child for whom it has been prescribed. Staff administering medicines should do so in accordance with the prescriber’s instructions. Schools should keep a record of all medicines administered to individual children, stating what, how and how much was administered, when and by whom. Any side effects of the medication to be administered at school should be noted.
  • When no longer required, medicines should be returned to the parent to arrange for safe disposal. Sharps boxes should always be used for the disposal of needles and other sharps.
  • If your child is on medication that has any potential effects on their normal behaviour or may have an impact on how the teachers manage your child, it is vital you inform staff as they will need to know how to support the child correctly.

The effects of medication during a school day

If your child is on medication that has any potential effects on their normal behaviour or may have an impact on how the teachers manage your child, it is vital you inform staff as they will need to know how to support the child correctly.


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. Some children use a card system to discreetly show their teacher that they need to go to the toilet without drawing attention to themselves.


Children on Warfarin or Aspirin are more susceptible to bruising and bleeding if they bump or cut themselves. Teachers, support workers and playground support staff need to be aware of the added risks to a child and understand the way to manage any bleeds. For more information about possible risks and how to manage them see LHM Living with Anticoagulation booklet.

It is important to remember that your child may also have other conditions where other non-cardiac medications will be necessary, such as inhalers for asthma.

MedicAlert bracelets

Most congenital cardiac specialist nurses and anticoagulant nurses recommend MedicAlert bracelets for children with single ventricle heart conditions, especially if they are taking Warfarin. Children’s designs on velcro straps are available, which are very suitable for this age group.

As well as the obvious benefit in cases of emergency, many parents report that the MedicAlert bracelet is a useful way of discreetly reminding teachers of your child’s heart condition.

This bracelet must not be removed during a PE lesson as it is one of the high-risk activity times.


Children born with only half a functioning heart have a greater need for calories. Some calories are used to power their body, which works inefficiently, and some for growth. Unfortunately it takes energy to eat food, so 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.


Some children need extra fluids; for example, if they are taking diuretics (e.g. Furosemide), if they are prone to constipation, or if it has been advised by their cardiologist to prevent the risk of blood clots.

If this is the case, it would be sensible to discuss with the school how they can make sure your child drinks enough throughout the school day. Many schools now encourage all children to drink water from their water bottle. However, not all children do this in reality, so you may need to ask a named person to make sure your child is drinking enough to keep them well.


As your child requires extra calories, eating plenty of lunch is very important. Many of the children have problems completing their lunch before going out to play. Lunchtime supervisors must encourage children to finish their lunch.

If children take a packed meal it is often helpful to ensure that it is filled with easy-to-eat food such as small sandwiches, pieces of cheese, cubed vegetables and pre-cut fruit. Biscuits and chocolate may not be allowed but cereal bars and dried fruit should be.

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. Allowing the children to rest until they regain their colour and their breath must be encouraged. If they do not show signs of recovery following a short period of rest it is essential that they are assessed by a medical team. Calling the ambulance to come to the school means that treatment will start straight away rather than waiting for a parent, or attempting to take the child to hospital in a teacher’s car.

It is important that teachers have permission to escort a child to the local medical unit and they will need a written information sheet with up-to-date medical and care needs for the child clearly set out to ensure that they can take the right information about the child’s current medical care with them.

To help set out all medical needs and treatments, a full Healthcare Plan must form part of your child’s school plan.


Everyone needs energy to concentrate. Since children with a single ventricle heart condition have lower energy levels than their peers, they often have difficulties in concentrating, particularly towards the end of a school day or towards the end of a week. Some children show this difficulty in concentrating by fidgeting, which can make it hard for their teachers to understand the real problem, and it can be assessed as disruptive behaviour.

It is important to discuss this possibility with your child’s school so that they can plan accordingly. If your child appears to be struggling, talk to the school about changing the way their classroom support works or ask about accessing support if it isn’t already in place.


Children need to be encouraged to participate in as much of school life as possible. They also need the opportunity, however, to have a good rest each evening to be ready for the next day. There may be some evenings when your child is too tired to study or to complete a set task and it is important that you notify staff if this is the case.

Teachers should be open to varying the type of task your child needs to complete or to extending the time required. It is important to balance your child’s educational development with their physical needs, so good communication between teacher, child and parent is essential.

Physical challenges

Many children with single ventricle heart disease have some sort of restriction of their physical abilities in comparison with 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. At this age, the idea of children finding their own limits may need some support. Teachers may wish to remind all children at the beginning of a PE lesson that resting when they are tired is fine.

It is useful to remember the exercise golden rule. If the child is unable to have a conversation with the teacher during exercise, they need to stop and rest.

If PE is being played outside, provision to keep the children warm during times of inactivity must be made; extra layers may be required.

On some days, if the children are particularly tired, they may need to do a different activity instead of a PE lesson, and the school should be prepared for this possibility. Explaining similarities with asthma can sometimes be helpful.

For more information refer to the LHM Sports and Exercise booklet.

Our main problem all the way through has been Andrew’s physical stamina and tiredness. This has gradually improved as he has grown up. As he matures he is learning his own physical limitations better and becoming less reliant on reminders to rest/stop to recharge.

Physical activities

Other physical activities may cause similar issues to PE, for example, drama, dance or any task involving standing up for long periods. The same support considerations should be incorporated into every lesson.

Moving between classrooms

As children grow older and work their way through the school years they will be expected to move between classrooms, some of which may be upstairs.

A careful assessment of each child’s ability must take place and thoughtful solutions to any problems sought. For example, extra time can be allowed for children between lessons, or classrooms can be changed around for lessons where stairs are a restriction.

Keeping warm

This can be a problem, especially during the winter months, but even in the summer on a cold, damp or windy day, children get cold. When you only have one heart pump it works to keep the core of the body warm and so the hands and feet have little circulation, leaving them 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, e.g. vest, gloves, hat, warm coat, body warmer, fleece. As your child grows older they will look at their peers and will not want to dress differently. Gradually they need to be encouraged to be independent and safe. This takes time and patience.

On particularly cold days, staying inside at break and lunchtime may be the most sensible solution. In these cases, the school should be encouraged to think about suitable indoor activities with a small number of peers. Your child should not be kept in by him or herself. It is important that adequate supervision is incorporated into the staffing plan for the occasions when a child needs to be inside.

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Extra-curricular activities and school trips

Extra-curricular activities

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), Lego, puzzle clubs, etc, at some point.

School trips

Throughout a child’s school experience there will be opportunities for trips away from the classroom.

It is important that the staff think about the needs of disabled children in their class as they plan such trips as it should always be possible to include them in these fun educational activities. This should be part of their normal risk assessment plan for the proposed activity and it is reasonable to ask for a specific risk assessment to be done for your child for each trip.

Some trips involve an overnight stay, so it is important to ensure that children with special physical needs have help in coping with the particular challenges such a trip might entail. These could include: activity beyond the school day, a different diet, altered sleep patterns, the need for added concentration and the requirement to be more independent.

It is really helpful if parents can work with teachers and if necessary the staff at the venue booked for the visit to ensure that everyone knows what challenges the child might face and most importantly what can be done to get around potential problems. As previously mentioned, all trips are now risk-assessed and the provision for disabled children MUST form part of the assessment.

Out-of-school activities should be a very positive experience for all children and your child should be as excited as their friends about the event. For more information see the section on Travel and Trips.

Questions to ask yourself

  • Will extra staff be needed to support the 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 of the visit?
  • Will they be able to access all areas of the site to be visited?
  • Will they need any medication whilst away?
  • Will they be safe, especially if it involves any physical activity?
  • Do they have any dietary needs?
  • Will your child be warm enough?
  • How far will your child have to walk?
  • How can parents be contacted in the event of any problem?
  • Can the child have rest periods inside in between activities if necessary?
  • Can parents be allowed to phone the trip organiser at a pre-planned time to ensure that their child is ok?

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Hospital visits

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 child has a hospital appointment during the school day you may be able to arrange with the school for them to still receive an attendance mark, depending on the timings and the school policy.

If a longer stay in hospital is planned it is important also to plan the absence from school and the return to school.

In the weeks leading up to your child’s absence it can be helpful to incorporate hospital discussions into a school day. Ask staff about telling hospital stories, using hospital-based role play or watching television programmes about going into hospital. This can form an extension of the hospital admission preparation that you as a family are doing at home.

Support from class friends by way of cards and presents during treatment can really lift a child’s spirits and if the hospital is close to home, so can visits from school friends once a child is on the road to recovery. In these days of digital communication some schools are filming DVD messages and songs that are then sent to the hospital. FaceTime and Skype conversations are often possible now that hospitals make WiFi available for patients.

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.

Will coped well in hospital. We were home within a week and he was fine from a medical point of view. He did test our patience a number of times, being aggressive and extremely cheeky, with his poor little sister getting the brunt of it. A reassuring chat with Suzie put us right, making us realise it wasn’t unusual, and within a few weeks we were back to normal. Will was back to school after four weeks on a part-time basis and then two weeks later full-time.Because his pacemaker is adult size, it sticks out of his abdomen a little bit. To start with, he was very concerned about getting knocked or pushed. He was also a little more reserved than normal and again at school he was a little self-conscious. He is now living life to the full again. For some reason, now he’s got a pacemaker he thinks he’s Superman – but we wouldn’t want it any other way!

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Developmental delay

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.

If your child is having difficulty with a physical or learning activity that should be within the developmental range of their peers, it is important that they are offered the opportunity for a full educational assessment.

It is vital for parents and teachers to work in partnership to identify problem areas, and then to support your child in order to ensure that they reach their full potential.

It may be necessary to formalise the support structure through further formal educational assessment which may lead to formal educational plans or eventually an Education, Health and Care Plan.

If you feel that your child is not achieving their full educational potential or that their physical difficulties are holding back their schooling, seek information from their teacher and the school’s special educational needs co-ordinator (SENCO) about the best way to take their problem forward. You can take this issue forward yourself if the school does not agree with your concerns. For more information see LHM’s Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition and Support for a Child with Special Educational Needs within Nursery, School or Further Education booklets.

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Psychological effects of congenital heart disease

It should never be underestimated how individual children are affected by restrictions that their heart condition creates.

For some children every 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, e.g. sport.

As the children grow through school, differences may be magnified. Parents and teachers should encourage children to express their worries and woes and work with them to find solutions to their problems, always remembering that there may be issues where compromise is the only way through.

Encouraging each child to become confident in their areas of strength rather than always stressing their weaknesses will help to strengthen their worth and reduce their frustrations. See section on Extra-curricular activities.

If you or the school can see that a child is finding school or their medical condition difficult, talk to the cardiac team about seeking added support.

From Will’s point of view, his biggest concern has been psychological. He realised he couldn’t run as fast as his classmates and got really upset that he was always last. Will wants to be competitive, wants to be up there on a physical level with his mates. This has meant a great deal of work on our part to make him realise he has many other assets and to focus him on them.

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Developing independence

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 whilst for others it is more difficult. This is especially so if your child has already been reluctant to take on personal responsibilities, such as taking themselves to the toilet, eating their lunch without help or simply sitting still.

These challenges need to be recognised and supported sensitively, so that your child can grow in independence at an appropriate rate. Children and parents should not be made to feel that these delays are inappropriate if the development is within the wide range of ‘normal’ timings. It is important, however, for any ongoing problems to be identified and support offered.

Support may need to be given in different ways, e.g. visual cues/visual timetable, verbal prompts to keep on task, extra time to complete tasks, hands-on help initially which gradually reduces over time.

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The most important relationship in school should be between the child and their teacher(s). Teachers need to develop an understanding of the individual child’s needs and the child and family need to understand the expectations of the educational aims of each term in school.

Good communication is essential not only at the beginning of each term but also throughout every week of school. Parents need to build a confident relationship with their child’s teacher so that everyone is able to talk about how a child is coping with school life.

The use of a school diary can be a helpful communication tool as long as teachers and parents read it on a daily basis.

Medical information should be made available in an easy-to-understand format with your specialist cardiac nurse linking with school to encourage an ongoing dialogue between the hospital and school alongside the formation of a Healthcare Plan.

Healthcare Plan

It is vital that children with single ventricle heart conditions have medical information that is easily accessible and understandable readily available in school. A Healthcare Plan is the best way of doing this. 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 partnership by parents, school nurses, specialist nurses and designated school staff 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. If there is a school nurse, he or she may use the Healthcare Plan to train the staff in how to support your child.

Schools should review the Healthcare Plan provision formally on a yearly basis.

For further information and support in completing a Healthcare Plan for your child see the section on Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition.

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Transition to secondary school

Having established a good relationship with the teachers in a school it is always a bit daunting when it is time to think about the move to more senior education. Secondary school is a major step, not only to more structured schooling, but also towards independent living. It should be seen as a very positive step for a child, even if they have challenges because of their heart condition.

Parents and children should start to think about a move to secondary school in Year 5 or, if it is a move to or from middle school, a little earlier. The aims of starting to think about this transition are:

  • to gain a good understanding of what schooling is available in your local area;
  • to assess what sort of secondary education will help a child with half a heart achieve independent living;
  • to find a school that will offer a good education but that will also support a child through their learning;
  • to actively seek the educational support that might be needed to ensure that a child with a heart problem can succeed to their full potential.

For further information and guidance see the section on Transition to Secondary School.

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Your child should be able to participate in the majority of school life. Many schools are very helpful, once they have an understanding of your child’s condition and how it impacts on their education, and should offer some useful solutions. If you find your child is being excluded from certain activities, which you and/or your child feel they should be able to join, it is important to know that all education settings have a statutory duty to include all children.

This section gives a brief overview of the most relevant elements of two key pieces of law, the Equality Act 2010 and the Children and Families Act 2014. This is an enormous and complex topic, so further information can be found by clicking on the links or by contacting the office.

The 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.

The Children and Families Act 2014

Adopted in September 2014, this is a huge piece of legislation covering many areas. It includes guidance on ‘supporting pupils at school with medical conditions’ which sets out the responsibility of schools to ensure that a child with a disability can access all areas of their education. “A person has a disability if he or she has a physical or mental impairment which has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.” Children with single ventricle heart conditions clearly fall within this definition as they have a permanent physical impairment which has day-to-day implications.

Schools must not treat a disabled child less favourably than another child for ‘a reason related to their disability’ without justification.

Organisations, including schools, are required to make ‘reasonable adjustments’ to ensure all children are appropriately included within all aspects of school life.

Some schools may not have come across children with complex health needs before, or may not have much experience in this field. In these cases, they may need support themselves to understand how to make ‘reasonable adjustments’ without necessarily needing extra staff to support your child. Support for the school should come from the local authority’s inclusion team.

For this age group, areas which sometimes cause problems relating to inclusion are participation in PE, management of your child’s safety at break and lunch times, and how best to allow them to participate in school trips.

It is good practice to allow all children to participate in school trips. Risk assessments have to be carried out for all off-site activities; staff will have to also take account of your child’s needs relating to the proposed activity.

If you feel you are encountering problems about inclusion, all schools have a special needs representative on the Board of Governors. Some schools also operate a school council system, where again there should be a special needs representative.

The majority of children with single ventricle heart conditions are educated in mainstream schools and do not need any separate provision such as home schooling. Most children will come across the hospital school from time to time. It is important to have a basic understanding of what the possibilities are, in case you ever need to access some of this special provision, for example, if your child is often away from school, or if he or she has a long hospital stay.

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Tools for schooling

There are a number of tools which can help with schooling, as well as sources of further information and advice. This information contains brief details about these tools. Our more detailed booklet Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition and our LHM booklet Support for a Child with Special Educational Needs (SEN) within Nursery, School or Further Education contain further details and examples of these tools and other sources of information.

The main tools to help with schooling are:

Healthcare Plan

It is vital that children with single ventricle heart conditions have medical information that is easily accessible and understandable readily available in school. A Healthcare Plan is the best way of doing this. 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 for everyone to understand your child’s needs. If there is a school nurse, he or she may use the Healthcare Plan to train the staff in how to support your child.

School-based support

If the school, medical team or you as a parent have identified that a child is not progressing in school it is right to highlight that concern and look for ways to improve the opportunities for learning.

The school will look to set plans in place to support a child’s learning and this should be reviewed regularly. The support may need to be increased if individual attainment targets are not reached.

Education, Health and Care Plan

If all internal support structures have been explored then formal assessment and the introduction of an Education, Health and Care Plan will be initiated. For more information on this process see the information on Support for a Child with Special Educational Needs (SEN) within Nursery, School or Further Education.

I just wanted to send you our sincere thanks for the pack of information you sent. It is all so useful and practical, it really is the most relevant info we have had.Today was the first opportunity we’ve had to sit and compile the individual Healthcare Plan for Theo. We managed to get it done because we had the template and guidance from LHM. I’m not sure we would have ended up with such an effective or comprehensive result had we not had that, that’s if we’d even have managed to get going at all. The Golden Rule is in there, highlighted and Theo has remembered it to

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Key terminology and people

Community paediatrician

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

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.

Key Stage 2

Key Stage 2 is the next part of the formal education system and covers Years 3 to 6 (when your child is aged 7 – 11).


Local authority (previously Local Education Authority or LEA).


The government agency which inspects schools, early years settings and LAs in order to improve standards of education and childcare.

School nurse

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.


Where education takes place, e.g. playgroup, nursery or school.

Special educational provision

When a special educational need has been identifi ed the school-based provision plan sets out the added support for each individual child.

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Further information

IAS Services (previously known as the National Parent Partnership network)


ACE Education

Independent charity offering advice to parents about state education in England and Wales.

Tel: 0300 0115 142


Independent Panel for Special Education Advice (IPSEA)

Free independent advice on all aspects of special education.


Children and Families Act 2014

This new 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: May 2019

Review due: May 2022

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