The following information is part of a series helping children with single ventricle heart conditions to make the most of their education, and covers early years foundation stage and Key Stage 1. Much of the information is also applicable to pre-school and childcare settings.

Education is such an important part of every child’s life. It is a stepping stone to their eventual independence. Ensuring that each child fulfils their potential takes thoughtful preparation by all parents. It takes even more planning if that child has a complex medical condition. Following requests from parents, teachers and the children themselves Little Hearts Matter has created a series of information booklets to support families through the challenges of the education system. In general, teachers are 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.

The key aims of this information 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. If any element of this information 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.

Contents

Childcare and foundation stage

Planning for your child’s care and education can be very daunting for many parents. Having spent many months worrying about their heart condition and keeping them safe, the thought of handing them over to a school, nursery or childminder can be very frightening. Here we hope to help parents explore the options available to them and the sort of questions that they may like to ask as they seek the right support for their child.

How can I find suitable childcare?

Information about local childcare providers is available from your Family Information Service, which can be sought from your local council who will also provide details on which settings (including childminders) can support children with special needs. Childminders and daycare nurseries are inspected by Ofsted. Some settings are actually keen to have children with special needs, as they can attract extra funding or fulfil certain criteria with their local council.

If you would like to discuss other parents’ experiences of finding suitable childcare, please contact the Little Hearts Matter office.

Some children have added needs from an early age, identified by a paediatrician or community healthcare team. They may be eligible for added support which is now part of the overall support for children from the age of 0 to 25. Please see LHM’s Support for a Child with Special Educational Needs within Nursery, School or Further Education booklet.

Should my child go to pre-school?

Pre-schools and playgroups can be a very valuable experience for children with additional needs as they offer the opportunity to develop social skills with their peers (an experience which may have been limited due to medical needs), they start to get accustomed to organised routines, and they can be encouraged to develop some independence. Many pre-schools and playgroups are run by independent organisations or voluntary groups. This can be incredibly beneficial as it means they may be more flexible and able to access different funding sources which could meet your child’s needs more quickly, without having to go through the full formal process as may happen when they are in full-time education.

As soon as you have decided whether you would like your child to go to pre-school or playgroup, contact the leader of the group and arrange a meeting, together with other relevant contacts, e.g. congenital cardiac specialist nurse, health visitor, any therapists involved, to discuss what help your child needs, and how it can be provided. All children in preschool education are now entitled to have a Healthcare Plan in place following new guidance in the Children and Families Act 2014. The LHM Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition booklet may help with more information.

Ethan started nursery just before his first birthday. Communication has been crucial to our success so far. I felt the need for the staff to appreciate the complexity of Ethan’s condition without making them so unduly nervous that they didn’t treat him like a normal child. I therefore put together some key information about the condition and signs and symptoms to be aware of. I also showed them his nail beds to show them what is ‘normal blue’ for him.So far we have had only one occasion where they have had to call me as he had a temperature and the system has worked well.

Before and after-school childcare

Many schools offer after-school clubs with wrap-around care for working parents. If you need this childcare provision, make sure you check where the club is situated (some are a short walk away from the school site, which may pose a problem after a full day at school). You should also check who runs the provision (they are often run by private nursery providers, not by the school).

If it is not run by the school itself, you should ensure that relevant staff are included in meetings about your child’s needs. Any increase in staffing needed to properly support your child will come from a different funding source, not from the school. Your health visitor, school nurse or special educational needs co-ordinator should have more information.

Transition into school

It is essential to set up a transition meeting (sometimes known as an Action for Inclusion meeting) between the nursery and school so that all education and health professionals can discuss the move and work together to write the Healthcare Plan.


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Preparation for school

With some planning and preparation, the majority of children with single ventricle heart conditions do well at school. However, it is important that parents and schools discuss how best to ensure that children are able to access and participate in as much of school life as possible.

How do I prepare for my child starting school?

It is vital to find somewhere which will meet all of your child’s needs, including educational, social, communication and daily care needs. In order to do this, it could be worth spending some time thinking about what those needs are, and where they are different from the needs of other children of the same age. This may be difficult, as you are likely to have grown accustomed to your child’s needs, and for you they are ‘normal’. It could be helpful to ask a friend, relative or someone like your health visitor to help you think this through.

You will need to find out about the provision in your area, and decide whether you would like your child to attend a nursery year which then feeds into the main infant school.

Throughout the years leading up to starting nursery or school, do not hesitate to talk to specialists about your child’s needs and any concerns or worries you may have about his or her development in general. Identifying needs early on will help your child as you may be able to get professional help sooner, and it will also help when it comes to accessing suitable support in school, as your child is already ‘known’ or ‘in the system’. The new government provision starts from the beginning of life: for more information look at LHM’s Support for a Child with Special Educational Needs within Nursery, School or Further Education booklet.

When should I start to think about nursery/school?

Local authorities (LAs) will ask you to apply for nursery and reception places around a year before your child is due to start. Even if your child has attended a school nursery, you will still have to apply for a reception place. Many schools will have open mornings at the beginning of the autumn term, which can be a useful time to visit schools; however, you may also wish to request additional time with the school to discuss your child’s particular needs.

If you would like your child to attend a nursery school, it may be advisable to request a morning place (there is sometimes a choice of five half-day sessions, either mornings, afternoons or a mixture). Children with single ventricle heart conditions are often at their best in the morning, and may be tired by the afternoon. Some may still need a daytime sleep during their nursery year. Depending on their condition, if they are coming towards needing their Fontan (Stage Three) surgery, they may tire more as this year progresses. Most parents in general want a morning place, through personal preference, so please stress the medical reasons your child will be better with a morning place if this applies to you and if it’s available.

Even if your child has had experience of childcare, e.g. through a daycare nursery, the experience of a school nursery is very different. The ratios of staff to children are different, and more importantly the staff think of themselves primarily as educators rather than care workers. This difference between childcare and a school nursery often takes parents by surprise, so please be prepared. Children who have coped very well in a childcare environment may need additional support when they start school nursery or reception.

How do I find a school which will suit my child?

You will probably want to visit possible schools for your child well in advance of making their application. A list of possible questions to ask during a school visit is noted below. When you visit, you may find it helpful to explain your child’s key problems first so that the staff start thinking about the implications themselves, e.g. tiredness, breathlessness, cold, impact of anticoagulants, need for food, etc.

Questions to ask during a school visit

How can we ensure that all staff understand our child’s condition?

  • Who is the SENCO?
  • Do you have any experience of children with complex medical needs (e.g. chronic asthma, diabetes, a child who needs to use an EpiPen)?
  • Do you have Healthcare Plans in place for any other children?
  • Is there a school nurse who can help with developing a suitable Healthcare Plan and with briefing/training the staff?
  • Who are the special needs professionals? How often do they visit the school at the moment?
  • If my child needs a key worker at lunchtime would a dinner lady (lunchtime supervisor) be available?
  • Who will support my child, and make sure he or she is safe and well? Do you have the resources or do you need to request statutory assessment?
  • How will you handle PE?
  • If my child is getting tired during the day, how will you deal with this?
  • How will you manage break-times (e.g. send him/her out with other children and no support/keep him/her in on their own/or a positive answer like short amount of supervised play outside followed by inside play in cold weather with a rota of friends)?
  • Who will make sure he or she eats and drinks enough throughout the day?

You may wish to ask to see a copy of the school’s SEN (Special Educational Needs) policy and recent Ofsted (Office for Standards in Education) inspection report.

Hopefully you will hear positive answers such as that the school will work in partnership with you and the healthcare professionals to put suitable plans in place, or they will help your child to be included in as many activities as possible. The key question to ask is whether your child will be welcome. You should also trust your instincts as a parent, and choose somewhere which gives you a good feeling.

Schooling provision

Some children’s needs may best be met at a special school or a school with a specialist unit attached to it. This is likely to be the case for a child who has additional needs over and above their heart condition. It is by no means the expectation for all our children.

Families sometimes meet a response which is unrealistically positive where the school assumes everything will be fine, possibly because the issues have not been understood or thought through. Other families are met with a negative ‘we can’t cope’ response where no consideration has been given to how the child could successfully be included.

This information aims to give parents the tools to address both these scenarios, and enable the school to successfully and safely include your child. Most schools do want your child to be happy and to achieve well whilst in their care; they may simply need some ideas about the best ways to do this.

Once I have chosen a school, what should I do next?

It is important that you identify the key people at the school, who include your child’s class teacher, the head teacher and the SENCO (special educational needs co-ordinator). Full explanations of different people’s roles are included in the Key terminology and people section.

Around a year before your child starts school, it would be worth making a note to discuss school with your cardiologist at your child’s next outpatient appointment. Does your cardiologist have any particular concerns or recommendations for your child? A phone call or chat with your cardiac specialist nurse might also be helpful.

It would also be very valuable to organise a discussion between everyone involved with your child, such as your health visitor, your cardiac specialist nurse, and representatives from whatever centre or childcare your child attends together with teachers, classroom assistants and school nurses from the school your child will attend. Any other healthcare professionals, e.g. physiotherapist or speech therapist, should also be invited. This will help you to jointly develop a Healthcare Plan regarding any support your child may need in school. An initial meeting well in advance of your child’s start date, together with a more detailed planning meeting in the term before your child starts school would give a great opportunity to discuss your child’s needs and make sure everything is in place for his or her first day at school. Ask for help from Little Hearts Matter if you would like to talk this through with another parent.

Some schools will want to see your child in the school environment first, before making any decisions about whether they may need any extra support. In other cases, where you have already needed a lot of input from community healthcare professionals, the needs will be more apparent.

Many teachers’ initial concern is that your child will collapse or have a heart attack in class. It is important to reassure them that this (unless your cardiologist has advised you otherwise) is unlikely to happen.

A brief description of the heart condition and the current surgery is helpful, together with any upcoming surgery, e.g. have they already had their Fontan?

Most importantly, the school will need to understand the implications of your child’s heart condition plus any other additional needs they have. The section called Day-to-day challenges gives further detail on implications for school.

Important Support

Regardless of whether your child appears to need extra support in school, he or she must have a Healthcare Plan in place when starting school. This document could be drawn up at one of the meetings described above. One of the important areas to discuss is when your child is ill enough to consider it an emergency, and also when they are ill enough to be sent home. Over time, the teachers will get to know your child better, but you need some agreed understanding to start with, so that you know your child will be safe and so that they aren’t being sent home too often. For more information on Healthcare Plans refer to the Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition.

Depending on how well your child is when they start reception, you may need to consider reduced hours, for example mornings only. This could be necessary for a short period of time whilst they get used to the school routine, get through a period of cold weather or illness, or recover from surgery, or it could be a longer-term measure. It may be necessary to review these types of arrangements on a regular basis, for example every week, to check how your child is coping and how they feel about their school attendance.

If I feel my child needs extra support what should I do?

Some children with single ventricle heart conditions need additional support, others do not. Some children have additional needs related to their heart condition or possibly due to another medical diagnosis. School and parents will jointly need to consider the impact their condition has on their ability to access education. This should all be covered within the Healthcare Plan; additions can be made to the plan throughout the school year.

If, however, you feel that their additional needs are more to do with their ability to learn or their rate of progress in school it may be helpful to formalise their educational support. Please refer to our separate pack Support for a Child with Special Educational Needs within Nursery, School or Further Education for an explanation of the different options available, and how to go about seeking the support your child needs.

Many children may not need formal tools to support their education; they may manage very well with a few simple changes to the routine to accommodate their needs. Simple solutions can be very effective for some children – ideas are included in the Day-to-day challenges section. Other children may need support for a short period of time, and may then develop so that they can cope without support.

To start with, David found reading and maths difficult to grasp, but with a little extra support by the end of his first year he was greatly improved. His reading, writing and maths are at the level of everyone else in his class. He has no extra support at all in the class now, and he loves school.

Should my child defer starting school?

Some children with single ventricle heart conditions could benefit from starting school a year later, depending on their developmental stage and medical condition. The legal position in England is that parents of all children under five can defer their child’s entry to school until later in the same school year; in fact some schools do a staggered intake. It may be possible to discuss deferring further, i.e. into the next school year, on medical and/or developmental grounds. Admission authorities have the discretion to allow this, and would have to consider your request, if you felt it was right for your child. This could be an important topic to discuss at a planning meeting before your child starts school or at a review meeting during their nursery year, to decide whether or not they will be ready to enter reception. Please be aware that different areas of the country may have different policies.


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Day-to-day challenges

This section explains how your child’s heart condition may impact on their infant school education, by describing some of the challenges they face and suggesting solutions. Within your child’s Healthcare Plan, it can be a good idea to go through a typical infant school day and write down every aspect of care which your child needs which is different from their peers in any way. Many parents report that schools have difficulty understanding their child’s condition, as there are no outward signs. We have tried to explain here why the children sometimes experience particular difficulties in order to help with this understanding.

Ongoing medical care and treatment

Children with single ventricle heart conditions will have ongoing medical treatment for their whole lives. This will inevitably impact on school. Recording how medical care and treatment impacts on school for your child is the key purpose of the Healthcare Plan.

Use this tick list to help you prepare for a conversation with your school and to prepare your Healthcare Plan.

What this means for ______________ (child’s name) is (please tick as appropriate)

he/she will become breathless easily

he/she may go blue

he/she will get tired during the school day, and will get

increasingly tired towards the end of a week or term

his/her ability to concentrate may be affected

he/she is taking the following medications:

More details can be found in the Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition booklet.

Surgery

Depending on your child’s cardiology plan of care, they may start nursery or infant school before they have had their Stage Three (Fontan) surgery. If this is the case, detailed planning should be carried out with the school to ensure your child’s needs are met as well as possible. As the length of hospitalisation for Stage Three surgery varies so much, convalescence will also vary for each child. Some schools find it difficult to understand that there is no way of knowing how long your child will be away. There can also be difficulties with understanding how major the surgery is, and how much time some children will still need at home before they are really well enough to be back at school. It may be helpful to give the school a copy of the LHM Fontan booklet as it sets out the recovery from surgery with some useful pictures showing what it is like for the child.

Clearly, the most important factor at this time is helping your child through surgery and hospitalisation. Please don’t worry about their education, as young children often catch up quickly with things they have missed, but may need extra support to do this. Ask your school to liaise with the hospital school, so that appropriate work can be covered whenever your child is well enough. Ask the school (or your child’s teacher) whether they could incorporate hospital play into their activities at appropriate points (it doesn’t have to be every week!), both before and after your child’s hospitalisation. If the school is not sure about this, please feel free to contact Little Hearts Matter for suggestions. The rest of the class will enjoy this and benefit greatly, and sometimes it can give your child a chance to explain some of their experiences to their school friends. If your child has been in hospital for a long time, a gradual reintegration into school may be the best plan, with some weeks of part-time attendance when they have convalesced fully.

Cardiac tests

Various cardiac tests may be required during your child’s time at nursery and infant school, some of which will require a hospital admission for some days, for example, a cardiac catheter or a pacemaker check. Children may think of these as operations, as a hospital admission and general anaesthetic is required. The hospital will tell you how long the hospitalisation is expected to last and how long they advise the child to stay off school, together with any information the school needs to know when your child returns.

Some children will need to have a 24-hour ECG to monitor the electrical activity of their heart during their normal day-to-day life, to look for any rhythm problems. If this is the case, school will need to know, and to understand that the child should participate in everything as they normally do, although some (unexpected) difficulties may need addressing. For example, if your child is self-conscious about getting changed, is there somewhere s/he could get changed more privately? Is closer supervision needed whilst changing to limit the comments/open curiosity of others?

Medical appointments

School will need to be made aware of your child’s outpatient appointments. Most children will have six-monthly or yearly cardiology appointments. Many will also see other specialists such as a paediatrician or physiotherapist. They will need blood tests from time to time, and if they are taking Warfarin, will either need regular hospital visits to check their clotting (INR) levels or a six-monthly appointment if they are home testing.

Medications

Another important piece of information for schools is the medication taken by your child and its impacts. This information should be included in the Healthcare Plan.

Some children require medications during the school day, e.g. Captopril (though it can be possible for some children to time three doses of medicine so that the middle dose is not required in school). This needs to be planned with school, so that appropriate training for staff can be given. It may be useful to ask for a second prescription of Captopril that can be kept in school, so that it is kept in its original packaging and to reduce the possibility of it being forgotten between home and school. Some extracts from the official government guidance “Managing Medicines on School Premises” are included later.

Many of our children take Warfarin, which delays the blood clotting process to ensure that the blood flows freely through the passages in the heart. This means that they are vulnerable to prolonged bleeding or excessive bruising. All staff including lunchtime supervisors at your child’s school must be made aware of this. They will need to understand the guidance that prompt attention is required to stop any bleeding by applying pressure to the bleeding point, and in the event of a bump to the head, a check at the local hospital may be needed as there could be a danger of internal bleeding. You will also need to make sure your child has some level of understanding, appropriate to their age. Warfarin can be a reason to suggest that your child needs some one-to-one support, to make sure they are safe during playtimes and physical activities within the curriculum.

Some schools have experience of children with haemophilia; others may have come across children with brittle bones. This may help inform their understanding of how to care for a child taking Warfarin. For more information refer the school to the LHM Living with Anticoagulation booklet.

Many children will take diuretics for some or all of their time at infant school (e.g. Furosemide, Amiloride, Spironolactone). These medications increase the body’s ability to pass out fluid, meaning more urine is made. This will create an urgency in needing the toilet so children should be allowed to excuse themselves when they need the toilet.

Some children with single ventricle heart conditions suffer from constipation. Again, the school should be made aware of this, especially relating to any medication your child is taking or any special dietary or fluid needs they have.

Toileting

If your child is not toilet trained when they are due to start pre-school, nursery school or reception, please do not worry about this. Talk to the school or pre-school and ensure that a proper plan is made. Many children without health problems are not toilet trained when they start pre-school, so pre-schools should have a very clear way of ensuring all children’s needs are met. Nurseries and schools are not allowed to refuse admission to any child on the grounds of their toileting situation. They are also not allowed to insist that you, as a parent, come in to nursery or school to change your child’s nappy or pull-ups.

“The School’s Admissions Code (Department for Education, 2012) states that admissions authorities must not discriminate against or disadvantage disabled children or those with SEN. This is in line with the Equality Act 2010. This states that a person has a disability if s/he has a physical or mental impairment which has a substantial and long-term adverse effect on that person’s ability to carry out day-to-day activities. Therefore, it is unacceptable to refuse admission to school to children who are delayed in achieving continence.”

Source: SEN Magazine, April 2014

There are a number of reasons why your child may be slightly delayed with toilet training. They may be experiencing some delays due to the other complications in their life, or some of their medication making it difficult, or they may not even be genuinely delayed – you may just feel they are.

If your child is taking diuretics, it is important that staff have a good understanding of the impact of diuretics. It can be useful to ask if they have any relatives (often elderly relatives) taking “water tablets” and see if they are aware of the urgency which is experienced. Children must be allowed to go to the toilet whenever they need to. Systems may have to be put in place so that they are not embarrassed by this need, e.g. a card they can show the teacher. They may need to be encouraged to go to the toilet regularly throughout the day by a designated member of staff making sure they go at suitable times.

If toileting is a problem, ask the school nurse or community enuresis nurse to help you to agree a joint approach for home and school, making sure that positive actions are rewarded, e.g. identifying a need to go to the toilet independently.

MedicAlert bracelets

Most 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 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.

Physical challenges

Most 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.

PE

Children with single ventricle heart conditions usually like 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 will rarely be able to keep going for long. For more information on PE and exercise in school see the LHM Sports and Exercise booklet.

He joins in PE but the teacher is aware that he may just need a ‘breather’ sometimes.

Physical activities

Other physical activities may cause similar issues to PE, for example, drama, dance, and activities involving standing up for long periods.

Children should be encouraged to participate, but should also be made to feel that having a rest when they need one is completely acceptable. At this age, the idea of children finding their own limits may need some adult support. Teachers may wish to remind all children at the beginning of a PE lesson that resting when they are tired is fine. Your child may wish to have a special chair for resting during the lesson. On some days, if they are particularly tired, they may need an alternative activity instead of the PE lesson, and the school should be prepared for this possibility. Explaining similarities with asthma can sometimes be helpful.

Concentration

Everyone needs energy to concentrate. Since our children have lower energy levels than their peers, they often have difficulties in maintaining their concentration, 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. Core lessons are often held in the morning, for the benefit of all children in this age group – ask whether this is the case in your child’s school. If your child appears to be struggling, talk to the school about either changing the way their classroom support works, or accessing support if it isn’t already in place.

It is also worth considering the question of homework. Children need to be encouraged to participate in as much of school life as possible. However, they also need the opportunity to have a good rest each evening to be ready for the next day. Planning homework allows for normal school activity, but acknowledges that there may be some evenings when a child is too tired to study.

Academically, he is in the middle groups but at the top end. Reading is slightly higher. I have found that due to his tiredness you have to time it right when it comes to spellings, reading, etc, and that has always been the case. I have always let him sleep/rest if he needs it.

Nutrition

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 with half a heart can cope with an action-filled day at school, it is important that they eat little and often.

Snacks

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 these children’s treatment. Cereal bars, dried fruit or peanut butter sandwiches may be a suitable idea. Make sure you discuss with the school who will give your child their snack, and who will ensure they have eaten it. Their school day will be far more productive if planned snacks are allowed.

Drinks

Some children need extra fluids, for example, if they are taking diuretics, if they are prone to constipation, or if it has been advised.

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 throughout the day; 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.

Lunch

As our children need extra calories, eating plenty of lunch is very important. They need to have a balanced diet, but may find a higher-calorie pudding gives them more fuel than fruit. Many of the children have problems completing their lunch before going out to play. It’s important to stress to the school that our children should be encouraged to finish their lunch, even if it takes a long time.

If children take 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 ready cut-up fruit are some ideas. Biscuits and chocolate may not be allowed, but cereal bars and dried fruit may be.

Safety in the playground

Playground safety is a key area for this age group of children. As a parent, when you first see the playground and rough and tumble of break-times at ‘big school’, you are likely to be somewhat concerned, even if your child doesn’t have any additional needs! If you then consider that your child is taking Warfarin, may have had recent surgery, or may have a pacemaker as well, this is clearly going to be a major area of concern.

Children should be allowed to join in with playground activities, but at a suitable and safe level. Extra supervision may be required. Your child should know who to go to in the case of feeling unwell, out of breath or cold (e.g. knowing where the designated first aid post is).

Keeping warm can be a problem, especially during the winter months. The children typically have poor circulation, and also cannot run around constantly to keep themselves warm. 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 (and you do need to think whether they can fasten it themselves – duffle coats are good for this – or you should get an agreement that an adult will fasten it for them). On particularly cold days, staying inside at break and lunchtime may be the most sensible option. 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. Again, this can be a reason that the school would feel one-to-one support would be useful for your child.

Getting wet is just as much of a problem as getting cold. If children have got wet through water play, for example, they should be changed into dry clothes immediately.

Nursery and infant school age children need help to manage these physical needs. They do not want to be distracted from the serious business of playing, so are unlikely to notice that they are cold or tired until it is too late! Adult support can be very helpful.

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Development

Developmental delay

Repeated surgery, low oxygen levels and regular interruptions of normal family life for hospital appointments can lead to varying degrees of developmental delay. Fine and gross motor skills are sometimes delayed, seen for example in co-ordination or balance problems. Language, social and emotional skills may also be affected. This should be addressed by individual medical and support plans, involving healthcare professionals where necessary.

Medical research shows that children with complex congenital heart disease do show some developmental delay, which can have a considerable impact on their education. This can manifest itself as Hyperactive Attention Deficit Disorder, dyslexia, dyspraxia or traits recognised on the autistic spectrum.

Developing independence

Some children experience a delay in being able to manage their own self-care needs. This needs to be recognised and supported sensitively, so that they grow in independence at an appropriate rate. Children and parents should not be made to feel that these delays are inappropriate as every child is different. Even without any additional needs of any sort, children meet their developmental milestones at different times.

Emotional needs

If you have any concerns about your child’s emotional or psychological wellbeing, or if these emerge once he or she has started school, please talk to somebody at the school, your GP or the health visitor/school nurse. You may wish to ask for a referral to the educational psychologist or another specialist. All children with half a working heart have gone through a lot by the time they reach the age of five, e.g. some children are traumatised by their time in hospital, their recovery from surgery or the development of needle phobias or fear of their medications. Children deal with their fears in different ways, including some ways which a school may find difficult to understand or to which they may not know how best to respond. If this is the case it is vital that you seek professional help so that the school has the understanding to help your child work through his or her issues, rather than labelling your child as ‘naughty’ because of the behaviour they are demonstrating.

Matthew’s long hospitalisation for his Fontan, plus the fact he did not find school a particularly comfortable place to be meant that he was showing lots of difficult behaviour both at home and at school. The educational psychologist was the first person to recognise that there were good reasons for this behaviour, and to suggest initial strategies to help. We have since then had some excellent support from two child psychologists, and an amazing special support assistant in school.

Social development

Learning to interact appropriately with peers is a vital part of infant school education, and your child may need some support with this. Some children with half a working heart are very articulate with adults, from having spent so much time in the company of adults, and possibly less unstructured time with their peer group, so the scale of any problems may initially be hard to understand. Some ideas could be buddying systems, carefully arranged pair and group work, and discussions around friendship and other topics in circle time.

Awareness of own condition

Some children become aware of their own limitations during nursery or infant school. Even if you have always been open and honest with them about their condition, it is not until this sort of age that they will be able to understand, and may start to see their limitations compared to their peers.

School can play an important role in helping your family with this. By being aware of and sensitive to your child’s needs, school should ensure that they are not excluded from activities. They can help to nurture suitable friendships. They should be alert for any signs of your child feeling left out, or being made fun of, for example, for not being able to keep up with others, or for wearing pull-ups still. For young children (nursery or reception age), the book “Rosie goes red, Violet goes blue” may be a useful tool for class discussion. There are also numerous other books about disability, difference and special needs written specifically for this age group, which could prove very useful tools in the classroom. Your school will likely be aware of or have some of these – ask them for help in this respect or contact the Little Hearts Matter office.

Conclusion

Children who have shown significant developmental difficulties will need a full assessment to identify their needs and put solutions in place. Our Support for a Child with Special Educational Needs within Nursery, School or Further Education booklet offers an explanation of the steps to follow. Please remember, however, that many children manage very well with some simple and thoughtful adjustments; formal assessment is by no means a foregone conclusion, nor is it necessarily a guaranteed solution to any problems you encounter.


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Communication

Good communication between everyone involved in your child’s education and school life will make all the difference to their experience of school. Schooling should be a positive part of a child’s life so it is always a good idea to approach teaching staff in a positive way. There may be a number of professionals involved in your child’s care; at the very least, there are teaching staff, doctors, specialist nurses, school nurses and of course the family involved. There are some other key members of the team highlighted below.

SENCO

The special educational needs co-ordinator or SENCO is the key link person for children with the need for educational support at every school. The responsibilities of the SENCO are to identify children’s needs and to make sure they are met. Any parent can request access to the SENCO – your child does not need an Education, Health and Care Plan or to have any formal support in place for you to be able to talk to the SENCO.

Key worker (individual support)

You may have a key worker allocated by the school to co-ordinate the day-to-day needs of your child. This might be a nursery or classroom teacher or the SENCO. This person will be responsible for co-ordinating the services put in place for your child, to create a link between all members of the team offering support and education and to be a link person for parents.

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 LHM Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition booklet.

My son is now ten and we made a booklet about his heart condition and what he has been through. We added photos and details about his surgery, the future and how his heart problem affects him. We also have close ties to the school nurse who we see often for reviews; she helped write his medical action plan. At the moment the school nurse weighs him at school as well to keep an eye on his weight. When our son started school we had a meeting at home with our community nurse, his teacher, the school nurse and the SENCO to get an action plan together to ensure he is looked after at school.

Managing medicines on school premises

The rules about the management of medicines in school have been updated as part of the managing long-term medical conditions in school 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 given 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 a 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.

Review meetings

Asking for regular review meetings once your child has started school can be helpful. There may be a lot more ground to cover than a ten-minute slot at parents evening would allow! Some parents have termly reviews together with a formal annual review. The SENCO (special educational needs co-ordinator) should be happy to arrange these for you. Before the meeting, think about who you would like to be there. You may feel some input from health service professionals would be useful, or you may wish to have a friend, relative or someone from an organisation such as the Information, Advice and Support Services Network with you.

Some children start off well in school, then encounter problems in Year 1 or 2. In these cases, a review meeting will be a vital tool to help try to establish the root of the problem and possible solutions. We know that many parents feel their children are bright, but that they struggle to access the learning in the way it is presented. Identifying and discussing any concerns about your child’s progress in school is part of an ongoing assessment. The first step is a review of individually set achievement targets. If you feel more formal assessment is needed, please refer to our booklet on Support for a Child with Special Educational Needs within Nursery, School or Further Education. This support is now available to children from ages 0 to 25.

Home School Link Book

These may be called a variety of different things, such as a ‘Home School Liaison Book’, ‘Communication Book’ or a ‘School Diary’.

Some families find this a very useful tool for ongoing communication with the class teacher throughout the school term, provided everyone agrees to the system so the book is read and used properly. It can be a simple exercise book where the parent writes notes about their child, e.g. a change of medication, whether they are particularly tired at the moment, forthcoming hospital appointments, etc. The teacher responds as appropriate and can also use the book to communicate positive and negative issues about the child’s day. It is a particularly useful tool when coming up to reviewing your child’s progress over a term.

Communication with other parents

As part of the overall experience of school, you will probably want to encourage your child to socialise with other children. It can be worrying to let go of your child, and it may be hard to know what level of detail other parents would need to look after your child for a short time. See LHM booklet Travel and Trips, ‘Sleepover’ section.

We found it useful to talk openly to other parents about Andrew’s heart condition when waiting outside the classroom at the end of the day. This helped them to understand and even meant Andrew was invited to friends’ houses for tea/birthday parties without too much fear.

If your child can’t go to school

If your child can’t attend because of illness or injury, your school and local council will provide support to make sure their education doesn’t suffer.

The school’s role

The school should:

  • let the local council know if your child is likely to be away from
  • school for more than 15 school days
  • give the local council information about your child’s needs
  • capabilities and the programme of work
  • help them reintegrate at school when they return
  • make sure they’re kept informed about school events and clubs
  • encourage them to stay in contact with other pupils, e.g. through
  • visits or messaging such as FaceTime.

The local council’s role

If your child’s going to be away for a long time, the local council will make sure they get as normal an education as possible. This could include arranging:

  • home teaching
  • a hospital school or teaching service
  • a combination of home and hospital teaching.

The local council must make sure your child continues to get a fulltime education – unless part-time is better for their health needs.

The local council should also:

  • have a senior officer in charge of the arrangements and a written policy explaining how they’ll meet their responsibilities
  • make sure your child isn’t without access to education for more than 15 school days
  • arrange education from the start of your child’s absence if it’s clear they’re going to be away from school for long and recurring periods.

This is guidance introduced in March 2015 – www.gov.uk/illnesschild-education


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Inclusion

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, 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 relevant 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 lunchtimes, 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. Schools may be grateful for the offer of parental support on an out-of-school activity as parents know more about the needs of their child in different environments.

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 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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The next step

There can be a need to prepare for change during every school year, as each subsequent year brings new challenges and a number of changes for your child. This need is far greater when your child changes school. If the infant school and junior school are separate, some careful planning will be required. If your area has a middle school system, you will also need to make sure you plan ahead. You and your child will need to visit the junior/middle school well in advance, armed with information about your child and a list of questions. It will be particularly important to discuss whether additional support will be needed due to the change in school, e.g. a different physical environment, moving about the school more, different teaching methods, more demanding lessons, etc. Inviting a representative from the new school (sometimes called the receiving school) to review meetings during the final year at the infant school is very useful.

Please refer to the section Key Stage 2 Junior School for further information about this next stage of your child’s educational journey.

If, at any transition point, it seems that your child may need additional support, please see the section Support for a Child with Special Educational Needs within Nursery, School or Further Education.


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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.

Foundation Key Stage (FS1 and FS2)

FS1 is the school nursery year, when your child is aged 3 – 4. FS2 is reception, ages 4-5, usually the start of ‘proper’ full-time school. This does vary in different parts of the country, so find out what the situation is where you live.

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 1

Key Stage 1 is the next part of the formal education system and covers Years 1 and 2 (when your child is aged 5 – 7).

LA

Local authority (previously Local Education Authority or LEA).

Ofsted

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.

Setting

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

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.


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Further information

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

IAS Services 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.

www.iassnetwork.org.uk

Advisory Centre for Education (ACE)

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

Tel: 0808 800 5793

www.ace-ed.org.uk

Independent Panel for Special Education Advice (IPSEA)

Free independent advice on all aspects of special education.

Tel: 0800 018 4016

www.ipsea.org.uk

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.

www.legislation.gov.uk/ukpga/2014/6/contents/enacted

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.

www.legislation.gov.uk/ukpga/2010/15/contents

Please contact Little Hearts Matter for further advice, support and signposting.

Updated: August 2015

Review due: August 2018