Year 9 is a pivotal year at school for most young people. Many of them will be growing up through puberty and seeking a greater independence from their parents. Within school it will be the year when they will need to make choices about their education in relation to their further education and employment aspirations.

This information has been written to help young people, parents and teachers weigh up the opportunities and choices available at school from Years 9 to 11, thinking about ongoing study, qualifications and employment whilst balancing the possible restrictions of having only half a working heart.

When reading this information it is very important to remember that every young person is different. They will all have abilities, challenges and aspirations that are different from those of their friends. Every teenager should have an opportunity to reach their full potential. That potential is theirs not their brothers’ and sisters’ or their peers’. Over their years in school it is very important that everyone involved in their education looks at them as an individual and sets in place the support, opportunities and care that they need to achieve their very best. Every child should have an opportunity to reach their full potential.

Contents

Expectations in the final years of school

The first two years of secondary school offer most pupils the opportunity to study a variety of different subjects. This gives them a chance to explore core subjects like maths, English and sciences and practical subjects, as well as humanities like geography, history and languages. There will also be subjects like PE, art and design and ICT.

Gradually each young person will gain a greater understanding of which subjects they find easy and interesting and which ones are more of a challenge. They will also have begun to understand how to cope with homework and balancing the need to work alongside the fun of childhood. Young adults with only half a working heart have to learn how to use their limited energy to make the most of every day whilst still keeping well.

 

Youth message

Going through your final years of secondary school can be a bit daunting, with your SATs and GCSEs to focus on – but it can be a really fun time too as you’ll probably have a great group of friends, your favourite teachers and lessons, as well as feeling like you have more independence.

 

If their congenital heart condition creates a difficulty with learning they should also have a good relationship with the special educational needs co-ordinator and any educational support staff (see information on pages 32 – 33). They may also know the school nurse.

As well as studying a broad range of academic subjects: English, maths, science, music and ICT, for example, pupils may also be studying:

PE

This can be a challenging subject for young people with half a working heart. All pupils should be given an opportunity to take part in the lessons but there needs to be a balance in the competitive part of a session. For more information for pupils, parents and teachers see the LHM Sport and Exercise booklet.

Sex education

All young people need up-to-date information about relationships and sex so these lessons are essential for every pupil, but it is important that young people with only half a heart take some added advice about relationships and contraception in relation to their heart condition. Always ask your cardiologist or specialist nurse for advice. For more information see the LHM Sex and Relationships booklet or visit the Somerville Foundation website, www.thesf.org.uk

Citizenship or PSHE

This is a great subject and ensures that every young person learns more about the country and the world that they live in. If school life is proving to be very tiring this subject may be dropped, but it needs to be discussed with the head of year at school.

Religious education (RE)

This allows a pupil to gain a greater understanding of the world’s religions. The lessons can lead to an academic qualification or not; it is the pupil’s choice.

Home economics

The Department for Education in partnership with health teams and teachers are looking to re-establish home economics into the school curriculum. It is a very important life skill. If it is re-introduced it is important for young people with a heart condition to remember that it is a physical and practical subject so a stool in the classroom may be needed to allow for time to rest within the lesson.

Twilight sessions

In some secondary schools extra teaching periods are added into the day after the normal school day has ended. These twilight sessions offer more education time for students taking a number of GCSEs. These added sessions can of course create problems for young people with complex heart conditions. It is important that the school, parents and the young person discuss the implications of the energy needed to take twilight classes and plan any support that might need to be put in place.

 


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What should you consider when choosing subject options in Year 9?

The most important question is where are the subject choices going to lead? Would further education interest the young person or would they rather go straight into work placement learning? It is important to gain the core subjects at GCSE but it is also important to plan ahead so that any exams gained are going to help with steps forward into the next part of their life. In some schools these may have been decided in Year 8.

 

Youth message

It’s important to think about not just what subjects you enjoy, but what the workload (homework, exams, coursework, etc) for each subject could be and if you would be able to balance it all.

 

GCSEs

The normal requirement for GCSE is to choose a minimum of six subjects.

  • English, maths and science are core subjects and must be studied.
  • It is often possible to combine science to a certain level.

The other subjects can be drawn from a number of areas.

  • Humanities – geography, history and RE come within this group.
  • Arts – art, drama, fashion and music.
  • Design and technology and ICT.
  • Foreign languages – French, German and Spanish, for example.
  • Other subjects that might be on offer are – home economics, sports science, politics, economics, sociology, psychology and business.

International Baccalaureate

Some schools offer the International Baccalaureate as an alternative to A levels. If you are considering this qualification it is important that your GCSE choices provide the right qualifications for entry to the exam. If your school offers this exam system they will be able to inform you of the right pathway to the final exams.

Where can you go from here?

 

GSCE Options

BTEC

Some schools have introduced BTEC Level 2 exams as well as GCSEs which provide the pupil with an opportunity to gain qualifications in practical subjects such as health and social care, performing arts or children’s play, learning and development.

 

Youth message

If you have a good idea of what you’d like to do for a career, e.g. working with children, looking into doing a BTEC might be a good choice for you.

 

What choices should you make if you have half a working heart?

All of the above information still applies to young people with half a heart. They must be allowed to follow their personal aspirations where possible with everyone around them thinking positively about how challenges can be faced but it is also important to give further consideration to:

  • Energy levels – they make a huge difference. It is important to think about the energy levels that a young person with single  ventricle heart disease has. These young people may be very  clever and able to excel in a number of different areas, but they may not need to do 13 GCSE subjects to get themselves on to the A
    Level course ahead.
  • It is not just the day at school that you have to think about: it is homework and course work done at home and time for the fun part of life that every young person needs to fit into their life.
  • When making subject choices it is important to think about the whole subject.
  • Art may seem like a less academic subject but it requires hours and hours of work at home to ensure that you have a whole exhibition to present to the examiner at the end of your course.
  • Music where you learn to compose and perform require hours of  practice at home.
  • Essay subjects like History or RE demand a great deal of writing which some children find tiring.
  • Is a sports science subject going to allow for any energy deficits?
  • Science subjects require serious concentration which some young people with half a heart find difficult because they tire easily in lessons.
  • If you have only half a working heart, a lack of energy may affect concentration levels. How will a young person cope with long science lessons?
  • It is very important to be positive about a young person’s strengths, but think very seriously about the challenges.

Careers advice

It is essential that young people with a complex heart condition consider what sort of employment they are looking to take up at the end of their education.
It would be very unusual for someone with half a heart to be accepted into the armed forces, the police force or fire brigade because they all require a high level of fitness.

A very physical job like being a builder, or road technician or fitness instructor would not be sustainable for most young people with half a heart.

Jobs where you have to stand all day or walk long distances may be too physical for most young people with half a working heart.

It is very important to think about what sort of employment will be possible before you choose your subjects for Year 10 because, if you exclude useful subjects like ICT or design at this stage, it might be difficult to pick them up later.

It may not be sensible to do sports science at the expense of another subject if there is another more useful subject on offer.

Talk to the school’s careers advisor who will be able to introduce you to lots of careers that you may not have thought of before.

 

Youth message

Try to think about the sort of careers that you’d be interested in doing, and do a bit of research into what sort of subjects you may need to achieve that. Remember to be realistic with your goals – a career that is very physical (such as the Army) would probably not be the best career choice for you and your heart.

 

How do we make sure that our concerns are heard?

Formal discussions and assessment

Following Year 9 teacher assessments it is important that teachers, parents and pupils sit down together to discuss the best path through Years 10 and 11. It is also important that these discussions remain ongoing so that the lesson plan can be tweaked and altered as Key Stage 4 progresses.

Pupils and their parents are entitled to a formal assessment and planning meeting in Year 9.

This discussion should be linked to any formal educational support highlighted in an Education, Health and Care Plan. See LHM’s Support for a Child with Special Educational Needs within Nursery, School or Further Education booklet.

 


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Life in Key Stage 4 - Years 10 and 11

Energy levels

One of the most difficult things about being a teenager with half a heart is keeping up with your friends, let alone with your school work. Finding a balance between achieving at school, enjoying a good social life and keeping well can sometimes be difficult. All teenagers test the boundaries of life, sometimes pushing themselves a little bit further than they should, especially if they want to be the same as their peers. Young people with half a heart will be no different so it is important that they gradually understand the choices that they are making. Include them in medical discussions, and encourage them to plan questions to ask their medical team. Always offer them an opportunity to talk through issues that concern them. Just as they gradually learn to take on the independence of adulthood they also need to take on a greater understanding of their heart condition and what it means for their everyday life.

Part of that responsibility is looking at their ability within school, both the physical environment and the educational expectation.

It is very important that any young person experiencing challenges within school is given an opportunity to discuss them both at home and with their teachers in the confidence that their views will be taken seriously and that solutions will be sought to support them.

Some examples

  • An opportunity to leave a classroom early so that they can pace their movement between lessons and protect themselves from busy crushing corridors if they are on anticoagulation or get breathless easily.
  • Having a designated locker that is easily accessible and / or a friend that can help them carry their bags.
  • An opportunity to use the school lift to save walking up the stairs.

 

Youth message

Getting the most out of every day at school is partly up to the teachers, but mainly up to you. Get involved with the discussions about your health and the school day. Make sure that the teachers know about the challenges that you face every day
in school.

Be positive about school, but honest with yourself and the teachers about the things you find difficult, both because you get tired, but also if you feel your heart is working too hard. Make sure you enter into every lesson positively but tell your teacher if you are struggling.

 

Puberty

It is very important to remember that young people in their teenage years will be going through puberty. Their bodies will be growing fast and their hormones will be in a state of flux, creating mood swings and a greater attraction to other young people, all of which affects their decision-making at a time when they will be expected to be and want to be more independent; they will be swinging between childhood and adulthood at this time.

Children who have a single ventricle heart condition often find puberty a difficult physical time. Their body’s sudden growth can affect the balance of their heart condition, creating arrhythmias and changes in their need for anticoagulation and other medication. They are gradually learning more about their heart condition at a time of emotional turmoil. It is also the time when the transfer of care from children’s to adult services is being discussed which may leave them feeling more vulnerable and unsure about their future.

Throughout all this period of change it is essential to remain positive about areas of the young people’s lives that are positive. Encourage friendships and life away from school, ensuring that a balance is kept with their energy levels.

Subject streaming

Throughout secondary school, children will be assessed and moved into classes that ensure that the core subjects are taught at a level where the child can achieve. Some children worry that they are not with their friends, and some feel that they have failed if they move down a set. It is important to give each individual young person the confidence to know that their position within subject streaming has been set out to help them learn. It is essential that pupils, parents and teachers maintain an open dialogue to discuss challenges in learning and seek solutions. It is much more likely that a pupil will do well in a subject if the right support is there to help them learn.

Careers advice

Throughout Key Stage 4, pupils will be encouraged to look at what sort of career they would like when they leave school. Often a careers advisor comes into school to talk to pupils and there is usually a member of teaching staff who takes a lead in working with young people to seek out more information about careers that interest them.

There will be a careers section within the school library and within the public library, so there are lots of ways that young people can learn more about the expectations of a job. There is usually an opportunity to plan some work experience in local firms, shops, schools or playgroups.

When researching either a possible career or a work placement it is important that the amount of energy needed to succeed in a job is one of the deciding factors. Make sure that the careers advisor understands not only their educational interests, but also their physical challenges.

There are lots of jobs out there for young people that do not demand a great deal of physical energy.

 

Youth message

You might not think that you need to worry about jobs just yet, but having half a heart means you may need to think about your future career more carefully and earlier than your peers. You have to think about working hours, how physical it might be, what qualifications you need, as well as of course if it’s what you want to do.

 

Homework

There are no two ways about it: homework has to be done. It is impossible for teachers to fit all that has to be learnt, and practice with maths, essay writing or research, into the school week. If a young person with a complex heart condition finds it hard to keep up with homework it is important that compromises are made, not in doing the homework, but when it needs to be submitted. This is also one of the factors involved in deciding how many subjects to study.

Talk to the teachers before pupils get into trouble for not handing work in on time.

Extracurricular activities

School is not just about lessons, it is also about an all-round education that allows you to explore different aspects of life. There are always after-school clubs that young people can join. The sports clubs may be more of a challenge but drama, choir, design, French, debating, cookery or school council activities can all be good.

It is important to weigh up what is going to help each young person move forward, balance their energy levels, grow, become independent and have some fun and games. Every young person deserves to do things they enjoy.

School trips

School trips or residential visits are a great part of Key Stage 4. Trips abroad and day trips out to see historical or geographical sites are important parts of subject research. Young people with complex heart conditions should not be excluded from taking part, but sometimes added arrangements and protections must be put in place to ensure that they remain safe through this type of activity.

Children from junior school age upwards (and occasionally earlier) may be offered opportunities to participate in residential trips, as a way of enhancing their education, or as part of an extra-curricular club such as Cubs or Scouts. These trips are an exciting part of education and growing up, but there can be difficulties in terms of ensuring access to a trip, considering who will support a child, and knowing whether or not a parent is required to accompany them. Regarding school trips, the Equality Act requires that schools make ‘reasonable adjustments’ to include children with disabilities in all areas of the curriculum, including off-site activities.

Planning for residential trips should take place well in advance. If the school or club regularly use the same venue, it might be worth talking to them about your child’s needs before their visit, so that they can consider how the location will suit your child when they are on site with the previous group. If it is a new venue, find out when the ‘party leader’ (teacher or other adult in charge of the trip) is going to visit, and work out a list of questions relating to your child’s needs.

With your input, the school or club should carry out a full risk assessment, which should cover all proposed activities and free time. You may wish to ask your cardiac specialist nurse to check through the risk assessment.

Bullying

Sadly in every environment there is a risk of bullying. Children can sometimes be nasty to each other.

If there is any sign that a young person is being bullied it is essential that they, with their parent or guardian, go to see the head of year or school.

Every school has an anti-bullying policy, so the school should have a policy that they put in place to support the child who is being singled out.

It is important that young people have the confidence to seek help. In fact confidence helps them to fend off the bully in the first place, because often bullies will avoid being nasty to stronger characters.

Helping any child to have confidence in themselves is essential. Drama, public speaking, singing, music, even playing computer games helps young people gain confidence. It is also important to allow them to talk at the dinner table, entering into everyday family conversation. Encourage them to learn about the world around them, watch the news, listen to music: it all helps them to find their place in the world.

 

Youth message

If you are being bullied, the most important thing to remember is that you are not alone. Talk to an adult about what is going on – your parents would be a good choice but if you don’t feel like you can, you probably have a favourite teacher that you could talk to. If you are being bullied, remember it is not your fault and there is nothing wrong with being different.

 

Coursework

Coursework provides part of a final exam mark. Set throughout the two-year GCSE course, different sections of a subject will be assessed by asking for a bigger piece of work that may take some days or even weeks to complete. Although the government are restricting coursework there are still some subjects where coursework will form part of the final assessment. Art, design and technology and music are just some examples. Coursework is a brilliant way to collect marks towards a final grade. Pupils who struggle with normal tests have an opportunity to show their aptitude in a subject.

Work experience

All secondary pupils are expected to take part in some sort of work experience in Years 10 or 11. The aims of this opportunity are to broaden the young person’s horizons and to give them a chance to experience a working day. Care will need to be taken when planning where a young person with a complex heart condition should go for their experience and potential employers will need to understand the challenges that the young person might face during a working day or week.

Exams

It is very important that young people get used to the exam structure that they will need to undertake all the way through school. Ongoing testing and timed essays all help pupils learn about planning and timing. For a pupil who has educational challenges it is a really good time to be able to assess their strengths and weaknesses. Any concerns should be raised with the school’s special educational needs co-ordinator (SENCO) as the school years progress so that support provision can be introduced.

For some that will mean extra exam time so that a pupil has time to plan what they are going to write. For others there will be aids to help them get their answers to exam questions down on paper or on a computer. Some pupils will need to leave the exam room to visit the toilet because of medications, so will be allowed to stop the clock, while others may need to start a second exam of the day later than everyone else to allow them to rest between the tests.

Any exam concessions are applied for by the SENCO or specialist assessor to the Joint Council for Qualifications (JCQ). This should be done well in advance of the final exams and should be part of your child’s normal way of working, for example, using a laptop for subjects that require writing at length.

Exams in hospital

If your child is in hospital when they are due to take important exams such as GCSEs, please talk to the staff from the hospital school. They are very experienced at supporting children in hospital and will help you to make a plan, then liaise with the school if necessary to administer the exams appropriately, taking account of their health and needs at the time.

Exam tips

  • Get plenty of sleep every night. Teenagers need more sleep than adults, so planned lie-ins are a good thing on non-school days. Go to bed at a reasonable time, limit late-night computer games and TV because they stimulate the mind at a time when the body should be winding down for sleep. If you are having problems sleeping, talk to your specialist nurse, cardiologist or GP: they may be able to help with some relaxation exercises.
  • Eat regular protein-filled meals and planned healthy snacks. If you have half a working heart it is very important to eat little and often so that you keep up a steady supply of energy in the shape of food going into your body. Remember that anyone with single ventricle heart disease uses up most of the food they eat running their inefficient hearts. Don’t eat highly sweet or salted food, but things like beans on toast, peanut butter sandwiches, nuts and fruit. The occasional chocolate bar won’t hurt but must be in moderation.
  • Drink plenty of water to keep hydrated. Fizzy drinks occasionally as a treat are OK but they contain lots of sugar which is bad for teeth. The best way to keep blood flowing well is to drink plenty of water.
  • Enjoy the occasional cup of coffee but try not to drink too much as caffeine can raise your adrenaline levels which can cause arrhythmias.
  • Reduce anxiety levels by planning relaxing activities, such as going to the cinema, bowling with your friends or just having some mates round to watch a film.
  • Plan your study time in the weeks before an exam so that it is not a last-minute rush. If you have problems with limited energy levels and limited concentration, working to get information into long-term memory over weeks means that it might stay in your mind for longer. Quick information cramming usually means that the information will also leave your memory quickly.
  • Plan some physical activity if you have the energy to do so: take a short bike ride, go for a swim or even (if your body can cope) go for a short walk. Fresh air and exercise help to freshen up your mind and release stress.
  • Don’t forget to take all of your medications on time. Your body will be more anxious than normal so everything that can be regular should stay that way.
  • Talk to your teachers about planning your exams. Do you need extra time, support with writing or a break in the exam if you find the length of time sitting difficult? See the section on Exam support.
  • Organise yourself with a timetable of your exams so that you know where you have to be and when. Give yourself plenty of time to get to school before the exam starts so that you can calm down before you have to start concentrating. Pack up your pens, rulers and any other equipment the night before the exam so that it is not all a rush the next morning. Remember your exam number!

 


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Support with health conditions and learning

Under new statutory guidance every child with complex heart disease should have a Healthcare Plan, a document that identifies the level of support your child needs in regard to their health throughout the day in school, signs and symptoms to watch out for and what to do in an emergency. Are they on anticoagulation, do they get arrhythmias, do they become tired and breathless on simple exercise like walking up the stairs? This information should be provided by the specialist congenital cardiac nurses from the congenital cardiac unit and passed on to the designated school nurse and the teaching and support staff at the school.

Statutory Guidance for Managing Medical Conditions in School sets out the rules for this area of care. More information can be found at www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions–3

Many children with complex congenital heart disease require support to aid their learning in school. Most pupils will have had those needs identified during their primary education or the first part of secondary school. However, if needs become apparent later in their school life there are a number of processes that can be followed to ensure that they get the help they require to achieve their full potential.

How will we make sure that our concerns are heard?

If a child, parent, teacher or school team identify that a pupil may have special educational needs they will need to organise a learning difficulty assessment. This is normally conducted by the special educational needs co-ordinator (SENCO) in school and may involve other professionals.

Some children will need further support with their educational needs. The guidance for this provision can be found in detail at www.gov.uk/children-with-special-educational-needs/extra-SEN-help and in the LHM Support for a Child with Special Educational Needs within Nursery, School or Further Education booklet. It is a tiered plan that ranges from an in-house support provision to added external funding. Over the coming years this system is replacing the Action Plus and Statementing process and will revolve around added funding rather than hours of service provision.

If a young person with only half a heart does not have any or all of these assessment and support tools set in place and the young person or their parents have identified that there are issues with learning, they need to make an appointment to talk to the school’s designated SENCO about their relevance in their individual case.

 


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Work-life balance

Throughout this education booklet we have explored ways that young people can approach school life. It is important to remember that every child is different, as is their potential for learning and ultimately independent living. It is essential that everyone involved in their education looks positively at the opportunities that are available to help a child move forward.

Most young people with a single ventricle heart condition can go to work and find a balanced independent life like their peers.

 

Youth message

If you feel that you are struggling to balance your school life and everything else, talk to your parents and teachers to see what can be done to help. You will most likely have something called a Healthcare Plan which says what sort of support you need because of your heart – such as if you need extra time to get to your classes, or support with doing homework. Asking for help is not a bad thing, and everyone just wants to make sure that you can make the most out of your time in school and achieve your full potential.

 


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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 (HCP)

A document held in school relating to your child’s medical condition(s), identifying the level of support your child needs throughout the day, signs and symptoms to look out for and what to do in an emergency.

Individual Education Plan (IEP)

Details how the school will meet the needs of your child, for example, interventions and support they may receive.

Key Stage 3

Also known as KS3, this is the phrase used for the three years of schooling that cover Years 7, 8 and 9 (when your child is aged between 11 and 14).

Key Stage 4

Also known as KS4, this is the phrase used for the two years of school education which incorporates GCSE education in Years 10 and 11 (when your child is aged between 14 and 16).

LA

Local authority (previously Local Education Authority or LEA).

My Support Plan (MSP)

Similar to an IEP but more detailed and usually a prerequisite to applying for an EHC Plan.

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.

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)

The Information, Advice and Support (IAS) Services Network provide information, advice and support to disabled children and young people, and those with SEN, and their parents. They are statutory services which means there has to be one in every local authority.

www.councilfordisabledchildren.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 Parental 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 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

Exams

www.nhs.uk/conditions/stress-anxiety-depression/pages/coping-with-exam-stress

The Somerville Foundation

Supports young people and adults born with a heart condition from 16 years of age.

Tel: 0808 854 759
www.thesf.org.uk

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

 

Updated: April 2016

Review due: April 2019

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