Key Stages 3 & 4
Secondary School
Years 9 - 11
Contents
Introduction
Page 4
Expectations in the Final Years of School
Pages 5 - 7
What Should you Consider when Choosing
Subject Options in Year 9?
Pages 8 - 15
Life in Key Stage 4 - Years 10 and 11
Pages 16 - 25
Exam Tips
Pages 26 - 27
Support with Health Conditions and
Learning
Pages 28 - 29
Work-Life Balance
Pages 30 - 31
Key Terminology and People
Pages 32 - 33
Further Information
Pages 34 - 35
Notes
Pages 36 - 37
Acknowledgements
Page 38
3
Introduction
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 booklet 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 booklet 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.
4
Verified by Emma Canetti
April 2016
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.
Year 9
Young people entering Year 9 will be nearly half-way through their
secondary school education. They will have established their
friendship groups and worked out who their supportive teachers are.
Key Stages 3 & 4 - Years 9 - 11
5
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.
6
Verified by Emma Canetti
April 2016
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.
Key Stages 3 & 4 - Years 9 - 11
7
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.
Y English, maths and science are core subjects and must be studied.
Y It is often possible to combine science to a certain level.
The other subjects can be drawn from a number of areas.
Y Humanities - geography, history and RE come within this group.
Y Arts - art, drama, fashion and music.
Y Design and technology and ICT.
8
Verified by Emma Canetti
April 2016
Y Foreign languages - French, German and Spanish, for example.
Y 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?
GCSE / BTEC Level 2
GCSEs
A Levels
BTEC Level 3
University
degree
Apprenticeship,
work, training
Higher Apprenticeship
training
Work
Key Stages 3 & 4 - Years 9 - 11
9
,,
,,
Don’t feel pressured to take too many subjects. Keep it
simple and make sure they are subjects you enjoy. I was
forced to take too many subjects and had to drop some to
cope. Don’t get stressed - you need to enjoy life.
10
Verified by Emma Canetti
April 2016
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:
Y
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.
Y 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.
Y When making subject choices it is important to think about the
whole subject.
Key Stages 3 & 4 - Years 9 - 11
11
Y 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.
Y Music where you learn to compose and perform require hours of
practice at home.
Y Essay subjects like History or RE demand a great deal of writing
which some children find tiring.
Y Is a sports science subject going to allow for any energy deficits?
Y Science subjects require serious concentration which some young
people with half a heart find difficult because they tire easily in
lessons.
Y 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?
Y It is very important to be positive about a young person’s
strengths, but think very seriously about the challenges.
,,
When choosing GCSEs you would think that your heart
condition wouldn’t affect your decision, but in fact it has
a bigger impact than you think. When I had to choose
which GCSEs I would take, I took into consideration my
concentration levels, how I am affected by the cold and
how quickly I get tired. For example, I did not choose PE
because it requires a lot of physical activity, often done
outside. I also had to consider the amount of workload
that I would get, so I chose to do art instead of a more
workload-based subject like history. Choosing art meant
that I could work at my own pace as it was all courseworkbased.
12
,,
Verified by Emma Canetti
April 2016
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.
Key Stages 3 & 4 - Years 9 - 11
13
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.
,,
,,
My son’s school didn’t want to include him initially until we
pointed out he had recently been to the UN to represent
one million children, so we were sure he could represent
himself!
14
Verified by Emma Canetti
April 2016
,,
,,
Never choose what your friends are doing: pick what you
find interesting and challenging.
Key Stages 3 & 4 - Years 9 - 11
15
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
Y
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.
Y Having a designated locker that is easily accessible and / or a
friend that can help them carry their bags.
16
Verified by Emma Canetti
April 2016
Y 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
Key Stages 3 & 4 - Years 9 - 11
17
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
18
Verified by Emma Canetti
April 2016
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,
Key Stages 3 & 4 - Years 9 - 11
19
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.
,,
,,
For me, school was the best time of my life; I would do
anything to go back. I never let myself miss out on things
so made sure I joined clubs that I could easily do, like
choir. I loved singing and performing in front of people
and, knowing I could do that without my heart condition
stopping me, was a great feeling.
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
20
Verified by Emma Canetti
April 2016
,,
,,
If your child really wants to go on a trip, don’t be put off by
the school. With the right provision and planning it will go
well and do wonders for your child’s confidence.
Key Stages 3 & 4 - Years 9 - 11
21
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
22
Verified by Emma Canetti
April 2016
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
Key Stages 3 & 4 - Years 9 - 11
23
24
Verified by Emma Canetti
April 2016
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.
Key Stages 3 & 4 - Years 9 - 11
25
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.
26
Verified by Emma Canetti
April 2016
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!
Key Stages 3 & 4 - Years 9 - 11
27
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-atschool-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
28
Verified by Emma Canetti
April 2016
needs. The guidance for this provision can be found in detail at www.
gov.uk/children-with-special-educational-needs/extra-SENhelp 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.
,,
,,
Don’t be afraid to challenge school if you feel provision
isn’t right. Also think outside the box - if reading a lot of
material tires a child, perhaps find a YouTube video on the
subject for them to watch.
Key Stages 3 & 4 - Years 9 - 11
29
,,
,,
Balancing a working life with a heart condition can be
difficult but with the right support from your employer,
family and friends it can be really fun. I love working and
it’s been great learning how to do new things and it’s great
meeting a wide range of people!
30
Verified by Emma Canetti
April 2016
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.
Key Stages 3 & 4 - Years 9 - 11
31
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).
32
Verified by Emma Canetti
April 2016
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 schoolbased provision plan sets out the added support for each individual
child.
Key Stages 3 & 4 - Years 9 - 11
33
Further Information
Little Hearts Matter
Other booklets available from LHM which may be useful.
• Support for a Child with Special Educational Needs within Nursery, School or Further Education
• Healthcare Plans for Children and Young People with a Single Ventricle Heart Condition
• Sports and Exercise
• Living with Anticoagulation
Tel: 0121 455 8982
www.lhm.org.uk
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.aceed.org.uk
34
Verified by Emma Canetti
April 2016
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/copingwith-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.
Key Stages 3 & 4 - Years 9 - 11
35
Notes
36
Verified by Emma Canetti
April 2016
Key Stages 3 & 4 - Years 9 - 11
37
Acknowledgements
Written by:
Suzie Hutchinson RGN; RSCN
Chief Executive and Service Lead
Verified by:
Emma Canetti BA (Hons), PGCert (History),
Edited by:
LHM Parent Information Team
Designed by:
Deb Rahman
Information Administrator
Little Hearts Matter
Proofed by:
Isabel Baumber BA (Hons); DipM
Parent Trustee
David Beattie M.Phil., MITI
Illustrations by: Alan Birch
Disclosure:
Emma Canetti has no conflict of interest
PGCert SpLD (dyslexia), NASENCO
We would like to thank LHM families for reviewing this publication
and sharing their experiences.
References are available from the LHM office on request.
38
Verified by Emma Canetti
April 2016
Telephone: 0121 455 8982; Email: [email protected]
www.lhm.org.uk
© 2016 Little Hearts Matter
A company limited by guarantee, registered in England and Wales, number 06442071, registered office 75
Harborne Road, Edgbaston, Birmingham, West Midlands, B15 3BU, registered charity number 1123290.
LHM KS3&4EB 0416
Review date 0419