Supporting a young person with arthritis at school


Download Supporting a young person with arthritis at school


Preview text

Supporting a young person with arthritis at school

We’re the 10 million people living with arthritis. We’re the carers, researchers, health professionals, friends, parents and teachers all united in our ambition to ensure that one day, no one will have to live with the pain, fatigue and isolation that arthritis causes.  Our information is a collaboration of experiences, research and facts. We aim to give you everything you need to know about how arthritis can affect children and young people’s school life and what you as teachers, staff, governors and school leaders can do to help. If you have any questions or would like some more advice and support, please get in touch with the Versus Arthritis Young People and Families Service, by emailing: [email protected]
Registered office: Versus Arthritis, Copeman House, St Mary’s Gate, Chesterfield S41 7TD Registered Charity England and Wales No. 207711, Scotland No. SC041156.

What’s inside?

Introduction

4

The importance of good communication

5

What is arthritis in young people?

7

Getting around school

11

Difficulty writing

13

Pain and stiffness

14

Fatigue and brain fog at school

16

PE and sports

17

Time off school and keeping up with work

19

Mood and mental health

21

Arranging school trips

22

Exams and coursework

23

Career aspirations

23

Expert help and support for your school

24

You can be the difference

25

Introduction
Having arthritis as a young person can make aspects of school life very difficult. But there are several ways that you as a teacher or member of school staff can help, and you could be the difference that means your student is happy and successful at school.
They may need some changes to their routine and physical environment. For the school, these relatively minor changes should be straightforward to implement, but for the young person the benefits could be huge.
By law, schools are required to make sure that having a condition like arthritis doesn’t put a young person at any disadvantage to their peers in terms of accessing their school or learning. There is plenty of support available to help you make any reasonable adjustments, including the possibility of financial support.
Having a rare and long-term medical condition like arthritis can be an isolating experience for a young person and it will likely affect their mental health.
We have worked with some fantastic young people to create this comprehensive guide to help key staff understand how to ensure a young person with arthritis has a positive time at school and is able to achieve their potential. The quotes throughout are genuine ones from the young people we worked with.
We’ve also created an at-a-glance factsheet that you can share with colleagues who might not be working with the student as closely as their core group of teachers, but who will benefit from top-level information about how arthritis affects young people. You can download this factsheet at: www.versusarthritis.org/information-for-teachers

4

versusarthritis.org

The importance of good communication
You’re not expected to be an expert in arthritis overnight. Having good two-way communication with the young person and their family is a great place to start.
If someone with arthritis is joining your school, invite them to look around and have a chat about how their condition affects them and what support they need. It’s important to keep this conversation going throughout their time at school.
It will help to write a care plan for the pupil, in consultation with the young person and their parents. These plans may have different names around the country, such as individual healthcare plan or individual education plan. The plan should contain information about their condition and medication, and how both could impact on their school life and education. It should set out the support they will need. It’s important the plan is kept up to date.

versusarthritis.org

5

If you have access to one, your school nurse or community nurse should be able to help you write the plan, and you might be able to get input from the young person’s healthcare team. You could ask the parents if they can set this conversation up.
Your school may have its own care plan form, but we have a template with further information about JIA.
Ensuring that a wide range of teachers know about the young person and their needs can help. Problems have occurred in the past with staff outside of the young person’s core group of teachers, who weren’t aware there was a pupil with arthritis in the school.
Young people don’t like having to regularly tell adults about their arthritis and the problems it causes, so raising awareness among your colleagues would help avoid this.
Providing practical help and understanding will make a big difference, and it’s best if you can make any agreed changes subtly, as they won’t want to stand out from the crowd. They also won’t want sympathy or pity.
Sometimes I’ve used up every single ounce of energy to simply get into school.
If you’d like to have a copy of the Versus Arthritis individual healthcare plan, visit: www.versusarthritis.org/ information-for-teachers or email our Young People and Families Service at: [email protected]

6

versusarthritis.org

What is arthritis in young people?
When children get arthritis, it’s called juvenile idiopathic arthritis (JIA). This is a long-term condition. Juvenile means it was diagnosed before the age of 16. Idiopathic means we don’t know what caused it, and arthritis means inflammation in a joint.
In the UK, an estimated 12,000 children under 16 have JIA.
It sometimes takes a while for a young person to get an official diagnosis.
The main symptoms of JIA are pain, swelling and stiffness in joints. Commonly affected joints include those in the hands, knees, elbows, back and feet. At times it can be very difficult to move joints.

versusarthritis.org

7

JIA is different from osteoarthritis, which affects around nine million people in the UK. Osteoarthritis tends to affect people from around the age 50 and is caused by mechanical changes and damage in a joint.
JIA is an autoimmune condition. The young person’s immune system is overactive and causes unnecessary and harmful inflammation in joints and elsewhere around the body.
Young people with arthritis often experience fatigue. This is an overwhelming tiredness that can’t be cured with sleep or rest. It can make it difficult for your pupil to concentrate and this is sometimes referred to as ‘brain fog’.
JIA is invisible and unpredictable. Your pupil may seem perfectly well one day, and then be stiff, exhausted, and in a lot of pain the next. The sudden worsening of symptoms is known as a ‘flare-up’ or ‘flare’.
No day is the same; I may have a great, low pain day and feel like I can run a marathon, and the next day be unable to get out of bed due to the pain.
Young people with JIA can get inflammation in their eyes, known as uveitis. This is treatable, often with the same drugs used to treat their arthritis. They may also need eye drops. Without treatment it can cause serious and permanent damage to someone’s eyesight, potentially even blindness. Uveitis could affect a young person’s eyesight in school.
There are several types of JIA. For more information about the various types of JIA, visit: www.versusarthritis.org/juvenile-idiopathic-arthritis/

8

versusarthritis.org

Other musculoskeletal conditions

There are other conditions that can affect young people’s joints, muscles, bones and tendons – known as the musculoskeletal system.

Like JIA they can cause pain, stiffness, fatigue, isolation, and affect the young person’s mental health. Therefore, some of the content in this booklet should be helpful for your school when supporting a young person with one of these conditions.

Here is some top-level information and where you could turn to for further support.

• Lupus can cause inflammation in any part of the body. It’s an unpredictable condition that can cause lots of problems. Some of the more common symptoms are joint pain and swelling, skin rashes, and fatigue. It can potentially cause inflammation in major organs, such as the kidneys, heart, lungs, and the nervous system. For more information see: www.lupusuk.org.uk/lupus-in-young-people/

• Myositis is the name for a group of rare conditions that affect the muscles. The main symptoms are weak, painful, or aching muscles. The main types of myositis are polymyositis, which affects many different muscles particularly the shoulders, hips and thighs, and dermatomyositis, which affects many different muscles and causes a skin rash. For more information see: www.myositis.org.uk

• Scleroderma is when skin, either on the outside or the inside of the body, hardens like scar tissue. There are different types of scleroderma and the most common type that affects children is called localised scleroderma, which means that only the skin is involved. A very small number of children get systemic sclerosis, which can affect the skin and internal organs. For more information see: www.sruk.co.uk/scleroderma/scleroderma-children

• Joint hypermobility is when someone has very flexible joints,

which can cause pain and tiredness. It can affect balance and

co-ordination and, in some cases, cause joint dislocations.

Treatment involves improving muscle strength and fitness.

For more information see the School Toolkit for joint hypermobility

(JHS) and Ehlers-Danlos syndrome (EDS) and JHS:

verhstutspasr:t/h/trihteiss.ocrhgooltoolkit.org

9

Medication for JIA and other conditions affecting the immune system
If it’s not treated, JIA can cause long-term damage to joints. Thankfully, there are many good drugs to treat JIA.
In JIA the problem stems from an overactive immune system. Therefore, many treatments work by suppressing the immune system. This is the same principle in treatments for lupus, myositis, and scleroderma, which are also autoimmune conditions.
Methotrexate is commonly given to children with arthritis, and this drug can greatly improve symptoms. But, it can make young people feel very sick and exhausted.
Methotrexate is taken once a week and any side effects usually happen around the time it’s taken. So, your pupil may feel anxious and upset before they’re due to take it, and then feel poorly after they’ve taken it.
If a young person is experiencing side effects from their medication, they might need to take some time out in a quiet room, such as a school nurses’ office if you have one.
Drugs that suppress the immune system can make a young person more likely to pick up infections, which can then be more serious. This makes it important that your school practises good general hygiene procedures, and strictly observes the rule that children with sickness or diarrhoea stay off for 48 hours.
Chickenpox can be more serious for young people on drugs for arthritis. It’s important to let the young person and their family know straight away if there are any cases, especially if they may have been in contact with someone with chickenpox.
Some drugs, as well as the arthritis itself, can make the young person more sensitive to the sun. In the summer term, it’s important they wear sunscreen. Ask the parents if this is an issue. If so, you might need to remind them about this, or younger children might need your help.

10

versusarthritis.org

If a drug isn’t treating their condition well enough, or is causing severe side effects, they could be taken off it and tried on something else. Therefore, your pupil could be on several treatments during their time at your school. They may be anxious when they change drugs, their condition might flare, or they could experience new side effects. Once someone is on the right drug for them, it can dramatically improve their health.
Meds are awful. They mess with your guts and some days I might need to step out of class to pop to the bathroom, or to get some air.

Getting around school
Arthritis can affect a young person’s ability to walk. They may find it difficult to get around school and feel vulnerable in busy corridors or on stairs. At times they may need to use crutches or a wheelchair.
They will probably find it difficult to carry heavy bags.
If a young person with arthritis is struggling to walk between lessons in good time, it would be useful to have a gentle private chat with the pupil to look for solutions. Young people can get upset if they can’t keep up with their peers and get embarrassed coming into lessons late.
The following measures have helped young people with arthritis:
• Schools have designed timetables to limit the amount of walking the student has to do and ensures they avoid busy corridors and stairs.
• Having one or two friends always accompany the pupil around school gives them practical and emotional support.
• Being able to leave books and equipment in a locker or classroom located near their classes.

versusarthritis.org

11

• Having permission to leave class a few minutes before the end of a lesson, to help them get to their next lesson.
• Flexibility with uniform, such as wearing trainers that provide comfort and support.
• Being given passes to get around the school during lesson times. • Being able to use a lift, if there is one in school. • Handrails on both sides of stairs. • Having duplicate books, so they can leave some at home and
some in school. • Digital resources for schoolwork, so they don’t have to carry
books around.
Being able to arrive to lessons 5 minutes late meant I could use a quieter set of stairs and avoid being trampled.

12

versusarthritis.org

Difficulty writing
JIA can affect young people’s hands and wrists. This can make writing even small amounts difficult and painful.
I always feel pressured to keep up in lessons and when the class is finished writing I am still going and can’t relax.
Some solutions young people told us about: • Notes being available at the start of a lesson, so they don’t have
to write everything down. • Having a laptop, tablet or a similar device to work on. • Taking photos of notes on a board. • It would help if the young person faces the front of the class,
so they don’t have to twist around to see things. • Pencil or pen grips. • Keeping the amount of writing to a minimum and if they have
to write, giving them regular breaks. • A sloped desk might help the young person, because the angle
means they won’t have to lean over. Good overall posture when they are writing is important. • Managing how much homework they are given, particularly written, so they don’t have too much to do in one go. Could a parent or another family member be a scribe for their homework if a task requires writing?
Doing a lot of writing can cause issues and lead to me being out of action for days.

versusarthritis.org

13

Pain and stiffness
When I am in pain sometimes it makes it harder for me to concentrate, so some fresh air would help.

Pain and stiffness are among the most common and difficult challenges for a young person with arthritis.
Sitting still for too long is not good for someone with arthritis. It will help if they can get up, stretch, and walk around regularly. However, the young person may feel self-conscious doing this.
Talk to the young person about how they think this could be incorporated into lessons and into their day. The following might help:
• The young person being given errands to do, such as taking something to the office or to another teacher.
• Having a subtle and agreed way for the young person to let teaching staff know they’re in pain, maybe a card they could pass to the teacher, putting a badge on, or placing a particular item on their desk. They may be perfectly happy to just tell you.
• Teachers could ask the whole class to stand up, move around and stretch at regular intervals to avoid the young person with arthritis feeling singled out and embarrassed. After all, it’s good for everyone to move around regularly.
Some school chairs might be uncomfortable for a young person with arthritis, particularly if they are small and hard. Sitting on the floor can be painful and difficult, and stools without back rests, such as those often in science labs, can cause problems.
Talk to the young person about seating arrangements and what chairs are comfortable for them. Talking to the young person’s occupational therapist about this, as well as other aspects of school life, would help. Ask the parents if they can set up this conversation.

14

versusarthritis.org

I struggled to sit on the stools in the science lab. I used to be quite sore after sitting on those.
Pain and stiffness from arthritis is often worse in the mornings and some days your pupil may struggle to get in on time. They might find morning lessons difficult.

I might be laughing and joking with my friends but the next minute I could be in pain.

Since the COVID-19 pandemic, teachers are often encouraged to keep windows and doors open to improve ventilation. This can cause problems for young people with arthritis, as the cold can make pain and stiffness worse. Talk to your student about ways to avoid this being a problem.

versusarthritis.org

15

There may be things the young person likes to do if they’re in pain. Talk to them and see if they can be accommodated. It might be they need to take some pain medication or rub pain relief cream into a joint and sit in a quiet room. Working out a plan for taking pain medication during school hours will be important.
My Head of Year always made sure to check up on me, and if ever I told him I was in pain he would always see if I needed anything or he’d arrange help to get me home.
Fatigue and brainfog at school
Overwhelming tiredness, or fatigue, is very common among young people with arthritis. The psychological aspects of this on a young person can’t be underestimated. Young people also talk about ‘brainfog’ when they’re unable to concentrate. They can feel detached from what is going on around them. Having arthritis can make it difficult for a young person to get enough sleep, which can further affect concentration levels and mood. If their fatigue is bad, the young person may need to rest in a quiet room. There’s no cure for fatigue, but good understanding, kindness, and trying to accommodate the young person’s proposed solutions will help.
If you ask me a question when I have brainfog, you’re most probably not going to get a very good answer.

16

versusarthritis.org

PE and sports
I was given physiotherapy exercises from the hospital to help with hypermobility and JIA. My parents let the school know and my PE teacher worked my physio exercises into the warm up and warm down sessions. None of the other pupils knew so I didn’t feel singled out as it was something we could all do. It really helped me feel included and it meant I was getting the exercises done as well.

Many young people with arthritis have told us about problems they’ve had with PE lessons. Sometimes they might not be able to do everything their classmates can. For example, physical contact sports and exercise in the wet or cold might not always be possible.
They might feel nervous and embarrassed at the prospect of doing physical activity in front of their classmates.

versusarthritis.org

17

Young people with arthritis have told us they want to take part in PE whenever possible, at a level appropriate to them.
PE lessons can and should be positive experiences for a young person with arthritis and there are lots of ways that PE can be accessible to them. The best approach will involve talking to the young person to find out what is and isn’t possible.
PE was all or nothing. It was aimed at people with high level ability. I’m not going to be able to play rugby on a cold day. It could be lashing down with rain, and everyone had to go outside. If I tried to join in, I felt embarrassed if I couldn’t do it and I had to stop. I used to dread going to PE each week.
Physical activity is a key aspect of managing arthritis well. For example, having strong muscles can take the strain off a joint affected by arthritis. The right type of exercise can help a young person stay flexible and have a good range of movement in their joints.
A young person’s arthritis can vary greatly from day to day. On days they can’t do PE, it would be kind to make sure they know they’ve not done anything wrong and not draw attention to them.
An understanding PE department could be a huge help to a young person with arthritis.
It would be good to make sports days accessible for all, and not put pressure on young people with arthritis to do more than they’re capable of.
I remember having to choose five events I had to compete in at sports day – this wasn’t optional. Sometimes people with JIA can struggle with some sports. I performed really poorly which was embarrassing in front of so many people!

18

versusarthritis.org

Time off school and keeping up with work
Young people with arthritis will probably miss more school days than their peers, due to medical appointments and their condition in general.
If the young person has a bad flare up of symptoms, they might need a prolonged length of time off school.
Missing school can cause a huge amount of anxiety and worry, as well as affecting their education.

When I am home from school with a flare up it’s not because I don’t want to be in school, I genuinely cannot move.

versusarthritis.org

19

Preparing to load PDF file. please wait...

0 of 0
100%
Supporting a young person with arthritis at school