When a Young Person Has Arthritis (for teachers)
An Information Booklet
Who is this booklet for?
This booklet is aimed at teachers and other staff working in schools or in education generally. It provides basic information about arthritis in children, explains how arthritis may affect children's lives in school, and suggests how schools can help children with arthritis lead as normal a life as possible.
What is arthritis in children?
Few people have heard of arthritis in children. Most people think of arthritis affecting older people. In children the condition is relatively rare. It affects about 1 in 1,000 children in the UK. This makes it about as common as childhood diabetes. It can strike at any age, although it often starts before the age of 5. It affects both boys and girls, although it is generally more common in girls.
Doctors call arthritis in children 'juvenile idiopathic arthritis' (JIA). The term is used to describe arthritis (of no known cause) in someone under 16 which lasts for 6 weeks or more. Although some symptoms are the same as arthritis in adults, usually it is a different condition.
There are several types of JIA. They all share the symptoms of painful, swollen and/or stiff joints – called 'inflammation'. This may affect knees, elbows and wrists or other joints such as hips, neck and shoulders. Apart from inflammation in the joints, different types of arthritis have other different symptoms.
Every child with arthritis is different. Each child has different symptoms and responds differently to treatment. For some children arthritis can be very mild and the symptoms disappear after a few years, often forever. About 3 in 5 children with arthritis (60%) have few or no physical problems as adults. Children with mild symptoms may cope in school without any extra help. Other children will have more severe problems, which cause difficulty with mobility and use of hands and fingers (fine motor skills). Although medicine generally controls their symptoms, some children may need help in school, such as assistance in the classroom, special aids or adaptations, or even home tuition. A few children will need a 'Statement of Special Educational Needs' to arrange sufficient extra help.
However mild or severe their symptoms, better understanding of a child's condition on the part of school staff and other children in school helps enormously in ensuring they enjoy the best learning environment and have full access to the National Curriculum.
What are the different types of arthritis in children?
When a school is notified that a child has JIA, it is likely s/he will have been diagnosed with a particular type of the condition. It is helpful to know how different types may affect children, although this does vary.
Oligoarthritis
This is the most common form of arthritis in children and also the mildest. Inflammation affects only a few joints (up to four) at first, but may later spread in some children to other joints (this is called 'extended oligoarthritis'). Children with oligoarthritis need regular eye tests to check for a condition called 'uveitis'. This is inflammation in the eye, which can cause permanent damage and even blindness if not treated early. Usually there are no symptoms until damage has been caused, hence the importance of regular eye tests. These are likely to involve some time off school.
Polyarthritis
This means more than four joints are affected in the first 6 months of illness. Children with polyarthritis are tested for a blood marker, the rheumatoid factor (RF) antibody. Most are RF-negative (they don't have the RF antibody). As well as the joints, tendons in the hand can be affected. A few children with polyarthritis are RF-positive (they do have the RF antibody). This type of polyarthritis usually develops in older girls, over 10.
Systemic arthritis
This type of arthritis has particular symptoms. It frequently starts in children under 5, beginning with a fever which peaks every day and lasts several weeks. Children may be ill for a long time before the cause is diagnosed. Problems with the joints develop later on. Some of these children recover after one bout of illness and suffer no long-term problems, while others have repeat 'flare-ups', over several years. They may develop arthritis in many joints. They may also have delayed growth until their disease comes under control.
Psoriatic arthritis
This is a rare form of arthritis, linked with the scaly skin rash of psoriasis, although the psoriasis may not develop until later. It commonly affects girls, starting at about 8–9 years. It can cause painful joints in the fingers and toes and may affect other joints too.
Enthesitis-related arthritis
This is also relatively rare. It commonly affects the legs but can also cause swelling where the tendons are attached to the bones, such as the Achilles tendon at the heel, or the tendons around the kneecap. This is known as 'enthesitis'. Children with this form of arthritis need regular eye tests to check for the painful, red eye condition called 'iritis' (acute anterior uveitis). If they develop a red or painful eye at any time, this needs checking.
Other arthritis
Occasionally children don't fit neatly into the above groups and their condition is defined simply as 'other arthritis'. It may not seem a very useful category, but it is one which doctors sometimes have to use.
How is arthritis in children treated?
Doctors are not sure what causes arthritis in children and diagnosis is sometimes difficult. However, treatment today is usually highly effective and is improving all the time. The best treatment is a combination of medicines and an active, regular programme of exercises. Modern medicines can slow down the disease and reduce long-term damage to a child's joints. Regular exercises keep the child as mobile as possible and protect the joints from damage. Put together these can help a child lead an active, independent life in school and elsewhere.
Most children will need regular hospital appointments to monitor their condition, requiring time out of school. Some children may occasionally stay in hospital for a few days for tests or treatment. Treatment may go on for several years or even throughout a child's school life.
Medication
There are several types of medicine which a child with arthritis may take. A few children may need to take medicine while in school. It is helpful to know a little about the drugs involved. Drugs which may be used are listed below.
- Non-steroidal anti-inflammatory drugs (NSAIDs) help reduce pain and swelling in the joints.
- Disease-modifying anti-rheumatic drugs (DMARDs) slow down and may stop the progress of arthritis. The most commonly used is methotrexate, usually taken weekly, by tablet, liquid or injection. Many parents give methotrexate at weekends, as it can cause sickness which could disrupt schooling. Children taking methotrexate must not be given any 'live' vaccines, such as MMR, oral polio, BCG or chickenpox. Young adults need to be warned that they must not have unprotected sex while on methotrexate as it can cause a damaged baby. They should also avoid alcohol or keep it to an absolute minimum as it may cause liver damage when combined with methotrexate. If young adults are going to drink, doctors put a sensible limit at 5 units of alcohol a week.
- Steroids reduce inflammation caused by arthritis. Steroid tablets are now rarely prescribed as they can have harmful, long-term side-effects. But steroids may be given by drip or as an injection into a painful joint.
- Biologics are a new type of medicine, which block the process of inflammation. They are given as injections or in some cases by drip.
Surgery
These days very few children with arthritis need an operation. A few, with severe arthritis, may need to have some form of surgery. This may be an operation to release muscles or tendons which have become too tight around a joint, or a joint replacement operation. Both types of operation require a stay in hospital.
Exercises
Regular exercises are a vital part of treatment. Every child with arthritis will have a tailored programme of exercises designed by a physiotherapist. Usually the exercises need to be done daily. School support and encouragement for a child's exercise programme is really important. Often exercises can be incorporated into PE or sports sessions at school, or they can be done with a learning support assistant at other mutually convenient times. Physiotherapists may come into school to advise on these exercises and to monitor progress.
For more information about the treatment of arthritis in children, see the arc booklet 'When Your Child Has Arthritis'.
How will arthritis affect a child in school?
There are several ways in which arthritis can affect a child's school life. This varies greatly from child to child and from day to day.
The main effect of arthritis is making a child's joints painful, swollen and/or stiff. It may affect one, a few, or many joints. In addition children with arthritis may get tired easily or find some activities tiring. For most children treatment should keep symptoms under control. But a child may still experience pain and stiffness at certain times or when problems flare up.
Mobility
Often, stiffness can be particularly bad on waking and this sometimes makes a child late for school. Painful, stiff joints may mean a child has difficulty getting around or moves less quickly than other children. Stairs can cause particular problems.
Hand function
If wrists or fingers are affected this can cause problems with how the hand works. A child may have difficulty writing, managing tools or doing physical tasks like going to the toilet alone or doing up buttons. The child may need extra help with these tasks or special aids to help.
Pain
Being in pain for some or much of the day can make a child miserable, irritable and tired, and can reduce concentration, especially towards the end of the day. It is not helpful to push a child or expect too much on a bad day. It is important to be aware of how the child may be feeling. Many children, especially young ones, do not complain of pain and may deny being in pain when asked. Often there are clues that they are experiencing pain. They may seem less happy, tired, withdrawn, reluctant to join in or play with friends, or may change the way they move or behave.
It can be difficult for teachers and other school staff to understand that a child may be running around and playing happily one day, and feeling quite severe pain the next. Teachers may be concerned that a child is simply trying to play on his or her illness to gain attention or get out of working. The best advice is to listen carefully to the child and, if in doubt, talk to the parents. Teaching staff may themselves notice a change in a child, such as limping or different behaviour, in which case parents should be informed.
What can schools do to help?
There is a range of ways in which schools can help a child with arthritis. This varies according to the individual child's needs. A child with mild arthritis may not need extra help in class, but it is still useful for teachers to be informed of the diagnosis. A child with more severe arthritis may need extra support, either temporarily or long-term. In either case the school's Special Educational Needs Coordinator (SENCO) will arrange the necessary help. To do this the SENCO will usually require a medical report from the child's hospital doctor, physiotherapist or occupational therapist detailing the level of support needed. This might be the use of a laptop in class, adaptations to tables and chairs, or classroom help from a learning support assistant.
A few children, with severe problems requiring additional long-term help, may be assessed for a Statement of Special Educational Needs, which will specify the level of extra support to be provided (and funded) by the Local Education Authority (LEA). Anyone – the SENCO, a parent or a medical professional – may initiate a proposal for a statement. The LEA will then decide, on the evidence received, whether a statement is necessary. All statements must be reviewed at least annually. This annual review is particularly important in Year 9 to ensure the correct provision is made as a child moves into further education and adult life.
It is extremely rare for a child with arthritis to need to go to a special school. Almost all children with the condition can manage perfectly well, with help, in mainstream schools. Being included in all school activities, in as normal a way as possible, is essential to promoting and supporting a child's self-esteem.
Naturally, teachers, and the SENCO in particular, will want to discuss a child's individual needs with his or her parents. The child's physiotherapist or occupational therapist can also offer advice and, in some cases, visit the school to discuss the child's needs and assess what help can be given. It is also recommended, and makes good sense, that the child be involved in the discussions. Even young children have a view on what they find difficult and how they might be helped. For example, if a child dislikes a particular change or piece of equipment, s/he is unlikely to adapt to or use it.
Mobility
The most common difficulty for a child with arthritis is getting
around. Painful joints can make movement more difficult or slower.
The child may need transport to and from school, so as to reserve
his or her energies for the classroom. Schools may need to be flexible
about a child arriving late or leaving early. If a school trip involves
walking, transport may need to be arranged. Letting the child get
up and walk around in class can help reduce stiffness. Desks and
chairs may need raising or lowering to provide the best seating
position. If children find sitting on the floor difficult during
assembly or carpet time, they may need to be provided with a chair.
Help or extra time moving between lessons is useful. This is less
of an issue in primary school, where schools are generally smaller
and lessons often in the same room. However, a ground-floor classroom
is helpful. In secondary schools, where lessons are often in different
rooms, a pupil may need extra time for changing lessons. Allowing
a pupil to leave lessons earlier, perhaps using a card s/he shows
to the teacher, is a good idea. This helps them avoid the crush
as well as coping with long walks and stairs. It can be helpful
to let a friend go with them. Again it is helpful if lessons can
be based in ground-floor rooms wherever possible.
Providing a ground-floor locker helps avoid carrying lots of bags around. Allowing a pupil to leave textbooks in a classroom and have two sets of books – for school and home – also reduces the carrying burden. It may be useful to let a pupil work in the library if this is more comfortable. Where there are lifts the pupil should be allowed to use these. Sometimes a grab rail in toilets or a banister on both sides of stairs is recommended. Few children with arthritis today use crutches or wheelchairs, but if these are needed then access needs to be considered.
The child's occupational therapist can advise on adaptations or equipment which may be useful.
Hand function
Painful hand and wrist joints can make fine manipulative tasks difficult. A child may write more slowly than classmates or need breaks to rest the joints. Occasionally, a child may wear a wrist splint or brace to support the wrist while writing. Allowing the child to do oral work, using tapes or allowing them to dictate work, can help. It may be helpful to provide photocopies of any long text which needs to be copied down. Some children find using a computer keyboard or laptop easier for at least some of the time. The child may need extra time to finish work and to complete exams.
As previously mentioned, s/he may also need extra time or help with buttons, going to the toilet and other everyday activities such as opening lunchboxes. The child's occupational therapist can recommend special aids, like easy-grip scissors and cutlery, pencil grips and tap turners. Some children may need a learning support assistant to help with tasks like carrying books, taking notes and using equipment, on either a part-time or a full-time basis.
Breaks
Children with arthritis should join in playtime or breaks, just like their classmates, whenever possible. Exercise is good for arthritis and joining in helps the child avoid feeling different. Sometimes, however, they may find running about or standing around painful. Cold weather can make joint stiffness worse. It may help to allow the child, along with some of his or her friends, to play inside for some or all of break-time.
PE and sports
As exercise is vital for children with arthritis they should be encouraged to take part in PE lessons and other sports activities as much as possible. They should generally be able to join in all sporting activities, apart from rough contact sports like rugby. Swimming and cycling are especially good. However, if the child is finding PE difficult s/he should be allowed to do his or her own exercise programme instead. The child's physiotherapist can advise on PE and exercises. In some cases physiotherapists may come into school to treat a child while the rest of the class has PE.
Extra tuition
Arthritis does not in itself affect a child's capacity for academic achievement. However, missing school through hospital visits or stays may mean a child falls behind. In this case they will need work sent home to help them catch up. If they fall seriously behind they may need extra tuition at home.
Staying in hospital
Some children may occasionally stay in hospital for tests or treatment. They may miss school for a few days or weeks, possibly on a regular basis. Hospital tutors will organise work from the National Curriculum. Ideally this should be done in liaison with the child's own school, to ensure continuity of education. If possible teachers should arrange work for the child to take into hospital. For children who have been very ill and in hospital for long periods of time, a discharge planning meeting or case conference may be held. It is very helpful if a member of staff from school can participate in these meetings.
Classmates
Other children are generally supportive of a child's particular individual needs when they understand the reasons. Discussing arthritis with the whole class is a good idea. A local physiotherapist or occupational therapist may be willing to come and talk. A short video, 'Kids Like Us', which explains childhood arthritis for children, is available from Contact a Family (see 'Where can I find out more?'). Any incidents of teasing or bullying should be tackled, as for any other child, immediately.
Emotional issues
As with any long-term illness, arthritis can cause emotional difficulties, especially as children grow older. A child may be anxious about the future, worried about hospital appointments, or distressed about falling behind. S/he may resent feeling different or enjoy the extra attention illness can bring. The general approach adopted by professionals treating arthritis in children is to encourage a child to be positive and not see themselves as a 'patient' all the time. A child may need reassurance and motivation to catch up or join in. A child's illness can affect the whole family, so schools may need to be aware of the effect on the child's siblings too.
Moving to secondary school
Moving from primary to secondary school needs careful and early planning. Secondary-school children have to cope with more stairs, more pupils, and more moving around between lessons. Parents may need help choosing the right school. The SENCOs at both primary and prospective secondary schools should be able to advise and support parents.
Growing up
As they grow older, children with arthritis may experience additional challenges. They may have growth problems, making them shorter than classmates. For some, puberty can be delayed for a few years. Physical difficulties may limit them joining in with their peers or gaining independence. Bullying or teasing at school is a problem for some youngsters. Some teenagers find that 'disclosure' – telling friends, partners or teachers about their arthritis – is difficult. Support from school staff, in liaison with parents, is vital at this stage.
There is an arc booklet, 'Arthritis in Teenagers', available for 13–20 year-olds.
Career advice
Children with arthritis often do well academically and many go on to university or college. But some seem to have difficulties obtaining a job, possibly because employers have lower expectations or because of prejudice. Helping a child plan a suitable future career early on, and boosting their expectations and self-esteem, may make a huge difference.
What does the law say?
The Education Act 1996 sets out the law concerning special needs. Practical guidance for schools is given in the Special Educational Needs Code of Practice. All state schools and early education settings, like nurseries, must take account of the code when dealing with children with special needs.
An amendment to the Disability Discrimination Act 1995 made it unlawful (from September 2002) for schools to discriminate against pupils with disabilities. This covers admissions, teaching, trips, sports, exams and exclusions. It means pupils with disabilities must have equal access to all aspects of school life. The Disability Rights Commission can advise on this law (see 'Useful addresses').
Why school support is vital
Schools can make an enormous difference to the lives of children with arthritis and their families. With support, understanding and practical help from teachers and other school staff, a child with arthritis can achieve his or her full educational potential and play a valuable role in school life.
Where can I find out more?
For full contact details of the organisations supplying these items see 'Useful addresses'.
FURTHER READING
'When Your Child Has Arthritis'
arc. Booklet for parents.
'Tim has Arthritis'
arc. Booklet about JIA aimed at children aged 4–8.
'Arthritis in Teenagers'
arc. Booklet about JIA aimed at 13–20 year-olds.
'Chat 2 Parents – Arthritis in Teenagers'
Arthritis Care. Booklet for parents of teenagers with JIA.
'Children Have Arthritis Too'
Arthritis Care. Booklet for parents of children with JIA.
'Children with JIA in School'
Great Ormond Street Hospital for Children NHS Trust, Great Ormond
Street, London WC1N 3JH.
Phone: 020 7405 9200.
'Access to Education for Children and Young People
with Medical Needs'
Department for Education and Skills.
'Special Educational Needs Code of Practice'
Department for Education and Skills.
'Disability Discrimination Act – Code of Practice
for Schools'
Disability Rights Commission.
VIDEOS
'Kids Like Us'
A short video about arthritis for children.
Produced by the Lady Hoare Trust.
Available from Contact a Family. Free to schools but donations welcome.
'Physio for Kids'
An exercise video for children with arthritis.
Produced by JOINTZ (Arthritis Care's support group for parents in
Northern Ireland) in liaison with the Paediatric Physiotherapy teams
at Musgrave Park Hospital, Belfast and Great Ormond Street, London.
£ 5.00 incl. p&p from Arthritis Care Northern Ireland
or the Children's Chronic Arthritis Association.
Useful addresses
The Arthritis Research Campaign (arc)
PO Box 177
Chesterfield
Derbyshire S41 7TD
Phone: 0870 850 5000
www.arc.org.uk
As well as funding research, we produce a range of free information booklets and leaflets. Please contact the address above for a list of titles or, on this website, see Publications for People with Arthritis.
Arthritis Care
18 Stephenson Way
London NW1 2HD
Phone: 020 7380 6500
'The Source' (helpline for parents, children and young people):
0808 808 2000
www.arthritiscare.org.uk
Advisory Centre for Education (ACE)
1c Aberdeen Studios
22 Highbury Grove
London N5 2DQ
Advice line: 0808 800 5793
www.ace-ed.org.uk
Children's Chronic Arthritis Association (CCAA)
Ground Floor, Amber Gate
City Walls Road
Worcester WR1 2AH
Phone: 01905 745595
www.ccaa.org.uk
Contact a Family
209–211 City Road
London EC1V 1JN
Phone: 020 7608 8700
Helpline: 0808 808 3555
www.cafamily.org.uk
Disability Rights Commission (DRC)
DRC Helpline
Freepost, MID 02164
Stratford-upon-Avon CV37 9BR
Helpline: 08457 622633
www.drc-gb.org
National Association for Special Educational Needs (NASEN)
NASEN House
4–5 Amber Business Village
Amber Close, Amington
Tamworth B77 4RP
Phone: 01827 311500
www.nasen.org.uk
Teachernet
Government publications and documents relating to special educational needs (SENs) can be downloaded or ordered online at:
www.teachernet.gov.uk/wholeschool/sen
Information on drugs
Separate arc leaflets are available on many of the drugs used for arthritis and related conditions. We would recommend that you read the relevant leaflets for more detailed information about your medication.
