Supporting children with JIA in schools
Published: 16 Aug 2017
Anne Gilbert, Youth and Family Services Manager for JIA-at-NRAS, discusses how schools can address effectively the needs of pupils with JIA and support their families.
JIA is a relatively unknown condition, even though there are currently more than 12,000 children in the UK who suffer from the disease. It is one of the most common causes of physical disability during childhood; approximately 1500 children under the age of 16 are newly diagnosed every year. Many schools need to offer more support for both children with JIA and their parents/carers.
In the classroom
JIA may not be noticeable, but a flare up of the condition can come on suddenly so it is important that any staff member who works, or is in contact, with the child is made aware of their condition.
If a child has JIA their affected joints can become extremely stiff, so regular movement will help, so allowing a child to move around is essential. For a young child sitting for long periods of time, especially on the floor, can cause them a huge amount of pain. Where children do sit on the floor, a simple solution most schools take is to let them sit on a chair. However, this then draws attention to the child and can cause them to become self-conscious and not all children will want their peers to know about this invisible condition.
Schools and nursery settings could really support younger children with JIA by finding ways of solving this problem without drawing unwanted attention to the child by thinking of alternative inclusive options. For example, if a school chooses to let the child sit on a cushion, allow others in the class to to share in this. Brain storming with other staff and parents could result in the perfect solution!
Playtime and PE
Many children with JIA worry about everyday playground activities that others don’t. For example, getting tripped up or jostled in the playground can cause them a lot of pain. They may therefore ask to sit inside, which can be isolating. If schools could introduce activities during playtime and PE that can reduce this risk but allow the child to be included, this would make a huge difference to their engagement. It is important not to single out children with JIA and come up with games that are inclusive.
PE is important and a child with JIA, unless they are having a flare or feeling unwell, should always be allowed to join in. The child and parents should always be consulted on the activity and for how long they can take part. Missing physical education is not advocated.
It is extremely difficult for schools to make sure they have a timetable that meets everybody’s needs. If possible though, where a child has difficulty using stairs or walking long distances between classrooms, a timetable taking this into account would help enormously. In exceptional circumstances the school may need to consider a part-time timetable, allowing the child with JIA who is unwell to still engage with school.
Unlike other conditions such as asthma, diabetes or epilepsy, there is no specific training that staff may need with regards to administering medicine. The school needs to make sure their staff have a general understanding of what JIA is and how a flare can be triggered.
Schools and nurseries do not need any specialist equipment. However for inflammation and sore joints, a lot of children get relief from an ice pack or heat pad and anti-inflammatory medication like ibuprofen. All schools should have a medical conditions policy which states how the school will care for any children with medical conditions, the procedures for getting the right care and training in place and who is responsible for making sure the policy is carried out.
Any child with a long-term condition or additional need can apply, with support from their school, for an Educational Healthcare Plan (EHC). These replaced “statements of special education needs” in the last couple of years. The process in many cases can take some time, however these plans offer a long-term view and, if granted, provision and support continues whilst the child or young person is at school. An EHC plan could mean that a young person gets additional support during exam times, when they might need more time, or help with scribing. If the child or young person has an occupational therapist (OC) who supports them with their JIA, we would recommend that the school use the OC to help with the EHC and also support the understanding of JIA throughout the school.
The importance of school support
Flare-ups are a common side effect for children with JIA. These can come up overnight and can make the child or young person feel unwell for weeks, so there may be occasions when a child will be off school for multiple weeks. Parents/carers and school/nursery need to have open and regular communication. Where attendance is an issue caused by the child’s JIA, the school can be especially supportive by being mindful of their communication in regards to attendance. Standard letters asking for explanation when the parent has been in touch cause a lot of additional stress.
There is no known cause for JIA but stress can influence the condition so school, friendships, mental health and confidence are all key issues for children and young people with JIA.
JIA-at-NRAS has put together a Managing JIA in School booklet to help schools better support any students with JIA – more than 6,000 copies have already been sent out to schools, health care professionals and individuals.
Safe in Schools Initiative
JIA-at-NRAS is part of the Health Conditions in Schools Alliance, which has worked with the Department for Education to remind schools that they should have a medical conditions policy. The Alliance’s research has found that only 11.5% of schools demonstrate that they follow this law that was introduced three years ago to protect children with medical conditions. Of the few schools that did provide a policy, two thirds were inadequate and missed key details such as staff training, how to safely include the child in all activities, and crucially, what to do in an emergency. Diabetes UK is championing the safe in schools initiative. To read more about the Health Conditions in Schools Alliance, click here.