When your child is diagnosed with IBD there may be many emotions spinning around your head with lots of practical implications to suddenly consider. For many parents and carers it can be difficult knowing how to start navigating your way through. Your priorities will likely depend upon the status of your child’s condition at that time - when your child is very poorly, your focus will be on getting them well/stable with the support of your medical team. However, when you start to think about your child getting back into and coping with day to day activities there may be lots of things to consider.
School has a huge responsibility/role to play in our children’s lives, given the statutory expectation that children should be in attendance 30 plus hours a week, 39 weeks per year. If children are not able to attend due to illness, school should be communicating with and supporting the family where they can. Where children are attending but have additional support needs/considerations, school should be proactive, flexible and supportive of that individual child’s needs.
Children’s experiences stay with them and contribute shaping who they are as they transition through to adulthood. Challenging and difficult experiences are not necessarily negative, they help children develop resilience, coping strategies and manage change. However, CICRA and the families we help want to ensure that the support networks around our children are robust and supportive so that they are enabled to do what they can and not held back. Second to family, school are potentially the biggest support network a child will have, so it is important that they make every effort to work alongside families to ‘get it right’.
Having spoken to many families, we appreciate that there is a sense of apprehension ahead of the new school year approaching, based on experience of feeling unsupported and school not listening and/or worry that staff changes for your child mean that you have to start from scratch and explain everything again in the hope that they will understand. We have a great deal of information on our website to support you when talking with school and/or for school to access themselves. Do take the time to look at it so that you feel clear about what should be in place to support your child at school. There is also some great work going on to raise awareness and promote better support for children/young people who have less visible illnesses.
It is vital that schools work alongside parents to ensure that children with IBD have a good experience of school both socially and academically, are supported to achieve the best they can and receive positive messages/advice from teaching staff about prospects and pathways. CICRA are here to support you and Laura, our Family Support Worker, is more than happy to liaise with schools if you feel that you are just not being heard. Don’t struggle or feel that you just need to accept things, talk to us, we really can help.
Parents and carers give their top 5 tips for managing difficulties with school
- wherever possible, go in and speak to your child’s teachers – they may not really understand just how much IBD impacts a young person
- take CICRA leaflets and information to help explain the condition
- prepare well in advance of exams and check what your school’s policies are
- agree an Individual Healthcare Plan with the school so both they and you have agreed how they will support your child
- order a free CICRA Can't Wait card so the school knows your child needs quick and easy access to toilets
government guidance
Illness and your child's education
Education for children with health needs who cannot attend school
individual healthcare plans
Guidance on Individual Healthcare Plans (PDF)
Template for Individual Healthcare Plan (PDF)
useful links
CICRA info on schools and colleges
headteacher on how school policies can support pupils with IBD
advice about schools from an IBD specialist nurse
a mother writes about how she changed her child’s school’s attendance awards policy
how our family support worker can help
how we can support young people
other organisations
RAIISE is a charity aiming to improve the support provided to young people with invisible illnesses in school, college and university, through delivering resources to education professionals
Young Minds provides some useful advice and information on where you can get help if you think your child might be anxious about school
Child Law Advice Centre (from Coram Children's Legal Centre) provides free specialist advice and information to parents, carers and young people on education law in England
IPSEA offers free ‘legally based’ advice regarding education in England and Wales to families who have children with special educational needs
Place2Be provides emotional and therapeutic services in primary and secondary schools, aiming to build children's resilience