by CICRA family support worker, Laura Palmer
When a child/young person is diagnosed with inflammatory bowel disease (IBD) it is a huge thing for families to come to terms with. IBD is not to be confused with Irritable Bowel Syndrome (IBS) which despite some similar symptoms, is distinctly different. IBD is the umbrella term used to describe Crohn’s, Ulcerative colitis and IBD unclassified all of which are long term, chronic conditions.
For many parents/carers it can be difficult knowing how to start navigating their way both emotionally and practically, priorities will likely depend upon the status of their child’s condition at that time; When a child is having a ‘flare’ or treatments to get them into remission are not working, they are likely to be very poorly, with regular hospital appointments and in some cases inpatient admissions for weeks or months at a time. Understandably the family will be focussed on getting their child well/stable with the support of their medical team. When the young person and their parents start to think about getting back into and coping with day to day activities there will be a lot to consider, coupled with a degree of angst and uncertainty. One of the biggest challenges is the unpredictability of IBD which can flare at any time. Whilst stress is not a reason for IBD, stress can make it more active.
As you know, alongside the home environment, school has a significant role to play in the development of our children, as they transition through to adulthood. Given the statutory expectations around attendance and the amount of time young people (who do not have health barriers to attendance) spend at school, it is important that we try our best to support families effectively as these experiences will stay with them forever. Second to family, school are potentially the biggest support network a child will have, so it is important that we make every effort to work alongside families to ‘get it right’.
Having spoken to many families, we at CICRA know that there are some great examples of easy but impactful ways to effectively support young people with IBD at school, essentially everybody wants what is best for the young person. However, there are significant issues consistently being raised in relation to families feeling unsupported, not listened to (or the severity of IBD not taken on board) and relatively easy mechanisms of support not being implemented (i.e. a toilet pass).
CICRA have produced a range of information/literature that is intended to benefit families as well as schools. We encourage families to talk to school about their child’s IBD diagnosis and how it affects them because no two people with IBD have the same experience. We promote to families that opening these lines of communication, enables school to work alongside them effectively to ensure their child has a good experience.
Please do take time to read the information we have available, much of which is applicable to supporting any young person with a long term, chronic illness. If you would like to get in touch with CICRA for any further information or advice, please don’t hesitate to make contact. We want to enable and support you to feel equipped when supporting students who have IBD so we would love to hear from you.
useful links to help you support pupils with IBD
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
Medical Conditions at School is an alliance of charities supporting schools and pupils with medical conditions
Well at School provides information and advice to schools on supporting children with medical or mental health conditions
Contact our family support worker Laura
Laura can help your pupils with IBD and their families, and is available to talk with schools and help you support your students in the best way.
You can contact Laura by telephone on 020 8949 6209 and by email firstname.lastname@example.org
Laura is usually available Tuesday to Friday, 10am-3pm and Monday and Thursday evenings, 7-9pmRead more about how Laura can help