by Mary Brennan RGN/RSCN/BSc Clinical Nurse Specialist in Paediatric Gastroenterology.
You or your child can decide who to tell that your child has inflammatory bowel disease (IBD) (Crohn’s disease, ulcerative colitis or IBD unclassified). However, to ensure your child receives the right support in school and to ensure they achieve their academic potential despite their long term condition, I encourage them to tell a minimum of two people: the SENCO and their head of year. These two can put a healthcare plan in place to support your child’s medical and educational needs.
IBD can be embarrassing to talk about, hence your child may not want everyone to know – at least in the beginning when they are first diagnosed.
I tell the young people in my care to take their time telling everyone, especially while they are trying to get their heads around the fact they have IBD themselves.
As friendship groups change during adolescence I advise they only tell their closest friend or friends. I also advise to start with a simple explanation – ie, I have a problem with my belly/tummy which the hospital is helping to make better.
For the teachers, it is important they know that IBD is a relapsing/remitting condition for which currently there is no cure. The majority of teachers are very supportive once they understand the condition but think of the size of your child’s school and there may be only one to four children with IBD. Therefore, you will need to revisit the condition and its treatment as it changes. It may be worth thinking about having a noticeboard raising awareness of IBD or using a school event to highlight the condition (and if your child is happy to, profiling their personal experience).
If you don’t know already who your child’s IBD nurse is, find out and ask them to support you and your child in ensuring the right support is in place for your child.
If your child is unfortunate and does not have an IBD nurse, ask their consultant or GP to write a letter of support outlining your child’s needs. CICRA can provide you with some example letters that can be adapted, but please ask the healthcare professional to make the letter as individual to your child as possible – ie, if they need additional time to eat or calorie-laden snacks rather than the healthy options as they are struggling to gain weight.
If your child is out of school for three weeks (cumulatively), begin to discuss home tuition with a view to your child being re-integrated on a phased return as soon as possible – do not forget their socialisation is important.
top tips
- keep the school updated; following diagnosis make an appointment with the head of year or SENCO. If you have not got a letter to support your child’s medical and educational needs, bring the endoscopy report or a clinic letter to show the diagnosis
- bring the teacher support information from CICRA to the appointment
- bring this article!
- ensure the healthcare plan / your child’s medical needs are reviewed every year and discussed at each parents’ evening and updated if your child has a significant flare. If your child has a long period of remission, people will forget they have IBD – after all no one can see it!
- discuss additional support for exams early even if your child is in remission. Many schools want letters of support in February; having a support plan in place that is never used is much less stressful than trying to get support at an already stressful time.