our schools work

World IBD Day on 19 May coincides with the time of the year when pupils and teachers are focussed on exams and end of year tests. This can be especially stressful for children and young people living with inflammatory bowel diseases (IBD) like Crohn's and Ulcerative colitis.

In the last twelve months, we've produced several guides for teachers and schools to help them support young people during this time and throughout the academic year. We'll be promoting this information during May and raising awareness of the issues young people with IBD face during their education.

Our guides have been well received, but we know that there is a strong need for more help to support those living with IBD during their school and college years. We're really keen to hear more from you - whether you're a young person at school or a parent who wants school authorities, the Government and others to understand the issues you face. Maybe you have a positive experience to share about how you or your child has been helped by a school or college.

common concerns for children with IBD at school

School can be a tricky environment for any child or young person, but there are several areas that seem to cause concern for the children and families we are here to support:

• absence and attendance procedure and policy: IBD fluctuates and sometimes a pupil is unable to attend through illness or through medical appointments. None of this is their choice and yet far too often, we hear from parents upset at the way their child has been treated
• toilet access: there have been many campaigns to improve understanding of invisible illnesses and disabilities, but school environments can seem out of kilter even with positive changes in wider society. Children with IBD sometimes rather stay home and miss education than risk an accident at school
• bullying at school can cause psychological issues that can ripple into adulthood. A lack of understanding by staff and pupils was a big worry when we surveyed our children and families two years ago
• fatigue is a common symptom of IBD and at a time in life when being active and alert can be so crucial, it can weigh children down and reduce their potential, exacerbated by misconceptions about what it is and how it affects young people with IBD
• exams and tests can worry young people with IBD. Parents are not always given accurate advice by schools, who may be unaware of the ways they can legitimately help their pupils with IBD

what is CICRA doing to help at school?

We are directly supporting children, young people and their parents to ensure that school and college is a positive environment. We are drawing on many great examples to ensure that all children with IBD can achieve their potential. We are doing this by:

• learning from parents of children with IBD who are teachers themselves – they see it from both directions and they suggest ways that other teachers and school management can ensure pupils with IBD are treated fairly
• supporting children with our Can’t Wait cards (part of our free membership) and information leaflets for primary and secondary schools. Popular amongst our families and useful for schools, these help children get access to toilets and their teachers to understand more about IBD
• informing young people and families about psychological issues and developing tools they can use when struggling, through our Global’s Make Some Noise project which will also provide direct one to one and group family support
• representing the views of children with IBD and their families to government such as in the current updating of NICE guidance on physical and emotional wellbeing in primary and secondary education
• publicising inspirational stories from parents who have been there and found a way to improve the system, such as this piece on how a mum lobbied her daughter’s school to change its policy and recognize that absence due to a medical condition should not count against their pupils

hints and tips for parents and carers to help children with IBD at school

Although it is important that schools understand their responsibility to pupils affected by IBD, if you or your child are affected, these are some suggestions to help get the most from a school or college:

• as their parent or carer, go into school and personally speak with their teachers or the headteacher or the school nurse – explain exactly how the condition affects your child and the issues it can bring that they need to be aware of. Take our leaflets and pocket sized guides to give to the school. See also this helpful article by an IBD specialist nurse
• take comfort from the many examples of young people who have dealt with the difficulties of IBD and developed fulfilling lives
• consider helping to start a local support group for young people to get together and feel less isolated with their condition, contact us for help
• if your child is unable to attend school, ask for teachers to keep in touch and send work home for your child to do when they are feeling able to
• don’t be afraid to draw on examples from elsewhere, whether this mum’s story of changing her school’s policy or this headteacher explaining how school policies can take account of the needs of pupils with IBD
• use our guide to exams to support your request for access arrangements before exams or special consideration after exams