If I had my arm in a plaster people would understand
We are launching new guides for schools to combat knowledge gaps about the issues faced by children and teenagers with Crohn's disease and Ulcerative colitis. As many as 8000 pupils could be at risk of being stigmatised because of a lack of awareness amongst teachers. Our guides help to prevent this by explaining in straightforward language how IBD affects pupils and what schools can do to help.
- Number of young people diagnosed with inflammatory bowel disease (IBD) in the UK has doubled over the past 20 years
- Average age of diagnosis is now around 13 as more young children than ever are being diagnosed before the age of 10
- Schools need to tailor specific support to the needs of young IBD sufferers
As the UK's national charity providing support for children and teenagers affected by inflammatory bowel disease (IBD) – along with their families – we are calling on schools to do more to understand the debilitating condition and tailor specific support to the issues faced by young sufferers.
We estimate at least 8000 children and teenagers in full-time education in the UK have a diagnosis of Crohn's disease or Ulcerative colitis. With the number of young sufferers growing at a faster rate than ever – twice as many under 18s are being diagnosed now than 20 years ago – it won't be long before every primary or secondary school will have at least one pupil affected by IBD within their classrooms. This could already be the case as it can take a long time for some to be diagnosed.
To tackle this significant lack of understanding about IBD among teachers, we are this week launching a range of new school guides to boost awareness and understanding of these painful and exhausting illnesses, including offering a handy fold-out mini pocket guide for quick reference in the classroom.
IBD is a malfunction of the immune system when the digestive system thinks it is fighting infection but is in fact attacking itself. This can lead to swelling, rupturing and ulceration in the bowel causing pain, fatigue, bloody stools and chronic diarrhoea. It can also lead to major surgery at a young age, slowed height growth, delayed puberty and cause psychological stress requiring talking therapies.
Being diagnosed with Crohn's or colitis at such a formative age can prove a huge struggle for children and teenagers. But while schools and colleges are well versed in many more common medical conditions such as asthma and diabetes, we find there is still a significant lack of understanding in many schools about these two diseases despite the fact there has been such a dramatic increase.
Young people often feel embarrassed to talk about the toilet-related symptoms of IBD. This means important conversations with teachers and classmates about their day-to-day struggles with schoolwork and school life can get overlooked.
With children and teenagers dealing with so many stresses during their education, IBD should not be another one. Our new comprehensive guides for teachers at both primary and secondary level and all who work within education aim to improve awareness of the symptoms of Crohn's disease and Ulcerative colitis and offer the tools and knowledge to help alleviate the social angst, emotional trauma and daily physical problems young sufferers deal with at school when it comes to IBD.
Veena Mohamed's daughter Kelsy has just started secondary school and has had Ulcerative colitis since she was six.
It's never easy for Kelsy to adjust as it took until Year 6 to feel totally settled to deal with her illness at primary school, but we've been impressed with how her new secondary school have helped so far. IBD is so unpredictable so I feel it's important schools and teachers are willing to be led by how the child is feeling. Even when Kelsy is unwell, she is keen to go to school but knows better than anyone what she can and can't do. Having someone specific within the school environment to talk to who understands that, and listens to her in confidence, is so important.
Young people with IBD are at risk of underachieving in education due to the stress of diagnosis - the average for young people is now around 13 years of age - and also from the painful and embarrassing symptoms the diseases can cause; this can be everything from recurrent or lengthy days out of the classroom and reduced participation in sports and trips to symptoms exacerbated around stress-filled times such as exams or the need of some children with Crohn’s disease to have special liquid feeds instead of food during the daytime.
In England, Section 100 of the Children and Families Act 2014 places a statutory duty on governing bodies of maintained schools, academies and pupil referral units to make arrangements to support pupils with medical conditions with their mental and physical health in school. This is so the pupil can play a full and active role in school life, remain healthy and achieve their academic potential.
Our new booklets are a simple way for all teachers to understand how they can support pupils with IBD so they don't miss out on their education or achieving their academic potential. Schools, parents or young people can download the booklets from our website, read our information online or order hard copies from us for free by emailing support@cicra.org.