The Issue - A hidden affliction inflamed by ignorance
Teaching is a profession that loves acronyms but one in particular, IBD (inflammatory bowel disease), is strangely absent from most schools. As someone with the illness, and a teacher, I am more aware than most of how big a problem this absence is. IBD affected my own education. Because of my condition, I missed two years of school, achieving only three GCE qualifications. IBD also drastically affected my confidence and ability to make friends.
You may think IBD is rare but it affects at least 300,000 people in the UK, with another 10,000 young people expected to be diagnosed by 2014, according to the charity Crohn's and Colitis UK (Crohn's disease and ulcerative colitis are the two main forms of IBD). It is likely that you will have a child with IBD in your class every few years.
Crohn's and Colitis UK recently conducted a survey of young IBD sufferers and discovered that more than two-thirds of them believed their disease had prevented them from reaching their educational potential. This is unsurprising. Little is known in schools about the condition and how to support student sufferers.
In my 20 years in education, I have worked with and had experience of both teachers and special educational needs coordinators (Sencos) who had only a rudimentary understanding of IBD or none at all. I have even seen a deputy headteacher responsible for special needs refuse to discuss the problems that two children were facing as a result of IBD; in her eyes, they were using their illness to get out of doing work.
Schools need to do better; first, by researching the disease. IBD is a chronic problem in which the intestines become swollen, inflamed and ulcerated. Symptoms include acute abdominal pain, weight loss, a constant urge to have bowel movements, diarrhoea and severe fatigue. These symptoms can vary in severity from person to person, and can come on suddenly and unpredictably, causing stress, anxiety and embarrassment.
Schools need to put strategies in place to assist young people with IBD. Teachers should place these students near the exit, possibly giving them a card so that they can indicate subtly when they need to go to the toilet during lessons. If you have a no-toilet-break policy, bending it for these students is essential, but scrapping it would be preferable so as not to highlight that such children are out of the ordinary.
Be aware that IBD has psychological as well as physical effects. According to a survey carried out by Crohn's and Colitis UK, 79 per cent of young people with IBD said the disease had affected their confidence and self-esteem, leading to them feeling isolated. Teachers must try to manage students' anxieties, particularly over class presentations. Talking to these students about possible bullying is also important.
Teachers should be proactive in other respects, too. It can often be the case that the form tutor ends up being the key contact for the IBD sufferer and their family. It is incredibly important that the information gleaned is passed on and the teacher becomes a liaison between the student and the rest of the school. For example, in the case of students who have had operations and have been fitted with stoma bags, the form tutor should pre-brief other teachers on the disease and its implications, especially ahead of physical education lessons.
Children who have IBD also need to be supported academically. IBD can flare up to such an extent that sufferers can be off school for weeks at a time. Setting long-term homework and offering intensive coaching to children on their return is vital so they are not left behind. Form teachers or Sencos should prepare weekly work packs and projects for parents, who should be in close contact with teachers.
IBD is a manageable but misunderstood condition, in the young in particular. Teachers have to educate themselves about it. The change we need is achievable and would allow thousands to reach their potential and develop fulfilling lives. IBD should not be a stigma or a handicap to success.
Julia Metcalfe is a full-time private tutor who previously taught at Langley Grammar School in Berkshire, south-east England. Crohn's and Colitis UK provides a support network and information resource for people and families affected by ulcerative colitis and Crohn's disease. Free information packs and sheets are available at www.crohnsandcolitis.org.uk.
Schools tend not to have sufficient understanding of inflammatory bowel disease.
Institutions need to be more aware of the impact that IBD can have on students, not just physically but emotionally, too.
Toilet breaks, someone to liaise between the student and staff members, and pastoral support are required.
If there is a support system in place, having IBD should not hinder a student's education.
This recent report from Crohn's and Colitis UK gives a comprehensive rundown of inflammatory bowel disease and its effects on children.