Paediatrics and the IBD Standards

Nick joined CICRA as CEO in June 2017, after working in the voluntary sector for over a decade. Nick is leading CICRA’s work to support more children with Crohn’s and colitis and their families. Nick was diagnosed with Crohn’s disease in 2005 and Ankylosing Spondylitis in 2006.

Forty years ago, it was rare for children to be affected by inflammatory bowel diseases like Crohn’s disease and ulcerative colitis. Since then, the numbers have risen substantially, doubling in the past 20 years alone. 25% of new diagnoses are in children and young people under 16. During this period of dramatic rises, the urgent need for specialist doctors and more healthcare resources led to the growth of the charity CICRA, to help the increasing number of children being affected by IBD, and their families.

The average age at diagnosis for children is now around 13 and more young children than ever are being diagnosed before the age of 10, including babies and toddlers. At the same time, pressure within adult IBD health services has also increased. It is estimated at least 8000 children and young people in the UK have Crohn’s, colitis and other forms of inflammatory bowel disease (IBD). Many newly diagnosed patients over 16 may get referred into adult services, even though their condition can affect their adolescence.

IBD can be very scary for children and teenagers, and for their families and siblings. A young person may feel alone and find the psychological stress of the condition difficult to deal with.

Urgent diarrhoea can be an embarrassing symptom, but the impact of the disease is wider and can affect concentration, energy levels and puberty. Children with IBD can be small for their age, and medication such as steroids can have distressing side effects on appearance such as weight gain, puffy face and acne, which can make them a target for bullies. Combined with the strain of living with their condition, this can make them become withdrawn, anxious and depressed. All the issues associated with IBD are particularly difficult for children and teenagers as they are growing and developing physically, emotionally, mentally and socially.

Being diagnosed with IBD at such a formative age can prove a huge struggle for children and teenagers. This often invisible disease impacts young lives with ripples that last long into adulthood, whether by affecting growth, education, friendships or family. The main goal in treating children with IBD is to let them grow up, go to school, and live a normal life. This relies on well-resourced health services with multi-disciplinary teams to care for them, including psychological support, dietary advice, specialist pharmacists and specialist nurses.

Although many paediatric centres give great care for children with Crohn’s and colitis, the IBD Standards are an important way to ensure young patients can receive the same high-quality experience wherever they are.

The Standards provide a tangible, recognised and respected means of identifying what makes good IBD care for all patients. At CICRA, we are proud to have played our part in their development, working with all the professional societies and colleagues in patient-led charities. Our role in IBD UK is crucial to achieving our ultimate vision of a childhood unlimited by inflammatory bowel disease.