Reported school experiences of young people living with sickle cell disorder in England

A survey of 569 young people with sickle cell disorder (SCD) in England has found such pupils miss considerable periods of time from school, typically in short periods of two or three days. One in eight has school absences equating to government-defined ‘persistent absence’. Students with SCD report that they are not helped to catch up after these school absences. Half the children reported not being allowed to use the toilet when needed and not being allowed water in class; a third reported being made to take unsuitable exercise and being called lazy when tired. Children perceived both physical environment (temperature, school furniture) and social environment (being upset by teachers or other pupils) as triggers to episodes of their illness. Policy initiatives on school absences; preventive measures to ensure maintenance of good health; and measures to prevent perceived social attitudes precipitating ill health would also support children with other chronic illnesses at school.