The lack of awareness in schools is having a serious impact on the education of children with Sickle Cell, according to research published in the British Education Research Journal this month.

Sickle Cell is a blood disorder that is named after the distinctive shape formed by the red blood cells of people with the condition. It affects one in every 2,000 children born in England.

Professor Simon Dyson, Director of the Unit for the Social Study of Thalassaemia and Sickle Cell at De Montfort University (DMU), led a team of researchers from DMU, Loughborough University and the University of York to establish the experiences at school of young people who suffer from the disorder.

The project, which was funded by the Economic and Social Research Council, showed that the general advice available to schools to support children with medical conditions misses out many of the issues relevant to young people with Sickle Cell.

Professor Dyson said: "The children we spoke to perceive both their physical and social environment as triggers to episodes of their illness.

"From the 569 young people we surveyed many are not fully believed by teachers and only a minority are allowed painkillers.

"Whatever systems may or may not be in place to support children with Sickle Cell, these measures are perceived to be failing.

"Children with Sickle Cell need to drink plenty of water to remain hydrated and need to use the toilet more often, but half the children reported not being allowed to do either. One girl was even told by a teacher to "wet herself" and her mother had to write to the school threatening to send them the dry cleaning bill if they continued to disallow toilet breaks.

"A third of children also reported being forced to undertake PE activities outside during winter despite this being a factor that could trigger their illness. The anaemia associated with Sickle Cell causes tiredness, resulting in a lack of concentration but many were accused of being lazy; one teenage girl told us that although she is frequently tired in class when she did produce good work she was accused of cheating.

"Children with Sickle Cell may also miss days at school and many are not helped to catch up on work when they return. The best practice was The City of Leicester College where all children who missed lessons had formal sessions with a teacher to ensure they caught up. This not only helped the young boy with Sickle Cell with his work but also did not make him feel different from his friends. This is the kind of help and support children with Sickle Cell need and we hope that by producing this research schools will begin to take notice."

Dr Asa'ah Nkohkwo, Director of the Sickle Cell Society, said: "We would like to thank the researchers for helping to highlight this important issue. There are 15,000 people in this country with Sickle Cell and the nature of their condition makes a good education even more vital for their future employment prospects."

Sonia Lindsay from the Organisation for Sickle Cell Anaemia Research, said: "These findings confirm everything that our clients have been telling us for years. The government claim that "Every Child Matters" but sometimes it seems that every child matters except if they're a child with Sickle Cell."

De Montfort University