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Sickle cell ignorance slammed

SURVEY: Teachers and school principals throughout the UK were awarded two out of 10 for Sickle Cell awareness following the results of a damning survey

TEACHERS AND school principals throughout the UK were awarded two out of 10 for sickle cell awareness following the results of a damning survey.

The report, Young People With Sickle Cell At School, involved 569 pupils who have the condition completing a questionnaire, and over 40 of them sharing their experiences of school in a series of recorded interviews.

Incidences included parents of children, who had missed days at school because of the condition, being accused of complicity in truanting, sufferers being denied necessary toilet breaks and access to drinking water during class, and being made to do unsuitable physical exercise resulting in the onset of a crisis.

Pupils also reported that fatigue caused by the anaemic effects of the condition were dismissed by their teachers as laziness, and that their school failed to provide them with help in catching up on classes missed.

Asked how he would rate UK teachers’ and school principals’ sickle cell awareness on a scale of one to 10, Professor of Applied Sociology, Simon Dyson, who led the group who conducted the 2011 report told The Voice, “In the UK I’d say it’s probably a two out of 10”.

Dyson told delegates at the launch of the newly formed Sickle Cell Society of Ireland last week: “I have seen letters from schools written to parents blaming the parents for the (perceived) truancy of the child, while that child’s absence is actually because the child has sickle cell”.

He explained that the total days of absence recorded were made up of brief spells of a few days at a time rather than the total number in one time frame, but that some education authorities had failed to grasp that point.

“What seems to be happening is that while the children were cumulatively off school for quite a bit, which should have triggered our support systems - because the absences were being interpreted in a very narrow way as 15 days in a row - it did not.” he said.

REPORT: Professor of Applied Sociology, Simon Dyson, led the group who conducted the 2011 report

He continued, “We asked young people (with sickle cell) when they’re off school how much they feel they were helped to catch up, only six percent said they were helped to catch up 100 percent of the way. Most of them said they were helped around half way, while one in five felt they weren’t given any help in catching up when they missed school”.

Experiences in the classroom have often been unhappy for pupils suffering from the disease, in some cases even traumatic.

Professor Dyson went on to reveal: “Young sufferers can’t concentrate urine readily, they need to pass large quantities of dilute urine, but 57 percent of the pupils we surveyed said they had been prevented from going to the toilet when they felt they needed to at school.

“At pediatric clinics children with the condition will be encouraged to drink lots of water in order to remain well hydrated, yet nearly half of our young children at school said they’d been prevented from drinking water when they wanted to in class.

Dyson said that while he didn’t want to “assume the role of a teacher basher,” he said that something needed to be done.

“By and large, teachers in the UK are caring, committed people. Yet there’s something about routines that is getting in the way here.

“This can have, psychologically, emotionally upsetting consequences. For example, the mother of a six year old boy who has SCD who says ‘Twice when my daughter went to collect my six-year-old son, who has sickle cell from school, he was all wet in his pants.”

He went on: “Of course, apart from the psychological trauma of that, the likelihood of the child willingly drinking water in class in order to stay hydrated when this is the consequence is going to be greatly diminished.

Asked what role he felt central government should be taking in rectifying these issues, he responded: “I think that Central Government has a role in insuring that teacher training encourages an awareness of medical conditions that may impinge on learning, such as SCD.

“In the UK, SCD is no longer rare - one in around 1800 newborn children have SCD, and one in every 60 newborn children is a genetic carriers of SCD or the associated condition Thalassaemia. It’s one of the leading genetic conditions in England as such, you could say it’s part of the general cultural competence of not only teachers and health professionals, but any welfare worker to be aware and knowledgeable at least in a basic sense about what is after all the world’s leading genetic disorder,” he said.

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