Why a School Policy for Sickle Cell is Needed

What is it about?

The research based on questionnaires with 569 young people with sickle cell disease and 40 in-depth interviews found young people reporitng they were poolrly dsupported in school. Teachers or peers’ knowing that the student has SCD makes no significant difference to reported negative experiences at school. Most favour disclosure to teachers, because they hope teachers will know what actions to take if they become ill and will make allowances for school absences. Some disagreed, citing instances of attracting unwarranted attention or of experiencing disabling attitudes. Attitudes to disclosing to peers were ambivalent between acknowledging the reality of their sickle cell, and not wanting it to be a central part of their identity. A change in wider school environments is required so that young people with SCD are supported irrespective of whether they foreground or play down their disabled identity.

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Why is it important?

It is often assumed that a solution to situations where young people with a chronic illness such as sickle cell disease (SCD) are distressed in school is to raise teacher awareness and to persuade young people to speak publicly about and share their illness experience. Our research suggests two problems with this: [1] Around a third of young people with SCD are adamant that they do not wish to draw attention to themselves as allegedly different from their peers, and arguably this view needs to be respected and [2] Teachers have myriad other pressures on them (young people with other medical conditions; young people with diverse learning needs; pressures to meet targets and improve league table positions; pressures from parents, the media and politicians, all of whom may tend to blame society's ills on what teachers are or are not doing). It is asking far too much to expect teachers to know eevrything about one of the most complex and varied medical conditions in the world. Our research suggests that one way to address this is to look to change the social environment, perhaps through a strong enabling school policy on sickle cell. In this way changes to the social environment can help both those young people happy to speak out about their SCD and those who are not, and it can help by having system-wide changes in the background that do not depend entirely on the knowledge of individual teachers.

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