What is it about?
Young people with SCD miss considerable time from school, on average 16 days a year, a level that exceeds the 15 days beyond which schools and local authorities have a statutory duty to make alternative arrangements. However the episodic nature of the school absences, typically in short periods of 2-3 days, meant that a narrow interpretation of the guidance (15 days “in a row”) was being used. This leads to young people with SCD being unsupported. The majority of students with SCD reported that they are not helped to catch up their missed schooling. 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 labelled lazy when tired from the severe anaemia associated with their SCD. Schools were therefore failing to take simple precautions that would enable young people with SCD to remain well at school.
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Why is it important?
Sickle cell disease/disorder (SCD) is the most common monogenetic condition in England and the world. Whilst attention has been paid to basic scientific research and clinical medical treatments, the social aspects of sickle cell have been much neglected. Although schools may typically struggle to accommodate young people with many different medical conditions, the challenges for a young person living with SCD at school are even greater. First, SCD is highly variable both between different individuals and over time. Secondly, the range of possible symptoms (strokes, silent strokes, dactylitis, retinopathy, acute chest syndrome, necrosis of the shoulders/hips, infections, jaundice, priapism, recurrent leg ulcers, as well as both chronic and acute pain) is so varied and extensive that a convincing presentation of symptom to teachers becomes problematic. Thirdly, there are a large number of environmental and social precautions that could be put in place to minimize triggers to illness and distress at school. Finally the greater proportion of pupils with SCD in England who are of Black Caribbean/Black African descent, means that the SCD experience is also filtered through wider societal racism, an issue we take up in other publications.
Perspectives
The value of the impact is best summarised by the words of one mother who, without the warrant of our research, was struggling to engage with her child’s school: “I had a meeting at my daughter's school regarding my child's educational welfare as I had already had issues with it. There had initially been a "confrontation" about this matter for which I had refused to bow owing to the fact that my child "matters" to me. I got the feeling that the school had already formed an idea about what sort of parent I was. This is because they played into everything that I said and as I pulled out copies of your article to give them, they themselves recognised it and let it out that they had spent the past few days researching on sickle cell (knowing that this meeting was forthcoming) and had come across your publication. To this effect, the school has promised to put in place every available resource in place to support not just my daughter's schooling but also the family. Arrangements are being made for me to address all the staff, come September. Also regular reviews and protocols of actions were discussed and updating care plan, the first of which we did yesterday. Such articles help to support everybody involved to raise awareness”. (Mother of two children with SCD)
Professor Simon M Dyson
De Montfort University
Read the Original
This page is a summary of: Reported school experiences of young people living with sickle cell disorder in England, British Educational Research Journal, February 2010, Wiley,
DOI: 10.1080/01411920902878941.
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