Sickle cell disorder (SCD) is a serious multi-system disorder affecting 1 in 2000 of all births in England, and is a leading genetic condition both in England and globally. Medical interventions in early life have greatly improved survival of young people with SCD.
Our research showed lack of care at school can undermine the health of young people with SCD, compromise their education, impact negatively on their physical, mental and social well being, and can lead to expensive emergency admissions to hospital.
A Guide to School Policy on Sickle Cell including best practice and an exemplar of an individual health care plan for young people with SCD has been written, and has been released as an open education resource using Creative Commons copyright (CC: BY-SA).
The guide is in use by sickle cell organizations such as the Sickle Cell Society and OSCAR Sandwell. The Guide was explicitly acknowledged as a key influence in the development of a USA guide by the Centers for Disease Control and Prevention [published January 2014]. It has been adapted and translated for use in training teachers in several Brazilian states in 2015-6; by SCORE International, an NGO working on sickle cell in Nigeria; and by the Sierra Leone Sickle Cell Society.
You can find the various school policies in differing languages (Hausa, Igbo, Portuguese etc.) online:
The Sierra Leonean adaption into Krio resulted in the creation of a song to educate about sickle cell. It can be found online: https://sicklecellanaemia.org/
A Guide to School Policy on Sickle Cell
List of Publications on Sickle Cell in Schools
Dyson, SM; Atkin, K; Culley, LA; and Dyson, SE (2014) Critical realism, agency and sickle cell: case studies of young people with sickle cell disorder at school Ethnic and Racial Studies 37(13): 2379-2398 http://dx.doi.org/10.1080/01419870.2013.809130
Dyson, SE, Atkin, K, Culley, LA, Demaine, J and Dyson, SM (2012) School ethos and variation in health experience of young people with sickle cell disorder at school Diversity and Equality in Health and Care 9 (1): 33-44. http://diversityhealthcare.imedpub.com/school-ethos-and-variation-in-health-experience-of-young-people-with-sickle-cell-disorder-at-school.php?aid=1828
Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; and Evans, H (2011) Sickle cell, habitual dyspositions and fragile dispositions: young people with sickle cell at school Sociology of Health and Illness 33 (3): 465-483 http://dx.doi.org/10.1111/j.1467-9566.2010.01301.x
Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044. http://dx.doi.org/10.1016/j.socscimed.2010.03.010
Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142 http://dx.doi.org/10.1080/01411920902878941
Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2008) Local authorities and the education of young people with sickle cell disorders (SCD) in England International Studies in Sociology of Education 18 (1) 47-60. http://dx.doi.org/10.1080/09620210802196168
Abuateya, H; Atkin, K; Culley, LA; Dyson, SE and Dyson, SM (2008) Young People with Sickle Cell Disorder and Education: A Knowledge Review Diversity in Health and Social Care 5 (2): 123-135. https://diversityhealthcare.imedpub.com/education-and-young-people-with-sickle-cell-disorder-a-knowledge-review.php?aid=2153
Dyson, SM; Atkin, K; Culley, LA and Dyson, SE (2007) The educational experiences of young people with sickle cell disorder: a commentary on existing literature. Disability and Society 22 (6): 581-594. http://dx.doi.org/10.1080/09687590701560196