In 2017, Dr Maria Berghs, a colleague of Professor Simon Dyson at De Montfort University, went to Sierra Leone in 2017 and got their ‘Guide to School Policy‘ adapted to the local context. (The guide is also available in many other languages).
Whilst there someone took the guide, wrote a sickle cell song about it in KRIO (Creole), and the people involved have now all agreed to share this wonderful music through a Creative Commons License.
The Sierra Leone Sickle Cell Disease Society – Amelia Eva Gabba and Annie Sesay. The wonderful singing was provided by the Methodist Girls High School, Freetown, with Edwina Kamara (teacher) and pupils Fatmata Kargbo, Haja Fatmata Sesay, Vicresa Momoh, Fanta Kabba, Lina Kanu,Tushiatu Bangura, Jessica Johnson, Francess Kamara, Naizmiyeh Turay, Fatmata Mansaray and Tenneh Samura.
We thank everyone involved for their wonderful musical creation.
In the UK researchers at De Montfort University have examined the lack of care for young people with sickle cell disorder (SCD) at school (Dyson et al, 2010a, 2010b, 2011). This has resulted in the publication of a Guide to School Policy on Sickle Cell. The guide is aimed not primarily at classroom teachers (though they would be very welcome to make use of it) but at those with a broader responsibility. It is written with the following kinds of people in mind: the lead teacher for young people with a medical condition; heads of school year or those responsible for pastoral care in school; school nurses; heads of school nursing; local authority school advisors; school governors, or ministry of education officials. In short it is aimed at those who can influence how schools respond to young people with sickle cell disorder (SCD).
Working with a Newton Fund grant, early career research fellow at De Montfort University Dr Maria Berghs has collaborated with the Sierra Leone Sickle Cell Society led by Dr George Tregson-Roberts and Amelia Gabba, together with colleagues in Helen Keller International and schools in the Sierra Leonean capital, Freetown, to adapt the guide to the context in Sierra Leone.
In Sierra Leone, children are legally required to attend six years of primary school and three years of junior secondary school until they are 15 years old. This consists of the basic education that each citizen is entitled to have according to the 2004 Education Act. The 2004 Education Act stipulates that there should be no discrimination which could prevent a child in attaining this basic education. The 2007 Child’s Rights Act also states that children are entitled to basic education. An important part of school inclusiveness is recognising the importance of offering care to young people with long standing illness, particularly since a major part of childhood is spent in attending school. The duty on ensuring inclusiveness in school falls to the school authorities who must make arrangements for supporting pupils at school with medical conditions. Pupils with sickle cell disorder fall under this legislation and guidance. In a resource-poor, post-conflict, and post-Ebola country, like Sierra Leone, there are additional constraints facing children living with serious health conditions accessing not only school but also health services. The country’s educational sector was badly affected by a ten year civil war (1991-2002) and the world’s most serious Ebola epidemic (2014-2016). The educational sector is rebuilding but there is a dire shortage of teachers and school facilities. When we think of inclusiveness, the 2006 United Nations Convention on the Rights for Persons with Disabilities is also applicable and school authorities are responsible for ensuring inclusion of a child with health condition who may further have acquired or been born with an impairment. We therefore hope that this new guide to school policy for sickle cell will help all schools in Sierra Leone to better support young people with sickle cell at school.
The Guide to School Policy that has been adapted by the Sierra Leone Sickle Cell Society and colleagues in Freetown, Sierra Leone
Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010a) 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. [ISSN: 0277-9536] http://dx.doi.org/10.1016/j.socscimed.2010.03.010
Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010b) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142 [ISSN 0141-1926] http://dx.doi.org/10.1080/01411920902878941
More details to the background of the work in Sierra Leone can be found on a second blog post here. The SCOOTER project would like to reflect here our thanks to all of those mentioned in the guide who helped produced this vital adaptation.
We would like to thank the following for their work in producing this adaptation of the Guide to School Policy:
Parents, caregivers and young people with sickle cell, Sierra Leone Sickle Cell Disease Society Amelia Eva Gabba, Sierra Leone Sickle Cell Disease Society Tamba P. Kellie, Sierra Leone Grammar School Benson A. Sesay, Freetown Secondary School for Girls
Samuel O. Macauley, Milton Margai College of Education and Technology Samuel I. Bangura, Helen Keller International, Freetown Osman Kamara, Helen Keller International, Freetown Annie Sesay, Sierra Leone Sickle Cell Disease Society
Cassandra Leigh, Sierra Leone Sickle Cell Disease Society Iyamide Thomas, GT Consultancy and UK Sickle Cell Society Maria Berghs, De Montfort University, UK Students and staff at Sierra Leone Grammar School, Freetown Secondary School for Girls, and the Methodist Girls High School