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
To mark the United Nations International Sickle Cell Day on June 19th, we are pleased to announce the launch of a second edition of the popular Guide to School Policy for Sickle Cell. Sickle cell disease (SCD) is one of the most common genetic conditions in the world, and affects 1 in every 2,000 children born in England (1 in every 600 in London). And yet many people have still to even hear about the condition, and even where it is known about, it is a condition that is widely misunderstood, and not given the recognition it deserves.
The initial guide was developed on the basis of research evidence from a project funded by the Economic and Social Research Council and led by Simon Dyson of De Montfort University. The research findings were published in the journal Social Science and Medicine and suggested that raising teacher awareness of sickle cell disease (SCD) was, by itself, insufficient to lead to good support for students with sickle cell whilst they are at school. What was required was the implementation of policy that created strong support structures in the background, without drawing attention to young people with SCD as different from their peers, something the young people themselves intensely disliked. Since the first edition of the guide was launched in England in 2011, it has been adapted and translated into Yoruba, Hausa and Igbo for use in Nigeria, and into Portuguese for use in Brazil. It has even been credited with influencing the prestigious Centers for Disease Control and Prevention in the USA to develop their guide to supporting pupils with sickle cell disease at school in the USA.
One reason for the development of a second edition is the introduction, in the UK, of the Children and Families Act of 2014. Section 100 of this act places a particular duty on governing bodies to makes provision for pupils with medical conditions such as SCD disease, and requires pupils to have education, health and care plans, something for which there was already a model in the first edition of the guide.
The guide has already proved its worth and in May 2016 a BBC Radio 4 Appeal by Malorie Blackman on behalf of the Sickle Cell Society specifically mentions the case of a mother Jacqueline who was concerned about the treatment of her son with SCD Joseph at school, and who used the guide to school policy to advocate on behalf of her son to the teachers at school. We hope that head teachers and school governors find the guide useful, and that it leads to continuing improvements in the way that young people with SCD are integrated into school.
The reason for this second edition is change to UK law with the introduction of the Children and Families Act of 2014. This requires schools to make provision for young people with conditions such as sickle cell disease, and the guide further supports this.
We hope this guide is useful and it continues to lead improvements in the way that young people with SCD are integrated into school.
Kelen Cristina Sant’Anna de Lima – Nupad/FM/UFMG e LETRA/FALE/UFMG Igor Antônio Lourenço da Silva – ILEEL/UFU
Gilberto Zulato – Nupad/FM/UFMG
Julia Rodrigues – LETRA/FALE/UFMG
Juliana Maria Gonçalves da Silva – LETRA/FALE/UFMG
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). This guide has previously been adopted by several UK sickle cell NGOs. It has now been adapted by colleagues working in the state of Minas Gerais in Brazil. Working with colleagues from CEHMOB MG (a multi-disciplinary organization working on sickle cell) and NUPAD part of the medical school at the Federal University of Minas Gerais (UFMG) in Belo Horizonte, Kelen Sant’Anna de Lima, a post-doctoral researcher in socio-linguistics at UFMG, has co-ordinated a team of experts in sickle cell, cultural adaptation and translation to produce a Portuguese language version of the guide. As more and more young people living with sickle cell disease in Brazil grow up to become adults, it is hoped that this guide will help them to achieve the best they can at school in order to best prepare them for adult life.
The Guide was launched at the Second World Congress on Sickle Cell, which took place 11-th-14th November 2014 in Rio de Janeiro. At a special workshop delegates heard from Isabel Castro (CEHMOB MG); Kelen Santa’Anna de Lima (NUPAD); Maria Zeno Soares (FENAFAL, the Federation of Brazilian NGOs for sickle cell) Simon Dyson (De Montfort University) and from the special guest of honour Ilma Fátima de Jesus from the Brazilian Ministry of Education.
The Guide to School Policy that has been adapted and translated into Portuguese by the team at the CEHMOB MG and the Federal University of Minas Gerais.
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
The ‘Schools Guide‘ was the result of research by Professor Simon Dyson and colleagues, and assists teachers and policy makers in supporting children with sickle cell anaemia and thalassaemia in schools. The guide is one of this projects most popular open educational resources (OER), and through Simon’s hard work has been translated into several Nigerian languages, with others planned.
This is a lovely video outlining the work, and the bundle of resources contains downloadable slides and documents to support further understanding of this area.