Sickle Cell: A Guide to School Policy Second Edition
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.