Education and Young People with Sickle Cell Anaemia

Education and Young People with Sickle Cell Anaemia
Article part 1 of 3

Here in the UK the sickle cell anaemia voluntary groups the Sickle Cell Society and the Organization for Sickle Cell Anaemia Research (OSCAR) have been supporting a research project run at De Montfort University. The project is funded by the UK Economic and Social Research Council (Project Number RES-000-23-1486) and has looked at the educational needs and experiences of young people with sickle cell disorders. The group of academics carrying out the study are led by Professor Simon Dyson at De Montfort University, Leicester. The academic team also includes Professor Lorraine Culley and Dr Sue Dyson (both De Montfort University); Professor Karl Atkin (University of York) and Dr Jack Demaine (Loughborough University).                                               

The project commenced in 2006 and is scheduled to run until 2011. The project began with a survey of the 150 local authorities in England to see what policies they had to support children with sickle cell in schools.

We received replies from 107 local authorities. Parents with children with sickle cell in schools need to know whom to contact in the local authority if they wish to try to get things changed. However, who do they contact? The difficulty they have may be judged by the fact that of the 107 replies, there were 92 different job titles among the officers who replied. Finding the right person to speak to is therefore likely to be very difficult for parents.

Only two local authorities had a specific policy on children with sickle cell in schools, whereas many more had policies on asthma, epilepsy or diabetes, all of which are specifically mentioned in guidance for schools issued by the Department for Education and Skills.

S Dyson Paper Figure 1

The majority of the local authorities (92 out of the 107 who replied) did not claim to know how many children with sickle cell there were in the local schools. Not knowing the numbers suggests that the local authority will be hard pressed to meet the needs of children with sickle cell in schools.

 S Dyson Paper Figure 2

This part of the project was successfully published as an academic article:

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. [ISSN 0962-1214]


Article by Professor Simon Dyson,

Unit for the Social Study of Thalassaemia and Sickle Cell Anaemia, De Montfort University, Leicester UK

Sickle Cell Anaemia Open Education Project

Sickle cell image

2 Nov 2010

This year 2010 marks the 100th anniversary of the publication that first described the medical condition Sickle Cell Anaemia. To coincide with this anniversary it gives me great pleasure to introduce SCOOTER, an open education project from De Montfort University, Leicester UK.

SCOOTER stands for “Sickle Cell Open – Online Topics and Educational Resources”. SCOOTER is funded by the UK Higher Education Funding Council for England (HEFCE) , and both the Higher Education Academy (HEA) and the Joint Information Systems Committee (JISC) are working in partnership to develop the HEFCE “Open Educational Resources” (OER) programme, supporting UK higher education institutions in sharing their teaching and learning resources freely online across the world.

Building on the work of a pilot which took place between April 2009 and March 2010, a second phase of projects and activities is now running until August 2011, of which SCOOTER is one of several projects. This phase will extend the range of materials openly available, and SCOOTER will produce educational resources on the topics of Sickle Cell Anaemia and Thalassemia, also known as Cooley’s disease in the US.

Sickle cell image
Christopher Roever, CC BY-NC-SA

What will happen next?
I’m Dr Vivien Rolfe the Project Leader, and along with Professor Simon Dyson and Dr Mark Fowler, and a growing team of De Montfort University staff, over the course of the year we will be releasing onto this website educational materials including photographs, laboratory data, slide presentations, videos and animations. We will be explaining how to produce open content, and how to licence material for use, such as using the Creative Commons licences associated with the pictures above.

Would you like to be involved?
Do you have materials or ideas for a resource?

Do you want to follow the progress of the SCOOTER project?

Do you want to be involved in testing out new resources?

If the answer is YES, then we would be delighted if you could email us and we will include you on our mailing list of already 200 researchers, health professionals, employers and education providers all working in the areas of Sickle Cell Anaemia and Thalassemia around the world.