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