This document summarizes research on the education of young people with sickle cell disorders (SCD) in England. The research included surveys of 150 education authorities, 500 young people with SCD, and 200 schools. It found that most local authorities did not know how many students with SCD they served and did not have policies in place to support these students, such as statements of special education needs or individual healthcare plans. As a result, the needs of young people with SCD are not being adequately addressed and good practices that do exist cannot be shared and implemented more broadly. The research concludes that young people with SCD are currently invisible within England's education system.

1. Local authorities and the education of young people with sickle cell disorders (SCD) in England Simon Dyson Sickle Cell and Education Lecture 2 of 6

2. Funding RES-000-23-1486.

3. Research Team Dr Hala Abuateya, Unit for the Social Study of Thalassaemia and Sickle Cell, Research Fellow Professor Karl Atkin, University of York Professor Lorraine Culley, De Montfort University, Leicester Professor Simon Dyson, Unit for the Social Study of Thalassaemia and Sickle Cell, Project Director Dr Sue Dyson, De Montfort University, Leicester Dr Jack Demaine, Loughborough University

4. The Research: Phases 1-2 [1] Review of Secondary Sources [2] Surveys: [i] 150 education authorities and policies [ii] 500 young people under 25 about their educational experiences [iii] 200 schools attended by pupils with SCD.

5. The Research: Phases 3-5 [3] 50 depth, tape-recorded interviews [4] 8-10 case studies with completion of year-long diaries and follow-up interviews. [5] Policy Development Workshops at five regional seminars

6. Survey of Local Authorities February-April 2007 107 replied from 150

7. Replies by Local Authority Type

8. Responding Officer

9. Survey of Local Authorities Who to contact in local authority Children’s and Young Person’s Department 92 different job titles among the 107 replies.

10. Local Authorities with Policies on..

11. Should have Statement of Special Educational Needs

12. Department for Children, Schools and Families (DCSF) Spokesperson SCD was not on its own regarded by the DCSF as a special educational needs (SEN) issue That advice on drawing up an individual health care plan (IHCP) was available within guidance issued Monies for ethnic minority pupils were based on “under achieving minority ethnic pupils and those whose first language is other than English”

13. Should have Statement of Special Educational Needs

14. Should have Individual Health Care Plan (IHCP)

15. Should have Individual Health Care Plan (IHCP)

16. Number of Children with SCD in Local Authorities, England, 2007

18. Number of Children with SCD in Local Authorities, England, 2007 Most LAs do not know numbers of children with SCD under their jurisdiction Most do not know numbers with SEN statements or IHCP despite majority stating that these should be given to children as a matter of course 394/5000 = 7.9% children with SCD “visible” in policy terms within education system

19. Number of Children with SCD in Local Authorities, England, 2007

21. Number of Children with SCD in Local Authorities, England, 2007 LA ranked 90th an area designated “high prevalence” by NHS Sickle Cell and Thalassaemia Screening Programme LA ranked 122nd still reported five children with SCD None of the ten local authorities with highest number of Black (African/Caribbean/Other) reported numbers

22. Conclusion Young people with SCD currently invisible in terms of education policy Where good practice exists it does so as individual acts of kindness and remains impossible to share with teachers and young people who remain unknown Where bad practice exists: No general good practice to learn form, Risks making problems a problem of individual character of parent/young person with SCD No accountability on part of local authorities/schools

23. Publication 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] http://dx.doi.org/10.1080/09620210802196168

24. Further Information For further information on this research programme, please visit: http://www.sicklecelleducation.com End of presentation