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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

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Page 1: SCOOTEROER31c Sickle Cell in Schools Survey

Local authorities and the education of young people with sickle cell disorders

(SCD) in England

Simon Dyson

Sickle Cell and EducationLecture 2 of 6

Page 2: SCOOTEROER31c Sickle Cell in Schools Survey

Funding RES-000-23-1486.

Page 3: SCOOTEROER31c Sickle Cell in Schools Survey

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

Page 4: SCOOTEROER31c Sickle Cell in Schools Survey

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.

Page 5: SCOOTEROER31c Sickle Cell in Schools Survey

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

Page 6: SCOOTEROER31c Sickle Cell in Schools Survey

Survey of Local Authorities

February-April 2007 107 replied from 150

Page 7: SCOOTEROER31c Sickle Cell in Schools Survey

Replies by Local Authority Type

Replied Declined Total Response Rate

Met Boro 28 8 36 78%

County 25 9 34 74%

London 23 10 33 70%

Unitary 31 16 47 66%

Total 107 43 150 71%

Page 8: SCOOTEROER31c Sickle Cell in Schools Survey

Responding Officer

Type of Role Reported Total

Special Needs/Inclusion 42

Educational Psychology 7

Medical Needs/Physical Needs 7

Education Officer (Generic/Management Title) 22

Curriculum-Related Role 9

Individual head teacher 1

Nurse/School Nurse 2

Multiple 3

Other 13

Not Stated 1

TOTAL 107

Page 9: SCOOTEROER31c Sickle Cell in Schools Survey

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.

Page 10: SCOOTEROER31c Sickle Cell in Schools Survey

Local Authorities with Policies on..

Total

Asthma 28

Cystic Fibrosis 7

Diabetes 23

Epilepsy 28

Haemophilia 1

Sickle Cell 2

Page 11: SCOOTEROER31c Sickle Cell in Schools Survey

Should have Statement of Special Educational Needs

Number

Yes 77

No 17

Depends 4

No Reply 9

TOTAL 107

Page 12: SCOOTEROER31c Sickle Cell in Schools Survey

Department for Children, Schools and Families (DCSF) Spokesperson

(1) SCD was not on its own regarded by the DCSF as a special educational needs (SEN) issue

(2) That advice on drawing up an individual health care plan (IHCP) was available within guidance issued

(3) Monies for ethnic minority pupils were based on “under achieving minority ethnic pupils and those whose first language is other than English”

Page 13: SCOOTEROER31c Sickle Cell in Schools Survey

Should have Statement of Special Educational Needs

Number

Yes 77

No 17

Depends 4

No Reply 9

TOTAL 107

Able to State Numbers with SEN Statement 3

Page 14: SCOOTEROER31c Sickle Cell in Schools Survey

Should have Individual Health Care Plan (IHCP)

Number

Yes 91

No 6

Depends 2

No Reply 7

TOTAL 107

Page 15: SCOOTEROER31c Sickle Cell in Schools Survey

Should have Individual Health Care Plan (IHCP)

Number

Yes 91

No 6

Depends 2

No Reply 7

TOTAL 107

Able to State Numbers with IHCP 14

Page 16: SCOOTEROER31c Sickle Cell in Schools Survey

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

Number of Children Number of AuthoritiesNot Able to State 92None 5

Children with Sickle Cell Disorders.... 1 1

3 1

5 1

7 1

10 1

11 1

20 1

37 1

50 1

250 1

Total Children 394

Total Local Authorities = 107

Page 17: SCOOTEROER31c Sickle Cell in Schools Survey

Number of Children Number of Authorities

Not Able to State ?

92

None 0

5

Children with Sickle Cell Disorders..... 1

1

3 15 1

7 1

10 1

11 1

20 1

37 1

50 1

250 1

Total Children 394 Total Local Authorities = 107

Page 18: SCOOTEROER31c Sickle Cell in Schools Survey

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

Page 19: SCOOTEROER31c Sickle Cell in Schools Survey

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

Number of Children Number of AuthoritiesNot Able to State

None 90th 125th 129th 133rd 146th

Children with Sickle Cell Disorders…. 1 100th3 120th5 122nd7 69th

10 96th11 17th20 26th37 18th50 21st

250 11th

Page 20: SCOOTEROER31c Sickle Cell in Schools Survey

Number of Children Ranking of Authorities

Not Able to State ?None 0

90th 125th 129th 133rd 146th

Children with Sickle Cell Disorders.. …1 100th3 120th5 122nd

7 69th

10 96th

11 17th

20 26th

37 18th

50 21st

250 11th

Number of Children Ranking of Authorities

Page 21: SCOOTEROER31c Sickle Cell in Schools Survey

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

Page 22: SCOOTEROER31c Sickle Cell in Schools Survey

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:(1) No general good practice to learn form, (2) Risks making problems a problem of individual

character of parent/young person with SCD (3) No accountability on part of local authorities/schools

Page 23: SCOOTEROER31c Sickle Cell in Schools Survey

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

Page 24: SCOOTEROER31c Sickle Cell in Schools Survey

Further Information

For further information on this research programme, please visit:

http://www.sicklecelleducation.com

End of presentation