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Education and Sickle Cell Disease:Challenges and Prospects
GSTT September 2008
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Funding
Three-year project
September 2006-
August 2009.
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Research Team
Dr Hala Abuateya, Unit for the Social Study of
Thalassaemia and Sickle Cell, Research Fellow
Dr Karl Atkin, University of York
Professor Lorraine Culley, De Montfort University,
Leicester
Professor Simon Dyson, Unit for the Social Study ofThalassaemia and Sickle Cell, Project Director
Dr Sue Dyson, De Montfort University, Leicester
Dr Jack Demaine, Loughborough University
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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.
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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 regional
seminars
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Survey of Local Authorities
February-April 2007
107 replied from 150
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Replies by Local Authority Type
Replied Declined Total Response
Rate
Metropolitan
Borough28 8 36 78%
County 25 9 34 74%
London 23 10 33 70%
Unitary
Authority31 16 47 66%
TOTAL 107 43 150 71%
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Survey of Local Authorities
Who to contact in local authority Childrens
and Young Persons Department 92 different job titles among the 107 replies.
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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
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Local Authorities with Policies on..
Total
Asthma 28Cystic Fibrosis 7
Diabetes 23
Epilepsy 28Haemophilia 1
Sickle Cell 2
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Should have Individual Health Care
Plan (IHCP)
Number
Yes 91
No 6
Depends 2
No Reply 7
TOTAL 107
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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
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Number of Children with SCD in Local
Authorities, England, 2007
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Number of Children Number of Authorities
Not Able to State
?92
None
0
5
Children with Sickle Cell Disorders.....
11
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
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Number of Children with SCD in Local
Authorities, England, 2007
Most LAs do not know numbers of children
with SCD under their jurisdictionMost do not know numbers with IHCP
despite majority stating that these should be
given to children as a matter of course
394/5000 = 7.9% children with SCD visiblein policy terms within education system
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Number of Children Ranking of Authorities
Not Able to State
?None
090th 125th 129th 133rd 146th
Children with Sickle Cell Disorders..
1100th
3 120th
5 122nd
7 69th
10 96th
11 17th
20 26th
37 18th
50 21st
250 11th
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Number of Children with SCD in Local
Authorities, England, 2007
LA ranked 90th an area designated high
prevalence by NHS Sickle Cell andThalassaemia Screening Programme
LA ranked 122nd still reported five children
with SCD
None of the ten local authorities with highestnumber of Black (African/Caribbean/Other)
reported numbers
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Publication
Dyson, SM; Abuateya, H; Atkin, K; Culley,
LA; Dyson, SE; and Rowley, DT (2008) Localauthorities and the education of young
people with sickle cell disorders (SCD) in
England International Studies in Sociology of
Education 18 (1): 47-60.
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Survey of 500 Young People
July 2007-July 2008
569 replies
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Acknowledgements
Kings College, North West London (Brent);
Guys and St Thomass. Sickle Cell Society, Sickle Cell Young Stroke
Survivors, OSCAR (Sandwell, Bristol,
Nottingham, Leicester); Northampton, Milton
Keynes, Luton, Barking, Tower HamletsHackney PCT, Newham PCT, Birmingham
PCT
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Sex of respondents
288 female (50.6% valid)
281 male (49.4% valid)
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Age of Respondents
0
10
20
30
40
50
60
70
4 7 10 13 16 19 22 25
Age of Respondent
Number
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Black Angolan 21
Black Caribbean 162
Black Congolese 19
Black Ghanaian 62
Black Nigerian 183
Black Sierra Leonean 46
Black Sudanese 6
Black Somali 6
Black Other 46
Asian 5
White English/Scottish/Welsh 3
Others White 3
Total 562
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Changing ethnic composition of Black
communities in UK
African Caribbean: 10% carriers; 0.25% SCD
African: 25% carriers; 2% SCD
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Reported Type of Sickle Cell Disorder
Number Valid Per cent
Hb SS 411 72.9%
Hb SC 81 14.4%
Other 16 2.8%
Not known 56 9.9%
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Reported Severity Indicators
Reported Indicator of Severity n Valid
%
Stroke 135 23.7%
Regular Blood Transfusion 146 25.7%
Emergency Blood Transfusion 222 39.0%
Admitted 3x or more per year 203 35.7%
Hydroxyurea 110 19.3%
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Number of Crises Last Year Reponses
None 113 (20%)
1 62 (11%)2 53 (10%)
3 67 (12%)
4 37 (7%)5 65 (12%)
6 32 (6%)
7 20 (4%)8 11 (2%)
9 6 (1%)
10 or more 87 (16%)
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Context of Black Children in Education
System
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How Our Schools Fail Black Children
Bernard Coard
(1971) How the West
Indian Child is Made
Educationally Sub-
Normal in the British
Educational System
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Black Performance Relative to LEA Average
-25
-20
-15
-10
-5
05
10
15
20
25
LocalAvera
ge
Age 5Age 11
Age 16
+20 points
-21 points
-2 points
Source: Gillborn, D (2008) Racism and Education London: Routledge p100
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Black Performance Relative to National
Average Age 11 and Age 16
-50
-40
-30
-20
-10
0
10
NationalAvera
ge
Age 16
Age 11
+7
Source: Gillborn, D (2008) Racism and Education London: Routledge p101
+6 +4-12 -6 -3 -11 -8 -6 -6
-23 -20 -20
-34
-24
-28
-23
-16-14
-28
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School Days Missed per Year
(Sickle cell related)
Ranged from 0-200 days
Average (Mean) 16.3 days (sd 25 days)Most frequently reported (Mode) 10 days
15 days: school required to make provision
63 sessions (half days) or 32 days =persistent absence
Around 12% > 32 days
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School Days Missed per Absence
0-112 days
Mean 7.1 days (sd 12 days)Most frequently reported (Mode) 2, 3 or 5
days
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How Much Caught Up (%)?
0
2040
60
80
100
120140
160
180
0% 25% 50% 75% 100%
How much helped to catch up (scale 0 to 100%)
[Mean = helped to catch up about 38%]
Number
19%
31% 31%
13%
6%
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0
50
100
150
200
250
300
350
Not Allowed
Toilet
Not Allowed
Drink
Unsuitable
Exercise
Called Lazy
When Tired
34%36%
Reported Experiences in Schools
46%
57%Number
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0
50
100
150
200
250
300
350
Unsuitable
exercise
Hot/Cold Teacher Pupil Furniture
21%25%
Reported Triggers for Pain Crises in
Schools
30%43%
Number
54%
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050
100150200250300350400450
Teache
rtold
Teach
erbelieve
s
C
hild
renbe
lieve
Teache
rhelps
Painkille
rs
Sent
Hos
pital
Colle
cted
20%27%
Reported reactions when child in pain
47%
75%Number
62% 53% 59%
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020
40
60
80
100
120
140
Scien
ce
Maths
English
Hist
/Geo
g PE
PHSE
Art/Dr
ama
Assembly
4%
Reported subjects covering SCD
9%
23%
Number
2%
6%
11%
3% 3%
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Contact Details
Professor Simon Dyson
Room 1.27 Hawthorn BuildingDe Montfort University
Leicester LE1 9BH
(0116) 257 7751sdyson@dmu.ac.uk
http://www.tascunit.com
mailto:sdyson@dmu.ac.ukhttp://www.tascunit.com/http://www.tascunit.com/mailto:sdyson@dmu.ac.uk