Sced Gstt Course Sept 2008

8/14/2019 Sced Gstt Course Sept 2008

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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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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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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 [email protected]

http://www.tascunit.com
mailto:[email protected]://www.tascunit.com/http://www.tascunit.com/mailto:[email protected]

Documents

Sced Gstt Course Sept 2008