School Children and Sickle Cell Disorders

Unit for the Social Study of Thalassaemia & Sickle Cell Research Report 4 2006-2011

Funders:

Education of Minority Ethnic Pupils: Young People with Sickle Cell Disease

A team of researchers at De Montfort projected to rise from 12,500 to over University, University of York and 20,000. Nearly one-quarter of all Loughborough University was funded pupils of primary age in England are by the Economic and Social Research in ethnic groups at higher risk of Council to report on the experiences carrying genes associated with SCD. of young people with sickle cell disorders in the education system in What is the source of evidence a multi-method study between 2006 for this paper? and 2011. 1. A survey of all local authorities in England about their response to the What is Sickle Cell Disease / issue of SCD (107/150 replied). Sickle Cell Disorder (SCD)? 2. A survey of 569 pupils living with SCD is a complex condition with SCD, from twenty different sites major symptoms including strokes, across England, about their silent strokes, chronic pain, and experiences at school. acute painful crises generally 3. In-depth interviews with 40 young regarded as at, or beyond, the pain people with SCD of terminal cancer. It affects all 4. A survey of 206 schools attended ethnic groups, though at different by young people with SCD rates of prevalence. 1 in 7 Black 5. Case studies of ten young people African and 1 in 540 White British with SCD newborns in England carry genes associated with sickle cell. What is the current position of Local Authority Children and What numbers are involved? Young Person’s Services with regard to SCD? Whilst most authorities agreed that children with SCD should be given an individual health care plan (IHCP), only 14/107 could state how many children under their jurisdiction had an IHCP and only 15/107 could even state how many children with SCD they had in their schools. Only 2/107 SCD is the most common single gene had any written policy on children condition in England affecting 1 in with SCD. Thus at this level SCD as a 2,300 of all births. Based on this potential issue affecting pupils is birth rate, numbers with SCD are

Economic and Social Research Council Grant RES-000-23-1486 Simon Dyson, Lorraine Culley, Sue Dyson, (all De Montfort University) Karl Atkin, University of York Jack Demaine, Loughborough University Unit for the Social Study of Thalassaemia & Sickle Cell Research Report 4 2006-2011 relatively invisible in education policy permitted to drink water; about a terms. third that they are made to take unsuitable exercise. All of these Isn’t SCD only relevant for could trigger a severe sickle cell London and a few other large painful crisis. Furthermore, 30% say urban areas? that they have been called lazy when No. SCD in increasingly not confined in fact they are tired from their to areas traditionally thought of as anaemia. These percentages having high numbers of minority represent hundreds of children with ethnic groups. This is because (1) SCD reporting these experiences in SCD is increasingly not confined to school. minority ethnic groups (hence the decision of the NHS Screening 60% Programme to screen ALL babies 50% born in England for SCD, irrespective 40% of ethnicity) (2) those groups predominantly affected are 30% increasingly resident outside London. 20% Even an authority ranked 122/150 of 10% all local authorities in terms of 0% e d d d e r t l numbers of Black pupils was able to y e e e s e e b i i l z i i t l l a n a n c a t a o i r e L report five children with SCD. e W T C u e D D Conversely, an authority covering an s x n E area deemed by the NHS to be a U high prevalence area for SCD claimed (wrongly) that they had no What about missed schooling pupils with SCD in their area. because of SCD? In addition to absences for other Isn’t SCD covered by the DCFS reasons, children report they miss an guidance on children with average of over 16 days per year medical conditions in schools? with SCD-related illness, with 12% Not adequately. The guidance does missing more than 63 sessions and a not mention sickle cell explicitly. In few missing hundreds of days of particular because prevention does schooling a year. not feature explicitly in the guidance, opportunities to prevent sickle cell What about the duty on schools complications (keeping warm; being to make provision when 15 days allowed to drink water in class in or more are missed? order to remain well-hydrated; being Only around 5% say they are permitted to go to the toilet, as enabled to fully catch up lessons children with SCD cannot missed, and nearly 20% that they concentrate urine as easily; avoiding are not helped to catch up at all. The strenuous exercise, such as cross- average reported is that they are country runs in the rain; avoiding helped to catch up about 38% of stress) may not be highlighted to what is missed. schools. What do teachers know of SCD? What do children with SCD say About 10% of parents do not tell the happens to them in school? school the child has SCD, largely Children with SCD report not being because of their concern the way the cared for adequately at school. For child will be treated. Whether or not example a majority of children say the school has been told the child that they have been prevented from has SCD makes little difference to going to the toilet when needed; the way the child is reportedly about half report that they are not treated at school, and in some

Economic and Social Research Council Grant RES-000-23-1486 Simon Dyson, Lorraine Culley, Sue Dyson, (all De Montfort University) Karl Atkin, University of York Jack Demaine, Loughborough University Unit for the Social Study of Thalassaemia & Sickle Cell Research Report 4 2006-2011 instances reportedly leads to worse Influencing Policy treatment. There is a difference Two members of the team were between a teacher knowing a child invited to address the All Party has SCD and knowing the full Parliamentary Group on Sickle Cell implications of a child having SCD. and Thalassaemia (under Dianne Abbott, MP) Portcullis House, What do young people with SCD Westminster 25th March 2009, and a feel about telling others they parliamentary report The Social have sickle cell? Aspects of Sickle Cell Disease and In the main young people living with Thalassaemia in Young People was sickle cell feel that their teachers produced. should know about their SCD, but opinions about whether or not it is better for peers to know are more divided. The advantages of telling others were the hope that the information would be used to better understand what you people with SCD are going through (as long as this did not amount to being patronizing and constantly fussing over how they are); to make reasonable adjustments by putting in place preventive measures to stop young people with sickle cell Two members of the team were becoming ill, to advocate on their invited to address the Parliamentary behalf, to help in practical ways Health Committee (under Kevin when this was needed, and to Barron MP) Portcullis House, respond if they became ill. The Westminster 2nd November 2009. disadvantages were of being bullied or taunted, of reinforcing ignorant The team was asked to brief Steve views, of provoking over- McCabe MP (Birmingham, Selly Oak) sentimentality, but above all in on sickle cell and education in drawing attention to themselves as January 2010. He then initiated a allegedly different from their peers local campaign in Birmingham to try to improve the situation for young How do individual schools people with sickle cell at school. support young people with SCD? Less than ten per cent of schools had Recommendations a specific policy for young people 1) The Department of Education with SCD. Under guidance issued by should re-issue the Guidance the Department for Children, on Children with Medical Families and Schools, all children Conditions at School with a with a medical condition should have specific section on sickle cell. an individual health care plan to 2) Use this re-issue to highlight support them at school. Less than the idea of PREVENTION; half (89 of 206 schools surveyed) stress that individual health appeared to have individual health care plans should also have care plans for their student with sections on prevention; SCD. Less than a quarter of teachers promote the idea that schools responsible for care of young people should AUDIT the physical with SCD had received an in-service and social environment of the education to guide them in this role. school. By using sickle cell as the example, this could help children with other medical

Economic and Social Research Council Grant RES-000-23-1486 Simon Dyson, Lorraine Culley, Sue Dyson, (all De Montfort University) Karl Atkin, University of York Jack Demaine, Loughborough University Unit for the Social Study of Thalassaemia & Sickle Cell Research Report 4 2006-2011

conditions where prevention Publications is an issue. 3) Re-issue guidance on the 15 Dyson, SM; Atkin, K; Culley, LA; Dyson, days absence leading to the SE; & Evans, H (2011) Sickle cell, requirement to make habitual dyspositions and fragile alternative provision. Stress dispositions: young people with sickle cell at school Sociology of Health and Illness that the guidance means ANY fifteen days not just Dyson, SM; Atkin, K; Culley, LA; Dyson, consecutive days. Children SE; Evans, H & Rowley, DT (2010) with SCD need funded Disclosure and sickle cell disorder: a support with access to a mixed methods study of the young teacher, not merely person with sickle cell at school Social encouraged to copy up notes Science and Medicine 70 (12): 2036- they may not necessarily 2044. understand. By using sickle Dyson, SM; Abuateya, H; Atkin, K; cell as the example, this could Culley, LA; Dyson, SE; and Rowley, DT help children with other (2010) Reported school experiences of medical conditions where young people living with sickle cell intermittent absence is an disorder in England British Educational issue. Research Journal 36 (1): 125-142. 4) Make available to schools and local authorities a full briefing, Dyson, SM; Abuateya, H; Atkin, K; through workshops, on care Culley, LA; Dyson, SE; & Rowley, DT of the child with SCD at (2008) Local authorities and the education of young people with sickle cell school, outlining all the disorders in England International ramifications of the condition Studies in Sociology of Education 18 (1) for the school experience. 47-60. 5) Local authorities seem unaware of the issue of SCD. Abuateya, H; Atkin, K; Culley, LA; All children born in England Dyson, SE and Dyson, SM (2008) Young are screened at birth for SCD. People with Sickle Cell Disorder and Require the Directors of Public Education: A Knowledge Review Diversity Health to notify their Local in Health and Social Care 5 (2): 123-135. Authority Director of Children Dyson, SM; Atkin, K; Culley, LA and and Young Persons of the Dyson, SE (2007) The educational numbers of children born experiences of young people with sickle each year with SCD. cell disorder: a commentary on existing literature. Disability and Society 22 (6): Web-Site 581-594.

Further Information The Economic and Social Research Council is the UK's leading agency for research funding and training in the social sciences www.esrcsocietytoday.ac.uk

The project has rented the domain The Sickle Cell Society name www.sicklecelleducation.com www.sickecellsociety.org and has developed content to provide an information site on the OSCAR Organization for Sickle Cell project for schools with pupils who Anaemia Research have sickle cell. The web-site www. oscarbirmingham .org.uk became live on January 25th 2010. The site includes downloadable pdf Sickle Cell Young Stroke Survivors files for use in school awareness. www.scyss.org

Economic and Social Research Council Grant RES-000-23-1486 Simon Dyson, Lorraine Culley, Sue Dyson, (all De Montfort University) Karl Atkin, University of York Jack Demaine, Loughborough University