Sierra Leonean approach to sickle cell in schools

Sierra Leone

Sickle Cell in Schools: Work in Freetown, Sierra Leone, West Africa

A guide to school policy for Sierra Leone has just been released.

In the UK researchers at De Montfort University have examined the lack of care for young people with sickle cell disorder (SCD) at school (Dyson et al, 2010a, 2010b, 2011). This has resulted in the publication of a Guide to School Policy on Sickle Cell. The guide is aimed not primarily at classroom teachers (though they would be very welcome to make use of it) but at those with a broader responsibility. It is written with the following kinds of people in mind: the lead teacher for young people with a medical condition; heads of school year or those responsible for pastoral care in school; school nurses; heads of school nursing; local authority school advisors; school governors, or ministry of education officials. In short it is aimed at those who can influence how schools respond to young people with sickle cell disorder (SCD).

Working with a Newton Fund grant, early career research fellow at De Montfort University Dr Maria Berghs has collaborated with the Sierra Leone Sickle Cell Society led by Dr George Tregson-Roberts and Amelia Gabba, together with colleagues in Helen Keller International and schools in the Sierra Leonean capital, Freetown, to adapt the guide to the context in Sierra Leone.

In Sierra Leone, children are legally required to attend six years of primary school and three years of junior secondary school until they are 15 years old. This consists of the basic education that each citizen is entitled to have according to the 2004 Education Act. The 2004 Education Act stipulates that there should be no discrimination which could prevent a child in attaining this basic education. The 2007 Child’s Rights Act also states that children are entitled to basic education. An important part of school inclusiveness is recognising the importance of offering care to young people with long standing illness, particularly since a major part of childhood is spent in attending school. The duty on ensuring inclusiveness in school falls to the school authorities who must make arrangements for supporting pupils at school with medical conditions. Pupils with sickle cell disorder fall under this legislation and guidance. In a resource-poor, post-conflict, and post-Ebola country, like Sierra Leone, there are additional constraints facing children living with serious health conditions accessing not only school but also health services. The country’s educational sector was badly affected by a ten year civil war (1991-2002) and the world’s most serious Ebola epidemic (2014-2016). The educational sector is rebuilding but there is a dire shortage of teachers and school facilities. When we think of inclusiveness, the 2006 United Nations Convention on the Rights for Persons with Disabilities is also applicable and school authorities are responsible for ensuring inclusion of a child with health condition who may further have acquired or been born with an impairment. We therefore hope that this new guide to school policy for sickle cell will help all schools in Sierra Leone to better support young people with sickle cell at school.

Guide to school policy in Sierra Leone
CC-BY-SA Sierra Leone Sickle Cell Society et al

The Guide to School Policy that has been adapted by the Sierra Leone Sickle Cell Society and colleagues in Freetown, Sierra Leone

 

Sierra Leone
Credit: United Nations Office for the Co-ordination of Humanitarian Affairs

 

References

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; and Evans, H (2011) Sickle cell, habitual dyspositions and fragile dispositions: young people with sickle cell at school Sociology of Health and Illness 33 (3): 465-483 [ISSN: 0141-9889] http://onlinelibrary.wiley.com/doi/10.1111/j.1467-9566.2010.01301.x/full

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010a) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044. [ISSN: 0277-9536] http://dx.doi.org/10.1016/j.socscimed.2010.03.010

Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010b) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142 [ISSN 0141-1926] http://dx.doi.org/10.1080/01411920902878941

 

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Version 2 of the Guide to school policy – blog post

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Sickle Cell: A Guide to School Policy Second Edition

Download the resource here

To mark the United Nations International Sickle Cell Day on June 19th, we are pleased to announce the launch of a second edition of the popular Guide to School Policy for Sickle Cell. Sickle cell disease (SCD) is one of the most common genetic conditions in the world, and affects 1 in every 2,000 children born in England (1 in every 600 in London). And yet many people have still to even hear about the condition, and even where it is known about, it is a condition that is widely misunderstood, and not given the recognition it deserves.

The initial guide was developed on the basis of research evidence from a project funded by the Economic and Social Research Council and led by Simon Dyson of De Montfort University. The research findings were published in the journal Social Science and Medicine and suggested that raising teacher awareness of sickle cell disease (SCD) was, by itself, insufficient to lead to good support for students with sickle cell whilst they are at school. What was required was the implementation of policy that created strong support structures in the background, without drawing attention to young people with SCD as different from their peers, something the young people themselves intensely disliked. Since the first edition of the guide was launched in England in 2011, it has been adapted and translated into Yoruba, Hausa and Igbo for use in Nigeria, and into Portuguese for use in Brazil. It has even been credited with influencing the prestigious Centers for Disease Control and Prevention in the USA to develop their guide to supporting pupils with sickle cell disease at school in the USA.

One reason for the development of a second edition is the introduction, in the UK, of the Children and Families Act of 2014. Section 100 of this act places a particular duty on governing bodies to makes provision for pupils with medical conditions such as SCD disease, and requires pupils to have education, health and care plans, something for which there was already a model in the first edition of the guide.

The guide has already proved its worth and in May 2016 a BBC Radio 4 Appeal by Malorie Blackman on behalf of the Sickle Cell Society specifically mentions the case of a mother Jacqueline who was concerned about the treatment of her son with SCD Joseph at school, and who used the guide to school policy to advocate on behalf of her son to the teachers at school. We hope that head teachers and school governors find the guide useful, and that it leads to continuing improvements in the way that young people with SCD are integrated into school.

Sickle Cell – Guides for schools in Nigeria

Hausa Translation

Sickle Cell in Schools:  Work in Nigeria

Sickle cell disease (SCD) is an inherited multi-system disorder that affects millions of people worldwide (Serjeant and Serjeant, 2001). As many as 400,000 children with SCD may be born globally each year (Dennis-Antwi et al, 2008). Of these, over 80% are born in Africa, mainly in West and Central Africa (Modell and Darlison, 2008). The World Health Organization states that “in Nigeria, by far the most populous country in the subregion, 24% of the population are carriers of the mutant gene and the prevalence of sickle-cell anaemia is about 20 per 1000 births. This means that in Nigeria alone, about 150 000 children are born annually with sickle-cell anaemia” (WHO: 2006¶3). This makes sickle cell disease an important, but relatively neglected public health issues in West and Central Africa. Grosse et al (2011) suggest that since SCD might be responsible for 5-16% of under-5 mortality in parts of sub-Saharan Africa that “greater attention to reducing mortality from SCD could help some African governments to achieve their targets with regard to Millennium Development Goal (MDG) number 4: to reduce their under-5 mortality rates by two-thirds during 1990-2015” (Grosse et al, 2011: S404).

In the UK work at DMU has examined the lack of care for young people with SCD at school (Dyson et al, 2010a, 2010b, 2011). This has resulted in the publication of a Guide to School Policy on Sickle Cell. The guide is aimed not primarily at classroom teachers (though they would be very welcome to read it) but at those with a broader responsibility. It is written with the following kinds of people in mind: the lead teacher for young people with a medical condition; heads of year; school nurses; heads of school nursing; local authority school advisors; school governors. In short it is aimed at those who can influence how schools respond to young people with sickle cell disorder (SCD). This guide has been adopted by the UK Department for Education and placed on their web-site. It has been adopted by several UK sickle cell NGOs. Using HEIF funds, and working with colleagues from the three major linguistic regions of Nigeria (Yoruba in SW, Igbo in SE and Hausa in the North) the guide has been adapted to the situation in Nigeria and translated into Yoruba, Hausa and Igbo. As more and more young people living with sickle cell disease in Nigeria grow up to become adults, it is hoped that this guide will help them to achieve the best they can at school in order to best prepare them for adult life.

 

References

Dennis-Antwi, J.A., Dyson, S.M. and Ohene-Frempong, K. (2008) Healthcare provision for sickle cell disease in Ghana: challenges for the African context. Diversity in Health and Social Care. 5 (4), 241-254.

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; and Evans, H (2011) Sickle cell, habitual dyspositions and fragile dispositions: young people with sickle cell at school Sociology of Health and Illness 33 (3): 465-483

Dyson, SM; Atkin, K; Culley, LA; Dyson, SE; Evans, H and Rowley, DT (2010) Disclosure and sickle cell disorder: a mixed methods study of the young person with sickle cell at school Social Science and Medicine 70 (12) 2036-2044.

Dyson, SM; Abuateya, H; Atkin, K; Culley, LA; Dyson, SE; and Rowley, DT (2010) Reported school experiences of young people living with sickle cell disorder in England British Educational Research Journal 36 (1): 125-142.

Grosse, SD; Odame, I; Atrash, H; Amendah, DD; Piel, FB and Williams, TN (2011) Sickle cell disease in Africa: a neglected cause of childhood mortality American Journal of Preventive Medicine 41(6) S4: 398-405.

Modell, B. and Darlison, M. (2008) Global epidemiology of haemoglobin disorders and derived service indicators. Bulletin of the World Health Organization. 86 (6), 417-496.

World Health Organization (2006) Sickle Cell Anaemia Report of the 59th World Health Assembly Available: http://apps.who.int/gb/ebwha/pdf_files/WHA59/A59_9-en.pdf [accessed 8th December 2011]

Guide for schools

The Guide to School Policy that is to be adapted and translated into Yoruba, Hausa and Igbo

Sickle Cell in Brazil

Brazil Artwork

During June 2012 Professor Simon Dyson and Dr Sue Dyson of the Unit for the Social Study of Sickle cell and Thalassaemia at De Montfort University were invited guest speakers at a Brazilian seminar on sickle cell in schools. The title of the seminar Saber Para Cuidar: Doenca Falciforme na Escola means Knowing for Caring:   Sickle Cell Anaemia at School. Here they talk about what they learned whilst in Brazil.

 Sickle Cell in Brazil

 

During the summer of 2012 we were fortunate to be invited to Brazil as guests of NUPAD, the newborn sickle cell screening programme for the state of the Minas Gerais. One of the first things we had to learn is to think of Brazil not as a country, but as an area the size of a whole continent. It is only one of 24 states that make up Brazil, but Minas Gerais on its own is about the size of France. Sickle cell patients who have to travel to the capital Belo Horizonte for their specialist care may have to travel 800 kilometres! However, transport is provided free for patients who have to do this, as is overnight accommodation. Brazil is also a country that takes it responsibilities to Africa very seriously. The Brazilian government is funding the first three years of Ghana’s newborn screening programme and whilst we were there we met laboratory technicians from the country of Benin who were on a six month placement being trained by Brazilian laboratory scientists in laboratory techniques for newborn sickle cell screening.

The organizers of the seminar had gathered an impressive range of over 200 stakeholders to their conference, including representatives of the ministries of health and education, and members of the state and national sickle cell support groups. What we learned from the seminar may be summarised as follows.

In both the UK and in Brazil children with sickle cell disease at school are becoming ill through lack of care by the school staff. There are good education materials for use in schools in the UK, and there are excellent educational materials developed by CEHMOB (Centre for Education and Support for Haemoglobinopathies) for schools in Minas Gerais.

The Minas Gerais Ministry of Education appeared to have appropriate policies on inclusion of children with medical conditions in schools and on children’s rights in schools. However, these aspirations for inclusion and children’s rights were not currently being realized for children with sickle cell disease in Brazil. Maria Zenó Soares, the head of DREMINAS, the Minas Gerais Sickle Cell Support group had interviewed around 100 young people with sickle cell disease from all over the state of Minas Gerais. Interestingly, their results almost exactly mirrored those found by our research here in the UK: students with sickle cell disease were not allowed to drink water in class, and were not allowed to use the toilet. Even those who were allowed water in class were then not permitted to use the toilet and so the young people stopped drinking their water. Teachers did not understand that young people with sickle cell disease might have to avoid strenuous exercise and many were mistakenly labelled as lazy by teachers who did not understand that their anaemia made them tired and made it difficult for them to concentrate. Some parents from the support groups felt that schools were falling so far short of these ideals that some delegates to the seminar described what is happening to children with sickle cell at school as “violence against the child”!

A Brazilian professor of education then made some interesting points. She described teachers in Minas Gerais as “anguished”. The teachers have numerous targets/league tables imposed upon them. They are not well paid and have to seek other jobs to supplement their income. In addition they have many children with many different types of chronic illnesses and diverse needs in their classes. Many of these points could and have been made about the position of teachers in England. The structural pressures on teachers in the UK and in Minas Gerais are therefore very similar.

This suggests that, in both the UK and in Minas Gerais there is a structural problem that goes beyond the individual qualities or personality of the teacher. This is why the Brazilians were keen to see young people living with sickle cell disease supported by strong policies and not just education materials.

If all schools permitted all children to drink water and go to the toilet when needed there would be no need to draw attention to children with sickle cell disease as different from their peers. If all children had the opportunity to attend extra lessons in the early evening to catch up what they had missed this would help all children.  The more that teachers can do the right thing for a child with sickle cell disease without having to specifically think about what they are doing every second of the day, the more likely it is the child with sickle cell will be supported. This again is why a policy is required as well as the excellent education materials that have been developed.

A guide to school policy has been produced by the Sickle Cell and Education project led by Professor Simon Dyson of De Montfort University, and we spoke about it at the Brazil seminar. The leaflet is aimed not directly at classroom teachers (though they would be very welcome to read it) but at those with a broader responsibility. It is written with the following kinds of people in mind: the lead teacher for young people with a medical condition; heads of year; school nurses; heads of school nursing; local authority school advisors; school governors. In short it is aimed at those who can influence how schools respond to young people with sickle cell disorder (SCD).

Any person or organization is welcome to circulate the guide, or to copy or place on a web-site as they wish. It is also available to download at www.sicklecelleducation.com . On the leaflet you may notice a particular symbol:

CCBYSA
Creative Commons CC BY-SA Licence

 

This is something called Creative Commons. It basically means that unlike usual copyright (which aims to restrict usage or make people pay to use it) this can be freely copied and used, subject to two conditions:

BY: the original author needs to be acknowledged: the leaflet is BY someone.

SA: Share Alike: if someone adapts and reuses the leaflet they may only do so on the undertaking that they share the resulting new resource back with the global community on the same terms.

 

Therefore if a particular local authority or a local sickle cell group or even an individual school wishes to use and adapt the leaflet, then they are free to do so provided they share their version back with the global sickle cell community. We are particularly pleased that the Brazilians now intend to adapt the guide to school policy developed here in the UK, translate it into Portuguese, and use it to develop policy in Minas Gerais. In this way we hope to improve the school experiences of young people living with sickle cell disease in both the UK and in Brazil.

Illustrations

Research by S Dyson

The Guide to School Policy that is to be adapted and translated into Portuguese.

Brazil Artwork
Winning artwork from a competition to depict sickle cell

Winning artwork in competition for young people living with sickle cell disease organized by the Centre for Education and Support for Haemoglobinopathies, Minas Gerais

 

Jesus Christ Statue
The famous Christ Statue in Rio de Janeiro
Maria Zeon Soares
Maria Zenó Soares, the Head of DREMINAS, the Minas Gerais Sickle Cell Support group

 

Sugar Loaf Mountain
Sugar Loaf Mountain, Rio de Janeiro

 

Jose Nelio Januario
José Nelio Januario – NUPAD, School of Medicine, Federal University of Minas Gerais speaks during the seminar.