Category Archives: Sickle Cell Anaemia

Sickle Cell Anaemia Open Education News Update

A very happy and joyous new year to all our readers.

I might have been quiet (well, busy and overworked) recently, but open education activity and research activity in the area of sickle cell anaemia is a busy as ever at De Montfort University. Professor Simon Dyson has three PhD students now looking at social aspects of living with sickle cell, and as always is busy influencing decision makers and policy writers at National level to raise awareness of this and other haemoglobinopathies that have such a huge impact on people’s lives.

On Simon’s behalf, I attended the All Party Parliamentary group on Sickle Cell at the House of Commons in December 2012 which was chaired by Lord Smith of Clifton who was absolutely lovely, and what a fantastic group of people from charities, government and education gathered around the table to push forward the need for improved healthcare, awareness and education.

London

London trip, December 2012.

Boosting sickle cell education in 2013

Why? Well surprisingly, although sickle cell anaemia and other haemoglobin disorders like thalassaemia are quite common, there is still a lack of awareness and information to support people through school and in the work place. Tying in with this is the big “genetic” boom recently, with more health and medical advances centering round the manipulation of our genes and genome, that it is recognised there too is an urgent need to improve genetic education through schools, universities and within the NHS workforce. Therefore the TWO go hand in hand – sickle cell can be used to teach people about genetic concepts because it is the most common SINGLE gene disorder there is, so is a useful topic to explain genetic terms and how genes work.

Open education to the rescue!

So with the parliamentary group seeking to advance education and sickle awareness in schools, Professor Dyson and myself are championing the cause to make these resources OPEN!!! This means anything produced will be licensed under Creative Commons to make sure everyone who needs the learning resources is free to do so, and not restricted by copyright ownership. We already have shared the SCOOTER website (this site) with the group because we already have some very good genetics resources already available, as do other open education projects in the UK such as the GENIE project at the University of Leicester.

Here are our animations on genetics for example,
http://www.sicklecellanaemia.org/teaching-resources/resources/scooter66-71/scooter66.html

Link to the Leicester GENIE project,
http://www2.le.ac.uk/departments/genetics/genie

What next for SCOOTER?

SCOOTER stands for “Sickle cell open – online topics and educational resources” and was funded by the JISC Open Educational Resource programme in 2011. This pulled together all our existing teaching materials on social and scientific aspects of sickle cell disease, and if  you browse this site you’ll see videos and materials from external speakers including Professor Elizabeth Anionwu who was the first nurse counsellor in the UK and tells a fascinating story. Other resources include diagnostic materials and even an entire out-of-publication text book.

SCOOTER animations and games are being developed in collaboration with universities in Nigeria, and Professor Dyson’s “guide for schools” is being translated into a multitude of languages. There are new hospital teaching resources from the Leicester Royal Infirmary also in the pipeline which will be useful for science students and trainee biomedical scientists needing to learn about sickle cell disease.

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Sickle Cell Team Brazil Visit

During June 2012 Professor Simon Dyson and Dr Sue Dyson from the Sickle Cell Anaemia research team 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.

Brazil Trip Images

Winner of an art competition (left) and the Saber Para Cuidar logo (right).

As a result of the trip to Brazil, several of our open educational resources are now being translated into Spanish and Portuguese. This includes the guide for schools which raises awareness of the factors likely to be experienced by a child at school that are likely to precipitate a painful sickle cell crisis. Many of these are common school activities such as exercise, sudden changes in temperature (such as going outside during play time and breaks), dehydration (that may occur if a child isn’t given access to water) and stress (that may arise should a child not be permitted to take regular toilet breaks).

The guide provides a template for an individual child’s health plan which includes a checklist of preventive measures and medication.

This guide is produced as an OPEN EDUCATIONAL RESOURCE. This means that it is open licensed by Creative Commons and is freely available for any individual / school / policy maker to reuse, translate and adapt for their own circumstance.

Sickle cell anaemia is a collective term for a series of inherited blood disorders and is one of the most common genetic conditions around the world. It is a disorder of the haemoglobin molecule found in red blood cells. Another inherited condition is beta-thalassaemia major where there is a near absence of haemoglobin the the cells, and the patient requires regular blood transfusions for life. Understanding the social consequences for people, for example within schools and the workplace, is the aim of the sickle cell team at De Montfort, known as the TASC Unit (Thalassaemia and Sickle Cell, http://www.tascunit.com/).

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Sickle Cell Team Visit Brazil

Introduction to the Trip

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.

The famous Christ Statue in Rio de Janeiro and Saber Para Cuidar logo.
(CC BY SA).

Experience of Sickle Cell Anaemia Patients and Families

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 organisers 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.

View of Educational Support by Patients and Families

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 anaemia 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.

Open Educational Resource on School Policy is Available to Share!

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).

Sickle Cell School Guide

How YOU Can Use the Guide!

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 on this website: http://www.sicklecellanaemia.org/teaching-resources/resources/scooter24-29/scooter25.html. On the leaflet you may notice a particular symbol:

Creative Commons
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This is something called a Creative Commons license. It basically means that unlike usual copyright (which aims to restrict usage or make people pay to use it) the guide can be freely copied and used, subject to two conditions:
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BY: the original author needs to be acknowledged: the leaflet is BY someone. (Acknowledge Professor Simon Dyson, the SCOOTER Project).
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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. (Share back by emailing us to deposit on this website or another repository).
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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 anaemia in both the UK and in Brazil.



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