The significance of education is a relevant matter in ones life.  Some people say it is crucial to attainment in the future and it opens the door to a lot of chances in life.  So, when a section of society is compromised from being able to go to school because of sickle cell, the government should look into what can be done to help the pupils.
Most people who have sickle cell have not had a positive experience with the education system and schooling.  This can be attributed to a lot of factors, namely missing class because of crises being a major one, lack of understanding of sickle cell by the teacher/s and the school, bullying, low self-esteem and inability to do certain things in school, etc.
These factors and more do affect the education of those living with sickle cell. About a decade ago, experts in the area of sickle cell came together to write about sickle cell and education; to help the education system in the UK on how to implement positive changes and help students who have sickle cell achieve their highest potential.  However, I believe that the research can be a blueprint that other countries can adopt. The research was titled, Sickle Cell: School, health and safety. Below are the excerpts from the study:
This was produced based on research examining the experiences of young people with sickle cell disorder in schools in England.  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 1974 Health & Safety at Work Act places a duty upon education employers to ensure the health and safety of pupils. Part of this responsibility is to have a health and safety policy that includes supporting pupils with medical conditions. Pupils with sickle cell disorder under this legislation and guidance.
Preventive measures to support people with SCD
Pain: Sickle cell disease is an unpredictable condition, variable over time and between different people. This creates uncertainty for the young person. The painful crises can come on quite suddenly. Pain can make a person grumpy, unresponsive, stressed, depressed and uncooperative. The pain of a sickle cell crisis can be mild, moderate or severe. Since pain is such a common experience for people with SCD it is vital that the school develops a policy for supporting children when in pain. The care plan needs to be worked out individually for each child, with input from teacher, school nurse, sickle cell nurse specialist, child and parents. It is very important that the policy includes instructions about giving painkillers (including who is responsible for administration, which pain killers and how to decide which one to give).
School absences: If schools/colleges do not have strong supportive frameworks on sickle cell disorder to reduce school absences, then studies have suggested that a pupil with SCD could miss weeks of schooling a year, most often in short absences of 2-3 days at a time. Most pupils with SCD do not feel supported by schools in catching up with these absences. A minority have absences at or beyond levels defined by government as persistently absent. It is important such pupils are not mislabeled by education welfare officers as truants and their parents pressured to account for themselves if such absences are the result of serious episodes of illness.
One school has a policy of regular twilight catch-up sessions after school. This learning centre is staffed on a rotational basis so that pupils who have missed a lesson for any reason can be helped to catch up in the presence of teachers. This not only helps the young person with sickle cell disorder catch up, but it does so without drawing attention to them as different from other pupils.
Water: Young people with SCD need to be well hydrated to reduce the likelihood of becoming ill. Have a ready supply of fresh drinking water available. Do not restrict drinking water in class. Ensure water fountains are working and kept in the highest state of cleanliness so young people with SCD are not put off using them and risk of infection is kept to a minimum.
Using the toilet: People with SCD cannot concentrate readily. They produce large quantities of dilute urine and need to go to the toilet more often. Do not restrict toilet breaks for children.  One school has instituted a system of issuing the young person with a laminated card stating that the young person has the right to excuse themselves during lesson in order to go to the toilet.
Tiredness: The person with SCD may experience severe anaemia. This may mean they feel tired, lethargic and unable to concentrate. They may feel tired to the point where they feel they need to sleep. Climbing several flights of stairs several times per day to get to and from the classroom is physically demanding for some young people with SCD.  In some cases issuing a personal lift pass may be appropriate.
Physical exercise: A warrior is to avoid hard, physical exercise involving strenuous exertion that could precipitate a sickle cell crisis but can be encouraged to do moderate exercise.  Teachers need to listen to the young person who will come to know their own safe limits of physical activity.  Do not refuse requests if a young person asks to be excused or stop activity because of tiredness or pain. For children with SCD, cold, wet weather, or exposure of the skin to cooling wind may all be a trigger to episodes of illness. Obligatory sports and gym sessions outdoors in cold and wet weather is a potent stimulant to crisis for some children. It is important to listen to the child and parent, and follow advice from their specialist medical teams about this.
The concluding part of this column will be published next week, when I will give you the reference to the study, in case you wish to read it in full.
If you would like to get in touch with me about this article or about sickle cell, do get in touch: [email protected] and do visit my blog:   My book on sickle cell How To Live With Sickle Cell is available for purchase on OkadaBooks and Amazon.
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