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Information for children, teenagers and families

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Schools

There is a factsheet on the CF Trust webpage that outlines the important information about school and CF. It starts with an overview of what CF is, which is a very useful starting point for teachers who may not have heard of CF before. Click here: School and CF

There will be a nursery and preschool leaflet available soon written by staff at the John Radcliffe.

The main points to include for discussion with the school are:

• Children should be treated like their peers and encouraged to be involved with what everyone else is doing.
• Exercise should be actively encouraged.
• Children may cough more than their peers. This should be noted, and feedback given to the child or his/her parents, but not a reason to be excluded from exercise.
• Unless they are told, teachers will be unaware that children are asked to perform physiotherapy twice a day, and that they may additionally require inhalers, and nebulised treatment. It is worth telling teachers this because unless you do so, they will not understand how long this treatment takes, and what it is for.
• Some children may have some urgency associated with going to the toilet – associated with either not matching Creon adequately, or perhaps due to constipation. It is helpful for children to know that they can go to use the bathroom quietly and without a fuss if they need to.
• Schools often promote 'healthy eating' which can be at odds with the advice we give about high fat high eneergy diets essential for childen with CF. It is a good idea to discuss this with teachers before it becomes a problem.
• In secondary school CF is sometimes used as an example of a genetic disease. If teachers are unaware that a child in the class has CF they may treat this topic with insufficient sensitivity.
• If 2 children with CF attend the same school, they should be segregated from each other as much as possible. Schools need to make reasonable steps to accomodate this requirement.

School visit

If you would like one of the CF nurses to visit your child’s school, please let your CF nurse know and they will organise a visit. You are more than welcome to attend this visit too, as your contribution is very specifically about your child, whom you know best.