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Fighting for Orkambi

Please follow the link below and sign the petition to get children with CF the life-saving drug Orkambi - https://petition.parliament.uk/petitions/231602

Attendance in Schools

We are currently looking at how families with a child with CF are affected by the attendance policy at their child’s school.

We have prepared the following statement which we would like to campaign for, please do let us know your opinions on this and your own and experiences by phone or email.

It is common for families with a child with Cystic Fibrosis, one of the world’s most common life-threatening inherited diseases, to face difficulties with their school over attendance records. CF affects internal organs especially the lungs and digestive system which become clogged with sticky mucus making it hard to breathe and digest food. A strict regime of medication (taking as many as 50 tablets a day) is essential as well as daily intensive physiotherapy both before and after school which can take many hours to complete. For people with CF going into hospital for a few weeks every so often is the norm. Sometimes extreme medical intervention, such as a lung transplant, is necessary.

Hospital appointments cannot be regularly made out of school hours and hospitalisations and ill health due to CF will occur and cannot be avoided and school attendance will be affected. Currently all absences from school will affect a schools OFSTED rating. There is no ability for a child who has a hospital appointment or a hospital admission to have their absence recorded in a way which does not negatively impact on the school’s overall absence record. As a result children with conditions like cystic fibrosis, where regular hospital appointments and frequent and unpredictable admissions are the norm, pose a threat to their school’s OFSTED rating and are therefore undesirable students.

Families bringing up children with serious health conditions like cystic fibrosis are already under huge amounts of pressure. To exacerbate this stress by having regulations in place that result in; schools bullying parents into taking sick children into register, schools discouraging parents of children with long term health conditions from applying to their school and academically capable students rejected on attendance records alone, is unacceptable.

To address this hospital visits and hospital stays (including hospital care administered at home, such as home IV’s) need to have their own code on the formal register. By enabling schools to discount these hospital absences from their total will avoid the current situation where head teachers are pushed by Governors, local councils and other bodies, into pressuring families with sick children into attending school (or not registering/being accepted at that school in the first place) because the school’s OFSTED rating will suffer.

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