Do you have to declare your child’s condition to their school?
No. However, if your child has a disability (find out why CF is legally defined as a disability here), they may have no effective legal protection against discrimination unless their school knows or could reasonably have been expected to know of their disability. Provided a school has been informed of a child’s disability, they are expected to work collaboratively with parents and clinicians (for example, from the child’s specialist CF centre) to ensure that the child's needs are properly understood and catered for at school.
Is your child allowed to be excluded from activities because of their condition?
This depends. In general terms, schools are expected to take steps to ensure that disabled pupils can participate fully in the activities of the school. This means, amongst other things, that schools are required to make reasonable adjustments (including the provision of appropriate support and training to teachers) in order to facilitate a disabled child's participation. The exclusion of a child from participating in specific activities, including school trips, would normally need to be justified by clinical evidence.
What facilities or support does your child’s school have an obligation to provide?
Again, as with participation in activities, this depends. There should be an individual healthcare plan (you can download one here) for any pupil with a medical condition like CF, which identifies what steps need to be taken to support that child at the school. A disabled child's needs should be considered when the school plans activities such as school trips so that any additional support that might be necessary for the child (or the teachers) can be identified in a timely fashion and provided – unless it is disproportionate or unreasonable to do so.
Can a child be refused admission to a school because they have cystic fibrosis?
In almost all cases, the answer would be no, as it would be direct and unlawful discrimination. However, schools are also under a statutory obligation to ensure that the health of their pupils is not put at unnecessary risk. By way of example, this means that (due to the risk of cross-infection) a small school with only a single class in each year might well be justified in refusing admission to a child with CF if there is already a child with the condition in the same year. However, larger schools with multiple classes in each year might be hard-pressed to show that the risk of cross-infection could not be managed through appropriate planning and controls.
How do I find out how a school supports children with medical conditions?
In England, every school should have a policy for supporting pupils with medical conditions like cystic fibrosis. The Trust would encourage all parents and carers to ask to see a copy of that policy so that they know what is in it. If you have any concerns about a school's policy, you can cross-check the policy against the statutory guidance issued by the Department of Education which can be found here.
You can also view similar guidance for Wales, Scotland and Northern Ireland.
For more information about school and CF, explore our pre-school and primary school, and secondary school resources. We also have a pack for those leaving school. If you have faced discrimination or would like to seek further advice about your rights, please contact our helpline as soon as possible.