About Cystic Fibrosis
Cystic fibrosis (CF) is an inherited genetic condition that causes thick, sticky mucus to build up in the lungs, digestive system and other organs.
CF is caused by a faulty gene that affects the movement of salt and water in and out of cells. It is a lifelong condition that requires daily treatment. However, the outlook for children with CF has improved dramatically in recent years. The introduction of CFTR modulator therapies, including Kaftrio (elexacaftor/tezacaftor/ivacaftor), which became available on the NHS from 2020, has transformed treatment for many people with CF. These medicines address the underlying cause of the condition rather than just managing symptoms.
With appropriate support, most pupils with CF can attend school regularly and participate fully. An Individual Healthcare Plan should be developed with the family and the child's CF team.
How CF May Affect a Pupil in School
- Persistent cough and breathlessness, particularly during or after physical activity
- Need for daily physiotherapy (airway clearance), which may sometimes need to take place during the school day
- Need to take enzyme supplements (such as Creon) before eating to aid digestion
- Higher calorie requirements; pupils may need to eat more frequently and have larger portions
- Frequent absences due to hospital appointments, courses of intravenous antibiotics or periods of illness
- Fatigue, particularly during or after chest infections
- Emotional impact of managing a chronic condition, including anxiety about health
Classroom and School Strategies
Daily Management
- Allow the pupil to take enzyme supplements before meals and snacks without drawing attention
- Provide a private, clean space for physiotherapy if needed during school hours
- Ensure access to water at all times
- Allow frequent toilet access without question
- Be discreet about coughing; it is a necessary part of clearing the airways
- Allow the pupil to eat additional snacks during lessons if needed
- Store and administer medication in line with the school's medicines policy and the pupil's IHP
Managing Absences
- Develop a plan for catching up on missed work during hospital admissions
- Provide work packs or online access to lessons when the pupil is away
- Keep the pupil connected with peers during absences (e.g. class messages, video calls where appropriate)
- Be flexible with deadlines and assessments following periods of absence
- Liaise with hospital school services where available
Physical Education
- Encourage participation in PE; exercise is beneficial for lung health in CF
- Allow the pupil to manage their own pace and take breaks when needed
- Ensure access to water during and after exercise
- Be aware that some pupils may cough more during exercise; this is normal
- Follow advice from the CF team regarding any activity restrictions
Emotional and Social Support
- Be sensitive to the emotional burden of living with a chronic condition
- Support the pupil's social inclusion, especially after absences
- Provide access to pastoral support or counselling if needed
- Maintain age-appropriate expectations and high aspirations
- Involve the pupil in planning their own support where appropriate
Further Information and Resources
Cystic Fibrosis Trust provides comprehensive schools guidance, factsheets and support.
NHS information on cystic fibrosis offers accessible medical information.