Although every child with CF is unique, and they will all respond to their illness, treatments and experiences in different ways, there are some symptoms that can be particularly relevant at school.
A persistent cough, particularly during infection, is not a risk to other students but can be alarming for the child with CF, particularly if it causes them to cough up mucus or vomit.
There are some common symptoms that may be particularly relevant at school. A noticeable feature may be a persistent cough, which can be worse during periods of infection. Although this is not infectious, it can be embarrassing in front of other children, particularly because a severe coughing attack can lead to coughing up mucus or vomiting.
People with CF should not meet in person because of the risk of cross-infection (passing on potentially harmful bugs), which is an important consideration if there is more than one pupil with CF at the school, or if they are receiving a visitor with cystic fibrosis.
If a child with CF is taking part in a school trip it may be necessary to consider how to manage their treatment, and to assess the cross-infection risk.
Children with CF usually require daily physiotherapy, and might need parents or carers to come into the school to help them. Nebuliser treatment may also be necessary.
The number of physiotherapy sessions needed each day depends on the child's health, and the length will vary from 15 minutes to an hour.
Cystic fibrosis can stop the pancreas working properly, so special enzyme supplements may need to be taken with all meals and snacks to help digest food. These are available in capsule form and are often taken in large quantities.
Children with CF need to eat a very high calorie lunch that is high in protein, to compensate for the amount lost in stools due to the lack of pancreatic enzymes, and to help them fight chest infections.
This may be a sensitive issue in schools that have adopted a healthy eating programme, as children with CF have different dietary requirements.
It is important to make sure that children with CF adhere to their food and medication requirements, even when they do not want to.
Children with CF are as academically able as their peers, and teachers should expect similar standards.
Hospitalisation or chest infections can result in prolonged absence from school however, so extra help may be needed to catch up with the rest of the class.
Examination boards make certain allowances for pupils with cystic fibrosis.
Some older children can use portable IV antibiotic equipment, which helps them attend lessons more regularly.
Physical exercise is very good for children with CF, and they should join in games and PE lessons.
Illness can result in loss of energy, which should be taken into consideration for both academic and sports activities.
Although children with CF are as academically able as their peers, some may have special educational needs.
Cystic fibrosis can prevent or hinder a child from using certain educational facilities.
The joint council for the GCSE (standing agreement number four) advises that, under certain circumstances and safeguards, a grade can be awarded if a candidate is absent from an exam for legitimate reasons, such as illness.
Additional time can be allowed (normally up to 25%) for all types of examination.
If necessary a candidate can be given treatment during a supervised break. Alternatively, subject to approval from the exam board, arrangements can be made for them to take exams outside their own exam centre (ie at home or in hospital).
Disabled candidates can be given additional time to complete course work, or given a reduced amount, again subject to the approval of the examining board.
For a pupil to be considered for concessions at GCSE level, they must have documented their special needs over a number of years. A child with CF should therefore be registered on the school’s special needs register as soon as possible.
It is a good idea to keep a record of any absences from school, so it can be presented at the request of the exam board.
Social and psychological aspects
Children with CF may be teased or picked on at school because they can be underweight and small for their age, and might have a persistent cough.
Taking tablets and capsules with meals and eating a different diet from classmates can also be embarrassing.
Physiotherapy is time consuming, sometimes at the expense of a child’s social life, although children with cystic fibrosis often find supportive friends who help with care and physiotherapy.
During teenage years there is a chance that children may neglect their physiotherapy and diet.
Some people with CF experience delayed onset of puberty, which may cause anxiety or insecurity.
Teenagers may need sympathetic treatment and counselling to help them deal with some of these issues.
Cystic fibrosis requires a level of special involvement from teachers, which could include consultations with parents or even practical help.
Read our factsheet: School and cystic fibrosis.
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