Tasmanian Cystic Fibrosis Service

The Tasmanian Cystic Fibrosis Service (TCFS) is a team of health professionals who provide proactive management for individuals living with cystic fibrosis (CF). The TCFS is an interdisciplinary state-wide network and works to meet the health needs of those with CF by optimising well being and promoting self-management. Clinics are run in various locations state-wide. Members of the service include doctors, nurses, physiotherapists, social workers, dietitians and state-wide coordinators.  

 Cystic Fibrosis is a genetic illness which primarily affects the lungs, pancreas, liver, reproductive organs and sweat glands.  It affects each person differently. Symptoms can include poor weight gain, troublesome coughs, frequent chest infections, dehydration and abnormal bowel habits. Whilst CF is a life limiting condition, new advances in medicine have made life better for those affected and their families.

 As a teacher of a student with CF in your classroom, you will experience all the normal ‘ups and downs’ of teaching. These children should go to school and join in all normal activities but they will also face the daily challenges of living with cystic fibrosis.  More information about CF and school specific resources are available from your local clinic.

 

Cystic Fibrosis in Tasmania

In Tasmania there are approximately 115 people who have CF, 60 of whom are under 18 years of age.

 

1: GENERAL

 

How is CF treated?

Cystic Fibrosis management requires a multidisciplinary approach with health professionals working closely in partnership with families and the wider community.  Families participate in regular treatments at home including:-

·         Eating a diet high in fat and salt

·         Taking the appropriate medications and nutritional supplements

·         Practicing good infection control

·         Doing regular physiotherapy and exercise

 

Every person who has CF must have daily physiotherapy to keep their lungs healthy. This may take 10 – 20 minutes twice daily. Most people with CF will also take up to 40 nutritional supplement capsules (enzymes) each day to aid their digestion and food absorption, and oral antibiotics to prevent chest infections. They must also follow a high energy and high salt diet with added vitamins. 

Our multidisciplinary clinicians (doctor, nurse, coordinator, dietitian, physiotherapist and social worker) review individuals with CF every three months. We assess their medications, diet, chest physiotherapy and psychosocial needs.  This may involve absences from school. Clinic appointments are required at least 4 times per year; each appointment may take 2 – 3 hours. If there is a marked decrease in lung function and an increase in symptoms, an admission to hospital may be required. This is often for a period of 10 – 14 days and would include intravenous antibiotics, intensive chest physiotherapy, and daily review by the physiotherapist, dietitian, and medical team.

 

 2: STUDENT’S NEEDS IN SCHOOL

Below is a summary of useful information and helpful hints for teachers and schools:

 

  • Most students with CF dislike attention being drawn to their condition. The condition affects each individual differently. To help them cope with a lifestyle that sets him/her apart at times, it may be helpful for other students to have some understanding of CF. There are resources  available from the CF clinics that are designed to increase school staff’s knowledge and understanding in the area of CF.
  • It is normal for an individual with CF to cough. Generally students should be allowed to cough without comment. If the student has a prolonged coughing episode, please excuse him/her for a drink.
  • Students with CF need to take fluids to prevent dehydration.
  • With younger children, the likelihood of toileting accidents is increased. Children with CF should be able to go to the toilet on request and not be made to wait.
  • Most individuals with CF are required to take a varying number of enzymes with most meals and snacks (see nutrition section below for more information). Please allow easy access to them at all times.

 Pancreatic enzymes are not considered to be medications and may be carried by a student with cystic fibrosis.   See Tasmanian Education Department Policy:- https://www.education.tas.gov.au/documentcentre/Documents/Administration-of-Medication-Procedures.pdf    

 

PLEASE NOTE: if another student accidentally takes one of these enzymes it will cause no harm.

 

  • Separating an individual with CF from their classmates and friends to go to the school office to have their enzymes makes them feel left out. They often prefer missing meals rather than doing this. For these reasons it is not appropriate to make individuals keeps their enzymes in the school office. 
  • Exercise should be encouraged to assist with their respiratory and bone health.   Like all other students, those with CF exercise to increase both their cardiovascular and respiratory fitness. Please encourage your student with CF, even if they have a mild cough, to participate in daily physical education.
  • As with all student’s and staff, hand hygiene is an important factor in reducing the spread of germs and should be encouraged. Coughing into elbows rather than the hand is preferred.

 

Academic Performance

Most children with CF are well and have minimal restriction to their school life.

Absenteeism due to clinic appointments and hospital admission may mean a lack of continuity in schooling. Liaison with hospital teachers and the CF clinic staff can help to ensure school standards are maintained when the child is well enough.

Students should be encouraged to be responsible for themselves whenever possible.

 

3: NUTRITION

Individuals with CF require a diet high in energy, fat, and salt. Furthermore, 97% of the CF population require enzymes (a naturally occurring substance in the body) to be able to properly digest their food. This type of diet can pose challenges in the school environment especially as teachers often try to promote healthy eating principles to other students.

 Enzymes (Pancreatic Enzyme Replacement Therapy)

  • Enzymes are dosed according to how much fat is in the food. CF students and their families receive education about dosing enzymes to the amount of fat in the food.
  • Enzymes are taken with ALL foods and fluids, with the exception of simple sugar foods e.g. cordial, soft drink, juice, raw salad vegetables, fruit, sugar confectionary.

Fat

  • Individuals with CF have higher energy requirements (120-150%) compared with those  without CF. 
  • To meet these requirements CF dietitians recommend individuals eat high fat foods. So it is likely that the lunch boxes for CF students will have a lot more ‘extra foods’ (foods that might be otherwise considered unhealthy). 

 Salt

  • All individuals with CF are at risk of increased risk of sweat losses of salt and ultimately dehydration.
  • To prevent dehydration, they need to replace both salt and fluid.
  • The easiest and best way for individuals with CF to get extra salt is by adding it to foods and eating foods that are naturally high in salt.

 

 

Lunch Boxes example for individuals with CF

Lunch box example 1

Small packet of chips (salted) 

Muesli bar

Fruit

Peanut Butter wholemeal sandwich

Biscuits

Glass of milk

Lunch box example 2

Biscuits and cheese

Ham and cheese wholemeal sandwich

Fruit

Chocolate (fun size)

Glass of milk

 

Please advise your student with CF if your school is “nut free”.

 

4: INFECTION CONTROL

 

The Education Department infection control guidelines cover the needs of students with cystic fibrosis. We recommend staff view these:

 

http://www.education.tas.gov.au/school/health/students/infection-prevention-control/Infection.doc

 

We offer some further recommendations:-

  • People with CF may attend the same school as one another
  • It is preferable for people with CF to attend different classrooms.
  • Non-classroom contact should be minimised eg indoor gym session.
  • Personal hygiene measures should be followed at all times.
  • Involvement in school activities with non-CF people is encouraged.
  • Increased bacteria are found in hotter water and in still water. We discourage fish tanks and vases in classrooms where there is a CF student present. CF students can still participate in these activities – we ask that you take your students to another area outside of the classroom.

 

School swimming activities are recommended with the following suggestions:-

  • Avoid the use of paddling pools and still water; and
  • Check the hygiene maintenance guidelines used by the pool operator. A well maintained and filtered pool is recommended for use by students with CF.

 

 5: CONTACT DETAILS AND MORE INFORMATION       

 

Tasmanian Cystic Fibrosis Service

 

There are 3 Paediatric CF nurses across the state:

 

Royal Hobart Hospital                      6166 8475   

Launceston General Hospital         6777 6818   

North West Regional Hospital        6493 6313   

 

You can also contact one of our CF coordinators:

 

Paediatrics state-wide                         6166 8475   

Adults state-wide/ Adult CF nurse     6166 7556