Cystic Fibrosis and Complex Respiratory
Cystic fibrosis
Cystic fibrosis (CF) is an inherited condition that affects many organs in the body. The organs most affected are the lungs and gut. Although CF is a life-limiting condition, advances in the understanding of CF and our approaches to management have made life better for those with the condition. Almost all children with CF will live well into adult life.
Every child with CF is affected differently.
Other complex respiratory conditions
Many other complex respiratory conditions also affect children. These range from birth abnormalities, genetic conditions (other than CF), to surgery, infection and viruses.
Examples of complex respiratory conditions include primary cilliary dyskinesia and non-cystic fibrosis bronchietasis.
Who we care for
We have three teams across the state caring for children and their families affected by CF and other complex respiratory conditions. These teams are based at the Royal Hobart Hospital, Launceston General Hospital, and the North West Regional Hospital (Burnie). The Royal Children’s Hospital (Melbourne, Victoria) provides additional support to our local clinics.
What to expect at the clinic
It is recommended that children with CF (or other complex respiratory condition) visit the clinic every three months to see all members of the team. If your child is unwell, we can see them more often. Our team will work with you and your child until they reach adulthood, at which point they will be transferred to adult care.
Due to the complexity of care and the need to see many different health doctors, cystic fibrosis and complex respiratory clinics can take a lot of time (please allow up to 2.5 hours for each appointment).
Your CF/complex respiratory team usually begins with
| Child (you) and family or caregiver | You and your parents/caregivers are important members of our health care team, you look after yourself and your condition every day. You can tell us about your health and how your condition affects your everyday life. We will include you in decisions about your health. |
| Paediatrician | Your paediatrician is a key member of your health care team, they provide specialist medical care and look at your health holistically. Your paediatrician often takes the lead in providing a diagnosis or organizes referrals for tests or assessment with other health professionals. |
| Cystic fibrosis nurse |
The CF nurse is the primary contact person for questions and concerns. The nurse will help you to navigate the health care system and promote your child and family’s views about health. They will also teach you how to keep your child in a safe environment.
There is a CF nurse in Hobart, Launceston and Burnie. Hobart: (03) 6166 0000 Launceston: (03) 6777 5247 Burnie: (03) 6493 6300 |
| Nurse practitioner | A nurse practitioner is a registered nurse with the experience, expertise and authority to diagnose and treat people of all ages with a variety of acute or chronic health conditions. NPs have completed additional university study at master’s degree level and are the most senior and independent clinical nurses in our health care system. |
| Physiotherapist (respiratory) | The physiotherapist will teach you a variety of techniques to keep your child’s lungs healthy. These include airway clearance techniques, inhalation therapy, and exercises. They will provide you with an individualised physiotherapy program for your child and will also assess your child’s posture and development. |
| Dietitian | The dietitian will work with you to make sure your child gets the fuel they need to grow normally. These will teach you about the specialist nutritional needs of people with CF and/or complex respiratory conditions. |
| Social worker | The social worker will help your child and family live with CF/complex respiratory condition. They will provide parents with emotional support, information and advice. The social worker will also make sure that your child has goals that they are working towards. |
| Pharmacist | The pharmacist will help you understand your medication and keep your medication plan as simple, safe and helpful as possible. The pharmacist can also give support to doctors as required. |
| General practitioner (GP) |
Your child’s general practitioner (GP) is a key member of your healthcare team. Infants with CF need basic medical care as well as CF care. Your GP will take care of some of your child's health needs. The CF team will provide care specifically related to CF.
You will receive individual information on when you should contact your CF team and when to contact your GP. |
Depending on individual needs the following health professionals may also provide care
| Respiratory scientist | Respiratory scientists conduct lung function tests to help assess the health of your lungs, airways and respiratory muscles. If you need a lung function test your paediatrician or specialist doctor will discuss this with you. |
| Genetic counsellor | CF only The genetic counsellor can help you understand why your child has CF. They can assist you and other family members with carrier testing and will provide you with information about your options for future pregnancies. |
How to access the CF/complex respiratory clinic
A general practitioner referral is required. Your GP can submit the referral by following the directions on the Department of Health, Tasmania's outpatient clinics website.
Other supports >>
| Child Health and Parenting Service (CHaPS) |
CHaPS work in partnership with families of children 0-5 years of age and aim to enhance the health and wellbeing of all young children in Tasmania. They provide child health and parenting information, support, assessment and advice. Services provided include completion of age-related growth and developmental
assessments from 2 weeks to 4 years of age and assistance with breastfeeding/feeding issues, nutrition, sleep and settling, post-natal depression and wellbeing, child-parent communication and behaviour management. Services are provided from many community locations.
You can contact CHaPS directly on 1300 064 544 24/7 parenting information and support is available through an associated service, The Parent Line on 1300 808 178 |
| School | Through the Education Department, schools can access extra support or services to meet health and disability needs. It is important to discuss any individual requirements with school staff. |
(Strong Families Safe Kids) | Some families may require increased support through a community organisation due to the complexity of their situation or other vulnerabilities. |
Contact us >>
| South | North | North West |
|---|---|---|
Royal Hobart Hospital Phone: (03) 6166 0000 | Launceston General Hospital Phone: (03) 6777 5247 | North West Regional Hospital Phone: (03) 6493 6300 Mersey Community Hospital Phone: (03) 6478 5219 |
Disclaimer: this website contains general health information and does not replace the advice of a health professional.
Always contact ‘000’ in an emergency.
