Cystic Fibrosis

The Monash Health Cystic Fibrosis Service was established in 1993, initially caring only for children, with the expansion of an adult service in 1999. Monash Cystic Fibrosis now provides lifetime care for over 200 adults and children with cystic fibrosis.

Monash Children’s Cystic Fibrosis Multidisciplinary Team

The Monash Children’s Cystic Fibrosis multidisciplinary team is made up of six respiratory consultants (doctors), two Cystic Fibrosis nurse coordinators, two physiotherapists, two dietitians, one social worker, one clinical psychologist and a team of rotating administrative staff.

Doctors

At the Monash Children’s Hospital, we have a team of doctors who work together to give your child the best care. You will be assigned to one doctor to oversee your child’s care in the specialist consulting clinic. However you may see other doctors on the ward if admitted. Led by Associate Professor David Armstrong, the team of doctors includes:

• Associate Professor David Armstrong
• Professor Nick Freezer
• Dr Angela McCullagh
• Associate Professor Gillian Nixon​
• Associate Professor Robert Roseby
• Dr Marc Theilhaber

Nurse Coordinators

The Cystic Fibrosis coordinators will be your main point of contact during business hours. They are nurses that work with all Cystic Fibrosis patients to liaise with the rest of the team and ensure your child is receiving the best care. They can facilitate education, elective admissions and scripts and are the best first port of call for any Cystic Fibrosis related questions.

Our paediatric Cystic Fibrosis nurse coordinators are Sarah Sheedy and Kate Johnson (KJ).

Physiotherapists

Our physiotherapists can teach you a range of airway clearance techniques to help keep your child’s lungs healthy. They can also help with teaching correct inhaler and nebuliser techniques, assessing exercise tolerance, prescribing exercise programs and assessing and treating musculoskeletal, incontinence and sinus problems. Your child can see a physiotherapist during clinic appointments and once to twice daily during a stay in hospital.

Our Cystic Fibrosis team physiotherapists are Shelley Bowen and Lauren Tomkins.

During a hospital admission, your child may also be seen by other specialist paediatric physiotherapists who have been trained by the team to work with people with Cystic Fibrosis.

Dietitians

A team of dietitians will work with you and your child to manage your child’s nutrition. They will track your weight and will adjust meal plans, pancreatic enzymes and nutritional supplements accordingly. They will also provide education about specialist nutritional needs in CF such as:

• Healthy eating and diet quality in Cystic Fibrosis
• Achieving a high energy diet
• Salt and hydration
• Vitamins, minerals and probiotics
• Pancreatic enzyme replacement and managing malabsorption
• Preventing constipation
• Managing Cystic Fibrosis related diabetes
• Supplemental tube feeding

Our dietitians are Caitlin Miles and Hannah Vass.

Social Worker

You will meet a social worker who will get to know you and your child. They will be able to help you and your child overcome challenges you may face due to Cystic Fibrosis. These may include navigating the health care system, improving emotional and psychological wellbeing, linking into practical support networks as well as accessing financial assistance.

Our social worker is Naomi Erlich.

Clinical Psychologist

Clinical psychologists practice in the area of assessment and treatment of mental disorders such as anxiety and depression.

Our clinical psychologist is Dr Hawran Baldey. Hawran works one day per week. She works with both adults and children with Cystic Fibrosis and their families during admissions as well as time limited, short-term cognitive behaviour therapy for paediatric outpatients.

Hawran’s availability is limited, and as such, an important part of her role is also to support patients in finding mental health services and support in the community.

Nursing Staff

You will meet many nursing staff throughout your care within Monash Children’s. The nurses on the wards are there to help make you and your child’s time a little easier whilst in hospital. They will communicate with the doctors and allied health team while your child is an inpatient and attend to medications and observations.

Pharmacist

The pharmacist will help you understand the new medications that your child requires. They will be able to provide equipment such as syringes or cups to make medication administration easier. They will also help you navigate the assistance available from the government for the cost of medications and explain the Pharmaceutical Benefit Scheme (PBS).

Administrative staff

Our administrative team will usually answer the phone, book and reschedule your clinic appointments and manage general administrative tasks for the team.

You and your child

You and your child are the most valued member of your healthcare team. You know your child and his or her symptoms best and your opinions are highly valued. We will help to create family-centered treatment plans that will assist your family to achieve the best health outcomes for your child.

Your Cystic Fibrosis team would like to ensure that you receive the most efficient service from our centre as possible. Here are some guidelines on how our centre operates.

What the Cystic Fibrosis Outpatient Service can do for you

• Our team are available to give you advice. Our nurse coordinators can help you to make a decision if your child needs to be:

• • seen by your Cystic Fibrosis doctor
  • seen by your GP
  • come into the hospital for a test or x-ray
  • admitted to hospital

• Discuss your child’s care with your Cystic Fibrosis doctor, physiotherapist, dietitian or social worker and call you back with more advice
• Arrange for a script for medications to be sent to your preferred pharmacy. Please email script requests to the email below. They are completed on Wednesdays.

Outpatient Clinics

Review in clinic is the best way to address any issues that may arise. The Cystic Fibrosis clinic at Monash Children’s has appointments on Tuesday mornings at either 8:45am or 10:45am.

Please note that due to the COVID-19 pandemic, some out-patient appointments can be conducted via telehealth, rather than face to face. As the pandemic and the COVID vaccination program develops, we aim to provide the mix of telehealth and face to face consultations that best suit our CF families. Please contact our CF nurse coordinators if you wish to discuss further.

If your child needs an additional appointment outside of your routine clinic review, you can see your child’s Cystic Fibrosis doctor at Monash Lung and Sleep in Monash Medical Centre during one of their general respiratory clinics, however, there is no multidisciplinary team input for these appointments.

Please contact the Cystic Fibrosis nurse coordinators on 9594 2915 if you need to book an extra medical appointment for your child.

For further information on the Monash Children’s Cystic Fibrosis Outpatient Service, please download our information sheet here.

Your first visit to hospital can be a smoother experience if you plan in advance and know something about what to expect. Here is some helpful information and advice from our team:

• Download and read through our information sheet on ‘What to expect on your first admission to Monash Children’s Hospital‘ – this information has been written to help families think about what might happen during a hospital admission.
• Talk to your child truthfully about what they might experience before they come to hospital. If they are under school age, tell them just a few days before they come. Use simple words. If they are of school age, let them know a week or two in advance if you can. Let your kinder, childcare or school know why they will be away. Learn more about planning for your child’s stay at Monash Children’s Hospital on the Patients and Families page.

Monash Children’s Hospital at Home provides acute hospital care in the comfort of your own home or other suitable environment, as an alternative to staying in a hospital bed. Generally, the setting for care is your usual home or school environment, or an outpatient clinic room at Monash Children’s Hospital.

The care is provided through nursing and physiotherapy staff from the Monash Children’s at Home team and your usual Cystic Fibrosis doctor. Nursing staff and a physiotherapist can visit your child at home or in the community once a day. Your child will be reviewed by your Cystic Fibrosis doctor in clinic weekly or more often if required. Support is available by phone 24 hours a day.

Services offered by Monash Children’s Hospital at Home

People with Cystic Fibrosis will most often use Monash Children’s Hospital at Home for Intravenous (IV) antibiotics to treat chest infections. Other services provided by Monash Children’s Hospital at Home are:

• Administration of IV/subcutaneous medications
• Provision of medical supplies, and equipment for hire in the home
• Parental education, and support home visits after hospitalisation
• Carer education, assessment, and monitoring of in-home/school carers
• 24 hour on call phone support service for Hospital in the Home (HITH) patients
• Care of patients with stomas and feeding tubes
• Physiotherapy (intensive)
• Dietetic support (intensive)

Eligibility criteria

• Clinical stability
• Safe and appropriate home or community environment
• You must live within 50km of Monash Children’s Hospital
• You are required to have a risk assessment screen as part of the nursing/physiotherapy assessment prior to transfer to Monash Children’s Hospital at Home

Please discuss with your Cystic Fibrosis doctor if you are interested in using Monash Children’s Hospital at Home for all or part of your child’s admission. The earlier the team is informed, the sooner you will be able to access the service.

Physiotherapy at Monash Children’s Hospital at Home

Intensive physiotherapy support is available at home or in the community in certain circumstances when specific physiotherapy goals have been identified. The aims of a physiotherapy-only Monash Children’s Hospital at Home referral can be to avoid an inpatient admission or to provide additional support and or education following an inpatient admission.