In this section
Moving on from The Royal Children’s Hospital (RCH) can be a scary thought for you and your parents/carers, so including and supporting you throughout this process is important, as it ensures that you are successfully linked in with your adult health care service for ongoing monitoring and care of your CF as you get older.
Your transition to adult care journey should be individualised, gradual and planned, and address your health, psychosocial and educational/vocational needs. This is an important process that you and your parents/carers will be involved in, alongside your RCH CF team (and other RCH specialties) and the RCH Transition Support Service, in collaboration with either the Alfred Hospital or Monash Health CF teams.
As with the development of any new skill or change, this will take time and help you to identify strengths and learn new skills as you work towards greater ownership of your health and empower you to confidently navigate your continued care.
This brochure will give you a better understanding of what to expect in the adult healthcare setting and how you can actively prepare for the transfer.
There may be many differences between the CF services at the RCH and adult healthcare. Sometimes change can be challenging but these tips can help make your transition to a new hospital a better experience. This is an exciting stage of your life as you become an adult and take charge of your own health.
Here are some of the general differences you may come across, and tips on how you can be prepare for this change and be more independent with your health care.
Questions about your health will be directed to you. You will be expected to know important information about your condition and your current health status.
If someone else wishes to speak on your behalf, the adult team will check that is OK with you. However, decisions about your plan of care must be agreed with you directly.
On your first visit your knowledge of CF and medical history are refreshed with you.
Be confident and honest in your answers and don’t be afraid to ask if unsure about anything. It may be helpful to prepare your questions before your appointment and record this somewhere (e.g. your phone). You can always have someone with you or you can be seen on your own.
Before you transfer, chat to your parent/carer and healthcare team about trying an appointment on your own with your doctor without your parent/carer.
You may need to organise your own medications and know when you need new scripts, including ordering and payment. If you consent, we are happy for your partner, parents or significant other to contact us on your behalf.
You are welcome to send an email to request medications but allow a week for any script request made between clinic visits. You will need to arrange for someone to pick it up unless it is to be sent out.
Know what your medications are for and the ordering process. Most importantly, know who to contact and have their details recorded in your phone or somewhere handy.
Make sure you have your own Medicare card or a copy of it.
Some phone apps may help you to organise your medications and other aspects of your healthcare such as keeping track of appointments.
Allow plenty of time to get to your appointment and for the appointment itself.
If you live over 100km away from Melbourne, you may be able to access transport assistance through the Victorian Patient Travel Assistance Service (VPTAS). Your doctor/nurse will need to sign this form for you.
Know how to book and reschedule appointments and have these contact details with you.
Practise making your own appointments and communicating with your healthcare team while at RCH. Do keep your parent/carer in the loop as much as possible.
Appointments may be less frequent, unless you are unwell.
Adult teams may not follow you up if you miss an appointment and if you run out of medication it takes a week for a new script to be written.
You will be expected to contact adult teams to discuss any health concerns that you may have.
Keep track of your appointments and if you need to see the healthcare team before your scheduled appointment, call them as soon as possible.
Be organised and make sure that you can attend your appointments. Do plan in advance and reschedule if you can’t make an appointment as it may be more difficult to secure an appointment in the time frame that you would like.
The adult hospital may be new to you and you’re likely to be surrounded by much older people.
Visit the website to check the site map for parking and general directions. Call in at reception if you get lost on the way.
You can be shown around at your first clinic visit, if you wish.
Not everyone receives sedation for IV lines to be inserted but you can have a local anaesthetic for long lines in the radiology department. Let the team know if you need something to stop you being anxious going into a procedure. If you are going home with the Hospital in the Home Service, you may be trained yearly to administer your own IV medications using a portable pump (instead of a Baxter). However, you can request a Baxter if you prefer.
Physiotherapy (airway clearance) is your responsibility and should be done as many times per day as recommended by the CF physios. They will also work out a program for you to do some exercise daily.
Here are some of the more specific things that you may come across at The Alfred and Monash Health CF services:
Car park available at a cost. Flat rate concession available on presentation of accepted concession card. Timed (and free) on street parking available.
Car park limited, at a cost. If you have a healthcare card or pension card, there is a special flat rate for two or more hours (only on weekdays). Validate parking at reception desk prior to payment at car park office. Meter and limited free on street parking available.
Car park available at a cost. Timed on street parking available.
Required from GP or other specialist.
Initial referral from a GP for ongoing CF care. The referral from your Paediatric Specialist/s only last for three months.
Initial referral from a GP received at or prior to your first clinic visit at Monash CF is required.
Routine tests are usually all completed on the same day.
Lung function, sputum microbiology every visit. Other clinical tests as required. Screening tests as frequently as recommended by the CF Standards of Care or as clinically indicated.
You will usually be booked in to have a lung function test prior to seeing your Consultant at your clinic appointment. A sputum culture will be collected at each visit and screening tests as clinically indicated or according to CF Standards of Care.
Annual blood tests.
Usually seen by the same primary CF Consultant or CF Fellow.
Sometimes seen by different doctors if your primary CF Consultant is unavailable. You are usually allocated the consultant you met at the CF transfer clinic as your primary Consultant. You may see a specific Consultant if you are allocated to a clinic on the basis of Infection Prevention or you elect to come on a specific day.
You can request to see a specific doctor.
Promotes gradual patient independence with family involvement.
Promotes patient independence as tolerated by patient or significant other.
Holistic family approach to CF care.
Team includes doctors, CF nurse coordinators, physiotherapists, dietitians, psychologist, social worker.
Team includes doctors, CF nurse coordinators, physiotherapists, occupational therapist, dietitians, psychologist, social worker, clinic coordinator, HITH nurses, community CF specialised nurses.
Team includes doctors, CF nurse coordinators, physiotherapists, dietitians, social worker, HITH nurses, community CF specialised nurses.
Wednesday ‘drop in’, Thursday and Friday pm.
Alternate Tuesday am and clinics on two levels every 2nd pm, Wednesday, Thursday and telehealth clinic on a Friday am.
Monday am and pm, Thursday am.
Telehealth consults are available for regional patients.
Nurses will set up your physio and PEG feeds and will come to collect you for these sessions.
You are expected to agree to the treatment plan and be available to attend any treatments or procedures. You will also be asked to alert the CF team of any concerns promptly.
Your physio and PEG feeds may be optional and you are expected to attend to these independently without the direction and coordination of nursing staff.
Patients are asked to wear a mask in all ‘common areas’ of the hospital (not in the outpatient or inpatient rooms). All staff wear a plastic apron or gown for all patient interactions.
Outpatients are cohorted by time and sometimes in a different clinic area. Consideration of sputum micro-organisms is made when booking patients into clinics.
Inpatients will be accommodated according to the Alfred Health Infection Prevention Draft Guidelines.
Patients are cohorted according to a colour coding process which identifies the bug each person has. You will only be booked in for appts with other patients with the same colour. An airway sample is requested at each visit.
CF patients will be asked to wear a mask in all ‘common areas’ of the hospital (not in the outpatient/inpatient rooms). CF healthcare staff will wear gowns and gloves for all outpatient and inpatient interactions.
IV access in theatre — can be done awake, with sedation or GA.
PICC inserted in medical imaging with local anaesthetic but no sedation unless requested.
Daily nursing and physio if Melbourne metro. HITH outsourced for regional patients.
Antibiotics are self-administered. HITH may be outsourced depending on location. RDNS physio visits weekly if available.
Antibiotics can be self-administered, or you can access daily nursing if preferred. HITH may be outsourced depending on location. RDNS physio visits weekly.
HITH outsourced for regional patients.
Regional clinics in Albury, Geelong and Tasmania.
No regional clinics.
Combined adult/paeds clinic held in Sale twice a year.
Lung transplant unit on site.
Referral to MMC or RWH for IVF, Obstetrics and Gynaecology. Routine Women’s Health Clinic and Travel Clinics on site.
You will be provided with an Emergency Contact/Medical Alert Card.
Pregnancy and IVF clinic on site.
If at Monash, patients are referred to the Alfred lung transplant unit if required.
You and your parents/carers will be participating in transition clinics at the RCH with members of your CF team (Transition Leads) and the Transition Support Service team. This process will start when you are 15 years old and continue up until you transfer to adult healthcare. At these appointments, which are always scheduled alongside your other clinical appointments:
As part of this process, you will have the opportunity to have solo or part-solo appointments with your doctors in Annual Review clinics.
When it’s time to move to an adult healthcare service, you and your parents/carers will be invited to a special transfer clinic at the RCH with the CF team of your choice (either The Alfred or Monash), alongside your RCH team. At this clinic, you will meet your new care providers, learn more about how things work in this service and have the opportunity to ask questions.
Your RCH doctors and healthcare team will provide a comprehensive written summary of all your information to your new adult healthcare service. This information will be handed over and discussed in detail at the joint transfer clinic with your new care team.
You will also be provided with a USB with all your important medical information on the day of the transfer clinic.
You, your parents/carers and your RCH doctor will have a discussion about where your healthcare needs will be best catered for, before you transfer. This will also be discussed in your transition clinic appointments at the RCH.
Your transfer from the RCH will occur on the day of the joint transfer clinic with your chosen adult healthcare service and officially you will have transferred, when you have your first appointment at either The Alfred or Monash Health CF service. If you don’t receive an appointment within two months from the date of your transfer from the RCH, call your adult CF service and check your contact details to ensure that you have provided the current information to your new healthcare team. The RCH has an Access Policy which states that transfer should occur between the ages of 18 to 19 or earlier depending on your personal and/or educational/vocational circumstances. For most young people with CF, transfer occurs the year after you finish secondary school.
55 Commercial Road, Melbourne, 3004
Telephone: (03) 9076 3443 or 0418 596 938 (CF coordinators) to discuss health issues during business hours
Telephone: (03) 9076 6960 or email
firstname.lastname@example.org (CF Clinic Coordinator) for enquiries about appointments, medical letters, forms, documentation relating to work or study and scripts
246 Clayton Road, Clayton
Telephone: (03) 9594 2915 (CF coordinator) or (03) 9594 2900 (appointments)