Moving clinics locally, interstate, or overseas?
Unless you have moved around a lot, you have probably spent your entire life visiting the same CF clinic. You’ve become comfortable with your clinic team, the processes and the hospital environment. Moving clinics has been identified as a challenging change in the life of a person with CF and understandably so. You know the clinic team, the environment, where the good food is, where to park and where to find things. Then you move to a new environment and start all over again. Typically, this change may coincide as you finish high school, work out your new pathway, possibly move away from home and start working. These are all significant changes, even without a new clinic to adapt to.
However, not all clinic changes occur around this time. People often move areas, move interstate and overseas. So we’ve put together information gathered from hospitals, from first-hand experiences, social workers and psychologists to make your change easier.
Here’s a few handy links and tips for getting prepared when you move from paediatric to adult care.
*Remember you will need a referral for each specialist you see, eg. Diabetes (Endocrinologist) and gut doctor (Gastroenterologist). Make sure your referral is indefinite because typically a specialist referral lasts 3 months and GP referrals last 12 months.
What happens when I move to adult care?
Transition from paediatric to adult care is a big change. Some people love it and others find it hard. Whatever you feel, it is still a huge shift from what you know and have come to expect. Below is a breakdown of typical steps taken in the transition process. This may vary depending on which clinic and state you are in.
STEP 1: Your team will begin discussing transition around your sixteenth birthday
STEP 2: Highly Recommended *Visit the new clinic and meet the team
STEP 3: A formal handover will occur between clinics – briefing and summary document
STEP 4: Some clinics will hold collaborative clinics until you are settled (at both)
STEP 5: You will transition across at an agreed date
STEP 6: You are now in charge of your health with the support of your family and carers
*Occasionally you will meet different team members to the ones who become your primary team.
Read stories from our community
Sam from NSW says,
“The hardest part of transitioning was trying to remember the information that would be most beneficial to the CF team for them to help with my health.
I found that things like learning where to go and where to park were also difficult. I did get used to it and started writing down notes to remember on my phone such as what medicines I needed.
I wish I’d known before I made the transition from paediatric to adult care that it would be up to me entirely to decide what my team is aware of, what’s going on in my private life, and whether or not I want them involved in the non-health-related parts of it.
Aspects I feel are positive about moving to adult care include more freedom. Simply, if I’m sick, I tell them, they throw antibiotics at me and then I’m usually better within a month. It’s also more effective to have me tell them what I need, rather than the other way around.”
April from NSW says,
“I was raised to be very independent from a young age. I was taking myself all the way down to Sydney from the Central Coast for my appointments from the age of 14. Taking on more independence and responsibilities such as going to the GP by yourself, organising your own medications, taking yourself to the occasional appointment was a great way to help me mentally prepare. Being independent earlier, helped me adjust.
The hardest for me was actually adapting to the busyness of being an adult and having to organise my ‘uni life’ and ‘friendship life’. I found it easier asking a friend to come along to a few appointments so that they could help me adapt and take the time to look after myself.
Being organised and planning work and university around my appointments worked well, rather than the other way round.
One thing I had to be prepared for was the shift in ‘care’. I went from doing procedures under sedation and emula cream to just having to take it all with no cushion. That was a big adjustment for me, personally as I’ve always HATED cannulas.”
Parent experiencesOlivia's story
”I felt like I was leaving my family. But in time, I realised the new clinic team were just as passionate about caring for my child as the paediatric team. They just have a different approach. Learn to embrace the change.parent of CF child
What happens if I move interstate?
Moving interstate is a common occurrence within Australia and with this, typically comes a new clinic. If you are wondering how this works, then let us explain.
STEP 1: Begin discussions with your clinic team and your GP.
STEP 2: The clinic will provide a summary letter (often one-page summary) and assist with referral to the new clinic. Concurrently, you will want to establish with a local GP in your new state.
STEP 3: Your clinic may liaise with your new clinic if required to assist with the handover.
STEP 4: Optional – You can request a copy of your medical records at your own expense. This is recommended as patient data is not populated on a national database. This can also be sent to your new GP and used for ongoing reference.
NB: Some clinics will recommend you stay with your current clinic and hold telehealth check-ups. If an admission is required, they will liaise with your clinic team prior to admission.
Things to consider
- Begin documenting or recording your own health issues and when they occurred. It is easy to forget certain infections, issues with admission or who to call, where to go when having an exacerbation.
- Liaise with the new clinic on their modulator program. How is this distributed or collected?
- Visit the new clinic before your appointment. It will be less overwhelming if you have been there before.
- Ask about any differences in CF treatments and clinic protocols so that you are aware when you attend the clinic or have an admission.
What happens if I move overseas?
Just like moving interstate, moving overseas is possible with CF. A similar process will be followed as when you move to any new clinic with a few added extra steps. Depending on where you’re planning on moving too can result in different outcomes. This can be a result of the different health care systems and policies, visa regulations and insurance schemes and coverages available. Ultimately, moving overseas takes substantial planning and discussions.
STEP 1: Begin discussions with your clinic team and liaise with team on modulator access if appropriate.
STEP 2: Start researching clinics and health system available in new country. The earlier the better.
STEP 3: Your clinic will provide a summary letter (one-page summary) and may assist with locating a new clinic.
STEP 4: Your clinic may liaise with your new clinic if required, to assist with handover.
STEP 5: Highly Recommended – Request a copy of your medical records at your own expense.
STEP 6: Highly Recommended – Compile medical overview of medications, diagnoses, family medical history for quick reference in the event records are not forwarded in a timely manner.
STEP 7: Send new clinic team Medical Records.
Check out our travel information for answers on the below:
- Can you access medication abroad?
- Does the country have a reciprocal medicare arrangement with the Australian Government?
- What is the health care system like in the country? Do they have CF clinics?
- What is the climate and how will it effect (or benefit) your health?
- Can I access gyms, organised sport and other exercise options?
- What food is available, and will it give me the nutrition I need?
- Do you need CF specific travel insurance?
Understand your rights as an inpatient at home and abroad
Your rights during an admission both at home and overseas can differ depending on hospital protocols and legal statutes. Prior to an admission, it can be helpful to review any paperwork which the hospital gives you about patient expectations and rights so that you are aware of any differences (e.g. need to bring own sheets, etc) and are not surprised or confused when you may already be feeling unwell. This information can often be found on your hospital website under “patient information” or is provided as a packet prior to your admission. If you are overseas you may want to review not only the hospital website if possible, but discuss with a local community member if there are any social norms that you should be aware of to help the admission go smoothly.
If you are experiencing difficulties during your admission, as a general rule, work to resolve that issue with the individual and/or the nurse unit manager. If this is not successful you will want to contact the hospital’s patient advocacy or file a complaint. If you are too unwell you may have a support person, such as a family member or friend to assist on your behalf.
Understanding your legal rights about documentation
Accessing a summary, part, or all of your medical records to assist with the continuity of your care is often easy for many individuals. However, there may be times when a provider denies access to your records, they have no longer retained your records due to time passed, or your health professional has died. If this occurs, it is important to know that in Australia the treatment centre or health professional legally owns the record, which you are requesting to access. Each state and territory have different requirements about how long health professions are required to keep your records after a consultation. In NSW and VIC medical records are kept for 7 years from the date of the last consultation and for people under 18, this is until the patient is 25. If you are denied access to your records for other reasons, it is likely that your records may have information that could impact someone else’s privacy, or threaten your or someone else’s health or safety. The provider must give written notice telling you why this request was denied and how you can complain or appeal the refusal. For situations where your health professional may have died who was not part of a larger practice who may release the records, you may be able to access your health records through contacting the executor of your doctor’s estate. Overall, accessing health records is a simple process and many providers have processes to send your records directly to another provided when asked.