Making decisions about care

When you were younger, your parents made all the decisions for you. Whether it was about what clothes to wear or what the family was going to have for dinner, or anything. But now in your teenage years, your independence means that you get a say in things. When you turn 18 you’ll be able to call your own shots.

Big changes  are coming in your life, which might make you feel many different things. Excited, anxious, overwhelmed… maybe even impatient for it to all happen. Among all the other responsibilities that come with being an adult, possibly the most important change that you’ll face is that you will start to take ownership of your medical care.

Beginning from the age of 15, your CF clinic team will begin the process to transition your CF care from a children’s hospital to an adult hospital. It’s a gradual and well-planned journey, with your health and wellbeing being the most important considerations. The transition process will equip you with knowledge so you know what to expect.

To encourage you to learn more about your CF care, your clinicians will begin involving you more in decision-making. This means that they will consult with you and ask for your opinions, instead of just dealing with your parents. A big part of this is helping you build up your knowledge of CF and of your own medical history, so that you’ll have all the information you’ll need to make decisions about your treatment later on.

The transition to adult care will involve you learning new skills. Things like how to advocate on your own behalf so that you can be comfortable that your voice is being heard and your needs are being met.

You’ll get your head around your treatment plan, what your medications do, and how you fill a prescription. You’ll get your own Medicare card for the first time too. Then there’s the logistics of your clinic visits – scheduling them, travelling to clinic, and how to navigate your way around an adult hospital.

When it comes time to make the transition after you turn 18, your paeditatric clinic will arrange a meeting with your new adult hospital CF team and you’ll have the chance to talk to your new team and ask questions. Once you have had this meeting, you have officially transitioned and your next clinic visit will be at your new hospital.