You probably have a ton of questions about moving to adult care and what it means for you.

 

The process of transitioning to adult care can vary from hospital to hospital so please make sure you ask your team about what their process is. One thing is for sure though, they will have a process!

We’ve answered some common questions below, however these are also good questions to ask your team.

 

What is transition?

Transition is the process you will begin when you are about 12-13 to help you move from your paediatric hospital to your new adult hospital. Transition is a period of change where you are supported to start managing things by yourself. The earlier you can start transitioning, the easier you will find it.

Many people liken transition to moving from Primary School to High School:

• You need to get familiar with your new teachers (your new health care team),
• Fill out lots of forms initially (specialist referrals from your GP and new patient forms)
• Learn new processes and get used to the bigger school (how your new adult team operates and where they are located in your new hospital),
• Figure out how to get to your new school (is your new hospital accessible by public transport or driving. What is the car parking like at the new hospital),
• Buy new stationery and schoolbooks (get your own Medicare Card, etc).

Some paediatric hospitals may have a formal transition program you can join to help or may have CF team specific programs. It’s worth asking your Paediatric Team what their process is to support you through transition.

It’s also worth asking them if you can tour the new adult hospital to get familiar with where you will soon be going.

The CFStrong site is here to support you through the transition process with lots of helpful resources as well as stories from others who are currently transitioning or are now settled with their new adult team.

 

What is the difference between paediatric and adult care?

Your CF Paediatric team are all in the one friendly, colourful place. A place you have come to know well and trust over the years. It’s a very child, very family centred place. Your CF team talk to both you and your parents and guardians and you have most likely been seeing the one team throughout most of your childhood.

Your adult CF team may not all be in the same place and adult hospitals can take some getting used to, especially after you’re used to the bright, light feel of children’s hospitals. Your adult health care team will be interested in you and in talking to you to find out about your health care needs. They won’t direct questions to your parents or guardians, and they will anticipate that you know enough about your health and your CF to be able to report any changes or challenges and so on.

You will also now need a referral for each specialist you see, eg. Diabetes (Endocrinologist) and gut doctor (Gastroenterologist).

This is why it’s important to also find a good GP if you don’t have one. Make sure you ask your GP to make your referral ‘indefinite‘ because typically a specialist referral only lasts 3 months and GP referrals only last 12 months. Asking for an indefinite referral means you don’t need to go back to your GP every 12-months to get a new referral.

Remember: The role of your adult care team is to help YOU to achieve your maximum potential!

CF is a part of your life, and your adult care team will focus on how CF fits into your life and your goals, both short-term and long-term. You can talk to your adult team about how you manage your CF amongst your daily living, how you modify your routines for travel/festivals and so on as well as considerations for your future career path.

 

Why do I have to change to new doctors?

Paediatricians are trained to care for kids and teens. Their training and practice does not extend into adulthood.

As you grow up your needs will change a lot and you will want to see doctors who can talk to you about other things in your life like travel, sexual health, family planning, career choices, supported travel and so much more!

 

What happens when I am at an adult clinic?

Transition is different for everyone. Some people say they have a hard time leaving their old team while others are happy to move on. Everyone says it can be full on when you first start with your new team. Lots of new doctors, staff, a new hospital system and a new process of doing things. This can be overwhelming, and you may not know who exactly to talk to, or what to ask or say. Whenever you are in doubt get in touch with your Clinical Nurse Consultant (CNC)!

Family and friends are a great support during this time so make sure you use them, but remember it is also important to get to know your new treatment team and to get to a point where you feel comfortable talking to them.

Always remember that you are allowed to ask any questions regarding your health care – there are NO silly questions EVER!

 

What age do I need to start thinking about transition?

At around the age of 12-14 you will start to hear a lot more about transition. Don’t worry though, you don’t need to change to an adult hospital at that age, you will just start to learn more about taking control of your own health, with the support of your CF team and your parents or guardians.

Starting to take control of your own health will not only give you more power over your health, it will also make the actual transfer from your paediatric hospital to your adult hospital much easier when the time comes.

You may ask, what does taking control of my own health look like?

• It may be that you start to see your doctor/care team on your own for the first part of your appointment and your parents/guardians come in at the end,
• It may be that you start to ask more questions about your medications at home and at your appointments. Learning more about what you take and why. Remember, knowledge is power!
• It may be learning to do some of your health management yourself, like performing airway clearance.
• You may start talking to your health care team about changes in your health or CF or things you may be concerned about that are affecting your CF, instead of your parents or guardians doing all the talking.
• Your care team will start to take into consideration your opinions and your ability to make independent decisions.
• You can make sure you get more involved in the conversation at your appointments – ask questions if you are unsure, speak up about your concerns, tell them how you feel.

 

How do you start to take control of your own health?

Taking control of your own health can look different for everyone. How involved you become can vary based on your age and ability to take on extra responsibility.

The best place to start is by talking to your current CF team and your parents or guardians. Chat to them about how you can start to be more involved.

Here’s some ideas taken from the Agency of Clinical Innovation (ACI) in conjunction with the Sydney Children’s Hospital Network (SCHN) that you may like to consider:

At 12-years

• Can you describe what is CF?
• Can you name your medications and reasons for taking them?
• Do you remember to perform airway clearance?

At 13-14 years

• Can you list your medications, amount and frequency to be taken?
• Can you answer questions independently in clinic?
• Can you perform airway clearance without help?

At 15-16 years

• Can you recognise any of your symptoms and describe them?
• Are you aware of your clinical appointments and tests due?
• Are you aware of your medication supply?

At 17-18 years

• Can you contact your CF team directly to discuss changes in health?
• Can you schedule your own appointments?
• Can you fill and refill your own prescriptions?

 

Do I need to transfer to a new adult doctor as soon as I turn 18?

Not necessarily. In many cases the change happens when you finish high school. This will be a process you will have been working through with your Paediatric team as well as your new adult team. Ideally, you will have met your new adult team, either with a member from your paediatric team, or through setting up a tour yourself.

Again, this process can vary greatly from clinic to clinic, so remember to ask your current care team.

 

How do I find my new adult doctors?

Your current CF team and your GP will help you with this process and support you through making appointments with them. You will need a referral from your GP for your new team. You are best to get your referral from a GP and ask for an ‘indefinite referral’ so you don’t need to ask for a new one every year.

 

What do I need to take to the adult hospital the first time?

For your first visit you will need to bring a referral letter from your GP and your Medicare Card. You may have your own Medicare card if you’re over 15 or you may still need to get it from your parents. You should ask your GP for an “indefinite referral” letter as this means that you won’t have to keep getting a letter for your CF specialist every year.

You can also bring along a relative or friend to your appointment if you wish. Don’t feel you have to go it alone.

 

Can I still contact my paediatrician after transferring to my new adult doctor?

This is a good question to ask your team as the answer can vary.

In many cases, Paediatricians will support you in the transfer to your new adult clinic, meaning you will have a period of cross over where you are in touch with both your paediatric team and your adult team. This transfer is done at a level that is comfortable to you. So, yes you can still reach out to your Paediatrician.

Once you have fully transitioned to your adult care team however it is recommended all your communication is through your new team.

 

Can my Mum / Dad / Carer still come to my appointments with me?

Absolutely! If you want them to. Don’t think you need to take this all in on your own. Surround yourself with support.

At 18, as an adult you can decide who you would like to come to your appointments as a support person. The adult team will talk directly to you though and will assume you have the knowledge on your health to be able to answer their questions.

 

Will the adult health care service know about my medical history? Will I get a copy of my medical information?

Your Paediatric team will do a ‘hand over’ of your information to your new adult team. You don’t automatically get a copy of this information, however you can request access to this information.

The process to access this information varies and you are therefore best to contact your hospital.

 

What other things do I need to know?

• It’s always important to know who to contact in an emergency or if you are having an exacerbation.
• The contact numbers of your team.
• Where to order specific nebuliser equipment.
• How and where to pick up scripts at the new hospital.
• Processes – some, like annual reviews, are different so it’s important to ask about this when you arrive at your new clinic.

 

Some quick tips:

• Put your health care teams contact details into your phone contacts straight away!
• Write down any questions you have prior to your appointments – it’s so easy to forget when you are there!
• If you don’t feel comfortable with your new doctor it’s okay to change. Your first doctor might not be right for you, you have the right to ask for another referral.

 

Who else can I talk to?

Transitioning care can feel like a lot to learn when you start but know there are lots of supports available. Start by talking to your parents or guardians, your current health care team, your GP or you can contact your CF State Organisation HERE.

Got more questions that we didn’t answer here? Please let us know by emailing us at support@cfcc.org.au