We set out on a mission to ask CF Clinical Nurse Consultants (CNCs) from adult hospitals 3 things they want you to know before you transition. Want to know what they said? Read on…
The number 1 thing all CNCs want you to know… The importance of having your own GP!
This was undoubtedly the number one thing that came from the mouths of all CNCs we spoke to.
It’s so important to have a good G.P. (local doctor) involved in your health care, and your GP should be your first point of contact if you fall unwell. Your GP can determine what is wrong with you and, if needed, contact a specialist. It is so much easier, and takes a lot less time, to see your GP first rather than wait in an emergency room at a hospital.
Your GP looks at all aspects of your health and wellbeing. They will ask about lots of things, from your ears and eyes to your stomach, heart and blood pressure and also your psychological health. They will also help with your vaccinations, like the flu vaccination. A specialist tends to look at only one part of your health, whereas your own GP will look at the big picture of your health.
Finding a GP you like should be done before you leave paediatric care. Treat finding a good GP like trying to find a good pair of shoes – try them on and see what’s comfortable. If you don’t feel comfortable with the first GP you go to, try another! When ‘shopping around’ it’s also good to take the time to ask about their fees and if they offer bulk billing. If this is important to you, you may need to search a little more to find one that suits your needs.
A good GP becomes so valuable when you start on the path of transitioning to an adult hospital. In amongst the change from paediatric care to adult care it is good to have one constant person to help you through. Your GP is your constant contact person. They can even help you decide what adult specialist you should see and when. Your GP will write out your referrals and when you move to adult care you need to ask them for an ‘indefinite referral’ so you don’t have to keep asking for one every 12-months.
It’s also worth remembering that you can plan ahead with your GP to avoid delays and wait times. If you know you will need a script, a letter from your doctor or a referral, try to book in a few weeks prior.
If you don’t yet have a GP yet, we recommend you find one!
The number 2 thing all CNCs want you to know… Your CF!
They want you to understand your own CF. For so long your parents/guardians have helped you manage your CF and it’s now time for you to take the reins.
What does this mean? It means understanding what CF is and how it impacts you, your medications and your medication schedule, your daily routines and why you do them, who your specialists are and why you see them, etc.
If you find you are unsure about anything related to your health or CF ask your parents/guardians, or your health care team. Actually, ask lots and lots of questions!
Remember, there’s never a silly question!
The number 3 thing all CNCs want you to know… Plan for your future!
For many young people now, CF looks very different! A decade ago people didn’t always plan for their future. Now, you can certainly plan for your future.
What do you want to be doing in 1 year, 5 years, 10 years?
Do you want to take a holiday, go to uni, maybe even save and buy a house? What’s your passion? Have you found it yet? Photography, writing, drawing, cars, teaching, the list goes on… what do you think you might like to do for a career? The opportunities are there for you.
Want to travel? Great! How do you manage your treatment while travelling?
Want to be a teacher? Awesome! What do you need to know?
Love playing sport? Fantastic! How do you keep playing for as long as possible?
These are also some great things to talk to your health care team about. Tell them what you want for your future and ask them to help you get there!
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
