Your questions answered

You might be worrying that you’ll no longer be allowed to have someone to support you at your appointments once you transition. But we can reassure you right now that there’s no bouncer guarding the appointment room! It’s up to you whether you want other people to continue coming to your appointments or not.

“The doctors tend to speak to you rather than your parents and that was a big change I found. Since I have transitioned, I have always been the one emailing or phoning my doctors rather than my mum. Also, they feedback results directly to you rather than your parents and you can choose whether your doctors can share that information with your parents.” – Hasna

You might also be looking forward to the moment you can take care of your treatment and leave the person who usually supports you in the waiting room. Whatever your feelings are, make sure they’re heard. Chat to your family or carer about your transition and let them know what level of involvement you’re comfortable with. It’s a big change for them as well – they might find it harder to let go than you do. 

However you feel, there’s no right or wrong way. Need support? No problem. Can’t wait to become more independent? Great!

"If you don’t feel 100% happy, ask to have an adult support there, a friend or family member, and tell your team you need this support.” – Jordy

“I gained so much more independence when I transitioned. I carry out all of my own treatments, set up my own routine that works much better for me and took control of the small things – organising my own appointments and ordering prescriptions!” – Emily

If you’re thinking about transition, you probably already have some independence when it comes to your treatments. But independence means different things to different people. Perhaps you know how much Creon you need to take but still need nagging to do your physio. Or maybe you have a wall chart, reminders on your phone and could clean your nebuliser in your sleep! It doesn’t really matter what stage you’re at, but you’ll find that as you move into adult care your team will encourage you to be more independent.

“There was the expectation from paediatrics that I should be able to do all my treatment when I moved over and that pressure was a lot.” – Lucy

Start thinking about the things you need help with and discuss them with your CF team. They can give you techniques to make things easier. Don’t feel embarrassed if you find it difficult to manage your cystic fibrosis. Dealing with a condition like CF, and the hours of work that goes into staying well, is something most young people don’t have to think about.

It’s also important to remember that while you will be encouraged to become more independent when you move into adult care, you will not be expected to become completely independent straight away. Your adult team will understand that it takes time to get used to doing everything on your own, and that you might still need support or reminding to do your treatments. Remember, most people with CF are supported with some parts of their care no matter how old they are.

“I would definitely encourage support and help with ordering prescriptions, as I was clueless and my mum worked full-time and couldn’t explain it easily to me.” – Jordy

You might feel very close to your CF team, especially if they’ve taken care of you for a long time. Or you might just see them as a team of people that provide your care. Both of these feelings are totally normal. However, if you are very close to some of the people in your paediatric CF team, you might feel a bit sad about leaving them.

“No one said to me that this is your last appointment with us before you move to adults. So I thought there would be a clinic at the new adult hospital, and then I’d go back one last time for my last appointment at paediatrics. But I was really upset in knowing that I’d never see my nurses and doctors again, because you become quite close with them.” – Kate

If you feel like you want to say a ‘proper goodbye’ to your CF team, speak to your family or carer about it. You might find that they have the same feelings you do, and want to join you in saying goodbye to the team. And if you talk and find that you don’t feel like you have that kind of relationship with your CF team, that’s totally fine.

“I was only diagnosed at 14, so I don’t feel like I developed the attachment to my paediatric team that other young people who have been diagnosed as babies have. The CF centre staff talked to me about getting attached to the paediatric team, but I thought this was weird because I hadn’t had this experience!” – Hasna

You CF team and your parents might have spoken to you about adherence. It’s the technical term for doing your treatments. Many people with CF, no matter how old or experienced they are, struggle to do all of their treatments. Almost no one will do them all perfectly.

You might plan to take all of your tablets but forget one when you have a busy day. Or you might find that you sometimes skip your physio because it takes up a lot of time. You might even decide to stop doing all of your treatments, even though you know they keep you well. If you find yourself doing any of these things, you certainly aren’t alone.

“It’s good to be honest with your team as they won’t tell you off for missing things. They understand it’s a lot to juggle, as well as education or work. More often than not they’ll come up with a plan and work with you to get better and this doesn’t mean perfect adherence straight away either.” – Cicely

If you’re struggling with your treatments, try speaking to your CF team. They won’t tell you off or be shocked. They’ve probably spoken to hundreds of people just like you, who will have their own reasons for struggling with their treatments. Instead, they’ll want to know why you’re struggling and how they can help. Try to be honest with your new CF team as well, and don’t feel like you need to make ‘a good first impression’. They won’t judge you if you struggle with your treatments, and will want to help.

You could also speak to your family or friends, and try to explain to them why you find it hard to do your treatments. You might find that the people who love and care about you are worried or upset by the idea of you not doing your treatments.

There is a section in the transition booklet for families and carers that talks about adherence. You could ask them to read this before speaking to them, and it might help you to have these conversations.