Patricia Kasengele (transition care coordinator): Families need to be able to plan the transition themselves, have a look at what they need to do to get the young person, and themselves, ready to go into the adult world. They also need to start preparing the young person to be able to manage their own care, to be able to sit in appointments and be able to talk and understand their own illnesses as well, so that they can talk about it intelligently.
Dr Sue Towns (adolescent physician): We talk about a preparation phase and that’s really from perhaps the age of 12 years onwards, when we are really trying to encourage young people to take on some of their self-management.
Mae (22) (living with a chronic condition): I started to gain independence before I had transitioned, so I was about 15, 16. My condition requires me to have regular blood transfusions every 28 days and I started by picking the day that I needed to have my transfusions. So that was one of the first decisions I made and then my mother allowed me to make my doctor’s appointments.
Kate (mother of 3, 1 with a chronic condition): During the last 18 months, the doctors in adolescent medicine are much more tuned into talking directly to Rosie, getting Rosie to take responsibility for more of her care. I think it’s going to be really important for Rosie, particularly in the initial stages of transferring to an adult hospital, is to go and visit it first.
Patricia Kasengele: It is very important to take the young person for a pre-visit. We take them across and just let them have a look, ask questions, you know, they like going to where the food is, of course. Show them where the canteen is and when they come in, where they park and where they will see the doctors, where they are likely to see the doctors. Also to the wards to see where they are likely to come and have a look and talk to the staff there, just to get a feel of what it is, before they are actually sick and have to go in.
Mae (22): When I first went over there, I wrote a list of questions that I wanted answered. Just simple things; where do I get my medicines from? Who is the doctor who is charge of me? Where’s the cafeteria? Where are the vending machines? Where’s a good place to grab a coffee? Things that you’re going to have to know to make your life at an adult hospital, anywhere, a bit easier. Moving from the children’s hospital to the adult hospital was a bit of a culture shock. In the adult system, it’s very much about; you’re sick, you need to get better and off you go. The paediatric system is lively, it’s bubbly, it’s friendly, it’s approachable.
Patricia Kasengele: With young people and how they cope with transition, it’s very individual. Some people like going to adult services, they actually like the thought of not having to sit around screaming kids and they’re quite happy to just come in and go, you know, without all the fuss of seeing a hundred people and some people don’t. Some people like that atmosphere and that environment and they want to keep that. So it’s very individual for each person.
Kate: Rosie herself has found it really difficult to be in wards where there’s lots of little bubbies crying or lots of young siblings visiting and I think one of the things that she’ll really enjoy is moving on, gaining that independence that she needs.
Rosie (17) (living with a chronic condition): I’m looking forward being with a bunch of people my age and older, rather than screaming babies.
Mae (22): My first experience at the adult hospital was good. It was good. It was something new, it was something different, it symbolised the start of a new era in my life and in my treatment. I met a whole bunch of new people who were just as committed to my care as the kids’ hospital was and, you know, just as professional and they knew what they were doing.
Dr Sue Towns: When we did some research, we found that, surprisingly, or perhaps not surprisingly, parents were the most anxious and worried about transition and the young people, even though they had some uncertainties, were basically able to take it in their stride and felt pretty confident about navigating and moving on.
Mae (22): I guess with all changes, especially transition, that you do need time to adjust.
Kate: We’re going to look at it as a fresh, new challenge and as an exciting step.