Dr Sue Towns (adolescent physician): Transition is usually referred to as the planned purposeful movement of young people with chronic medical conditions from child-and-family-centred to an adult-centred care.
Patricia Kasengele (transition care coordinator): In Australia, we have 2 systems of health; we have a paediatric service and adult health care services.
Dr Sue Towns: There are cultural differences between the way a paediatric hospital works and the way an adult hospital works.
Patricia Kasengele: Kids hospitals have more of a multidisciplinary approach to health care. Usually there’s a person, like a paediatrician, who is looking after the overall management or the care of the young person and in the adult world, there’s no person who does the basic management. Usually the GP takes over that role, but nobody is looking at all the different areas at the one time. Each specific person looks at one particular area.
Dr Sue Towns: The GP is very important in the transition process because they will support the adult specialty teams.
Patricia Kasengele: The GP is the person who becomes the key player in your medical life. They’re the ones who get every copy of when you attend an appointment or a specialist appointment; they get copies of all that has happened. If you’re admitted into hospital, they get copies of that as well.
Kate (mother of 3, 1 with a chronic condition): We have a lovely GP. Rosie has been seeing him since she was born also. When she has her new specialist, and transitions, those reports will then go to the GP and he will be her liaison person.
On screen text: When and how does this transition happen?
Dr Sue Towns: From the age of 16, 17, 18, that is what we call our active transition phase, when we are really actively preparing the young person and their family for where they will move onto.
Kate: Rosie has been coming to the children’s hospital since she was five days old, she was transferred here, and now that’s she’s 17-and-a-half we’re looking at transitioning her from the children’s hospital to an adult hospital.
Rosie (17) (living with a chronic condition): The doctors that have been looking after me have been talking to me a lot more over the past 2 or 3 years and just asking things of me and my mum has been present, but they’ve sort of done it gradually so that, when I move, it won’t be a complete shock.
Patricia Kasengele: It’s important that young people are aware that transition is coming and that they own it. They need to be involved in the process so that they understand why it’s happening and what needs to happen as well, so they can monitor it themselves.
Mae (22) (living with a chronic condition): When I began my transition, my specialist at the kids’ hospital said, ‘OK, next month you are no longer in our care and this is who you need to go and see at the adult hospital’. They wrote me a letter and gave me the number and I had to make a phone call saying, ‘Hi, my name is Mae Rafraf and I’m going to be your new patient’.
Dr Sue Towns: Obviously the most important thing from a health care perspective is a comprehensive referral letter and investigation. So that transfer of health information is hugely important to the receiving team.
On screen text: Parents’ role during transition
Patricia Kasengele: The role of the parent during transition is very important. I think they are the people who are there both sides and as the kids have always had their parents with them, have leaned on them and have had that security.
Samira (mother of 4, 1 with a chronic condition): Before the transition, we’ve been with the same hospital for 15, 16 years and it was a shock for me when we did the transition and went to the adult hospital, when they say I can’t be in the same room, because she’s an adult and she can take care of herself.
Patricia Kasengele: Most parents find it very difficult to let go and let the young person start taking charge of their lives, but it’s really important for them to start giving them the opportunity to do stuff gradually. You know, maybe in the last year start letting them do things so that if they are not there, the child is able to make decisions for themselves, the young person. It’s important that they give a little bit of responsibility to the young person to be able to manage their own lives.
Dr Sue Towns: I think it’s really important for parents to be positive about the move, not to undermine the move by being uncertain and by letting their adolescent pick up on that.
Kate: It’s a natural progression for her to gain independence as a young adult, as a young person, and as much as we love having our children as children, we raise them to become young, independent, responsible adults and this is part of that process.
On screen text: The benefits of transition into adult health care
Patricia Kasengele: Some of the benefits of young people going to adult services are that they become more independent. They take over control of their own health and start managing their own health. It also gives them a sense of responsibility that it’s their life and they can run their own lives and be able to make decisions, as well, about their own health care.
Mae (22): They treat you as an adult, in the adult system, whereas at the kids’ hospital they tend to talk a lot to your parents. Whereas when you get to the adult hospital it’s all about you. Being more responsible for yourself and being more proactive, it does make you feel good because you’ve accomplished something.
Dr Sue Towns: Transition to adult care is another graduation and we celebrate it as a graduation. It’s a time when they have achieved a lot within the paediatric health care setting, but it’s time to move on and we actually have an annual graduation event in this hospital, where we provide certificates and t-shirt signing and they get to say goodbye to their treating teams and we wish them well for the future and it’s a great celebration of the time that they’ve had with us.