Don’t get lost in transition

ANGELA MCGILL AND EMMA WELLS

Angela McGill is Haematology Social Worker at Calvary Mater Hospital, Newcastle, NSW.

Emma Wells is Paediatric Social Worker at John Hunter Children’s Hospital, Newcastle, NSW.

An interview on moving from paediatric to adult haemophilia care

Transitioning from paediatric to adult haemophilia care isn’t just a medical change – it’s a major life shift. So how do young people make the leap without falling through the cracks?

Social Workers Angela McGill and Emma Wells and Ash, a young person with haemophilia who recently made the move to adult care, talk about this question. Together, they share insights, tips, and first-hand experience to help others make the transition with confidence.

Nurse explaining where to go to young people at hospital reception - Pavel Danilyuk for Pexels.com

Q: Why is the transition from paediatric to adult care such a big deal?

Angela and Emma: It’s a really vulnerable time. In paediatrics, care is very family-focused with lots of support from your whole team – doctor, Clinical Nurse Specialist, physiotherapist, child life therapists and social worker – some Haemophilia Treatment Centres also have a clinical psychologist. But once you enter adult services, the expectation is that you take charge – managing appointments, medications, emergencies, and all communication. If we don’t prepare young people well, they can become ‘lost in transition,’ which can lead to delayed treatment, missed doses, or even serious complications.

Q: Ash, what was it like for you?

Ash: At first, I was overwhelmed. I’d gone from having Mum speak for me at appointments to suddenly needing to explain my treatment plan and log everything myself. I didn’t feel ready – but luckily, my team started talking about transition when I was around 13 or 14, so I had time to adjust.

Q: When should transition planning actually begin?

Angela and Emma: Ideally, between 12 and 14 years old. It’s not a one-time event – it’s a gradual process. At that stage, we start introducing developmentally appropriate education and encourage young people to ask more questions. For example, ‘What do I do during a bleed?’ or ‘What’s my treatment regimen?’ They should begin learning how to explain their condition to others, too.

Q: What practical steps should young people take in the middle stage — say, between 14 and 16?

Angela and Emma: That’s when we encourage independence. Young people should:

Start taking charge of their healthcare — organising appointments, tracking treatments.
At 15 years of age, a young person can apply for a tax file number, access their immunisation history, open their own bank account and get their own Medicare card
Understand what Medicare covers — including their factor products.
From 16 years of age a young person can set up a myGov account and link it to their online Centrelink account
At 16 years of age, apply to Centrelink for an Ex-Carer Allowance Health Care Card application, if eligible
Maintain a summary of their diagnosis, treatment plan, and emergency contacts.
Learn to manage anxiety and stress in healthy ways.

Ash: The MyABDR app was a lifesaver. I got used to logging infusions and bleeds before I fully transitioned. It made me feel more in control. Make sure you have a good list of emergency contacts, especially afterhours and check out the HFA website for support and information.

Q: What happens in the final phase, around ages 16 to 18?

Angela and Emma: This is where we focus on hands-on skills. Teens should:

Learn how to self-infuse, manage prescriptions, and recognise early signs of complications.
Visit their adult Haemophilia Treatment Centre ahead of their first appointment.
Attend joint transition clinics — where the paediatric and adult teams meet the patient together.

Ash: Visiting my new Centre helped a lot. I asked things like, ‘How do you book appointments here?’ and ‘What happens if I have a bleed on the weekend?’ Knowing the answers before I needed them made me feel safer.

Young man looking at his smartphone - Freepik licence

Q: Is it just about the medical stuff?

Angela and Emma: Not at all. It’s also about identity and confidence. Teenagers are figuring out who they are while learning to live with a chronic condition. That’s why emotional support is critical. We encourage families to support their child’s independence while still being in the background – offering help when needed but not taking over.

Ash: I had a few rough patches. Honestly, it helps to talk to a social worker or a peer mentor who’s been through it. You’re not alone, even if it feels that way.

Q: Any last words of advice?

Angela and Emma: Yes – ask for a written transition plan. It should include your handover summary, emergency protocols, and contact info for your new team. Also, don’t transition during high-stress times like final exams or a treatment change. Timing matters.
One more suggestion, you know what works well for you – build on this to ensure your long-term good health and well-being!

Ash: Start early, ask questions, and get familiar with your care. I felt lost at first, but now I’m more independent than I thought I could be. I would remind families that they often know what works best for them. Be confident in asking for things and discussing what has worked in the past.