Moving to adult health care for teenagers with chronic conditions
Teenagers with chronic conditions or disability will eventually have to move into the adult health care system. This is called transition.
Transition is a process of handing over from paediatric to adult health services, rather than a single event. It takes time to prepare for and manage.
Your paediatrician or GP will usually start talking about transition when your child is 12 or 13. If this doesn’t happen, it’s a good idea to ask about transition yourself. Early planning will help your child’s transition go smoothly.
Smooth transition means your child has continuity of care for ongoing treatment, as well as care that matches their developmental needs as they approach adulthood. If this happens, it should mean that your child needs less emergency treatment – or none at all.
We are so relieved that we have help to navigate this transition. I’ve been thinking about it for years without knowing what to actually think. We feel remarkably calm about it now.
– Parent of a teenage child with a chronic medical condition and disability
Transition phase 1: introduction and planning
The first phase of transition from paediatric to adult health care is introduction and planning. It happens when your child is 12-15 years. Here’s what you can expect:
- You and your child talk with health professionals about transition.
- Health professionals assess how much your child knows and understands about their condition.
- Your child learns more about their condition.
- Your child starts to build self-management skills – for example, by spending some time alone with health professionals and managing their own health care tasks, like monitoring blood glucose levels.
- You can help your child decide what they want in their My Health Record and who has access to it. This can happen after your child turns 14.
- You can help your child get their own Medicare card. This can happen after your child turns 14.
Transition phase 2: preparation
The second phase of transition is preparation. It usually happens at 15-18 years. Here’s what you can expect:
- You and your child talk with your child’s health professionals about adult health services. This might include sharing care between a GP and specialists and sharing care between paediatric and adult health services. You could consider services near your child’s VET institution, university or workplace, try to centralise care in one hospital, or look into telehealth.
- Your child starts to have appointments with their GP or health professional on their own. You can encourage them to make their own appointments if appropriate.
- Health professionals assess and monitor your child’s ability to manage their own health care.
- You and your child work with your child’s health professionals to develop a written transition plan.
- You consider waiting times for adult services as well as cost differences in medicines and treatments.
- You choose a health professional to oversee and coordinate the transition process. This person is called a transition lead. They could be a GP, a paediatrician, another health professional or a dedicated transition coordinator.
- You can help your child write up a summary of their medical history.
- You think about how involved you want or need to be in your child’s health care after they’re 18.
- You help your child get their own Health Care Card. This can happen after your child turns 16.
- You look into power of attorney, including medical power of attorney, if your child needs support for decision-making.
Adult health services are different from paediatric health services. For example, appointments might be at different places and times, and services might be less flexible. There might also be differences in the way procedures are managed. For example, sedation might not be offered for blood tests in adult health services.
Transition phase 3: transfer
The third phase of transition is transfer. It usually happens at 18-19 years. Here’s what you can expect:
- Your child’s care transfers to adult health services.
- Your child’s paediatric hospital services arrange initial referrals to and appointments with specialists in adult hospital services.
- The health service that has been providing your child’s health care retains your child’s medical file but sends a detailed referral letter with relevant diagnostic tests and results to your child’s new adult health service and their GP. You can request a copy of your child’s full medical file through a freedom of information request.
- Your child’s GP, paediatric health service and adult health service exchange information. The paediatric service might set up joint meetings between themselves, the adult service, your child and you.
- You and your child get detailed information along with copies of all referral letters. Once your child is 18, health professionals might need your child’s consent to talk to you.
- Your child might be able to meet their adult health team alongside their paediatric team in a joint transition clinic. Your child might also have individual appointments with adult health professionals.
- You and your child work with the transition lead to ensure the transfer to adult health care goes smoothly.
- Your child can take over all practical aspects of their health care management, where appropriate – for example, making appointments, communicating with their health care team and organising their own medications and treatments.
Some adult health services have young adult health clinics. Some states and territories have dedicated transition coordinators in paediatric, adult or regional hospitals. These services can help you and your child understand your child’s future health care needs, as well as how to navigate adult health services and coordinate care with multiple specialists. They can also be good people to talk to about your concerns.
Transition phase 4: evaluation
The fourth phase of transition is evaluation. It usually happens 6-18 months after transfer. Here’s what you can expect:
- You and your child’s health professionals identify and sort out any final transition needs.
- Health professionals encourage your child to manage their own health care, where appropriate.
- You provide written feedback about your experience of transition.
Health care for children with chronic conditions and disability usually considers your family’s needs alongside your child’s needs. Adult health care tends to be more focused on the individual patient’s needs. But it will consider family needs, particularly if your child has a developmental disability.
Successful transition to adult health care: what it looks like
You can look for the following things in a successful transition:
- Your child’s health teams encourage and help your child to gain independence and develop ways to manage their own health care.
- You, your child and your health professionals work together on a written transition plan, from the age of 15.
- Transition planning happens as part of your child’s ongoing health care. For example, as the transition date gets closer, you have consultations with both the paediatric and adult health professionals.
- Your paediatric health professionals let you and your child know about the best adult health professionals for your child.
- Your paediatric health professionals send all relevant medical information to the adult health professionals.
- You have a transition lead – a health professional who coordinates the transition.
- You have at least one appointment with new adult specialists while your child is still seeing paediatric specialists.
- Your child’s public and private health professionals communicate well with each other.
I want to go to an adult hospital, because they’re actually going to talk to me and not my mum, and not treat me as a child. That’s what I want.
– Young person
Your role during and after transition to adult health care
You might need to coordinate your child’s health care until your child can take full responsibility for it. But depending on your child’s health care needs, your role might change. Rather than being involved in your child’s health care on a daily basis, you might start helping your child to manage their own health care and giving them emotional support.
Your child might need your support with things like:
- understanding and navigating the adult health system
- understanding and managing their health condition, monitoring and treatments – for example, taking medication on time or monitoring blood glucose levels
- keeping information about their health professionals organised
- learning how to communicate with health professionals
- making appointments
- advocating for themselves and making informed decisions.
Supporting your child’s move to adult health care is an important job, and looking after yourself helps you do the job well. When you’re physically, mentally and emotionally well, you can give your children what they need to grow and thrive. If you’re finding it hard to let go as your child takes on more responsibility, it’s best to get some help. Your GP is a good place to start.