Teens with chronic conditions: adult care

Moving to adult health care for teenagers with chronic conditions

Teenagers with chronic conditions or disability will eventually have to move into adult health care. This is called transition.

Transition is a process of handing over from paediatric to adult health care services. 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 preparation and planning will help your child’s transition go smoothly.

Smooth transition means your child has continuity in their 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.

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 12-13 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 time alone with health professionals and managing their own health tasks, like monitoring blood glucose levels.

Transition phase 2: preparation

The second phase of transition is preparation. It usually happens at 14-16 years. Here’s what you can expect:

Getting your child organised

You help your child get their own Medicare card.
You help your child decide what they want in their My Health Record and who has access to it.
You help your child get their own Health Care Card. This can happen after your child turns 16.
You help your child write up a summary of their medical history.

Working with health professionals

You and your child talk with your child’s health professionals about adult health care services. You could consider things like service location, telehealth, wait times, cost differences and so on.
You consider shared care – for example, shared care between a GP and specialists and shared care between paediatric and adult health care services.
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.
You and your child work with your child’s health professionals to develop a written transition plan.
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.

Thinking about your future role

You think about how involved you want or need to be in your child’s health care after they’re 18.
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 care services.

Transition phase 3: transfer

The third phase of transition is transfer. It usually happens at 17-18 years. Here’s what you can expect:

Your child’s care starts transferring to adult health care services from the age of 18 years.
Your child’s paediatric hospital services arrange initial referrals to and appointments with specialists in adult hospital services.
The health care 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 care 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 care service and adult health care 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 care team alongside their paediatric team in a joint transition clinic. Your child might also visit adult services to get familiar with them.
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 management, where appropriate – for example, making appointments, communicating with their health team and organising their 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 needs, as well as how to navigate adult health care 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, 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 care teams encourage, empower and help your child to gain independence and manage their own health.
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 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 and giving them emotional support.

Your child might need your support with things like:

understanding and navigating the adult health care system
understanding and managing their 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.