Moving to adult health care for teenagers with chronic health conditions

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

Transition is a process rather than a one-off event. It takes time to prepare for and manage smoothly.

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. The sooner everyone starts thinking about and planning transition, the better.

Smooth transition means your child has continuity of care for ongoing treatment, as well as care that matches his developmental needs as he approaches adulthood. If this happens, it should mean that your child needs less emergency treatment – or none at all.

Moving to adult health care: transition phases

You, your child and your health professionals need to think about transition from the time your child is diagnosed through to when your child reaches her mid-20s.

There are three transition phases:

  • Early: this is from the time of diagnosis to when your child is 12 years old. During this time, your child has ongoing care from your GP or paediatrician, other child specialist services or hospitals.
  • Preparation: this is when your child is 12-16 years old. During this time, your child might start to visit adolescent clinics. You’ll also start to talk about transition and draw up a transition plan. And your child will start to spend some time alone with health care professionals.
  • Active: this is when your child is 16-19 years old. In these years, you’ll be supporting your child to develop self-management skills. He’ll spend more time alone with health care professionals. You might have joint consultations with child and adult teams. You’ll be working towards a set transition date.

Download a printable transition checklist (PDF: 85kb) to help you and your child navigate the transition phases to adult care.

Health care for children with chronic health conditions and disability usually considers your family’s needs alongside your child’s needs. Adult health care tends to be more patient focused, looking just at the individual patient’s needs.

Successful transition to adult health care: what it looks like

Preparation and planning will help your child make the transition smoothly.

You can look for the following things in a successful transition:

  • Your child’s health care teams encourage and help your child gain personal independence and develop ways to manage her own care.
  • You, your child and your health professionals work together on a written transition plan, which should be in place by the time your child is 14.
  • Transition planning should happen as part of your child’s ongoing health care. For example, as the transition date gets closer, you’ll have consultations with both the paediatric and adult health care professionals.
  • Your paediatric health professionals should let you and your child know about the best adult health care providers for your child.
  • Your paediatric health professionals should send all relevant paediatric medical information to the adult health care professionals.
  • You should have a health care worker who supervises the transition.

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

During and after transition: what to expect

Moving to adult health care is a big and sometimes challenging change. Transition affects everyone – your child, you as parents, your immediate and extended family, other carers and friends.

Although adult health care services might seem hard to work out at first, it won’t always be like that. Usually teenagers quickly get used to a different way of doing things.

If your child has had regular care from a children’s hospital, the paediatric service will ideally arrange the initial referrals to and appointments with specialists in adult hospital services. In the lead-up to the transition date, the paediatric teams might also set up joint meetings between themselves, the adult service, your child and you.

Your child might also have individual appointments with the new health care teams before the formal transfer to adult health care services. Visiting the adult health care service while your child is still going to the paediatric service can help with any worries that you or your child have about the transition.

Some adult health care services have young adult health clinics to provide a gradual transition. Some states and territories have transition care coordinators in paediatric hospitals or regional teams. They can help you and your child understand your child’s future health care needs and how to navigate adult health services. They can also be good people to talk to about your concerns.

Your child will have a wide choice of health care professionals in both public and private health care. If you choose private adult health care services, your paediatrician or other child specialist will recommend adult specialists. To make the transition smoother, try to make at least one appointment with the new adult specialist while your child is still seeing the paediatrician.

With the children’s hospital you’re used to them doing everything for you and all of a sudden, now you’re going to the adult hospital. You’ve got to do a lot of it yourself and it’s just a shock.
– Young person

Adult health care services: what to expect

Adult health care services are different from paediatric services.

One of the big differences is that adult health care services operate separately. That is, they don’t tend to have the team-based approach of paediatric services.

This means that your child will need to be actively involved in his own treatment and know his own medical history. You can help your child by talking together about this before and during transition. You could also help your child write up a medical history form (PDF: 41kb).

If your child needs to see several specialists, she’ll need a referral for each one. Your child will need to keep up to date with her referrals too. GP referrals usually last only a year, although you can get referrals that last longer.

Your child will need to organise specialist appointments himself. The appointments might be at different locations and times, and the services might be less flexible about changing things to suit your child.

There might be extra costs and charges for medication or equipment, because paediatric services are usually more subsidised.

At Children’s I had one main person who organised all my tests – told me to go here and there. But with the adult hospital now, I’ve got to see many different doctors … and have different appointments.
– Young person

Your role during and after transition

You still have a big role as your child moves to adult health care. But depending on your child’s care needs, your role might change from being involved on a daily basis in your child’s care to giving emotional support and guidance.

Your child will need your help with things like:

  • learning how to interact with medical staff
  • understanding the adult health care system
  • developing skills for managing her own health care, including her My Health Record.

You might also need to coordinate your child’s care until your child can take full responsibility for it all (if this is possible for your child). With your continued support, your child can learn to manage it himself.

Some parents find this change hard. They can feel ‘left out’ as medical staff focus increasingly on their child and ask for her opinions. It’s not unusual to feel anger, guilt, injustice or despair at this time.

Looking after yourself will help you cope. It can help to be part of a support group, talk with family and friends or see a counsellor or other health professional.

Your other children might also need extra support at this time too.

Although it might be a challenging time for you and your family, it’s also a time when you can all celebrate your child growing more confident and independent.

Teenagers who’ve successfully made the transition to adult health care have suggested tips for other teenagers to help the transition to adult health care go smoothly. You can share these tips with your child. Download the transition tip sheet ( PDF: 115kb).

Keeping in touch with the GP

It’s important that your child has a GP.

The GP is always your child’s first contact for general health concerns in the teenage years and into adulthood, especially between specialist appointments. Your child can make an appointment with a GP more easily than with specialists or hospital outpatient clinics.

The GP can also help by providing medical reports or letters to other organisations or government departments – for example, Centrelink or education, disability, housing and employment services.

And the GP can talk to your child privately and confidentially about social and psychological issues and refer him to psychologists, occupational therapists, dentists or social workers if he needs these services. The GP will also know whether your child is eligible for a Chronic Disease Management Plan under Medicare.

It’s a big advantage to have a GP near to your child’s study or work who knows your child well, can coordinate her care and can help her engage with adult health services.

I like it, because I’ve got freedom.
– Young person

It marks me as a person who is growing up. I have grown up and I am in charge now.
– Young person

It lets me get out on my own and that’s what I’ve been trying to do for years.
– Young person