Moving to adult services for young people with inflammatory bowel disease

Published:  May 2022

We know that moving to a new service can be a stressful time. This page will provide you with some of the key information you need to help you understand your new service and how it works.

Getting started

Here are some things to keep in mind about the transition to adult health services.

A shift in decision making from parents and carers to you
This is an important part of transition! It is a different way of thinking and it can take a little time to get used to.

Things may appear differently
Adult services and hospitals may appear different to children’s health services and have different systems and set-ups. It may take time to adjust and get comfortable.

Things may be organised differently
The new team and surroundings, and things like medication and infusions can be different, so ask as many questions as you need to.

Your comfort with the transition process is important
Talk to your healthcare team about any concerns you have.

What to do if you are feeling unwell from symptoms of IBD

Call the IBD nurse or the gastroenterology department

Contact your GP or your specialist

Present to your local emergency department

Your GP's role in transition

It is important to have a local GP that you like and trust. Your GP may now play a bigger role in your health care by:

  • receiving letters from your new adult IBD service
  • writing new referrals for you to see specialists
  • possibly organising a chronic disease care plan for you to access other services
  • monitor your health with you rather than your parents or carers.

What you can expect from your IBD service

  • Trust, honesty and confidentiality
  • To feel involved in making decisions about your health
  • To be treated as a young adult, not just someone with IBD

What is expected from you

You will become more comfortable and confident in managing your own health, including:

  • booking your appointments and regular follow-up in the IBD clinic
  • changing your appointment times if you can't make it
  • having blood and other relevant tests and scans when required
  • booking infusion appointments and ordering medication
  • being able to talk about how you’re feeling and other things in your life like relationships, drugs use and lifestyle
  • being involved in making decisions about your health.

Some or all of the above can take time to develop; your transition service will support you through this journey.

    Your first clinic appointment

    How to prepare for your move

    Preparing early for your transition to adult services can help you to adjust to the changes ahead.

    The goal is to increase your independence and self-management, so you are able to look after your own health.

    Here’s how you can prepare:

    • Plan the timing and location of your transfer to the adult service.
    • Check important areas of your life that have an impact on your health, such as your school, work, friends, family, finances, worry, mood and sleep.
    • Find ideas for a smooth and successful transition using the fact sheets and checklists on the ACI Transition Care Network Resources page.
    • Talk to your healthcare team if you have concerns and questions about moving to a new team.
    • Feel assured that the new doctors, nurses and other team members will receive information about your medical history from your children’s healthcare teams.

    Your transition checklist

    Transition checklist thumbnail

    Sometimes it can be hard to think of everything. This checklist may help to guide you along your transition journey.

    Download the transition checklist template


    St George Hospital and Liverpool Hospital Inflammatory Bowel Disease (IBD) services worked collaboratively with the NSW IBD Transition Working Group to develop this resource.

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