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
Your first clinic appointment
In a public or private service, you may see a:
Gastroenterologist
Gastroenterology registrar
IBD nurse
Research assistant
Dietitian
Colorectal surgeon
IBD pharmacist
Psychologist
Ask your IBD service about the contact details and locations of:
the gastroenterology department or outpatient’s department
ambulatory care unit or infusion centre
pharmacy outpatients and other pharmacy locations
dietitian
psychologist
the endoscopy department.
What should I bring to my appointment?
Your referral letter
Medicare card
A list of medications you are taking
Recent pathology, endoscopy and imaging results
Reports from other specialists
Referral information
Please provide a referral addressed to your gastroenterologist by your GP or paediatric gastroenterologist (note that GP referrals are valid for 12 months). If you require an interpreter for your appointment, please notify administrative staff in advance so that they can arrange this for you.
Communication following your IBD clinic appointment
A letter will be provided to your paediatric gastroenterologist, GP and any other specialists involved in your care.
This letter will summarise what was discussed in your appointment and the future plan for medications, investigations and other aspects relating to your care.
Your IBD service will provide details of where you can get these tests. This allows them to electronically access your results rather than waiting for faxed or mailed results.
Please note that not all blood tests or imaging are covered by Medicare. Some, such as faecal calprotectin (a stool or faeces sample that can be tested to monitor the levels of inflammation within the bowel) and magnetic resonance enterography (MRE) (imaging that looks more closely at the structures within the bowel), may incur a cost.
Checking medication levels
If you need to have a blood test to check medication levels, please have your test at your hospital pathology or suggested pathology centre.
Medication levels for injectable or infusion medications (biologics) will need to be done before your next dose. Please confirm this with your IBD service. These tests measure trough (lowest concentration) levels of medications in your blood stream. The results tell the doctors if the levels are within the required range.
Endoscopy
Endoscopic assessment, including gastroscopy and colonoscopy, may be recommended. This usually occurs as a day procedure, in either a morning or afternoon schedule. It will require fasting and possibly bowel preparation (to cleanse the bowel prior to a colonoscopy).
Medication information
You may be prescribed a medication that needs to be given intravenously (through the vein) or by an injection under the skin. The medications can be given through different arrangements, for example:
infusions through the ambulatory care unit or infusion centre
extra infusion doses through compassionate access
extra doses through compassionate access for injections
iron infusions through the ambulatory care unit or infusion centre.
Please be aware that infusion speed or rate may change from what you were used to.
Please confirm your specific medication and infusion arrangements with your new IBD service or specialist, such as picking up medications from your local pharmacy or your hospital pharmacy.
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.
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
Sometimes it can be hard to think of everything. This checklist may help to guide you along your transition journey.
Please be aware there is a lot of misinformation on the internet and social media. We have listed some reliable sources below where you can access trusted information. If you are not sure about something you have read or heard it is important to ask a member of your IBD service so you can discuss it together.
Beyond Blue provide information and support to people with anxiety, depression and suicide prevention
Reach Out Australia is a website dedicated to young people under 25 years of age with everyday questions from sexual health to mental health
Headspace offer mental health support and information for young people aged between 12 and 25 years
Acknowledgements
St George Hospital and Liverpool Hospital Inflammatory Bowel Disease (IBD) services worked collaboratively with the NSW IBD Transition Working Group to develop this resource.
