Transition to Adult Medical Services
Home
Transition to Adult Medical Services
Paediatric services are designed to support the health of children and adolescents. This means that people typically only have access to them until they are 18, at which point they are expected to move on to using adult services. This transition phase can often be challenging and can leave intersex people with gaps in their care and medical history. There are a few extra steps you can take during this transition to not only improve your continuity of care, but also help you make important long term planning and decisions much more straightforward.
Making a Plan
Every person born with a variation of sex characteristics has different needs based on their variation, their overall health needs, and the care that they have received so far. Knowing what information you need can help you pinpoint where to find that information. This is where making a plan comes in handy.
First, find some kind of folder, lockbox, or organiser that you can use to keep important documents together. It’s also important to keep back-ups of any information you have, so consider taking photos or scanning in documents and storing them somewhere safe.
After doing this, write down a list of the information you need.
This might include information such as:
- Information about your variation,
- Names of the doctors who have provided care and their specialisations,
- Hospitals and wards you’ve visited or stayed at,
- Treatments or procedures you underwent and when they happened,
- Tests, the results of those tests, and how often they have and should be done,
- Details of current and past medication,
Any other paediatric records and medical history.
- Some information about your variation, how you understand it, and how your care has been managed so far. This will help provide new doctors with your background.
- An idea of what doctors and specialists you may need to keep seeing on an ongoing basis. While it depends on your variation, some intersex people may need to see an endocrinologist, urologist, or gynaecologist.
- An idea of what tests you might need, how regularly you need them, and what the test is monitoring for. These tests will be very specific to your variation and the healthcare you’ve received already. It’s pretty common for some intersex people to need blood tests, ultrasounds, and bone density scans to check periodically for common health risks.
- An idea of any follow-up surgery or other kinds of treatment that you might need. These may include follow-up treatments to deal with characteristics of your variation, or consequences of earlier surgeries, such as a narrowing of the urethra or vagina, or dilation.
- An idea of what medications your body needs on an ongoing basis. As well as any other treatments or therapies that you wish to pursue.
Where to find information
A lot of information should be made accessible to you just by knowing the right people to talk to. Your parents might have kept some information for you. Or if you’ve A lot of information should be made accessible to you just by knowing the right people to talk to. Your parents might have kept some information for you. Or if you’ve had the same doctors growing up, you should be able to get information from them. If you’ve been managing your scripts or tests for a while now, you should have that information to hand.
Information about your variation in sex characteristics can be challenging to come by. It’s worth bearing in mind that information that is written by doctors for other doctors can be very complex or distressing. How people talk about intersex variations online can vary a lot as well. Some sources of information may get some of the basic facts right but might understand the experience of that variation quite differently from the way you do or make inappropriate assumptions. It’s also worth bearing in mind that diagnostic language can change significantly over time. While the internet has been able to create a wealth of accessible information about intersex, you may find it useful to talk to peer workers or community organisations that are familiar with variations.
Finding knowledgeable adult services can be challenging. You may like to contact the pediatric services that you’ve engaged with as a child and ask them for a referral onto their equivalent adult service. Community health organisations and peer support groups maintain information on referrals or recommendations. Most specialists are accessed through a GP, so it is important to take the time to find a GP that you are comfortable with and is willing to work with you.
It is important to understand that many doctors may only have a limited understanding about innate variations in sex characteristics. The information that they come across during their study is likely focused on diagnosis and medical intervention, rather than your experiences of being intersex. Knowledge and understanding of intersex variations, how they arise and how they affect people, has also changed a lot in the last few decades and is continually evolving. Having good information to hand over and a clear idea of your personal boundaries can start to address some of these issues. Having someone you trust attend the first appointment you have with a new doctor is also a good idea.
had the same doctors growing up, you should be able to get information from them. If you’ve been managing your scripts or tests for a while now, you should have that information to hand.
Information about your variation in sex characteristics can be challenging to come by. It’s worth bearing in mind that information that is written by doctors for other doctors can be very complex or distressing. How people talk about intersex variations online can vary a lot as well. Some sources of information may get some of the basic facts right but might understand the experience of that variation quite differently from the way you do or make inappropriate assumptions. It’s also worth bearing in mind that diagnostic language can change significantly over time. While the internet has been able to create a wealth of accessible information about intersex, you may find it useful to talk to peer workers or community organisations that are familiar with variations.
Finding knowledgeable adult services can be challenging. You may like to contact the pediatric services that you’ve engaged with as a child and ask them for a referral onto their equivalent adult service. Community health organisations and peer support groups maintain information on referrals or recommendations. Most specialists are accessed through a GP, so it is important to take the time to find a GP that you are comfortable with and is willing to work with you.
It is important to understand that many doctors may only have a limited understanding about innate variations in sex characteristics. The information that they come across during their study is likely focused on diagnosis and medical intervention, rather than your experiences of being intersex. Knowledge and understanding of intersex variations, how they arise and how they affect people, has also changed a lot in the last few decades and is continually evolving. Having good information to hand over and a clear idea of your personal boundaries can start to address some of these issues. Having someone you trust attend the first appointment you have with a new doctor is also a good idea.
How Parents Can Help
Parents can be one of the best sources of information you may have access to. As innate variations of sex characteristics are better understood today, there’s a good chance your parents had access to a good amount of information at the time you were diagnosed with a variation. Some parents might even keep records and correspondence from that time in your life, as well as more recent scripts and test results if that is relevant to your variation and how it’s been treated.
It’s good to be direct and clear with your intention. Focusing on getting the information you need because you want to take control of your healthcare is something that your parents should want to help you with. If you find that discussions keep getting caught on the challenges your family has faced, and negative feelings associated with those challenges, it can be helpful to engage with a mediator or counsellor to help facilitate the conversation.
How Doctors Can Help
Your primary physician, whether it’s a GP or paediatrician, should be willing to take the time to provide any information that you need. It may be worth planning an appointment with them after you have made your plan so that you can make sure that you ask for everything that you need to establish a care plan. It’s not only worth asking them for copies of any medical records they have, but if they know where else you might be able to follow up for more information.
It is important that when you are working with a doctor that they are respectful of your experiences and boundaries. They should use language that you’re comfortable with using yourself. Your doctors are there to help you find the information you need and to understand it. A good doctor will seek out consent before any examinations or tests and accept no for an answer. Most importantly, doctors should support the decisions you want to make about your own body, without trying to force you to accept medical procedures you don’t want.
Transferring your medical records to an adult service
In New South Wales, Victoria and the Australian Capital Territory your childhood medical records are kept until you turn 25 years old, according to the relevant state and territory privacy laws. If you live or received care in a different state or territory, you can check how long your childhood medical records are kept for here.
When you move from a paediatric healthcare service to an adult service you can request that your records and files be transferred over to your new provider. This will usually involve completing a form and a small administrative fee. It is a good idea to request your records be transferred to a new provider so that you can keep a record of your previous medical history and anything that may be relevant to your current and future care.
Using My Health Record
Once you turn 14 you are able to create your own My Health Record account at any time. This is a secure, digital online record that keeps all of your medical information together in one place. Once you are 14 you can manage this record on your own, remove files and control who can view and access your account. If you don’t want this account you can also choose to cancel it and have all of the information deleted.
If you already have a My Health Record account once you turn 14 your parent or guardian who was managing the account will be removed and you will be in charge of the account. If you want to, you are also able to choose to add a person like a parent or guardian back onto your account to help you manage it.
If you had a My Health Record account as a baby all of your information will already be on the account including any growth charts, achievement and development records, health checks, vaccinations, allergies, medications or surgeries and procedures you have had that was added to the account.
Having a My Health Record account means that you will not lose access to any of your medical files and that your childhood medical history can be viewed by your adult care provider/s in future. If you have just created a My Health Record account it will not have your old childhood information included.
Instead if you want this information you will need to request it from your original doctor or have them prepare a shared health summary. This document details your previous health information, diagnoses, medications, allergies and test results, and can be added to your record. You can also add up to 2 years of information from Medicare such as any vaccinations or medications you have had in that time.
Finding Support
Intersex Support Organisations
interLink – www.ilink.net.au
InterAction for Health and Human Rights – https://interaction.org.au/ – Information and Advocacy
Intersex Peer Support Australia – https://isupport.org.au/ – Peer support
- +61 7 3017 1724
- info@ilink.net.au
- PO Box 1372 Eagle Farm QLD 4009
JOIN THE LINK-UP MAILING LIST
InterLink acknowledges the Traditional Owners of the lands on which we work and pay our respects to Elders past, present, and emerging. We recognise that soverignty was never ceded and honour the continuation of Aboriginal and Torres Strait Islander connection to land, waters, and culture. We celebrate the rich diversity within our communities, extending our respect to all First Nations peoples.