For Parents
Contents of this webpage:
On this site you will find a wide range of information and resources to assist you as a parent or carer at the time of your child's transition from paediatric to adult health services.
What is transition?
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Transition is a process which your son/ daughter will go through leading to the transfer of their care to an adult health care provider. It is a co-ordinated process including all departments at RCH involved in your son/ daughter's care and is a gradual process starting with discussions in early adolescence and the transfer occurs around 18-19 years of age, once your son/daughter has completed secondary school. You and your son/daughter will be encouraged to participate in the process and your son/daughter will be supported in learning new skills of independence and self management of their own health care in preparation for the move to adult care.
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There is information on this website on the processes of Transition or you can talk to your son/ daughter's treating doctor or any other staff at RCH.
How can I help my child prepare for transition?
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A planned transition process is vital for the healthy psychological development for young people. As parents/caregivers it is your role to assist your child to become, where possible, a happy, healthy, and competent adult who can manage their condition as best as they can.
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There are challenges for parents in 'letting go' of their son/ daughter and allowing them to develop independence and self management of their own health care. This can be done as a gradual process and a useful tool to use for this is the Health Care Skills Checklist (Word) which assists you and your son/daughter to prepare for Transition and Transfer to adult health care.
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Don't hesitate to ask questions - the staff at the Royal Children's Hospital are here to assist you.
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The timing of Transfer varies for each young person and there are steps involved in the transition process you can be aware of Easy Steps In Transition And Transfer To Adult Care
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You may like to help your son/ daughter, along with the assistance of a health care professional, develop their own MyHealth Passport. This is a wallet sized card they can have with all their health information to be used in an emergency or in any health appointments. This resource may help your son/ daughter to become more independent in managing and understanding their own health care. Click on the following link to create a passport MyHealth Passport or see further information in link For Patients. The key to allowing your son/ daughter to have control of their health is to empower them to know their health. It is suggested that young people take full responsibility to type their passports themselves with a health care professional assisting them with the information they require.
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Your son/ daughter can access the Transition Information Kit from this website as a helpful tool in the Transition process. See For Patients
Frequently asked question's for parents
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My child has an intellectual disability? Will she/he be transferred to adult care?
Yes. The only difference is that depending on the severity of your son or daughter's Intellectual Disability, some independent skills might not be reached. In this case you would continue to remain an advocate for your child at an adult hospital and to a greater degree. The whole family would undergo transition together in this situation.
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When do we need to move to adult health care?
Usually after the completion of Year 12, your son/daughter will be transferred in close consultation with you paediatric health team. Your son/daughter is considered transferred to adult health services after the first appointment at the adult service. Until then, continue to come to the RCH, including the RCH Emergency Department if needed.
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How can we get our son or daughter's medical history information from the RCH?
You should be given a summary ofﾠyour son/ daughter's medical history in a referral letter or Transition Record Summary (TRS) at one of your last consultations at the RCH to keep for your records. A copy of this summary will be sent to the adult health service, a copy will remain on your son/ daughter's medical history and a copy given to your son/daughter and your family. If you would like to access your son/daughter's medical history you will need to go through the Freedom of Information process to obtain this. Contact: Freedom of Information Office on 9345 5156 or 9345 5132 or e-mail:freedom.information@rch.org.au or visit their website:Clinical Quality and Safety, Freedom of Information
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We don't get along with our new doctor at the adult hospital. What can we do?
Seek guidance from your GP or paediatric team. Provided you have a summary of your son/daughter's medical history, it is in your and your son or daughter's hands to decide where you would rather be, whom you would rather see, etc. You have the right to 'shop around' to find the most suitable service.
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Should I attend appointments with my son/daughter at the adult hospital?
The aim is to try and foster more and more independence in your son/daughter within the limitations of their condition. Discuss this with your son/daughter. It is important to assist your son or daughter to develop skills to self manage their condition and enabling them to spend time alone with their health team is a good way to begin this process.
Key points to remember
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Transition to adult health services is a natural step for long-term RCH patients with chronic conditions
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Transition is a long-term process and should be carefully planned and begins in early adolescents from the age of 12 years.
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You and your son/daughter have a right to actively participate in the whole Transition process.
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Transition involves considering other aspects of your son/daughter's life, such as access to Centrelink benefits like a Health Care Card, Medicare Card, Private Health Insurance. Whilst a lot of this information is available for young people on this website, here are some relevant links for you to use to assist your son/daughter in looking at all aspects of transition
Parents and self-care
Caring for a person with a chronic illness or a disability can be a full-time job in itself. It is easy to forget your own needs, wants and goals which can be detrimental to your own well-being as a carer.
There are excellent resources available for parents caring for a child with a Chronic illness or disability. TheﾠAssociation for Children with a Disabilityﾠhave excellent resources, including a new book titled 'Helping you and Your Family' (dowload your free copy of the booklet in PDF). Another resource titled 'There's no such thing as a silly question' (download a free on-line copy in PDF) produced jointly by interACT, Very Special Kids and Gandel Charitable Trust, offers tips on how to keep life balance and look after yourself and the rest of the family while being a carer.
Some tips directly quoted from the book 'There's no such thing as a silly question" include:
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Keep as well as possible, to avoid minor illnesses which may add extra pressure to the family. Looking after yourself will better enable you to continue to look after others.
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Eat well-balanced meals where possible.
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Exercise regularly: walk, swim, or use equipment at home. Balance this however with rest whenever possible.
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Access respite options.
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Get adequate sleep whenever you can. Sleep deprivation may compound existing stress. You may be able to schedule some sleep time while someone else watches your child, perhaps a carer or your partner.
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Role sharing at home can allow each person time to attend to their own needs such as rest, work or leisure activities.
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Consider talking to other parents who are in a similar situation, as this may help to reduce feelings of isolation. You may also find support groups helpful, either on the Internet, or in the community.
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Spending time with friends is important for emotional well-being.
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List some achievable priorities for each day, week or month, or year. For example:
Daily: a 10-minute coffee break, a walk around the block...
Weekly: a visit to a friend, some time in the garden, a game of tennis...
Monthly: a manicure, an evening out with your partner...
Yearly: a weekend away, a trip to the snow, a bit family get together...
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Set aside some time to spend with your partner, your children, or your whole family, no matter how brief. Plan some fun things to look forward to. This will help to maintain the bonds within the family.
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Ask for help when needed.
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Accept support when offered, especially if it is helpful.
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Identify areas of life where you are overcommitted, and consider reducing your involvement or delegating tasks to relieve pressure.
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You may be eligible to apply to your local council for a Disability Parking Permit. This will enable you to use parking bays designated for people with disabilities.
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Take time out for yourself: retail therapy, pampering yourself, keeping a journal, craftwork, playing sport, catching up with friends.
Links for parents