Understanding the "Transition" to Adult Care for heart problems
Growing up?
As patients are getting older, they will be embarking on new challenges such as leaving school, getting a job, and going to university or TAFE. During this time of decision making it is helpful to discuss goals for the future and ideas for study or employment with family, friends and relevant professionals.
Just as adolescents are making these lifestyle choices, they are also making decisions about leaving the Royal Children's Hospital and the transfer of their health care to an adult facility. This will happen at around 18 or 19 years of age (usually about the time that they leave school).
We are encouraging these young people to learn more about their condition and to take more responsibility for their own health care.
Whilst many young people with a chronic illness or disability wish that their medical problems would go away, this is usually not possible, and they will continue to need medical care in adult life.
Some points for consideration when preparing for this transfer
- When attending a clinic in an Adult Hospital, the staff will expect patients to take as much responsibility for their own health care as possible and they need to be taking steps towards this;
- Young people will need to know about their heart condition, recognize the signs of becoming unwell and know what to do to obtain appropriate help;
- It is also important to think about what their health care needs as an adult will be and whom can best provide them;
- The adolescent / young adult may also want to consider what role he or she wants parents to play in their health care once this has been transferred? Now is a good time to start to talk about this.
The family General Practitioner (GP) has an important role to play in general health care and this will continue after specialist cardiac care has been transferred. It is therefore important that patients continue to stay in contact with them. The staff of the Royal Children's Hospital will keep the GP up to date with care up until this has been transferred to a new hospital.
You are not considered to be transferred until you have had your first appointment with your adult cardiologist and a history for you has been created in the adult hospital system. If you have any cardiac health issues prior to this, visit your GP or, if the issue is urgent and is out of normal working hours, attend RCH emergency department.
Please feel free to discuss these issues or any other concerns with the doctor at the Royal Children's Hospital, the Care manager and /or care coordinator.
Other members of the medical, nursing and allied health teams are also available to talk about this process of transition. Please talk to them at your next clinic appointment, or visit the Transition Website on www.rch.org.au/transition.
The following check list may help
Health Care Skills
By the time that care is transferred to an adult hospital patients should be able to "take control" of their own health requirements. They need to understand a range of matters pertaining to their heart and to have sufficient information to;
- Be able to describe their condition or disability
- Be aware of the existence / location of medical records, diagnosis information, allergies
- Maintain personal health record (this may be hard copy or electronic)
- Prepare questions for doctors, nurses, therapists
- Respond to questions from doctors, nurses, therapists
- Know medications and what they're for or carry's information in wallet.
- Get a prescription refilled and be responsible for taking own medication/s
- Responsible for own treatment regimes
- Keep a calendar of doctor, dentist appointments
- Know height, weight, birthdate
- Know health emergency telephone numbers
- Know Medicare/medical insurance details
- Be able to obtain sex education materials/birth control info as needed
- Have genetic counseling if appropriate
- Know about how drugs/alcohol affect illness/disability
- Make contact with appropriate community advocacy organization
Questions to think about before transfer and to discuss with the cardiologist at RCH?
- Has the transfer been discussed between family and Doctor? Have there been an agreed date / plan for this transfer?
- Will there be an opportunity to have a site visit to see the new hospital and to meet with the adult health care team?
- Who will arrange the initial outpatient appointment at the adult unit within the next six months?
- Have all the medical, surgical or allied health professionals, involved in the patient's care, been informed of the planned transfer?
- Have other family members been informed of the transfer?
- The patient (and family) needs to have a name and contact number of a person to contact at the adult hospital who knows about them and has access to details about their cardiac history.
Transition Support Service