What will happen in the appointment? How long will it take? Family history Draw their attention to any feature taken to help diagnosis, or for research Clinic waiting time The clinical geneticist or the genetic you may think is relevant. They may purposes. The doctor must ask you to Sometimes appointments can take counsellor will ask you about your also wish to examine the parents sign a permission form to have photos longer than expected. You may have family’s health history and record it in or other family members present to taken, and it is OK to ask what these to wait up to an hour. a genetics file. They may ask about compare family features. If your will be used for, or to say NO. examination requires undressing and The appointment your relatives, including their names, Blood dates of birth and death, causes of you would prefer a doctor of the same Each appointment usually takes sex as you, do ask. You may be asked to have a blood approximately 1 hour. You may be death and general health. test following your appointment. This Photos asked to have a blood sample, x-rays, Examination can usually happen within the same photos taken following your appoint- The clinical geneticist may wish to Sometimes, with your permission, building. ment, so it is best to allow a total of physically examine you or your child. photos of you or your child will be two hours. What are my rights? Respect and Autonomy Protection of information Informed choice purpose, if you need translation. You have a right to expect that you Genetic Health is committed to pro- Genetic Health is committed to facili- If you are unclear why you are and your family members will be tecting client privacy and confidential- tating informed choice. Therefore being asked for specific informa- tion, ask for clarification. treated with respect. Genetic Health ity. We have developed policies for Ask for clarification if you are not is committed to providing you with the protection of client privacy in sure of the meaning or implications Taking tests accurate information and support to compliance with privacy legislation. of what was said Clarify what is involved and how enable you to make the best decisions To obtain a copy of the client pri- If you are still not sure, ask them to long test results take for yourself at the time. vacy policy pamphlet contact Genetic say it another way. Ask how your results will be Health Services Victoria, on (03) Ask for information in writing which returned to you and do state your 8341 6201 or visit our website, you can read afterwards. Hospitals preference www.genetichealthvic.net.au have medical translators for this What will happen afterwards? What if I am not satisfied? Waiting for results a life-altering experience. Support is of Victoria facilitates an informa- Opportunities for Improvement You can ask when you can expect available if you need. tion, support and advocacy network, If you are concerned or not satisfied to receive the results, and how you Living without a diagnosis which empowers people to overcome with the consultation feel free to con- will get them (e.g. by phone or in genetic challenges. You can contact tact Genetic Health Services Victoria This can be frustrating for some peo- person). the GSNV on (03) 8341 6315 on 8341 6201. Your written com- ple not having a diagnosis may lead Voice/TTY or firstname.lastname@example.org plaint can be addressed to Professor Written information them to other services or more ques- tions about their health. You have a choice Agnes Bankier, Director. A letter will be written summarising your appointment and sent to you and Support groups If you see a doctor at clinic and do your referring doctor. not feel comfortable seeing that partic- The Genetic Support Network of ular doctor again, you can request to Living with a diagnosis Victoria can put you in touch with the see someone else at that clinic, or at To be given a diagnosis that you have most relevant group for you and your another clinic at a different hospital. a particular genetic condition can be family. The Genetic Support Network www.genetichealthvic.net.au Some frequently asked questions Genetic Health is committed to providing quality health care. This booklet aims to give you an overview of the types of services Genetic Health provide and what you and your family can expect Why do people come to genetics? Some examples of reasons for referral For screening and/or diagnostic tests The genetic health team may use a Not all of this information will lead to include: before or during pregnancy. combination of information about: a diagnosis, and sometimes there is no For information on a particular To try to find out the underlying Your family’s history blood test that can be done, or the cause of a collection of signs and results of a blood test are not useful in genetic condition and the likeli- symptoms in a person. Your own health history hood of other members of a family getting to the cause of the problem. Although genetic diagnosis is available A physical examination of the per- being affected. son that is affected, and perhaps In some instances, even after a thor- for an increasing number of conditions, their family members ough investigation, there may not be For information on testing for adult onset conditions such as Huntington technology is not at a point yet where an answer to what the underlying every condition can be identified, so it Results of x-rays, or blood tests Disease before symptoms appear. cause of a condition is. This may be is important to be aware that you may that show a person’s genes or To find out if a person is a carrier chromosomes and chemicals in the frustrating for the person or family of a gene that could cause a genetic not get a diagnosis. involved. condition in future generations. blood. How should I prepare for my appointment? What should I bring? Ask questions about family health Make a note of things you want Information about family history Friend for support history to ask Your (or your child’s) medical his- A friend could be your preferred sup- Ask both sides of your family about Leading up to your appointment, tory port person and can help you to recall your relatives’ health; death, miscar- write down questions as they occur to It can help to keep the whole medi- information that was discussed in the riages, ages, and even photographs if you, and bring these along. A written cal history together in one folder and appointment, or you may choose to possible, as these can often provide list will help to make sure your ques- bring it to every appointment. bring a tape recorder. clues. tions are covered. Interpreters Family member Do I have to pay Bring your child's Health Centre book If English is not your first language, A family member can provide moral Your consultation is free of charge. You and available records as appropriate. support, and help with information the hospital you are visiting is able to may need a test which is not currently about family health history. arrange an interpreter. available in Victoria, in which case you may be asked to contribute or pay for the test. Where are genetic clinics held? Clinic Location Clinic Specialty Contact details Clinic Location Clinic Specialty Contact details Albury/Wodonga General genetics Albury/Wodonga The Royal Melbourne Hospital General genetics Genetics Clinic Genetic Counsellor Cancer genetics (02) 6056 0451 Neuro-genetics (03) 8341 6201 Alfred Hospital Adult neuro-genetics Royal Children’s Hospital General genetics Cystic Fibrosis, Haemophilia (03) 8341 6201 Metabolic, Neuro-genetics Austin & Repatriation Hospital Cancer genetics (03) 8341 6201 Skeletal dysplasia Cystic Fibrosis Ballarat Genetics Clinic General genetics (03) 8341 6224 Huntington Disease (03) 8341 6201 Bendigo Genetics Clinic General genetics (03) 8341 6224 The Royal Woman’s Hospital Perinatal genetics Frankston Genetics Clinic General genetics (03) 8341 6201 General genetics (03) 9344 2121 Geelong Genetics Clinic General genetics (03) 8341 6224 Sale Genetics Clinic General genetics (03) 8341 6224 Mercy Hospital for Women Perinatal clinic Genetic Counsellor Shepparton Genetics Clinic General genetics (03) 8341 6224 (03) 9270 2394 St. Vincent’s Public Hospital Neuro-genetics (03) 8341 6201 Monash Medical Centre General genetics Traralgon Genetics Clinic General genetics (03) 8341 6224 Cancer genetics Neuro-genetics (03) 9594 2026 Warragul Genetics Clinic General genetics (03) 8341 6201 Peter McCallum Cancer genetics Warrnambool Genetics General genetics (03) 8341 6224 Cancer Institute Familial Cancer (03) 9656 1064 Who might I meet at the clinic? Clinic Co-ordinator who is training to be a clinical geneticist. to understand the medical information you (heart), orthopaedic surgeon (bones) or have been given and its effects on you and a dietician. The clinic co-ordinator’s role is to arrange Certified Genetic Counsellor your appointments and make sure things your family. A Genetic Counsellor is a fully qualified Students run smoothly while you are at the clinic. health professional who has specialist Social Worker Medical students, genetic counselling Clinical Geneticist training in genetics and counsellling and A social worker can provide emotional students or social work students may will help you to understand the medical support for you in your situation, as well occasionally ask to sit in on appointments. A Clinical Geneticist is a specialist doctor information you have been given and its as practical help in finding community If you are not comfortable with having (or consultant) who has spent many years effects on you and your family. resources to assist you. another person in the room, it is OK to studying genetics after training in another say no. speciality, such as paediatrics. Associate Genetic Counsellor Other specialists Fellow An Associate Genetic Counsellor is a Depending on the specific condition, the Ask to be introduced to all of the health professional who is in the process of genetics specialists may require the help professionals who see you, and make sure A genetics fellow is a fully qualified doctor completing their training and will help you of other specialists, such as cardiologist you know their names and their roles.
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