For us, cancer is personal. From Diagnosis: Taking the next step

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1 For us, cancer is personal From Diagnosis: Taking the next step

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3 Contents Introduction About Icon Cancer Care The next step, and beyond What can I expect at my next visit?... 4 What should I bring to my treatment appointment?... 4 Making subsequent appointments... 4 How are my appointments, treatment and medications covered and billed? Specialist or consultation fee... 4 Treatment fees Pharmaceutical fees... 4 What to expect during treatment... 4 After-hours and emergency information... 5 Patient resources Special patient services... 6 Clinical trials Apherisis... 6 Stem cell collection... 6 Lymphoedema... 6 Your centre information... 7 Contact information... 7 Centre hours... 7 Amenities Public transport and parking... 7 Café Pharmacy Paying your account... 7 Private health insurance... 7 Pre-Admission Clinic information sessions... 8 Support services... 9 Protecting your privacy Our service commitment...14 Notes

4 Introduction This booklet has been created to help you take the first step from diagnosis to treatment. This is the time when patients and their families can feel the most overwhelmed. It s likely you have many questions: What now? What should I be asking my doctor? What are the next steps? How can I begin to make sense of all of the information available to me? While a cancer diagnosis can be confronting for patients and their families, we believe the right support can make things easier. From our friendly and caring staff to our comprehensive patient information, we aim to make all aspects of diagnosis, care and treatment as supportive and seamless as possible. We welcome you and your family to Icon Cancer Care Southport, where we aim to offer you the highest level of care and support. 2

5 About Icon Cancer Care We re Australia s largest private provider of cancer care, managing more than 73,000 patient visits each year across our day hospitals, with the support of more than 70 doctors. We are dedicated specifically to cancer care. This single focus means there are no competing priorities, ensuring all of our capability, resources, processes and procedures are dedicated to providing exceptional care to cancer patients and their families. We are proud to work with some of the best cancer care clinicians in Australia, with many of our doctors recognised internationally in their field. From our doctors to our day hospital staff, we are truly cancer care specialists. For more information about us, visit From our doctors to our day hospital staff, we are truly cancer care specialists. 3

6 The next step, and beyond Understandably, many patients feel unable to take in all of the details of their diagnosis when they first receive the news. It s possible, too, to forget the details and feel as though you don t have a full understanding of your diagnosis. While you should feel free to ask questions during any of your visits to Icon Cancer Care, the next visit provides an excellent opportunity to discuss any of your personal research and gain a better understanding about any aspect of your diagnosis, pathology reports and treatment. What can I expect at my next visit? Your next visit to Icon Cancer Care may be for further consultation with your specialist to develop your treatment plan, to attend our Pre-Admission Clinic information session or for your first treatment. Whichever the purpose of your visit, please go to the reception area where our medical receptionists will help you. They will confirm your personal details and make any health insurance and billing arrangements. A family member, carer or friend is welcome to accompany you when you visit the centre. What should I bring to my first treatment appointment? On the day of your first treatment, and all treatments, please go to the reception area where our medical receptionists will direct you. At your first treatment, you should also bring any regular medications that you are taking or your printed medication history that is available from your local pharmacy or doctor. Please feel free to bring a book, magazine and/or an ipad to pass the time during your treatment. You may also find it useful to bring extra clothing for warmth, such as a jacket, cardigan or scarf, until you get a feel for how the treatment will affect you. Making subsequent appointments Further appointments with your specialist or for treatment can be made with our medical receptionists at each visit, or you can phone Icon Cancer Care Southport on (07) The appointment times for your treatments are allocated according to the required treatment length. If you are unable to attend your appointment, please let your specialist s receptionist know as soon as possible so that we can work with you to arrange another suitable time. How are my appointments, treatment and medications covered and billed? Specialist or consultation fee In most instances, the specialist fee will be charged directly to your health fund. Your health fund will forward the payment directly to the centre and this will be credited to your account. While some doctors do not charge a gap fee, others may charge more than the Medicare Benefits Schedule (MBS), meaning you will be required to pay a gap fee depending on your level of cover. Our medical receptionists will let you know in advance if you have any out-of-pocket costs. If your specialist doesn t have arrangements with your health fund, you will need to settle the account on the day of service. Treatment fee There are no gap fees for privately insured patients undergoing chemotherapy or haematological treatments at our centres. At the time of your treatment, we will let you know of any excess that may apply to your health insurance cover. Pharmaceutical fees Generally, pharmaceutical drugs related to your treatment are funded through your health fund. Pharmaceutical drugs comprise both Pharmaceutical Benefit Scheme (PBS) subsidised drugs and non-pbs subsidised drugs. Please note that some non-pbs subsidised drugs may not be covered by your health fund. In these instances, our Clinic Manager or a Pharmacist will discuss payment arrangements with you. Medications not directly related to your treatment can also be purchased through our pharmacy. These medications will be invoiced directly to you by the pharmacy and cannot be claimed for reimbursement by Medicare or your health fund. Dressings and bandages provided upon discharge will be invoiced separately by the day hospital these items cannot be claimed for reimbursement either by Medicare or your health fund. Take home or discharge medications are also not included in the day hospital treatment cost. What to expect during treatment One of our experienced registered nurses will be responsible for your care during your treatment at our centre. They will give you information about your treatment and are available to discuss any concerns or questions you may have. 4

7 Our receptionists or nurses will let you know the approximate time your treatment will take. Light refreshments will be provided throughout the day. When it s time to start your treatment, an intravenous (IV) drip will be inserted by one of our experienced nurses. A blood test may also be taken at this time. You may need to wait for blood results prior to your treatment to ensure your blood counts are at a satisfactory level. Depending on your chemotherapy treatment, you may be given anti-nausea medication either via your drip or orally before receiving treatment. After-hours and emergency information The majority of specialists can be contacted during normal centre hours on After hours: If your temperature > 38 C or other symptom/s require urgent attention, please present to Pindara Emergency Centre, Allchurch Avenue, Benowa. In the event of an emergency please call 000. You may also receive drugs that make you drowsy during your treatment. We suggest having a family member or friend drive you home, as driving is not advisable. 5

8 Patient resources Our patient resources have been designed and written to help patients and their families. However, they are by no means conclusive. We encourage you to ask questions of your doctor, nurses and pharmacists, who are there to support you. Our nurses may give you brochures and/or information sheets that are relevant to your diagnosis or treatment. These, along with some useful website links, can also be found at We hope you find this additional information helpful. Special patient services Icon Cancer Care offers a full range of treatments for people diagnosed with cancer and haematological conditions. We have extensive experience in caring for patients requiring therapeutic apheresis or stem cell collections, or for those with lymphoedema. We can also offer some patients emerging treatment options through clinical trials. Clinical trials Through Icon Cancer Foundation, Icon Cancer Care aims to give patients and clinicians access to new and emerging advances in cancer treatment. Clinical trials not only lead to significant advancements in cancer care, but also allow patients to receive additional treatment options, beyond standard care. Icon Cancer Foundation is a registered charity made up of specialist research nurses and trial co-ordinators. With our participating doctors and through partnerships with pharmaceutical companies and research organisations big and small we manage and coordinate first-class clinical research trials both nationally and internationally. For more information about Icon Cancer Foundation s clinical trials, please speak with your specialist or visit Apheresis Icon Cancer Care has been offering apheresis services since 1997, including Therapeutic Plasma Exchange (TPE) and Stem Cell Collection (SCC) in both day-only and inpatient environments. During an apheresis procedure, a component of the blood that contributes to a disease state, such as platelets or plasma, is removed using a special cell separator or apheresis machine. Our trained apheresis care coordinators, under the supervision of our specialist medical practitioners, perform all apheresis procedures and are focused on ensuring optimum patient safety, comfort and treatment. For more information about apheresis, please speak with your specialist. Stem cell collection In some cancers, such as certain haematological disorders, stem cells can be collected and stored in case patients require a stem cell transplant later on. Icon Cancer Care is experienced in caring for patients requiring stem cell collection and works closely with hospitals and pathology services to ensure patients are given seamless care. Our qualified care coordinators manage and facilitate the mobilisation, collection and storage of a patient s stem cells, while care is under the supervision of the patient s specialist. For more information on stem cell collection, please speak with your specialist. Lymphoedema Icon Cancer Care provides a Lymphoedema Treatment Clinic at Chermside. Specialised nurses and allied health professionals treat and manage lymphoedema, a condition where excess fluid causes swelling in the body. Secondary lymphoedema can occur following surgery, radiotherapy, trauma or other damage to the lymphatic system following treatment for cancer. The Lymphoedema Treatment Clinic teaches patients about early intervention and how to self-manage and take control of their lymphoedema. An interdisciplinary team of health professionals, including medical and nursing staff, physiotherapists and occupational therapists, are involved in all programs. For more information, speak with your doctor or call Icon Cancer Care Chermside on (07)

9 Your centre information Contact information Icon Cancer Care Southport Premion Place Level 9 39 White Street (Cnr Queen and High Streets) Southport QLD 4215 Centre hours The Centre is open Monday to Friday, from 8:00am to 5:30pm. P F Amenities Public transport and parking Regular bus services operate between Southport and all areas of the Gold Coast stopping in Scarborough Street at the Australia Fair Shopping Centre entrance. Icon Cancer Care Southport is situated only a few minutes by taxi or less than 500 metres if walking from Australia Fair. There is a taxi rank at the bus station. For public transport information, timetables and maps visit Free parking is available on Level 4 of Premion Place. Entrance is via White Street. Café Premion Coffee is located on level one of Premion Place and offers snacks. Pharmacy Our pharmacy partner can dispense all medications relating to your treatment. They can also process prescriptions for other medications. Smoke-free environment For your comfort the centre has a no smoking policy. Paying your account You can pay by cash, cheque, EFTPOS or any of the major credit cards. Account enquiries can be made Monday to Friday 8:00am to 5:30pm on Private health insurance Icon Cancer Care Southport has contracts with most major health insurance funds. The centre will claim directly from your health fund for your treatment. Your health fund will then send the payment directly to the centre to be credited to your account. Payment will be required on the day of treatment if you have an insurance excess, co-payment, basic cover or no private health insurance. Patient admissions will provide you with an estimate and seek your consent to any financial arrangements. 7

10 Pre-Admission Clinic information sessions The beginning of treatment can be an uneasy time for patients and their families. However, receiving information about your chemotherapy treatment, the possible side effects and the lifestyle implications can be reassuring. We aim to provide you easy access to information and support through our Pre- Admission Clinics. The Pre-Admission Clinic sessions are held weekly and are a complimentary service extended to patients, family and carers. The Pre-Admission Clinic sessions are conducted in small groups and facilitated by a nurse. During the preadmission process you will have the opportunity to discuss with them your concerns or questions. You should allocate approximately 2 ½ hours for this session. Unfortunately, due to space constraints, only one carer may accompany you to the Pre-Admission Clinic. If you have any questions please do not hesitate to contact our friendly staff. My Booking for the Pre-Admission Clinic: Icon Cancer Care s Pre-Admission Clinic sessions have been designed to complement the information you receive from your doctor. We aim to: improve your knowledge of chemotherapy treatments and possible side effects reduce possible anxiety about your chemotherapy treatments help you feel more in control and dispel any myths provide information on account procedures. During the sessions we: explore how chemotherapy was developed and how it works discuss how chemotherapy is given and how often discuss the potential side effects of chemotherapy treatments and how to manage, minimise or prevent them discuss the services available at Icon Cancer Care. By the end of the session, we hope you will have a greater understanding of chemotherapy treatment, how to manage the potential side effects and be more familiar with Icon Cancer Care Southport s facilities. The Pre-Admission Clinic sessions are conducted in small groups and facilitated by a nurse. At the session, participants: Date may bring along a family member, carer or friend have the opportunity to ask questions in a non-clinical environment gain further information can share with others experiencing similar issues or concerns. For more information or to register for a session, please phone (07) Time 8

11 Support services for patients and their families A number of services are available to you and your family that may provide support and assistance during your treatment. Icon Cancer Care runs regular pre-admission information sessions to provide you and your family with information regarding treatment. In addition, we provide a comprehensive treatment program for patients with lymphoedema at Icon Cancer Care Chermside. The program focuses on teaching patients how to self-manage and take control of their lymphoedema. Icon Cancer Care also works with a number of community groups that offer a range of support services. The Leukaemia Foundation of Queensland Taking Control This general program is designed to help with diagnosis, treatment and recovery for leukaemias, lymphomas, myeloma and related blood disorders. This workshop addresses the health and wellbeing of patients, families and carers, and includes presentations from clinical staff, dietitians, exercise doctors and more. Getting Back into Life Designed as a follow up to Taking Control, this program addresses issues experienced by patients and their carers once treatment has been completed. Caring for the Carer This four-week program has been developed and designed especially for carers. The program provides a great opportunity for carers to meet each other, share and exchange ideas, look at coping strategies and enjoy a little pampering. Living with Grief Providing family grief counseling, facilitated by a trained psychotherapist and grief counsellor, Living with Grief is an interactive six-week program designed to assist individuals who have suffered the loss of a loved one. Patient Education Evenings A range of disease-specific programs is available for people living with acute leukaemia, chronic leukaemia, lymphoma, myeloma, myelodysplasic syndrome and amyloidosis. These programs provide tailored information and support and may include clinician guest speakers to provide updates on diagnosis and treatments. Survivors Program Specifically designed by the Leukaemia Foundation for patients following treatment. Accommodation For patients and their family who live outside of the Brisbane area. All programs at the Leukaemia Foundation are provided free of charge. Cancer Council Queensland The Cancer Council Helpline A telephone counselling service staffed by trained professionals (nurses and psychologists) who have knowledge about cancer and cancer care. They are there to help you with information, support and referrals to services throughout Queensland. The Cancer Council Helpline operates from 8am to 8pm, Monday to Friday. Helpline Wig and Turban Service The Cancer Council also provides a wig and turban service for people who have lost their hair as a result of cancer treatment. The Cancer Council Queensland can also help with financial assistance, equipment loans, accommodation for people who need to travel for treatment and transport. Look Good Feel Better The program offers workshops to teach women and men simple grooming techniques to assist with appearancerelated side effects of chemotherapy and radiation treatment, such as hair loss and skin changes. Look Good... Feel Better is sponsored by the Cosmetic, Toiletry and Fragrance Association of Australia and supported by the Queensland Cancer Fund. Specially trained, volunteer beauty consultants run the workshops. These volunteers use a 12-step program demonstrating how make-up, wigs and other accessories can help restore self-image and confidence. Workshops are held throughout Brisbane. Our staff can assist you with the dates, or you may contact Cancer Council Qld on Breast cancer support groups Wesley Hospital Kim Walters Choices Program The Wesley Hospital Kim Walters Choices Program (Choices) is a free community service, regardless of where treatment has been undertaken, offering support for those diagnosed with breast cancer and women diagnosed with gynaecological cancers, and their families. You are welcome to drop in at any time. Group for Women with Advanced Recurrent Breast Cancer Led by a psychiatrist and a social worker, this group provides access to psychological support, particularly group support, to women who have special needs and challenges to face. Women are encouraged to attend in person, or teleconference into if living in rural or remote communities, a one-hour weekly meeting. 9

12 Chicks in Pink Chicks in Pink was originally formed by the daughters, granddaughters, sisters, nieces, friends and supporters of women who have been diagnosed with breast cancer, to be a fundraising support to the Mater Breast Care Unit. Their mission is to raise funds, which allow them to have positive, significant and real impact on people who are affected by breast cancer at The Mater. Prostate Cancer Foundation of Australia The Foundation is a national organisation acting to reduce the impact of prostate cancer on Australian men, their families and the community. It aims to represent the interests of all men diagnosed with prostate cancer through a nation-wide network of affiliated support groups, with a special emphasis on raising money for research into the disease. The Foundation operates support groups throughout Queensland. Support groups for young people with cancer Red Kite An Australian charity that supports children, young people and their families through cancer by providing emotional support, financial assistance and educational services. Canteen Supporting, Developing and Empowering Young People Living with Cancer Canteen provides a high-quality peer support network for young people living with cancer, and their brothers and sisters, who share experiences, have fun, offer resources and promote understanding, well being and leadership. Activities include camps, fun day outs and group support. Camp Quality Camp Quality is a non-profit organisation that provides camps and a year-round support program for children and their families. The program provides children with the opportunity to try new and old activities, make new friends and gain memories that will last forever. Seize the Day Study These are financial grants offered to Queenslanders aged between 16 and 21 who have been diagnosed with cancer or have had an immediate family member diagnosed with cancer. Applicants must be planning to undertake or continue post-secondary school education at university, TAFE, tertiary college or vocational training centre. For more information contact the Cancer Council Qld. Other useful services Carers Queensland Carers provide unpaid care and support to family members and friends who have a disability, mental illness, chronic condition, terminal illness or who are frail. The purpose of Carers Queensland is to improve the lives of carers by providing important services such as counselling, advice, advocacy, education and training. Australian Lung Foundation or Lymphoedema Association Queensland or Breast Cancer Network or National Breast and Ovarian Cancer Network National Breast and Ovarian Cancer Centre (NBOCC) is Australia s national authority and information source on breast and ovarian cancer. Funded by the Australian Government, NBOCC works in partnership with health professionals, cancer organisations, researchers, governments and those diagnosed to improve outcomes in breast and ovarian cancer. 10

13 Useful websites Cancer Organisations Cancer Council Australia Cancer Institute NSW Cancer Council QLD Cancer Council SA Cancer Council Victoria Leukaemia Foundation Lymphoma Australia Health Funds Private health insurance AHM Australian Health Management Australian Health Service Alliance Australian Unity Health Limited BUPA (MBF) Commonwealth Bank Health Society CUA Health Fund Defence Health Federation Health Health Care Insurance Ltd Health Partners Lysaght Peoplecare Manchester Unity Australia Ltd Medibank Private Navy Health Phoenix Health Fund SGIC Health Teachers Federation Health Teachers Union Health Transport Friendly Society Government Centrelink Department of Health and Ageing Department of Veterans Affairs Private Health Insurance Ombudsman Private Health Insurance Administration Council Other Australian Council on Healthcare Standards (ACHS) Australian Healthcare and Hospitals Association Australian Private Hospitals Association Macmillan Cancer Support The Medical Journal of Australia OncoLink Quackwatch 11

14 Protecting your privacy Icon Cancer Care respects and upholds your rights to privacy protection under the National Privacy Principles contained in the Privacy Act The following information describes how Icon Cancer Care manages any personal information we have about you. What personal information does Icon Cancer Care collect? We may hold the following information about you: name, address, telephone numbers next of kin and marital status date of birth address occupation health/medical information general practitioner and referring doctor information health fund information Medicare/Department of Veterans Affairs/Pension/ Healthcare card numbers transaction details associated with services that have been provided to you information provided by other healthcare providers (e.g. pathology and X-ray reports) any additional information provided by you to Icon Cancer Care (e.g. surveys). Each time you attend Icon Cancer Care, information about you is updated. We aim to keep your information accurate and up-to-date to ensure the best possible care and service can be provided. What happens if I do not agree to provide personal information? Failing to provide personal information may limit our ability to provide optimal health care and services and/or to submit a claim to a health fund, Medicare or other payors. What does Icon Cancer Care use my personal information for? We use your personal information to: assist your treating doctors, nurses and other allied health professionals (e.g. pharmacists) in providing medical treatment and care to you access pharmaceutical drugs and specific treatments process private health fund claims provide information to medical practitioners, registered nurses and other allied health professionals (e.g. pharmacists, physiotherapists) who may be involved in your ongoing treatment and care benchmark and provide clinical indicator reports in a de-identified form provide data in a de-identified form to government agencies in compliance with numerous legislative requirements, to the Private Hospital Data Bureau and to the Cancer Registry evaluate and improve the services we provide to all patients (e.g. audits and research activities) assess eligibility for research studies conducted by Icon Cancer Foundation. 12

15 What about access to my personal information? We will not disclose personal information about you, except on a confidential basis to agents that we use in the ordinary operation of our business, if required by law or in circumstances where you have given permission. Other hospitals or new treating doctors that you visit may contact Icon Cancer Care to obtain information about you so that they can provide the best possible care. We would ask them to provide written authorisation from you before releasing information to them. However, in an emergency situation we will release information about you to facilitate your care. Apart from what is described above, no personal identifiable information will be released without your prior consent. How do you store my information? We store personal information: contained in electronic records in a secure environment contained in paper-based and other hard-copy documents in secure dedicated storage facilities after the statutory retention period (generally 10 years after last attendance) Icon Cancer Care will destroy paper-based personal information collected. Do I have access to my personal information? The Freedom from Information Act 1982 sets out your right to access your medical record and personal information held by Icon Cancer Care. If you would like access to information collected about your care, please ask a staff member or contact the Clinic Manager. The request process will require you to complete an application form Request to Access a Patient Record and a small fee may apply. Once you have completed the form forward it to our Clinic Manager. Where Icon Cancer Care holds information that you are entitled to access, and to ensure that your information is appropriately maintained, Icon Cancer Care prefers the collection of information by you in person. If you identify information that is incorrect or incomplete, you may request amendment to it. Icon Cancer Care will consider if the information requires amendment. Your information will be amended accordingly and the changes confirmed with you if Icon Cancer Care agrees that it should be amended. If Icon Cancer Care does not agree that there are grounds for amendment, then Icon Cancer Care will add a note to your information stating that you disagree with it. Who do I contact if I have any questions? Any questions about this policy, or any complaint regarding treatment of your privacy by Icon Cancer Care, should be made to our Clinic Manager. Miscellaneous In this policy, personal information and health information have the same meaning under the Privacy Act. What should I do now? You will be asked to sign an acknowledgement that you have received this information. If you have any questions, please ask our helpful staff who may refer you to the Clinic Manager (Privacy Officer). If you believe that personal information we hold about you is incorrect, incomplete or inaccurate, then you may request amendment to it. 13

16 Our service commitment Your comfort and satisfaction is important to us and, as such, we are committed to ensuring every aspect of our service is of the highest calibre. Icon Cancer Care strongly supports the Australian Charter of Health Care Rights, which describes the rights of everyone using the Australian health system, and the Australian Government s Private Patients Hospital Charter, which outlines the rights and responsibilities of a private patient in a public or private hospital. In addition to these rights, which are essential to make sure that health care is safe and of high quality, we strongly encourage you to speak with our friendly staff should any aspect of our service not meet your expectations. Complete details of our contact information are included on the back of this booklet. For more information, visit: Speak with our friendly staff should any aspect of our service not meet your expectations. 14

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20 All correspondence to: PO Box 1879 MILTON QLD 4064 P F iconcancercare.com.au Icon Cancer Care locations Adelaide First Floor, Tennyson Centre 520 South Road Kurralta Park SA 5037 P F South Brisbane Level 5, Mater Medical Centre 293 Vulture Street South Brisbane QLD 4101 P F Townsville 9 13 Bayswater Road Hyde Park QLD 4812 P F Chermside Level 1, Chermside Medical Complex 956 Gympie Road, Chermside QLD 4032 P F Southport Level 9, Premion Place, 39 White Street (Corner Queen and High Streets) Southport QLD 4215 P F Wesley Level 1, Wesley Medical Centre 40 Chasely Street Auchenflower QLD 4066 P F This information was current at the time it was published and is intended as a guide only. It is not intended to replace information provided by your doctor or nurses. Each patient is an individual and responses may vary. If you have any questions, please talk to your doctor or clinic nurse. For us, cancer is personal 18