Website links

Cancer information and support

Cancer types and treatments
Treatment Guidelines
Understanding tests and results
Complementary Therapies
Survivorship
Support
Cancer Prevention
Clinical Trials
Special groups (Aboriginal, Adolescents & Young Adults, Carers, Children, Culturally & Linguistically Diverse, Impact on families, Gay/Lesbian, Rural/Remote etc)
Specific Cancer Issues (ChemoBrain, Nutrition, Sexuality, Physical Activity, Anxiety/Depression, Asbestos, Advanced cancer, Rare Cancers, Work- cancer & careers, ... etc)
Palliative Care
Loss and grief
Financial issues
Shared health-decision making
Advocacy
Complaints

Cancer Resources

Advocacy Tools
Best practice cancer care
Cancer Screening in Australia
Cancer Organisations in Australia
Cancer Statistics
Cancer Initiatives, Policy and Planning

Understanding Your Rights This useful booklet by the Cancer Council NSW sets out what patients can reasonably expect, both from health services and themselves as they undertake the cancer journey. Order a copy by ringing the Cancer Helpline in any state around Australia ph:131120.

Cancer types and treatments

The sites listed below each provide information about many types of cancer, symptoms, treatments, clinical trials, coping with cancer, screening and diagnosing cancer. (The funding source for these sites is shown in brackets).

• CancerBackUp UK Cancerbackup's mission is informing, understanding, supporting - to give cancer patients and their families the up-to-date information, practical advice and support they need to reduce the fear and uncertainty of cancer (charity organisation).
• CancerHelp UK provides detailed patient information about specific cancers, symptoms, treatments, side effects and clinical trials (check out the 'Site Map'). It is part of Cancer Research UK a leading charity in the UK dedicated to cancer research. Other sections of the Cancer Research UK site are: Cancer & Research, Cancer Statistics, Cancer prevention (charity organisation).
• Cancer Buddies Network website has links to good sites to find information.
• CancerNetWork.com has comprehensive information from the textbook Cancer Management: a multidisciplinary approach, as well as information for patients: Myths and Facts.
• The Cancer Council New South Wales has booklets and online information (charity organisation).
• The Cancer Council SA provides information and links to local services, counselling and support groups (charity organisation).
• Better Health Channel Health and medical information for consumers, quality assured by the Victorian government (Australian government).
• American National Cancer Institute is a comprehensive site reflecting the Institutes role in coordinating cancer research programs on cancer prevention, detection, diagnosis, treatment, rehabilitation, and control (US government).
  
• Cancer.Net has comprehensive oncologist approved cancer information from the American Society of Clinical Oncology & The ASCO Foundation (US non profit professional organisation representing physicians who treat people with cancer)
  
• American Cancer Society provides information for consumers and health professionals. 'Choose a cancer topic' lists cancer types (charity organisation).
  
• Livestrong Cancer Support aims to help help you understand what to expect, what questions to ask (non profit organisation)
• National Comprehensive Cancer Network – provides information in alliance with the American Cancer Society. Excellent detailed treatment pathway documents are updated several times/year. You need to register to access these, but it is free. (Clinical professionals from 21 US cancer centres contribute to this not-for-profit alliance)
• National Comprehensive Cancer Network - consumer focussed information
  
• HealthInsite is an Australian government initiative to provide reliable health information (Australian government).
• Rare cancers - The Rare Cancer Alliance provides information about rare types of cancer or pediatric cancers, as well as basic information useful for all types of cancer. Check the site-map for an overview to good links.
• Additional resources for the 5 most common cancers in Australia: Prostate, Colorectal (Bowel), Breast, Lung and Melanoma.
  

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Treatment Guidelines

• The NSW Cancer Institute has detailed information about standard cancer treatment protocols used in Australia (and common side effects). You must register to access EviQ, but registration is free. Click on the Patients tab for, or the Medical Oncologist section has full details about each chemotherapy protocols administration, monitoring for adverse side effects, and evidence supporting each regimen. Another section of this site has resources for brain tumour patients, family and carers eg. anger management, memory loss.
• Clinician's Guide to Radiation Oncology (A surprisingly readable guide by the Royal Australian and New Zealand College of Radiologists).
• Guidelines for the Safe Prescribing, Dispensing and Administration of Cancer Chemotherapy aim to assist in the prevention of medication errors and to improve patient safety with respect to the treatment of cancer (Clinical Oncological Society of Australia).
• The National Comprehensive Cancer Network (NCCN) has Treatment Guidelines for Clinicians and pathways for care of cancers at different sites and stages. As these care pathways have been prepared by the American Cancer Society, there may be some differences in availability of treatments and Australian clinical guidelines.
  • These presentations highlight features of recently updated guidelines (you need to register for access this site, but it is free):
    • NCCN Colon and Rectal Cancers Guidelines Update
      Slide/Lecture Presentation, May 2009
      
      NCCN Kidney Cancer Guidelines Update
      Slide/Lecture Presentation, May 2009
• The Oncology Nursing Society (ONS) of America have a series of excellent “Putting Evidence into Practice” (PEP) Resources, updated in April 2009.
• Fatigue During and Following Cancer and Its Treatment
• Prevent, Manage, and Treat Chemotherapy-Induced Nausea and Vomiting
• Prevention of Infection
• Sleep-Wake Disturbances
• Prevention and Management of Constipation in Patients With Cancer
• Depression
• Cancer-Related Dyspnea
• Management of Oral Mucositis
• Chemotherapy-Induced Peripheral Neuropathy
• Anxiety
• Nursing Assessment and Interventions to Reduce Family Caregiver Strain and Burden
• Lymphedema
• Diarrhea
• 'Improving outcomes for patients’ guides
  The Improving Patient Outcomes PDF guides (under the 'Reports' heading of the Cancer Learning site) were produced in the UK and relate to the management and coordination of care of cancer patients. Tumour specific guides are included for Brain and Other CNS Tumours, Sarcoma,  Skin Tumours including Melanoma, Breast Cancer, Colorectal Cancers, Haematological Cancers, Head and Neck Cancers and Urological Cancers, with guides also included for Children and Young People with Cancer and Supportive and Palliative Care for Adults with Cancer.
• Clinical Practice Guidelines for the Psychosocial Care of Adults with Cancer
• (see also Specific Cancer Issues regarding ChemoBrain, Nutrition, Sexuality, Physical Activity, Anxiety/Depression, Asbestos, Advanced cancer, Rare Cancers, Return to work after cancer, ... etc)

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Understanding tests and results

• Lab Tests Online is an Australian 'Quality use of Pathology' initiative (not only for cancer) (Example: Select Conditions & Diseases 'Prostate Cancer')
• MyBiopsy by the College of American Pathologists has information about cancer tests.
• Cancer World Media Resources links to sites that may be useful aids for understanding medical terminology and for definitions. The Cancer Media Service (CMS) is a resource for journalists operated by the European School of Oncology (ESO). The CMS aims to improve the quality of cancer journalism by helping to put news about cancer in context and explaining the science behind the stories.

Complementary Therapies

Complementary Therapies are used alongside conventional cancer treatments for symptom relief.  

• Understanding Complementary Therapies – a guide for people with cancer, their families and friends is an on-line booklet by the Cancer Council of New South Wales (Nov 08) that provides an excellent introduction to therapies that may improve your treatment and care. Complementary and alternative cancer therapies - for people with cancer, their family and friends is an on-line booklet by the Cancer Council Victoria (Feb 09). Complementary therapies and cancer factsheets are also provided by the Cancer Council of Australia.
• Supplements, Herbs and Other Products – to help you find out which ones have proven benefits as complementary cancer treatments.
• Brochure listing professional organisations representing qualified practitioners of complementary therapies in South Australia.
  
• Cancer Care Centre at Unley, South Australia provides complementary therapies, support, services and a library of cancer information, books, videos, CDs.
• Complementary and alternative cancer therapies - a useful, brief list of things to consider with links to reliable information. Although located at the Rare Cancer Alliance website, it is relevant for all types of cancer.
  
• Better Health Channel, Victoria has general information about commonly used complementary therapies, and Fact Sheets.
• The Memorial Sloan Kettering Cancer Center is a leading US cancer research centre. The Integrative Medicine program is headed by Dr Barrie Cassileth, a presenter at the Cancer Voices SA consumer Forum in Nov 2007. A useful section of the website has detailed information about Supplements, Herbs and Other Products – to help you find out which ones have proven benefits as complementary cancer treatments. See also Integrative Medicine for Paediatric Patients.
• Complementary and Alternative Medicine Index, University of Maryland Medical Centre:
  
• Herbs and Supplements, EBSCO Publishing
• American National Center for Complementary and Alternative Medicine. NCCAM is dedicated to exploring complementary and alternative healing practices in the context of rigorous science and disseminating information to the public and professionals.
  
• CancerHelp UK Complementary therapies information describes the therapy, how it works, why people with cancer might use it, possible side effects, and in the UK context, the cost, how to find a therapist and accreditation organisations.
  
• Complementary Medicine MultiMedia from the MD Anderson Cancer Centre (USA) provides short online videos eg relaxation massage, yoga, tibetan meditation, laughter therapy, music therapy, qigong, tai chi, pilates.
• Complementary and Alternative Medicine - Evidence updates by Therapy for the UK National Health Service.
  
• Inspire Health has Research Updates which present the latest in integrative cancer care research relevant to cancer and integrative medicine.
• I've got nothing to lose by trying it - Weighing up claims about cures and treatments for long-term conditions. This guide aims to help patients and their families to evaluate the treatment claims they are bombarded with.
• Grapefruit juice and St John’s Wort are just the tip of the iceberg. Certain foods, prescription drugs and complementary remedies interact with cancer therapies, altering the effective dose and putting patients at risk. How can damaging interactions be prevented?
  

Most complementary therapy practitioners in Australia are 'unregistered' eg massage therapists, acupuncturists, counsellors, naturopaths, herbalists. Unregistered practitioners - what to expect and what to do if you have concerns about an unregistered practitioner (information sheet, Oct 08).

'Bogus' CAM practitioners under spotlight in SA (June 2009)

Inquiry into Bogus, Unregistered and Deregistered Health Practitioners (South Australian Parliamentary Inquiry, published June 2009)

Researchers may be interested in reports by the Australian National Prescribing Service Limited (NPS):

• Review of the Quality of Complementary Medicines Information Resources: Summary Report (published Mar 2009)
• Complementary medicine information needs of Australian consumers (PDF 78 pgs) and health professionals: GPs and pharmacists (146 pages).

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Survivorship

These resources may help you, your family and friends weather the physical, emotional, psychological, social effects after a cancer diagnosis.

• 'Cancer – how are you travelling' is a booklet about the emotional and social impact of cancer.
• Cancer Survival Toolbox has sections on.communicating, finding info, making decisions, caring for the caregiver, living beyond cancer
• 'Life after cancer, A guide for cancer survivors' is a booklet from The Cancer Council Victoria
• The Lance Armstrong Foundation (LIVESTRONG) “unites people through programs and experiences to empower cancer survivors to live life on their own terms and to raise awareness and funds for the fight against cancer. The LAF focuses on cancer prevention, access to screening and care, research and quality of life for cancer survivors”.
• LIVESTRONG Guidebook - provides information, resources and organizational tools to help survivors navigate through all phases of the cancer journey eg. understanding how cancer can affect the physical, emotional and day-to-day lives of survivors. The Guidebook is free, but postage/shipping is charged.  Order online.
• Survivorship resources: US Centre for Disease Control
• Survivorship - Next steps to take Cancer.Net, American Society of Clinical Oncology.
• Living well after cancer. Canadian Cancer Society
• 'Surviving Survival' transcript of Four Corners TV program about the experiences of cancer patients after 5 years of post-treatment survival.
• The Cancer Experience: the time after treatment. Cancer Council SA monograph.
• Nutrition and Physical Activity During and After Cancer Treatment: An American Cancer Society Guide for Informed Choices
• Eating Well: A practical guide for people living with leukaemias,
  lymphomas, myeloma and related blood disorders. Leukaemia Foundation of Australia (Note: this booklet has some practical and useful tips for all types of cancer)
• See also the Cancer Voices SA Specific Cancer Issues section on ChemoBrain, Nutrition, Sexuality, Physical Activity, Anxiety/Depression, Asbestos, Advanced cancer, Rare Cancers, Return to work after cancer, ...
  

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Support

• Cancer Council Helpline ph 131120
• Cancer Support Groups run by the Cancer Council South Australia.
• Cancer Care Centre at Unley, South Australia provides complementary therapies, support, services and a library of cancer information, books, videos, CDs.
• SA Community Services Directory ...   (Tip: search ‘cancer’  …or your specific type of cancer )
• Human Services Finder - information about health, housing, family and community services from the private, public and community sectors in South Australia.
• Indigenous Services Directory at Mensline Australia, listing men's services throughout Australia.
• Mensline Australia (ph 1300 78 99 78) in partnership with Cancer Council Victoria (ph 131120), offers telephone support groups for men with prostate cancer and their carers.

Cancer Prevention

• Diet, physical activity and body weight: risk factors for cancer. American Institute for Cancer Research
  Reduce your cancer risk

Clinical Trials

General advice about Clinical Trial participation,

• Cancer Research UK has information at ‘Understanding Clinical Trials’.
  • A Guide to Clinical Trials for Cancer Patients is a brochure to help you make an informed decision about becoming involved in clinical trials.
  • The American National Cancer Institute provides information
    • How to Find a Cancer Treatment Trial: A 10-Step Guide,
    • Should I Take Part in a Clinical Trial?,
    • Participating in a Trial: Questions to Ask Your Doctor

Find cancer trials

Be aware that websites based overseas may describe Cancer Trials that do not have any recruitment centres in Australia.

• Australian Cancer Trials - National Health and Medical Research Council (NHMRC) Clinical Trials Centre.
• Australian Clinical Trials Registry (ANZCTR) is an on-line register of all clinical trials being undertaken in Australia and New Zealand and involving Australian/New Zealand researchers or participants (NB. not only for cancer trials). The ANZCTR includes trials across the therapeutic areas spectrum of pharmaceuticals, surgical procedures, preventive measures, lifestyle, devices, treatment and rehabilitation strategies and complementary therapies.
• American National Cancer Institute (NCI) Clinical Trials Registry has detailed information about cancer trials sponsored by the NCI, pharmaceutical companies, medical centers, and other groups from around the world.
• Cancer Research UK ‘Find a Clinical Trial’ has very consumer-friendly information about cancer trials available in the UK.
• CancerBackUp UK include details of cancer trials by the NCRN (National Cancer Research Network), Cancer Research UK and the EORTC (European Organisation for Research and Treatment of Cancer). Trials run by the pharmaceutical industry are also included.
• American National Institute of Health clinical trials website has a comprehensive listing of trials conducted in the United States and around the world. (NB not only cancer trials).

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Special groups

We recognise that some groups and populations have special needs and interests when it comes to cancer treatment and care.

• Aboriginal
  Aboriginal Cancer Journeys: Our stories of kinship, hope and survival is a book of stories from Aboriginal people affected by cancer. It includes personal insights and words of wisdom so Aboriginal people can get an insight into other people's experience of cancer. See also eight fact sheets with easy-to-read information about cancer, its treatment and side effects. (Cancer Council NSW and the Aboriginal Health & Medical Research Council)
  Australian Indigenous HealthInfoNet, cancer resources;
  Indigenous Services Directory at Mensline Australia, listing men's services throughout Australia.
• Adolescents and young adults with cancer Canteen (with links to other good teen and young peoples sites), Planet Cancer. Young men's Mensline Australia including Youth Services Directory
• Carers Caring for the Caregiver
  
• Children and adolescents with Cancer  Childhood cancer information:
  • Services available at the Adelaide Womens and Children’s Hospital
• Childhood Cancer - information for your family ; Childhood blood disorders - information for your family
• McGuinness McDermott Foundation Children's Clinic
• Cancer among young South Australians statistical report
• Children’s Oncology Group (COG): USA National Cancer Institute (NCI) sponsored cooperative group dedicated to controlling cancer among children and adolescents. 
• CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through their mission to cure childhood cancer. Research is the key to the cure.
• Integrative Medicine for Paediatric Patients at the USA Memorial Sloan Kettering Cancer Center.
  
• Culturally and linguistically diverse Multi-lingual cancer resources are provided by The Cancer Council South Australia (eg Arabic, Bosnian, Chinese, Italian, Greek, Russian, Serbian, Somali, Spanish, Turkish, Vietnamese). Vietnamese Mensline Australia including Vietnamese Services Database. Arabic Mensline Australia including Arabic Services Database.
• Gay or Lesbian 'It's a real bugger isn't it dear? - Stories of different sexuality and cancer' This booklet details the personal journeys, through stories and poems, of GLBTIQ people who have had cancer.
  Palliative care issues for gay, lesbian, bisexual and transgender people.
• Rural and Remote Patient Assistance Transport Scheme (PATS). The South Australian Patient Assistance Transport Scheme (PATS) provides some financial reimbursement to country patients and approved escorts with the cost of travel and accommodation when they are required to travel over 100 kilometres (each way) to receive specialist medical treatment that is not available at their nearest centre.
  

  Country Health South Australia (CHSA) Patient Journey Health Information Resources report that many people from the country travel to Adelaide for inpatient treatment at metropolitan hospitals. To improve the Patient Journey , and increase the knowledge of services available, two Health Information Resources have been produced:
   
  ·  ‘Before You Travel’ – a checklist for people from country SA preparing to travel for medical treatment, including suggested questions to ask their referring GP / doctor; and
  ·  ‘Contacts for when you travel to access health services’ – a directory of commonly required contacts for people from country SA travelling regionally or to metropolitan Adelaide for medical treatment.
  The CHSA Patient Journey Health Information Resources additionally aim to:
  · Reduce the number of people from country SA travelling to metropolitan Adelaide for health services by providing a prompt to discuss local / regional options, particularly when journey is GP initiated;
  · Provide practical support in a clear format to people from country SA who require access to health services in metropolitan Adelaide.
  Arrangements are being made to make this literature available on the Patient Journey Initiative page on the CHSA Web-site (July 2010)

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Specific Cancer Issues

• Asbestos and Mesothelioma;Mesothelioma,
  • Asbestos Victims Association (SA)
• Human Papilloma Virus (HPV), cervical and other cancers, and the HPV vaccination debate.
• Chemo Brain; Understanding and recovery; ChemoBrain
• Sexuality; Effects of cancer and treatment on sexuality; Sexuality and cancer
• Chemotherapy induced peripheral neuropathy; Putting Evidence into Practice (PEP) guide on Chemotherapy Induced Peripheral Neuropathy
• salivary gland hypofunction and xerostomia induced by cancer therapies: evidence based review of management strategies and economic impact.
• Eating Well: A practical guide for people living with leukaemias,
  lymphomas, myeloma and related blood disorders. Leukaemia Foundation of Australia (Note: this booklet has some practical and useful tips for all types of cancer)
• Eating Hints: Before, During, and After Cancer Treatment (US National Cancer Institute, Dowload PDF)
• Good Nutrition During Chemotherapy, Good Nutrition During Radiation Therapy (Caring4Cancer Nutriton Video Series, US)
• Effect of cancer treatment on nutrition (US National Cancer Institute)
• Exercise and cancer; Exercise can help reduce cancer-related fatigue
• Physical activity during palliative chemotherapy ; impact on Quality of Life
• Cancer and Depression and/or anxiety
• People living with Advanced Cancer: Living to the End: Merging Holistic and Evidence-Based Strategies to Meet the Needs of People Living With Advanced Cancer; Telephone support groups for men with advanced prostate cancer.
• After treatment: Life After Cancer Treatment: The "New Normal"
• Music as Medicine: Music Therapy, Music not just for the Soul
• Rare cancers. Rare Cancer Alliance - information for patients. Rare Tumors Journal - technical details. CART-WHEEL Centre for Analysis of Rare Tumours is inviting people from all over the world to submit information about their particular tumor so that researchers can develop new insights into these understudied rare tumors.
• Families and the impact that parental cancer and their death has on children.
• Returning to work after cancer
• Cancer and Careers - working thru it; information for employees & employers (US)
• Working Through Cancer (Macmillan UK toolkit of resources for employees & employers)
• Working during treatment (US, Caring4Cancer)
• Report on 'The role of depression following return to work' examining the role of depression in returning to work after a period of sickness absence across 4 types of chronic illnesses: depression and anxiety, back pain, heart disease and cancer;
• Cancer in the Workplace Project: Report on Consultations with Managers and Employees (2006, Report 060123, The Cancer Council WA )
• Working It Out: Your Employment Rights as a Cancer Survivor (US National Coalition for Cancer Survivorship - Resources)

Palliative Care

• CareSearch is an evidence-based resource for palliative care professionals, patients, carers and the general community.
• Palliative Care Council SA is a valuable information resource on palliative care services provided in South Australia and nationally.
• Palliative Care Australia has launched a new national online directory of palliative care services. Visitors to the website will be able to type in the postcode where they live and see the contact details for the service/s that cover that location. Other resources include
  • Journeys – Palliative Care for Children and Teenagers is an information resource which aims to better prepare and equip families and carers for the many situations and issues they may face as they live with their child’s illness. It is a starting point in identifying where to look or who to go to for specific information and support which best meets their needs

Coping with Loss and grief

• Grief Link is a South Australian site (see Topics: Cancer, or Coping with Grief, or Helping the bereaved)
• For children. Sesame Street 'When families grieve'. Help your family cope and communicate after the death of a parent.

Financial issues

• Private vs public: hospital patient costs - mind the 'gap'.
• Medicare Online Service for Consumers Medicare Australia has launched a secure online service for consumers that allows them to view their Medicare Safety Net balance, Medicare benefit tax statement, organ donor registration details and children’s immunisation history, view and update some of their Medicare personal details, and request a duplicate or replacement Medicare card along with some transactions and enquiries.
  All holders of a Medicare card who are over 13 years old and currently living in Australia can register for the online services
• Assessment of claims for disability support pension from people with acute or terminal illness—An examination of social security law and practice—5 March 2009—02|2009 Commonwealth Ombudsman Investigation Report. Report on problems in assessing claims for disability support pension from people who are acutely or terminally ill.
  
• Superannuation
  
• Australian Prudential Regulation Authority - regarding early release of superannuation http://www.apra.gov.au/Superannuation/Early-Release-of-Superannuation-Benefits.cfm
• Cancer Voices Australia is lobbying the government to make changes to enable terminally ill cancer patients to access superannuation.
• Cost of Cancer in NSW (PDF report, 2007)
• Workplace
  The Cancer Council WA Cancer in the Workplace Project: Report on Consultations with Managers and Employees (2006, Report 060123)

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Shared health-decision making

Risk statistics can be made simple, and this may help you feel better equipped to actively participate in decisions about your healthcare.

• Understanding risk
• How to make the best decisions about treatment
• Shared decision-making: Working with your doctor

Advocacy

Health and Cancer advocacy organisations working to change cancer policy to assure quality cancer care, advance cancer research and develop prevention activities:

• Cancer Voices Australia is a national network providing a forum for people in Australia affected by cancer. Through our network of state Cancer Voices we share issues, ideas and experiences that are common across all cancer types.
• Health Consumers Alliance of South Australia is the not for profit, peak community organisation for health consumers using SA health services.
• Consumers Health Forum of Australia is the national voice for health consumers. It helps shape Australia’s health system by representing and involving consumers in health policy and program development, and is an independent member-based non-government organisation for health consumers.
• Nothing about us Without us. European Cancer Patient Coalition Advocacy Toolbox
• American National Coalition for Cancer Survivorship is a survivor-led cancer advocacy organization, advocating for quality cancer care for all Americans and empowering cancer survivors. NCCS believes in evidence-based advocacy for systemic changes at the federal level in how the nation researches, regulates, finances, and delivers quality cancer care.
• Lance Armstrong Foundation Advocacy
• Breakaway From Cancer US Advocacy Organisation links
• Choice - tests products and services so that consumers can buy the best, and also lobby industry and government for stronger consumer protection laws or safer products. Current Health campaigns.
• Links to additional resources can be found in our Cancer Voices Library or in the Advocacy Tools section below.

Complaints

Health and Community Services Complaints Commissioner The HCSCC helps people – service users, carers and service providers – resolve complaints about health and community services, when a direct approach to the service provider is either unreasonable, or has not succeeded.

• Aboriginal Outreach Project: Ever felt like complaining? Between March - May 2009 HCSCC consulted Aboriginal people and workers in Aboriginal and mainstream health and community services, to hear directly from Aboriginal people about their experiences with health and community services. The project wanted to hear about their experience if they had wanted to complain or did complain about a health and community service in the past 5 years.
• Information Sheet Unregistered practitioners - what to expect and what to do if you have concerns about an unregistered practitioner . Unregistered practitioners include massage therapists, acupuncturists, counsellors, naturopaths, herbalists.

IMPORTANT NEW ARRANGEMENTS FOR COMPLAINTS ABOUT A HEALTH PRACTITIONER

On July 1 2010 a new national system for the regulation of health practitioners was introduced in South Australia. The national regulation will cover concerns you may have about the quality of care provided by a:
· Doctor
· Nurse or Midwife
· Psychologist
· Physiotherapist
· Chiropractor
· Pharmacist
· Dentist
· Podiatrist
· Osteopath
· Optometrist
· Or student practitioner
 
If you have a complaint about the service you received from one of these types of health practitioners you should now contact the new Australian Health Practitioner Regulation Agency ( AHPRA ). For example, the Medical Board of SA (or any other relevant SA  professional board) no longer exists and has been replaced by a national board such as the Medical Board of Australia; these boards will not receive complaints, so you should instead contact AHPRA.
 
APHRA can be contacted by phoning 1300 419 495 or through their website www.ahpra.gov.au. The AHPRA website allows you to make a complaint online and has a complaint form which can be downloaded for posting to the SA office of the agency:
  AHPRA South Australia, GPO Box 9958, Adelaide SA 5001
 
South Australian consumers, carers  or family members can still complain about any health service provider directly to the SA Health and Community Services Complaints Commissioner by phoning the enquiry service on 8226 8666  or toll free 1800 232 007 between 9.00am and 5.00pm Monday to Friday, or going to the website http://www.hcscc.sa.gov.au.
 
If the complaint relates to care by an individual health practitioner, the office will refer your complaint to the Australian Health Practitioner Regulation Agency. This remains unchanged.

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Cancer Resources

Advocacy Tools

• ‘Our Community’ provides useful toolkits of free online resources for community organisations (Australian)
• Community Advocacy Guidelines (Health Consumers' Council (WA))
• A Guide to Bicycle Advocacy has useful tips on how to campaign governments at all levels about issues concerning cyclists. These tips are also very applicable to cancer advocacy.
• Volresource Information for voluntary and community organisations (UK)
• Partnerships Online The guide to effective participation (UK)
• Cancer Control: knowledge into action (WHO)
• Consumer resources from Cancer Australia
  • Consumer participation guide
  • Consumer training and mentoring guide
  • Cancer support groups: A guide to setting up peer facilitated supportsCancer support groups: Skills resource for peer facilitators
• Links to additional resources can be found in the Cancer Voices Library

Best practice cancer care

Multidisciplinary care is a collaborative approach to treatment planning and ongoing care throughout the treatment pathway. Multidisciplinary care aims to ensure that members of the treatment and care team can discuss all relevant aspects of a cancer patient’s physical and psychosocial needs along with other factors impacting upon the patient’s care.

• Achieving best practice cancer care, A guide for implementing multidisciplinary care (Victorian Government Cancer Initiative
  
• Multidisciplinary cancer care (National Breast and Ovarian Cancer Centre)

The Cancer Learning online hub is an initiative of Cancer Australia and aims to:

• consolidate the enormous variety of evidence-based learning activities, resources and information in cancer care available across Australia and overseas
• provide a first port of call for health professionals, organisations and cancer networks who wish to undertake, build or plan professional development programs and activities in cancer care
• enable resources and information to be shared by cancer care providers across Australia.

 “Find” cancer learning activities, for example

• Coordination of Care
• Multidisciplinary Care
• Supportive Care

• Adolescent & Young Adult
• CALD
• Clinical Practice Improvement
• Geriatric
• Indigenous
• Paediatric
• Palliative Care
• Primary Care , Referral Toolkit
• Work/Life Balance

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Cancer Screening Programs

• Australian cancer screening programs
• Making sense of screening
• Screening and early detection of cancer (World Health Organisation)
• General considerations for cancer screening (World Health Organisation) 

Cancer Organisations in Australia

• Cancer Australia Cancer Australia is a national government agency, working to reduce the impact of cancer on all Australians. It aims to work in partnership with consumers, health professionals, cancer organisations, researchers and governments, to improve outcomes for all people affected by cancer and particularly for those people whose survival rates or cancer experiences are poorer. This includes Aboriginal and Torres Strait Islander peoples, people living in rural and regional areas, people from culturally and linguistically diverse backgrounds and people who are socio-economically disadvantaged.
  
• The Cancer Council Australia is Australia's peak national non-government cancer control organisation. The Cancer Council Australia advises the Australian Government and other bodies on practices and policies to help prevent, detect and treat cancer.

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Cancer Statistics

• The Cancer Council SA has reports and links to the SA Cancer Registry, national and international resources.
  
• Cancer reports from the Australian Institute of Health and Welfare (AIHW)
  
  • Australia's Health 2010 (published Jun 2010), Cancer chapter
  • Cancer in Australia: an overview, 2008 (published Dec 2008)
    
  • Cancer in Australia 2006 Report (published July 2007)
  • Australian Cancer Incidence and Mortality Books (current data)
    
• UK Cancer Research CancerStats section contains the latest cancer statistics and information on the causes, diagnosis, treatment, screening and molecular biology and genetics of cancer.
  
• US National Cancer Institute Cancer Statistics for ‘Finding cancer statistics’ and ‘Understanding Cancer Statistics’.
• Cancer Worldwide - the global picture

Cancer Initiatives, Policy and Planning

• LIVESTRONG Global Cancer Campaign
• 'Go Public' Global Community Conversation on Cancer Control 
• World Cancer Campaign, International Union Against Cancer (UICC)
• World Cancer Declaration (2008) - a plan of action to help substantially reduce the global cancer burden by 2020 and increase cancer's visibility on the international political agenda.
• Charter of Paris 2000 : World Cancer Campaign, International Union against Cancer (UICC)
• Statewide cancer control plan 2006 - 2009 Developed in parnership by the South Australian Department of Health and Cancer Council South Australia
• Australian National Services Improvement Framework for Cancer (NISIF), 2005 (Chap 4 Treatment and Support during Active Treatment (PDF 102 KB), Chap 5 Management and Support after and between Active Treatment (PDF 51 KB); Related document - DRAFT Cancer Professional Development Framework
• Optimising Cancer Care in Australia is a consultative report prepared in 2003 by the Clinical Oncological Society of Australia, Cancer Council Australia and the National Cancer Control Initiative outlining key reforms required to ensure optimal treatment for cancer patients.
• Challenges in Open Disclosure: Health Consumer Alliance SA 'Voice' Newsletter, Autumn 2009. "'consumers ....significant players in changing clinical culture...", "We must learn to ask questions,...about the appropriateness and effectiveness of the treatments offered to us...". 
• National Health and Hospitals Reform Commission was established (Feb 08) to develop a long-term health reform plan for a modern Australia. Beyond the Blame Game: Accountability and performance benchmarks for the next Australian Health Care Agreements (2008), and Interim Report – A Healthier Future for All Australians (2009) which contains proposed reform directions.
  A Healthier Future for All Australians, NHHRC final report 27 July 2009
  (Background from 'The history of public hospitals in Australia -- where did our public hospital system come from and why is it in crisis?' on ABC Radio National, March 2009)
  
• Australia: the healthiest country by 2020 - National Preventative Health Taskforce (2008, Discussion Paper)
• Towards a National Primary Health Care Strategy: A Discussion Paper from the Australian Government (2008)
• US National Action Plan for Cancer Survivorship: Advancing Public Health Strategies.  Jointly produced by LIVESTRONG/Lance Armstrong Foundation (LAF) and US Centre for Disease Control (CDC). "Survive cancer and live" is a brochure describing the US National Action Plan for Cancer Survivorship.
• From Cancer Patient to Cancer Survivor: Lost in Transition (2005)
  This report of a committee established at the Institute of Medicine (IOM) of the US National Academies examines the range of medical and psychosocial issues faced by cancer survivors and makes recommendations to improve their health care and quality of life. The report focuses on survivors of adult cancer during the phase of care that follows primary treatment. A previous IOM reports addressed the needs of childhood cancer survivors (IOM, 2003).
• Links to additional resources can be found in the Cancer Voices Library

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