Participating in your healthcare

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Help improve Australian healthcare! By sharing your health experiences and ideas, you can help consumer advocates and consumer organisations work for change that improves things for you, patients, carers, families and communities. 

  • Mary Gee's picture

    Patient Advocate to the Rescue

    I found your site when I was at a low ebb and was looking for advice about how to help my mother. I read about a Sydney based patient advocate and Googled her. I cannot tell you how it changed things for the better and now, she is working for my sister Ro (helping with her mother in law) and things are going very well. I am a pharmacist and have some level of medical literacy but no hospital experience. My 93 year old mother had chronic lung disease and was hospitalised with pneumonia. She was completely lucid, filled out an advanced directives form stating she did not want extreme measures...Read more
  • From Latest News's picture

    Consultation: Review of the Registered nurse standards for practice - closes soon!

    The Nursing and Midwifery Board of Australia ( NMBA ) is holding a public consultation on the review of the Registered nurse standards for practice. You can participate by completing the structured response consultation by close of business Friday, 3 July 2015. More information at more
  • CHF Team's picture

    Consultation: Review of the implementation of the national reform agenda on organ and tissue donation and transplantation

    The Department of Health has commissioned EY to undertake a review of the implementation of the national reform agenda on organ and tissue donation and transplantation. The Australian Government announced a national reform programme in July 2008, to implement a world’s best practice approach to organ and tissue donation for transplantation.The twin objectives of the national reform programme are to: Increase the capability and capacity within the health system to maximise donation rates; and Raise community awareness and stakeholder engagement across Australia to promote organ and tissue...Read more
  • MVohra's picture

    Have Your Say - Cosmetic Surgery Regulation

    Consumers are increasingly making decisions to have major, irreversible cosmetic procedures for purely aesthetic purposes, without fully understanding the financial and health risks. The Medical Board of Australia is considering new guidelines that set out clear expectations of medical practitioners who provide cosmetic procedures to safeguard consumers. Some questions to consider: 1.Would a 7 day “cooling off period” benefit consumers in making considered decisions? 2.Should consumers pay for a consult with a medical practitioner before being allowed to have a cosmetic procedure? 3.Do...Read more
  • From Latest News's picture

    RACS Patient Information on Surgical Fees

    The Royal Australasian College of Surgeons has developed an information sheet to assist patients with issues surrounding surgical fees. The sheet is available at and covers the following key points - * full disclosure and transparency of fees as early as possible in the patient-doctor relationship * ensuring that patients understand all available treatment options * encouraging concerned patients to seek second opinions on recommended treatments and the fees to be chargedRead more
  • CHF Team's picture

    APHCRI Consultation: future of primary health care research

    The Australian Primary Health Care Research Institute ( APHCRI ) has developed a discussion paper ’Supporting Primary Health Care Research – future directions’ and they are seeking your feedback. A summary of the paper is available here . APHCRI : “Primary health care ( PHC ) is critical to meeting rising health care costs and increasing demand for health services due to lifestyle factors, ageing and the changing burden of disease in our population. To build an effective PHC system we need robust Australian-based PHC research, which reflects our policy priorities and community values...Read more
  • Patient Opinion's picture

    How an independent patient advocate made a huge difference to my health outcome.

    I was a client of Patient Advocate Sydney in late 2014. I have developed a need to be more informed about my health management. My advocate assisted me during a recent admission for a total hip replacement at a major Sydney teaching hospital (somewhere that you would expect state-of-the-art care.) as I am a single 70+ year old with no family living in Sydney. I’m in pretty decent health but some problems, not great medical language ability and often a bit intimidated by doctors. A friend of mine had used the advocate before. I would give the hospital 6/10. The anaesthetist did a pre-operation...Read more
  • Patient Advocate's picture

    Independent Patient Advocate

    After 30 plus years as a nurse clinician and academic in the NSW health system I decided to engage with healthcare from a patient perspective, as an independent patient advocate. I recently retired as an ICU/ER RN and became so disillusioned by the adequacy of the NSW hospital & health system to really look after patients. I cannot count the number of times I stood with relatives and patients, by a bedside and thought "if I was not constrained by my legal and ethical obligations to my employer, I would advise these people to be much less accepting and much more questioning about what...Read more
  • Patient Opinion's picture

    Neurologists - Lack of communication

    I had my first Deep Brain Stimulation surgery in August 2013. Then in March 2014 I had a repeat surgery. After a hopeful first month, I now am taking more and more meds to control symptoms of parkinsons. During my last appointment with my neurologist who I now visit with my sister I was told that I was "manic" at times because I compulsively researched and became interested in the ethical implications of DBS. She said that I had an episode where I spent money on clothes. (I came to an appointment in a new dress which I frivolously showed off to the female neurologist! ! Should have...Read more
  • CHF Team's picture

    Public Consultation on the joint NHMRC/CHF draft Statement on Consumer Involvement in Health and Medical Research

    The NHMRC and CHF are currently seeking feedback on the following document: Draft Statement on Consumer Involvement in Health Medical Research . The NHMRC /Consumers Health Forum of Australia Ltd ( CHF ) “Statement on Consumer and Community Participation in Health and Medical Research” and companion Summary Statement were published in 2002. The Statement was developed jointly by NHMRC and CHF with the aim of supporting consumer and community participation across all types and levels of health and medical research. The development of the Statement was followed by the release in 2004 of two...Read more
  • FVR's picture

    Pastoral Care for hospital patients

    I am a pastoral care worker in a large hospital with a hospice attached. I would really like to know how we can better serve those who are in our care, especially those who are facing the most difficult times, along with their families. We are not there purely to serve those with a particular Christian belief (I'm actually Buddhist) I feel that we have a greater part to play in all our patients spiritual needs. I would be really grateful if others could share their thoughts as to how we might improve our service and how we move beyond the assumption that there is a particular religious...Read more
  • nanjan's picture

    Two strokes and I am In

    My life changed after my sudden strokes 15 years ago in 1998 I was at work when I had the first stroke, the 2nd four days later in hospital. I only had time to ring the buzzer and then when i came to the hospital staff were working on me. They did not know what happened nor did they realise i was having another stroke. I was in hospital for 5 weeks. No rehab nothing and then they sent me home not knowing whether we live upstairs or downstairs, I could not even walk or talk at this stage. No follow up at all. I was under a gastroentrologist. Only after a doctor friend in Adelaide told my...Read more
  • Health Consumers Queensland's picture

    Safety and quality in health care - what does it mean for consumers?

    There is a huge focus by consumers, health professionals, governments and agencies on "safety and quality in health care": our health services are accredited against the National Safety and Quality Health Service Standards, we have consumers on increasing numbers of hospital safety and quality committees and growing availability of safety and quality data. But from a consumer point of view, what does "safe, quality health care" look like? What does it feel like? How do you know when you/your family/your community is getting it (or not getting it?). And, what can consumers...Read more
  • National Stroke Foundation's picture

    Stroke - Australia's second biggest killer

    Stroke is Australia’s second biggest killer. In 2012, there were about 50,000 strokes in Australia. 65 % of people living with stroke suffer a disability that means they can’t go about their daily lives without assistance. All these factors lead to an estimated cost of $5 billion to the Australian economy. Despite all these facts Australia has never funded a coordinated stroke strategy. We have developed the National Action Plan for Stroke and we are advocating for this to be funded. We want to know how stroke has impacted your life? What would you change if you could?Read more
  • Jodiesjourneycom's picture

    Working with your doctors, not against them.

    WORKING WITH DOCTORS TO GET THE BEST RESULTS and ultimately a diagnosis – Many health consumers have complaints and they may often choose to air them verbally, in the way of abuse or speaking to others around them. This may help to make the consumer feel better, in getting the grievance off their chest. However, in my experience doing so verbally - does little to fix the system for the patient, in the long run. I always tell patients that in my opinion people will get no action on their own personal medical peeves, unless they formally put their complaint in writing with the surgery...Read more
  • Patient Opinion's picture

    Triple check your Medical records

    I have just discovered your amazing website and page thank you so much. As a victim of medical error it is wonderful to know there is someone out there who cares. Can I please warn everyone to triple check your medical records when you attend a hospital as I know there is more than just me suffering from long term medical issues caused by file and medical treatment errors.Read more
  • Patient Opinion's picture

    Royal Victorian Eye and Ear Hospital

    A decade of eye problems/surgery with regular changes in medication and regular follow ups in outpatients every three months but this is the third time in three and a half years I have not received a letter advising my next appointment. The staff I speak with assure me each time I have an appointment I will not drop out of the system but it happens. Each time I have phoned the hospital to no avail and have had to seek an urgent review letter from my GP to prompt them into action. I believe that due to time delays caused by the second drop out I required same day laser surgery because my...Read more
  • Lesley Brydon's picture

    Advocating for choice in Healthcare

    I welcome Dr Kerryn Phelps's suggestion of forming a body to advocate for choice in healthcare to counter efforts by “Friends of Science in Medicine”, to ban university courses in complementary medicine and pressure the federal government and insurance companies to stop funding complementary therapies. ("Evidence aplenty for complementary medicines", The Australian 15/10 ). Consumers need to send a clear message that we want choice in the management of our health, which is not constrained by out-dated ideas and self-interest...Read more
  • Jennifer Doggett's picture

    Standardised information

    When I was pregnant, I received a large amount of information about various birthing and related options (venue, type of care, pain relief, breastfeeding etc). While all the information was useful, it all came from different sources and was in different formats and styles. Also, some of the information came from groups with a clear bias towards a particular type of care. This made it difficult to compare the options available to me. Is there a role for an objective 'information broker' to provide information to consumers on their various care options in a consistent format which...Read more
  • CHF Team's picture

    Consumer access to doctors' notes

    A new study in the US has looked at what happens when consumers are given access to their doctor's notes. Consumers involved in the study were given electronic links to access their doctor's notes about their visits. Consumers who accessed their notes reported that they felt more in control of their care and were more likely to adhere to their medication regimes. Fewer than half had privacy concerns, and less than 10% reported that the notes caused confusion, worry or offence. More than half of consumers believed that they should be able to add comments to the doctor's notes...Read more
  • CHF Team's picture

    Men choosing prostate cancer treatment

    A new Australian study has found that men diagnosed with prostate cancer are increasingly involved in making their own treatment decisions. About two-thirds of the men said they primarily made the decision about treatment themselves, with the remaining men either sharing the decision-making process with their doctor or else leaving the decision 'more or less completely' up to their doctor. (You can read the abstract of the article at ). One of the conclusions of the article was that, with more men making decisions about their...Read more
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