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ISSUE 86

October -- December 2011

HEALTH MATTERS

Your Voice on Health

NEWSLETTER OF

HEALTH CONSUMERS' COUNCIL (WA) INC

GPO Box C134 Perth WA 6839 Unit 13/14 Wellington Fair 40 Lord Street East Perth WA 6004 Tel: (08) 9221 3422 or 1800 620 780 Fax: (08) 9221 5435 Website: www.hconc.org.au


The Health Consumers' Council is an independent community based organisation representing the consumers' `voice' in health, policy, planning, research and service delivery.

The Health Consumers' Council

Health Consumers' Council Board Anne McKenzie Lorraine Powell Alan King Glenn Pearson Sergio Cooper Anne Cordingley Jessica Braithwaite Mitch Messer Philip Gleeson Michele Kosky Chairperson Deputy Chairperson Treasurer Secretary Member Member Member Member Member Ex officio Our purpose To raise awareness of and advocate for health consumers` rights in Western Australia Our vision To be independent, authoritative and effective voice of and for health consumers in Western Australia Our Values The Health Consumers` Council believes that all people are entitled to: Be treated with respect, dignity and understanding Be informed about their rights and have those rights protected and enhanced Receive safe evidenced based care Be informed about their condition and any proposed treatment Have equitable access to health services Have access to information about themselves held by health professionals and the right to correct anomalies.

Health Consumers' Council Staff Michele Kosky Gio Terni Christine Ryan Pieter Di Marco Caroline Rugdee Louise Ford Executive Director Senior Advocate Advocate Advocate Speakers Bureau Coordinator Consumer Representative Training and Rural Consumer Participation Officer Aboriginal Consumer Participation Project Aboriginal Consumer Participation Project

Laura Elkin

William Trott

Rosemary Caithness Office Manager

Sophia Rabana

Receptionist

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Contents Editorial ............................................................................................................................................4 Chairperson`s Corner ......................................................................................................................5 From the Director`s Couch ................................................................................................................6 Important issues for women in Karratha ...........................................................................................6 Health Consumers` Council 2011-12 Board Members Profiles .........................................................7 Reporting Highlights 2011 Annual General Meeting .........................................................................9 11th National Rural Health Conference Priority Recommendations ...............................................12 Antibiotics--Our big addiction .........................................................................................................16 HCC Christmas Morning Tea ..........................................................................................................17 Consumers` Knowledge and Opinions of the Role of Nurse Practitioners ......................................18 Chemists Profit by the Script ...........................................................................................................21 Consumers Reforming Health Conference Report ........................................................................22 The Seventh Doctor--Geoff Goodfellow ........................................................................................23 Consumers on the Cancer Australia Advisory Council ...................................................................28 Consumer Representatives vacancies............................................................................................29 Good Health to Rural Communities ................................................................................................30 Going to Hospital Riskier Than Flying--WHO ................................................................................33 Half of Us Delay Dental and Health Care due to Cost ....................................................................34 Digitising Data Not the Point ...........................................................................................................35 Join a Team of World Leaders ........................................................................................................37 Consumers` Reforming Health Conference Report: Lessons Learnt .............................................38 Mental Health Patients Need Protected Health Services and Better Discharge Planning ..............41 Parental Perspectives on Caring for a Child with Chronic Kidney Disease .....................................43 WHO Director General Names Sir Liam Donaldson Envoy for Patient Safety ................................44 The Right Medicine .........................................................................................................................46 Recipes! ..........................................................................................................................................47 Health Professionals Don't Listen to the Patient ............................................................................48 World Elder Abuse Awareness Day Report ....................................................................................49 The Real Meaning of Life ...............................................................................................................50 Specific Priority Actions for Rural and Remote Health ...................................................................51 Language Services Policy ..............................................................................................................58 COTA Aged Care Reform Fact Sheet ............................................................................................59 Patients Priorities for Health Research ..........................................................................................61 Health Consumers` Council 2011 Consumer Excellence Awards ...................................................62 Health Consumers` Council Consumer Representative Placements ..............................................62 Health Consumers` Council: Dates for your Diary ..........................................................................63

Disclaimer: Health Matters is a bi-monthly newsletter published in Western Australia by the Health Consumers' Council. Views expressed in this newsletter are not necessarily those of the editors or the Health Consumers' Council.

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Editorial We are nearly at the end of 2011, and it`s hard to believe time can move so quickly, partly caused by the pace and demands on Health Consumers` Council. If only the pace of change in the Australian health system was as rapid and exciting. This issue of Health Matters focuses on rural health concerns amongst other things including the excellent work undertaken by the National Rural Health Alliance and Health Consumers` of Rural and Remote Australia. We have included feedback from Consumers Reforming Health Conference Melbourne, July 2011, and some exciting research findings from a partnership between Australian Primary Health Research Institute and Healthcare Consumers Association of ACT. There is a poem and a recipe, all very suitable for the oncoming summer holiday period. Thank you all for your support for Health Matters in 2011. With thanks Michele Kosky Rosemary Caithness Editors

This training workshop is supported by the School of Population Health & the Telethon Institute for Child Health Research www.involvingpeopleinresearch.org.au Page 4


Chairperson`s Corner Health Consumers` Council has completed another 12 months of consumer based activity, advocacy and lobbying. I would like to take this opportunity to sincerely thank my fellow Board members for their ongoing commitment, diligence and support over the past 12 months. In particular I would like to acknowledge the outstanding support that I have received from the Deputy Chair, Lorraine Powell. I feel privileged to have worked with this group of very committed people In October 2010 the Board agreed to introduce HIG Community Forums to encourage greater consumer knowledge and understanding of a range of health system challenges. This year we have held the following Community Forums Environmental health Good health: disease prevention and health promotion Health Workforce 2020 eHealth be confident that we continue to promote consumer participation and consumer rights across the State, working with Aboriginal consumers and their families, our HCC members, our Consumer Representatives, the Community Advisory Councils and members of District Health Advisory Councils. As this is the last Health Matters for 2011, would like also to thank Michele and the staff for their hard work and commitment to HCC. We recently farewelled long time staff member, Bill Fox and we commend Bill for his excellent advocacy for consumers over the years. I would also like to welcome Louise Ford who has recently joined HCC as the Consumer Participation Program Coordinator and our new Receptionist, Sohpie Rabana In the past 12 months, HCC has increased activity and outputs for consumers in all parts of WA. That is the reason why this organisation exists, for the good of the whole of Western Australia. Let us all maintain our loyalty and commitment to this unique organisation by ensuring that we do everything we can to support this organisation to continue its good work. Anne McKenzie Chairperson

The new HIG structure has proven to be very successful with many new people attending and contributing to the discussions. I would also like to make a special mention of the hard work and dedication to HIG by the retiring Chairperson Ann Banks. Ann has diligently led the HIG over the past few years. On behalf of the Board and all HCC members and staff I would like to thank her for the professional, quiet and dignified way she has successfully undertaken this task A more detailed account of the Council`s activities was reported at the recent AGM and in the Annual Report. All members can

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From the Director`s Couch This final issue of Health Matters in 2011 gives one pause to reflect over the past 12 months and what changes and improvements in patient care and patient safety have taken place. We have seen changes in organisational structures but not too much change on the ground. How long before Medicare Locals and Local Area Health Networks in Western Australian start co-ordinating and integrating care? When will dental health receive the attention, policy change, investment and service delivery that is so necessary to improve oral health? When will Aboriginal people gain better health and quality of life, education and employment opportunities? We have all worked very hard over 2011 to try and influence, change and transform health care for consumers. The most optimistic view came at HCC AGM from Hon Helen Morton MLC, Minister for Mental Health � if anyone has the passion to revolutionise care for people with mental illness; it is this Minister. We will be watching with interest...... Michele Kosky Executive Director

Important Note to all HCC Members

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Health Consumers` Council 2011-2012 Board Members Profiles Anne McKenzie -- Chairperson Anne McKenzie has been actively involved with Health Consumers` Council since 1995: As first Parent Advocate at Princess Margaret Hospital As a supporter of Health Consumers` Council advocacy service that has used during difficult and stressful time As a committed member of Health Issues Group for many years

Anne is currently employed as the Consumer Research Advocate at the University of Western Australia and Telethon Institute of Child Health Research an wants to provide good stewardship of Health Consumers` Council

Lorraine Powell � Deputy Chair Lorraine commenced her involvement with Health Consumers` Council in 2005 when she was employed as a Consumer Consultant based at South Metropolitan Area Mental Health Service. Lorraine has a passion for providing a constructive, proactive link between the consumer perspective and the service providers, trainers and planners in Mental Health. Lorraine sits on many committees for mental health.

Glenn Pearson � Secretary Glenn Pearson is a Noongar man from Western Australia. He is a trained primary school teacher, and has 15 years of experience in senior positions within the Australian and State Governments in a range of areas including health, education and social welfare. He is currently undertaking a Masters in Medical Sciences at the University of WA (UWA). In 2005-2006, Mr Pearson was involved in research to evaluate the Aboriginal Mental Health Service within the North Metropolitan Area Health Service. He managed and contributed to the Consultancy Report for the North Metropolitan Area Health Service on the Development of a State-wide Aboriginal Mental Health Service.

Alan King -

Treasurer

Alan King is an experienced accountant with a background in social issues, community organisations and Aboriginal communities. He has travelled extensively in rural and remote Western Australia and is very aware of the barriers families face in accessing health services in country Western Australia. Page 7


Jess Braithwaite � Board Member Jess is Project Officer for the New Children`s Hospital Project which includes coordinating child and youth participation and the Youth Advisory Committee. Jess`s keen interest in consumer participation is reflected in her current role and previous role at Health Consumers` Council (HCC). Jess would like to nominate for HCC Board as a representative for children and young people to highlight health issues for today`s youth.

Sergio Cooper � Board Member co-opted Sergio was born in Greece and studied four years of medicine at University of Rome, Italy. He has a Masters in Biological Science and is an expert in five languages. Sergio has been a qualified interpreter for many years and is passionate about the health rights of consumers from non-English speaking backgrounds and cultures.

Anne Cordingley � co-opted I am a strong advocate for the rights of health consumers through my involvement in the Health Consumers` Council Patient First Ambassador project. This project with its emphasis on health consumers` rights and, particularly the right to information regarding our health motives me to remain an active consumer representative.

Phillip Gleeson � Board Member Phillip Gleeson has been a lawyer in Victoria and WA for more than 13 years. He is currently the Principal in charge of the Perth office of Maurice Blackburn Lawyers. He helps people with claims for compensation if they have been injured at work, in a motor vehicle accident, through medical malpractice, as a result of a faulty product, or if someone else was to blame for an accident on public or private property. He also handles superannuation and insurance claims. Since 2001 he has developed a special interest in medical malpractice litigation and consumer health law. He has been a member of the Health Consumers` Council since [??} and has made himself available to members at HCC legal advice nights. He is currently also a member of the WA Law Society Personal Injuries and Workers Compensation Committee and is excited at the opportunity to assist the Health Consumers` Council by becoming a Board member.

Mitch Messer � Board Member I have been a health consumer advocate for over 30 years. I was a founding member of the Health Consumers` Council. I am an active consumer representative and a member of the Sir Charles Gairdner Hospital Community Advisory Council and am a member of the Primary Care Health Network Executive Advisory Group. I am a past Chair of the Consumers Health Forum of Australia, which represent consumers on national health issues.

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Reporting Highlights: 2011 Annual Report/Annual General Meeting held 26th September 2011 HCC Board: The Board met on 11 occasions The Constitutions sub-committee met on 4 occasions Health Issues Groups met on 8 occasions Budgets 2010 � 2011 Constitution Review Policies on website Position Papers completed and on website Review of Governance Policy Union briefing - Contracting out of Services for Fiona Stanley Hospital AMA / HCC Patient Examination Guidelines Policy Review every Board Meeting Consumer Excellence Awards Young people membership strategy - use of social media Drug and Alcohol services in Emergency Departments E-health and consumer involvement Office of Multi-Cultural Interests, Interpreters and Language Services Policy Pharmaceutical Benefits Advisory Committee / Cabinet approval of Pharmaceutical Benefits Scheme listed drugs HCC website upgrade HCC IT upgrade Telethon Institute Child Health Research - Chlamydia Research and young people

Board Issues -- All completed:

Thanks to our funding partners WA Health State-wide Contracting: Advocacy Program Administration Policy Review WA Health Office of Patient Safety: Consumer Participation Program Patient First Program Australian Government - Office of Aboriginal and Torres Strait Islander Health: Aboriginal Consumer Participation and Complaints Review Program WA Health Office of Aboriginal Health: Establishment of Aboriginal consumer groups and promotion of knowledge about Page 9


Medicines E-health Telehealth Advance Care Directives WA Country Health: Rural Health Consumer Program Community Conversations Patient First Ambassador Training

Participation Rural Health Consumer Program We held: Combined District Health Advisory Committees /Community Advisory Councils Conference which focused on: Patient Safety, E-health, Adverse events, and Community engagement We produced: 6 issues of DHAC E-news and 1 rural copy of Health Matters We promoted: Patient First Ambassador Program and Speakers Bureau Training We assisted: 47 people with complex complaints about WA Country Health services and private providers.

Aboriginal Consumer Participation Program We developed and distributed: HCC Complaints Management Guide for Aboriginal Community Controlled Services HCC Consumer Participation Guide for Aboriginal Community Controlled Services We spoke to: 700 people regarding Health Consumer Rights for Aboriginal people We participated in: 50 Community meetings and forums promoting Health Consumer Rights We undertook: 60 cases of patient advocacy

HCC Core Program 11 public forums were held 914 consumers obtained information, referral and advice 68 consumer representatives are currently placed on decision making bodies 188 consumers are listed on the Health Consumers` Council database, ready and willing to participate in health policy and planning The Health Issues Group has 36 active members and addressed 15 health issues 117 consumer perspective submissions and consultations were prepared and submitted 2998 brochures were distributed throughout Western Australia 597 health consumers were assisted with complex health complaints

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13 small consumer research projects were contributed to or undertaken by the Health Consumers` Council Media comments were made by Health Consumers` Council on radio, print media and television on 43 occasions The Health Consumers` Council produced and printed four issues and distributed 3202 copies of Health Matters

Speakers Bureau Program The program funded by Lotterywest started in February 2011 Up to 30 June 2011 we have had 1 public speaking training course The program provided 4 presentations

Advocacy Program During the year 597 health consumers were helped with complex health complaints: Treatment was the major category Failure to diagnose was a major concern Interpersonal issues were the next concern Service providers not listening to consumers` was a major concern Access to services was an issue Concerns around access to medication supply represented the largest percentage of complaints in this category

We've Got Something to Hoot About Our wise team of volunteer speakers are keen to get on their perch and present to your group! Talks last 30 minutes with the opportunity for questions. The topics covered include:

The WA health system Health consumers' rights Emerging issues for patients & families Health Consumers' Council services & activities Health System Literacy Knowledge is power

If you're interested in hosting a talk & improving community health through increased health literacy contact Caroline on 9221 3422 or caroline.rugdee@hconc.org.au

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Priority recommendations 16 March 2011 Credit due 1. Conference delegates congratulate the Federal Government and Health Minister Nicola Roxon on its continued support for the longitudinal study into women's health and for the consultative processes and plans brought together in the National Men's Health Policy as well as the new National Women's Health Policy. In particular they welcome the emphasis in these policies on health disadvantage in rural and remote areas. The substantial and unprecedented support for smoking cessation activity is also acknowledged and very welcome. Our greatest challenge 2. The parlous state of Indigenous health remains the most important social challenge for Australia � and 70 per cent of it is in rural and remote areas. Delegates welcomed updates provided on progress with, and remaining challenges for, the improvement of the health and wellbeing of Aboriginal Peoples and Torres Strait Islanders. Conference delegates strongly support action that is required to reinvigorate work on Indigenous ear conditions which, like so many others which blight these citizens of Australia, are entirely preventable. Partnerships: Medicare Locals 3. The rural and remote health sector has great hopes for Medicare Locals (MLs) and Local Hospital Networks. In rural and remote areas both entities will need sufficient funding for the more complex challenges they face. This high level of support will be particularly important for MLs as, over time, they become the lead agency for primary care in their region. It is essential that from their initial establishment they are equipped with sufficient resources, support and guidance to move towards the goals set for them and this may involve the cashing out/up of health funds from a variety of sources. MLs will require community contracts in order to secure genuine and effective community engagement. The contract of a Medicare Local with the consumers and clinicians in its region will be based on partnerships with all the health and health-related agencies that have a legitimate role in determining wellbeing of its population. They will also need appropriate contractual arrangements with the governments that fund them. These `bottom-up' and `top-down' arrangements might be based on model contracts. Page 12


Partnerships: Health promotion 4. Conference delegates agreed that it is critical that reform of the Australian health system and the operation of the new Preventive Health Agency result in a greater proportion of total health expenditure being spent on health promotion and illness prevention than is currently the case. Given the particular characteristics of rural and remote areas, health promotion work in country areas must be fit for purpose and not merely the backwash from national campaigns. For example, they should have some focus on the resources industries of the sector such as farming and fishing because of their poor record on health, safety and wellbeing. This general principle should be applied to all health promotion work and a good example of this is the work being undertaken to reduce smoking rates in rural and remote areas, particularly among Aboriginal and Torres Strait Islander populations. Partnerships: arts and health 5. It is proposed that Regional Arts Australia and the National Rural Health Alliance combine in efforts to have Commonwealth and State/Territory governments agree and fund a national arts and health program. Among other things such a program would provide sustainable recurrent funding for the types of successful health programs illustrated in Seeded � great arts and health stories grown in regional Australia. Food sovereignty 6. Conference delegates agreed that food sovereignty and food security in Australia are critical issues for the community and governments. Delegates welcome the current initiative being led by the National Food Policy Working Group, including its role in the development of a National Food Plan. 7.

These issues are particularly important given the shocks to the food system from natural disaster, market developments, climate change, and the development of new energy industries such as coal seam gas. Food sovereignty is a critical determinant of health and has particularly strong impacts in rural and remote areas. Given the challenges faced there by food production, distribution and pricing systems, food insecurity is more common in remote areas. 6.

Development of the National Food Plan should be sensible of the particular needs, capacities and vulnerabilities of people in rural and remote areas, including those who work in food production (e.g. farmers and fishers) and related sectors. This new Plan will include support for market gardens in remote Indigenous communities. Managing health services 7. Health service managers are critical to the provision of effective services and to the recruitment and retention of health professionals. The Australian Government should undertake substantial new investment in the education, training and support of rural and remote health service managers to assist in the implementation of the health reform agenda and to underpin ongoing excellence. These activities would ideally be undertaken in an interdisciplinary framework and should be led and supported by a strategy managed by Health Workforce Australia. Health workforce development 8. There are still substantial challenges in the recruitment, retention, training and regulation (eg relating to scope of practice) of health professionals in rural and remote areas. Delegates called for a review of health professional scopes of practice and, informed by this evidence, a re-design of the rural and remote health workforce. 9.

This will mean additional professionals working in models of care not based on fee-for-service, and a greater number of positions in public and private sectors for members of the so-called `newer' professions such as Aboriginal Health Workers, Nurse Practitioners and Physician Page 13


Assistants. This workforce re-design will require new funding models for integrated interprofessional primary care teams which will include the resources required to assist existing services adapt to the new paradigm. 8.

1The longstanding grassroots support for inter-professional learning (IPL) now needs to be backed by governmental insistence that it becomes a larger part of the training of health professionals, which will require institutional change within educational institutions, and by a national IPL policy managed through Health Workforce Australia. 2

3Conference agreed that recruitment of health professionals to rural areas begins with more students from rural backgrounds and a positive attitude to rural and remote practice in training institutions and among their staff. This more positive culture within educational settings must be generated and sustained. Conference also expressed strong support for new methods of teaching, such as learning by simulation and digital storytelling, and called for funding streams to recognise their growing importance. Better oral health 9. Conference calls on the Federal Government to collaborate with the States in the development of an integrated National Oral Health Development Scheme. It will be funded initially by redirecting expenditure from the Medicare Chronic Disease Dental Scheme. 10.

This new Scheme will expand and reform adult services for those at special risk (including the elderly); revitalise the children's/school dental services (incorporating the Teen Dental Program); run family dental services for the adults and children of eligible families; and oversee the use of fluoridation as a preventive strategy in more remote areas. The new Scheme will be complemented by an Oral Health National Partnership Agreement. 9.

For this new Scheme to be effective in rural and remote areas, immediate oral and dental health workforce initiatives will be required to improve the distribution of relevant professionals. To this end a Foundation Year for dental graduates should be established, and a range of incentives for rural dentists (based on policy experience in medicine) investigated. Better mental health 10. Rural people with anxiety and depression are disadvantaged due to lack of access to mental health services, community prejudice and confidentiality issues. 11.

To address this disadvantage, particularly for young people, it is recommended that a `support the supporters' campaign targeted at the family and friends of those suffering from a mental illness be developed to provide factual and practical advice and to alleviate stigma through education and addressing misconceptions about mental illness. The campaign could be delivered through a range of mediums including radio, television, print advertising, factsheets, social media and a central web source. To increase access to mental health services in rural areas the government should fund a telephone mental health clinic through Medicare. Clients would be referred through pathways that enable them to access existing Medicare rebates (mental health packages). To ensure continuity of care, the patient would be treated by the same qualified mental health professional each time, who would know the particulars of their client, and offer ongoing treatment (as opposed to current telephone services which focus on intervention).

Better connectivity 11. Conference delegates recognise the great potential value to health services and health status of the improved connectivity which will be provided by high speed broadband. Their focus is on Page 14


obtaining universal high speed broadband of sufficient speed and at a uniform national price � not on the means by which it will be delivered. Both consumers in their lives as citizens, business people and health service patients, as well as clinicians in their provision of care to patients, need high speed connection using technologies sufficient to the task. Major IT providers have a social responsibility to ensure that calls to crisis services are at, or below, local call prices. Evidence of success 12. Conference encouraged the NRHA to produce a check list of exemplars of good practice in various parts of the rural and remote health sector, eg suicide prevention, maternity services, health promotion, the self-management of chronic conditions. Healthy ageing and aged care 13. Conference delegates welcomed the current focus, including through the Productivity Commission, on healthy ageing and aged care in rural and remote areas. Given the financial realities of aged care services in the bush, the commerciality and sustainability of those services (including of residential aged care facilities) remains a major concern. While supporting many of the recommendations in the interim report from the Productivity Commission, people in the rural and remote aged care sector would like to see additional and stronger recommendations in its final report on a number of subjects, including workforce, capital and recurrent funding, local coordination of access and delivery. Further contact Conference Program: http://11nrhc.ruralhealth.org.au/program Leanne Coleman, Conference Manager: 02 6285 4660 Marshall Wilson, Media: 0425 624 100

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Antibiotics: Our BIG ADDICTION Our love affair with antibiotics is contributing to a dangerous global drug resistance Did you know? A green, snotty nose is not a sign of bacterial infection. It is just the body's highly efficient immune system trying to get rid of mucus buildup. Kids seem to get sick all the time. They have constant fevers ear infections, tonsillitis and bad coughs. Their faces are covered in viral rashes and shiny, green tinged nasal mucus. And they're crying, uncomfortable and just unwell. Understandably, we want the doctor to make them better so everyone can get some sleep and the littlies start eating again. But next time you ask for antibiotics, it's worth questioning whether they are really necessary. Killing a miracle According to the National Prescribing Service (NPS), Australians are addicted to using antibiotics for every sniffle and cough, and are among the highest users of antibiotics in the world. The organisation cites figures from 2006 when 22 million prescriptions were dispensed by community pharmacies, and estimates that at least three million of these were wasted on viral infections. Today, some strains of bacteria that cause infections have become so resistant to many antibiotics that people are again dying of infections. In Australia, antibiotic-resistant bacteria are thought to cause more than 7000 deaths each year. The World Health Organisation (WHO) has a very pessimistic outlook for the globe unless something is done about the over- and misuse of antibiotics. Page 16

Antibiotic resistance is placing the world at risk of returning to the grim days of the preantibiotic era, when so many children and older people died of infectious diseases, and major surgery was virtually impossible because of the risk of infection. NPS clinical adviser Dr Danielle Stowasser warns WHO is not exaggerating the impact drug resistance will have on future health outcomes. "We need to preserve the power of our antibiotics and `save the pill for the really ill'," she says, quoting the slogan for next year's NPS campaign. "Bacteria are mutating and become resistant at a much faster rate than new drugs are being developed. Parents can help ensure we have antibiotics for the future.

Must-read antibiotic rule If you're prescribed an antibiotic, it is vital that the entire course is taken as directed to ensure all the bacteria are wiped out. Any surviving germs can become resistant to that antibiotic.


Viral or bacterial? Dr Brian Morton, president of the Australian Medical Association's Council of General Practice, says at least 50 per cent of the infections children get are viral, which make antibiotics useless and ineffective. "If your child has a sniffle, a cough and a bit of a fever, I'd advise parents to first treat symptoms with paracetamol or Ibuprofen, if necessary, and expect them to be a bit sick for a couple of days and then spend another couple of days getting better," Dr Morton says. "If they're not getting better, see your doctor." Dr Stowasser believes one of the answers to the drug resistance issue is adopting personal hygiene practices that prevent the spread of bacterial illness in the community. "Teaching your kids hand and cough hygiene from an early age is a great start," she said. Dr Stowasser says it's time for Australians to stop treating antibiotics as a miracle cure. "With certain infections, the use of antibiotics results in only a small improvement, for example, reducing a week-long illness by just one day," she says. "The simplest and cheapest remedies for colds and other upper respiratory tract infections are rest and fluids. It's very good for your child's immune system to learn how to fight off these infections." The NPS says even most cases of acute otitis media (ear infection), which is one of the main reasons parents take their children to the doctor, will resolve spontaneously within three days without antibiotics. "Antibiotics may provide a small benefit *for some children], but this may be outweighed by the adverse effects," the NPS says. Is it a virus or something more serious? Find out in Fiona Baker's article at bodyandsoul.com.au

Health Consumers' Council

Annual Christmas Morning Tea

Date: Time:

Wednesday 7 December 2011 10.30 am to 12 noon

Venue: Health Consumers' Council Wellington Fair 40 Lord St East Perth Cnr Lord & Wellington Sts (inside the courtyard) Parking:Moore Street East Perth RSVP: By Wednesday 30 November to Rosemary Caithness Phone: 9221 3422

Email: rosemary.caithness@hconc.org.au

This is a great opportunity for members to meet, mingle and network with one another! Page 17


Health Care Consumers` knowledge and opinions of the Role and use of Nurse Practitioners in Australian health care EXECUTIVE SUMMARY This is the first national study examining Australian health care consumers` knowledge and opinions of the role and use of nurse practitioners in Australian primary health care. This study was conducted between May 2010 and February 2011. The aim of this study was to examine Australian health care consumers` perceptions of nurse practitioners working in primary health care. This study comprised of: A literature review, Qualitative research involving focus groups with health care consumers from a number of States and Territories, and A national online survey involving health care consumers to investigate their understanding and perceptions of the role of nurse practitioners in Australian primary health care. knowledge and perceptions of the nurse practitioner role in primary health care. The main findings of this review were: Participants of the studies included in this review had an average level of familiarity with nurse practitioners, The most common nurse practitioner tasks identified by participants included taking blood pressure, providing referrals and ordering diagnostic tests, Participants expected nurse practitioners would provide individualistic care with an emphasis on health promotion, patient education and preventative care, Consumers of health care expect an available, affordable and convenient service with short waiting times when choosing their mode of primary health care, Consumers felt there were occasions when they could see a doctor which included occasions of serious concerns, infections, acute conditions and diabetes care, Consumers reported high levels of satisfaction with primary health care services received from nurse practitioners, Participants who had seen a nurse practitioner previously had higher intentions to seek health care from nurse practitioners again, and Women were more accepting of the nurse practitioner role, and are more willing to consult the nurse practitioner for care then men.

This study was guided by a reference group which was established to oversee the methodology and provide critical advice throughout the term of the project. The reference group comprised of representatives from nursing, general practice, primary health care and governmental organisations. METHODOLOGY (CHAPTER 2) Data were collected in three stages which included a literature review, focus groups and a national online survey involving Australian health care consumers. LITERATURE REVIEW (CHAPTER 3) Twenty-five publications were included in the literature review to examine patients` Page 18


FOCUS GROUPS (CHAPTER 4) Seven focus groups were conducted in a number of States and Territories involving Australian health care consumers. The consumers were asked about their understanding and experience of nurse practitioners and their perceptions of the role of nurse practitioners in primary health care. The primary findings of these focus groups were: Consumers are generally unclear about nurse practitioners` qualifications and expertise, Consumers perceive that nurse practitioners` role overlaps with the GPs` role in primary health care, Consumers feel that nurses are good listeners` and spend more time` with patients compared to GPs, and a perception this is a trait that nurse practitioners bring to their role, Consumers want to be able to access nurse practitioners for primary health care in a timely and affordable manner, and Consumers want to be able to make a choice of health care providers in order to increase their access to primary health care. NATIONAL ONLINE SURVEY (CHAPTER 5) The total number of consumers that responded to the survey was 1883. The majority of respondents were female, aged 25 to 54 years of age, had completed tertiary education, and had an annual household income of more then $80,000 (AUD). Access to primary health care Almost ninety percent (n=1639) of respondents reported that they have a regular general practice that they attend for their primary health care, The respondents who attend a general practice regularly reported that for non-

urgent appointments, 17% can get an appointment within 8 hours, The respondents who attend a general practice regularly reported that for urgent appointments, 66% can access an appointment within 8 hours, 63% thought that there are not enough GPs in their area to service the population, and 62% of respondents thought that it was expensive to see a GP in their area. Knowledge and acceptance of nurse practitioners The majority of respondents knew that nurse practitioners had higher qualifications (78%) and a greater scope of practice (83%) than other nurses. Participants rated the following primary health care practices they would be happy to see a nurse practitioner for as highly acceptable: Take medical history, n = 1584 (91%) Triage, n = 1554 (89%) Provide repeat prescriptions, n = 1540 (89%) Suture superficial lacerations, n = 1535 (88%) Order diagnostic tests, n = 1477 (85%) Diagnose minor infectious illnesses, n = 1458 (84%) Pregnancy testing, n = 1424 (82%) Diagnose minor muscle injuries, n = 1378 (79%) Provide emergency contraception, n = 1345 (77%) Access to nurse practitioners for primary health care Page 19


86% of respondents would be prepared to see a nurse practitioner for primary care in their general practice if they could drop in without an appointment, 87% of respondents would be willing to see a nurse practitioner for primary care in their general practice if the appointment was bulk billed, and 41% of respondents agreed they would be prepared to see a nurse practitioner for primary care in their general practice if the consultation cost the same as seeing a GP.

more serious clinical problems. Consumers felt strongly about being able to make a choice about which primary health care provider, nurse practitioners or GPs, the would consult. The Australian community need to be better educated and have a better understanding of nurse practitioners` qualifications, scope of practice and role within primary health care. A promotion campaign disseminated through general practices and the media about nurse practitioners working in primary health care would assist in informing the community.

Identifying practice staff roles and informing the community about nurse practitioners 96% respondents agreed that it is important to be able to identify the different professions of staff working in general practice, and 95% of respondents think it is important to inform Australians about nurse practitioners working in general practices.

OVERVIEW The findings from this project suggest that: Australian health care consumers have a mixed understanding of nurse practitioners` role in primary health care and that they are unsure of their scope of practice. Consumers were also unsure of the role delineation between GPs and nurse practitioners. Consumers were positive about consulting nurse practitioners for primary health care and felt that they would consult nurse practitioners about more minor illnesses and injuries and reproductive concerns, such as pregnancy testing and emergency contraception, and consult GPs about

AUSTRALIAN PRIMARY HEALTH CARE RESEARCH INSTITUE ANU COLLEGE OF MEDICINE, BIOLOGY & ENVIRONMENT THE AUSTRALIAN NATIONAL UNIVERSITY HEALTH CARE CONSUMERS` ASSOCIATION OF THE ACT A/Prof Rhian Parker Dr Laura Forrest Mr Nathanial Ward Miss Clare Scanlon Mr James McCracken Ms Darlene Cox Ms Julie Derrett

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Chemists profit by the script: A legal sleight of hand increases margins on some subsidised drugs When Australians hand a prescription to their local pharmacist, they're unwitting players in a confidence trick, one worthy of the British TV series The Hustle. Pharmacists are thwarting reforms to the Pharmaceutical Benefits Scheme implemented to save taxpayers more than $4 billion by concealing the full extent of price discounts they receive from wholesalers. They do this by purchasing up to 12 months' supply of medicine in one go. The tactic could delay price cuts of up to $21 per script to consumers and delay savings to taxpayers. Regulations introduced in 2006 and enhanced last year were designed to uncover the extent of price discounting in the nation's drug subsidy and to recoup those savings for taxpayers. The government pays pharmacists a set price for medicines listed under the nation's drug subsidy scheme, the PBS. But pharmacists are able to purchase those drugs from wholesalers for much less than the subsidy, at discounts as high as 60 percent. For instance, last year taxpayers reimbursed chemists $48.18 for Simvastatin- a commonly used generic cholesterol lowering drug- although chemists paid only $19.27 for it. An analysis published in the Australian Journal of Pharmacy last February estimates the discounts "contribute 42.7 per cent to the net profit of the regional pharmacy and 37.2 per cent for the shopping centre pharmacy." In 2006 the government introduced new price disclosure rules affecting 162 drugs. This required chemists to reveal the true price they paid so the government could cut the price it paid, theoretically saving taxpayers an estimated $1.9bn. An early example of the benefit of price disclosure was the antibiotic vancomycin, which cost $33.30 before price disclosure and just $12.19 after it, a saving of $21.11. But there's a clause in the rules that prevents the first month f sales of generic versions of listed drugs from being counted. Both government and the Pharmacy Guild claim this ensure that one-off price discounts used to establish a market base for new generics entering the market that month don't distort the price disclosure process. Yet generic drug company chiefs tell Weekend Health pharmacists take advantage of this loophole to distort the price disclosure mechanism by purchasing a full 12 months' supply of new medicines in the first month of price disclosure. This hides the true extent of discounting in the first year. While generic drug companies recorded largescale orders ahead of the introduction of last year's price disclosure rules, government says its data does not show this. Pharmacists were advised of the advantage of the tactic in the Australian Journal of Pharmacy in February. "If pharmacies make large purchases of generics in the first month of data collection, there is a higher probability of any price adjustment not happening until the second year of disclosure. "While there is only a short term advantage, it is an advantage nonetheless," wrote Norman Thurecht from accountancy and consulting firm JR Pharmacy Services. The Pharmacy Guild confirms some bulk purchasing does take place among the nation's 5000 pharmacists, but claims it's wrong to suggest the industry acts as one. Consumers Health Forum spokeswoman Carol Bennett says that at a time when difficult fiscal circumstances forced the government to delay listing new medicines on the PBS, pharmacists must show they're delivering a cost-effective service under their $15bn agreement with the government.

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"Increasing pressure will be applied by large discounting chains," she says. "We've already seen supermarkets trying to buy into this area and it will be very difficult for pharmacists to argue their case [from exclusivity] if they are not delivering quality, cost-effective services". Price disclosure appears to be a slow and inefficient way of clawing back savings for taxpayers. Case in point: the osteoporosis medication alendronate. It was first subject to price disclosure in December 2007. Yet in 2009 the government paid chemists $46.87 per script for it, although consumers using discount chemist could get it for as little as $19.99, a discount of 57 per cent on the government price. As a result of price disclosure the government cut its price for alendronate by 22.96 pr cent last April- four years after it was first subject to price disclosure. Even then it wasn't getting as good a saving as a consumer using a discount chemist. The TV tricksters would indeed be proud.

Consumers Reforming Health Conference Report by Ann Revell Overall I found the conference worthwhile and the concept of a large, well run and well attended conference for consumers reforming health with international speakers is absolutely fantastic. In my own view, I felt there was not enough input from consumers, especially in the concurrent sessions, which appeared to be largely a forum for health and allied organisations, government and consultancies to showcase themselves as consumer engagers. Not all these appeared successful and there was little evidence of real partnerships. I felt these sessions overshadowed and took attention away from hearing the perspective of consumers who are actually advocates and representatives currently working with health professionals on a broad range of issues. As a consumer representative I wanted to hear from other consumer representatives about their experiences, not so much from organisations who had written papers on, or were researching the benefits of, consumer engagement. I also felt it was an opportunity lost that the conference attendees did not have any real opportunity of participation in interactive sessions. The only session that people could be involved in was an exercise to illustrate how people feel when they believe they are not being listened to, followed by an overlong period for people to comment on what they felt during the exercise. There were no surprises but lots of repetition and several comments were personal anecdotes that had nothing at all to do with the exercise. There was also a short period in which to ask questions of a panel during one plenary session but no opportunity to ask questions in the concurrent sessions. Experienced, skilled and knowledgeable consumers and organisation representatives could have engaged with each other to share information. How terrific if there had been a facilitated plenary session resulting in some conference outcomes to publish and carry forward. This conference was a terrific start though, I hope it continues, and I have sent my feedback to the conference organisers so � perhaps this will be incorporated next time.

SUE DUNLEVY Article taken from HEALTH THE WEEKEND AUSTRALIAN June25-26 2011

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Geoff Goodfellow: The Seventh Doctor The Seventh Doctor The first doctor i saw was my local GP he said i had the flu & the lump in my neck was bunched up muscle he told me to go home� drink plenty of water & eat Panadeine Forte & Valium i saw him again five days later� & told him i'd hardly slept he sent me home once more & told me to add sleeping tablets to the mix two days later when i was dangerously dizzy like dad when he was drunk & disorderly i drove myself to the public hospital some people said to me later i was silly & should have called an ambulance but i'm not in the ambulance fund & i didn't have money for a taxi & i'm an independent bastard too after a near side-swipe to a neighbour's car just a hundred metres from home i sat up pretty quick� thinking of the thickness of a coat of paint & i rolled the window down & caught the breeze it was a slow five k drive after a few minutes in the emergency waiting room i thought i was going to fall off the chair so i asked to lie down on a stretcher a man with a grey flecked beard came across & spoke he told me they were reserved for sick people & i should stay in my chair i told him he'd be sick if he didn't wheel the stretcher over for me NOW after i'd lain down he leaned over me & said you'll have to get off if anyone comes in who really needs it i suggested he'd better be able to fight if he thought i'd be getting off it only took another five hours & i was moved in to see the second doctor when he saw how awkward i was� & noticed how long it took me to sit upright & saw i hadn't shaved for a week & heard my slurred speech he folded his arms & told me to go home have a sleep & go back & see that first doctor i told him to get fucked met his eyes & said that if he didn't look at me properly i'd spread him over the floor after a look & a feel he sent me for a cat scan when i returned he said i've called in a specialist� you might have to wait for an hour or so because he's coming from another hospital when i saw the third doctor he said you are very sick� you have an infected abscess & it's very close to the voice box Page 23


you'll need to go into a bed upstairs you may need an operation in the morning when they got me installed upstairs i saw the fourth doctor he said you'd better prepare yourself this could be the big c i thought i'd already met the big c when i saw that second doctor in the morning i met the fifth doctor a woman� who one day later told me i did have cancer but the way she told me made me think she was the big c the lady doctor told me to go home she said they'd ring me with a time to go to another hospital to see another doctor after a week when no one had rung i rang the hospital i spoke to a sixth doctor who told me they never said they would ring me he said i was confused� & that i should wait for a phone call or a letter i told the sixth doctor that maybe he was confused i said i remembered what i'd been told he said no you are confused we will tell you when we want to see you & we'll do that by letter or phone� whatever suits us best if you don't like it� you know what to do you can go private & call the tune & have doctors suit your timetable i reminded the sixth doctor Page 24

i was a public patient & had no private cover but i told him too i was an old fashioned bloke i said i'll keep an eye on the letterbox & an ear out for the phone but i'll go outside every hour & check the roof for homing pigeons so feel free to send your instructions by carrier pigeon i've got a long ladder & a seventeen foot high wall & i feel quite confident i can climb the ladder & open up the metal band & retrieve any messages you might like to send i'm happy to use the old technology� or the new i'll leave it up to you the sixth doctor suggested we end the call with respect i said maybe i am confused & i don't really have cancer can you confirm that i actually do have cancer yes he replied you do & can you confirm that i did have an ultra sound examination yes he replied you did & while i freely admit i don't have much medical knowledge i do have a good understanding of the nuances of language & speech & i do believe when the ultra sound examination was carried out there was a good deal of surprise in the voices of the five or six people behind me in that darkened room would you agree on that point yes he replied i agree & while i don't want to appear pedantic would you agree that four or perhaps even five biopsy samples were removed during that examination


i'm sure i do remember the pull on the flesh & i'm sure i heard instructions on how deep to go one point five centimetetres two centimetres etcetera etcetera i mean i won't argue on the number of biopsies or the depth of the needles it's the procedure i'm referring to� would you agree that i did in fact have several biopsy samples taken yes he replied i agree well thank you i said i'll keep an eye on the letterbox an ear out for the phone & i'll check the roof hourly thank you doctor for your decency your humanity & your kindness & we both hung up after a few more weeks i got to meet the seventh doctor a surgeon a decent bloke who showed me decency & got it in return he explained my condition in a language i could understand his handshake was as solid as his eye contact & i liked his style the seventh doctor had me lie on the operating table for a biopsy on my tongue because they couldn't locate my primary the cancer in my neck was a secondary on the day of the op he & his team all wore blue overalls white gumboots caps & masks they looked like concrete finishers on a building site but their hands were soft & their vowels were rounded before i was sent off to sleep the seventh doctor talked to me

about painting & Robert Hannaford & poetry & art as therapy he sure didn't sound like a concrete finisher when i awoke i was put into a ward of other old men who coughed all night & kept one another awake & when the screen curtains were drawn in the morning i asked the man alongside me if he'd like a Rothmans plain in his morning haze he couldn't fathom my joke later that morning i met a tribe of surgical doctors who told me to go home my results would take five days to process but at six o'clock that night i had to go back the abscess had started to swell again & i met doctor eight he arranged my re-admission & i was given a different bed in the same ward & dripped with antibiotics when i awoke in the morning my chin was a mass of sores & my bottom lip looked as though it had been pumped with botox doctors nine & ten came to see me after i asked the nurse to get me a doctor but they were completely baffled they didn't seem to be much older than my teenage daughter & when they started mentioning the possibility of a staf infection the nurse looked really alarmed doctor nine suggested to doctor ten they should go & look in their books to see if they could identify the problem when they left i told the nurse i'd like to see a grown-up doctor Page 25


i was scared & so was she when she came back with doctor eleven she told him she'd like to move me from the ward to a private room doctor eleven said he didn't deem that necessary he suggested it was maybe school sores i suggested it might be cold sores but doctor eleven couldn't agree i said i wanted to see a specialist it was a teaching hospital & they must have someone capable of an accurate diagnosis by the time doctor twelve arrived the nurse had panicked & moved me to a private room i repeated to doctor twelve i thought it might be cold sores due to stress but he couldn't agree either the following morning a tribe of surgical doctors looked at me & no one seemed too sure it was then that doctor thirteen came to my bedside & cut the heads off some of the pustules & swabbed me days later when the results finally arrived the spread had really increased & the lip grown larger & i did in fact have cold sores� but they called it herpes simplex virus two days later they sent me home with a bottle of condy's crystals & packets of anti viral tabs about two weeks further down the track i met doctor fourteen a dental doctor the split corners of my mouth were still healing but she needed to inspect my gums & teeth before my neck dissection the next day i asked her to be careful said i didn't have a big mouth

(although i'm sure some doctors [& others] would dispute that) but she treated me with care� stating that i did have a small opening (& though i enjoy puns i said nothing) her advice was to get a tube of Daktarin cream & use it overnight but more importantly� to smear it over the corners of my mouth just prior to the operation she said it would be likely to stop any cold sores from coming back & she was right that next morning i saw doctor seven again in the same operating theatre he had his tribe of surgical doctors to back him up along with two anaesthetists & a few nurses as i was wheeled in my eyes scanned for familiar faces doctor eight was smiling broadly so i winked at him he understood my style & his smile broadened a couple of days later doctor eight told me the surgical team had read some of my poetry aloud as i was going off that was doctor seven's idea doctor eight said they'd stopped because some of it seemed a little `R' rated he said that after some of my lines were read he remembered hearing me read when he was a teenager at St Peter's College i remarked that it must have been during Ray Stanley's reign when the school was a bit more liberal� & more than just one voice was heard he laughed at that & i laughed too i wasn't laughing when i woke up from the neck dissection though

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it was 5:20pm when i sighted the clock in the intensive care unit & i was feeling cranky squinting wondering where my glasses were & trying to calculate how long i'd been lying there & did they know i was awake at 7:30pm they wheeled me back to the ward the same one i'd been in before but again� a different berth & there to greet me was my girlfriend Emily & my youngest son Paul we counted backwards & calculated it must have been a long operation they said the wound looked like i'd been carved up with a broken flagon they said a bottle would have been far too small they said it looked scary� & because i couldn't see what my visitors saw i asked a nurse for a mirror it scared me too by 9pm though i was asking for food as much to my own surprise as that of my visitors but the swallowing wasn't fun doctor seven had cut me from the bottom of my left earlobe to the top of my collarbone then curled around & up to my adam's apple it was a cut as big as a baling hook & with its thirty metal staples it looked almost as shiny & nearly as dangerous he'd performed his surgery on Holy Thursday 20th March 2008 & with the neck muscle removed he'd left a hole but he'd taken the tumour too (intact we hope) & with two previous infections it had been quite a messy job he was back at my bedside on Good Friday morning away from his own four kids explaining that i'd gone through the

easy part of the treatment that the chemo & the radiation were to come in about six weeks after the wound had healed he told me to go home & get into the full cream milk the banana smoothies all the chocolate i could eat & anything else that took my fancy & was fattening to get some weight on because i'd sure as hell get it stripped off in six weeks time he told me too that my voice box had been welded to the tumour that he'd had to cut it free & there'd been some nerve damage & my voice mightn't improve a lot on what i had at that point but i was still talking & i was still listening grateful to have doctor seven on my side it was a good Friday to get that news i lay in bed eating Easter eggs� silver paper & cellophane surrounding me chocolate sliding down my throat.

Geoff Goodfellow's first collection No Collars No Cuffs, first published in 1986, is now in its 9th printing. Eight books have followed, most running into multiple print runs. Geoff's poem 'The Seventh Doctor' is the anchor poem for his forthcoming collection Waltzing with Jack Dancer: a slow dance with cancer.

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Consumers on the Cancer Australia Advisory Council 2011 AMA Excellence in Health Care Award Currently there are three consumers on the Cancer Australia Advisory Council which has a total of ten members. All consumers have a lived experience of cancer and two are dealing with ongoing side effects of treatments. The following is a complete list of the members of the Council taken from the last annual report Membership Advisory Council members bring experience and input from the diverse communities and sectors in which they live and work, and offer a wealth of professional knowledge and skills that add value to the work and strategic directions of Cancer Australia. Members of the Advisory Council as at 30 June 2010 were: Dr Bill Glasson AO (Chair) -- an ophthalmologist and former federal president of the Australian Medical Association Professor Sanchia Aranda - Director of Cancer Services and Information at the Cancer Institute NSW Dr Anne Atkinson - consumer (experienced two different cancers for 20 years with numerous relapses, treatments and short and long term side effects) Professor Simon Chapman - Professor in Public Health at the University of Sydney and a world leader in tobacco control Ms Kathryn Crisell - consumer and member of the National Centre for Gynaecological Cancers Consumers Advisory Group (currently experiencing the side effects of treatment for a gynaecological cancer) Dr Liz Kenny - Senior Radiation Oncologist and Medical Director, Cancer Services Central Queensland. Professor Ian Olver - Chief Executive Officer, The Cancer Council Australia. Professor Christobel Saunders - surgeon in Perth specialising in breast cancer Page 28

Ms Lyn Swinburne AM - consumer and president of the Breast Cancer Network of Australia. Dr Julie Thompson. - rural GP with a range of medical interests The Advisory Council advisers the CEO of Cancer Australia who, in turn , makes comments and suggestions on policy relating to all matters to do with cancer to the Federal Minister for Health and Ageing. There is a conscious effort to place at least two consumers on each committee and subcommittee of Cancer Australia. In most cases consumers are sourced from the National Consumers Advisory Group (NCAG) which was established when Cancer Australia was set up. The membership for NCAG was advertised in state and national newspapers and in cancer related newsletters such as the Cancer Council newsletters. As far as possible, members were recruited from all states and territories and cover the experiences of a range of cancers. They also cover diverse Aboriginal, CaLD and gender backgrounds. The term of office for each member is 3 years although some might be asked to extend their membership. All members were given a two day training session in the first year of their appointment. In 2010, a 2 day workshop was held for 30 people who were recruited to become a pool of volunteers to fill the growing number of consumer vacancies on committees and other areas. This was also advertised widely. One of the departments within Cancer Australia is specifically designed to meet the needs of consumers' involvement and input. One of the projects being undertaken by this department is A National Framework for Consumer Involvement in Cancer Care and Control. As you were present at a consultation for the current


project on consumer involvement being undertaken by Cancer Australia - you are no doubt aware of the depth and breadth of the work and the objectives behind it. If you remember -- this Framework encourages institutions and organisations to involve consumers at all level of decision making. As soon as the final version of the Framework becomes available I will make sure you are sent a copy and I will also organise for HCC to receive copies. Of course there could always be improvements in consumer involvement, however, having been involved with cancer Australia for three years and a member of more than 10 of its committees, subcommittees and grants selection committees -- and having more than my fair share of both praise and criticism to voice, I can say that I believe that I am listened to and -- not always -- but sometimes have a positive outcome. You might be interested to know that at the next COSA conference in Perth, the fledgling Cancer Voices has not only managed to have a consumer session (I think a whole afternoon) but more important to present a 10 minute `consumer perspective ' after most of the keynote speakers. I think this is a huge step forward. Hope this answers some questions. Oh yes -- one final point that I have to keep in mind all the time is that Cancer Australia is an Australian government agency so there are limitations on what it can do.

Consumer Representatives You Are Needed!!

Latest vacancies for Consumer Representatives are: Cardiovascular Health Network WA Health Cardiovascular Health Network Executive Advisory Group (EAG) and Chronic Conditions Consumers and Carers (CCCC) Group. NB: The Consumer Representative will participate in both Groups.

St John Ambulance (WA) Clinical Governance Operations Group Clinical Governance Operations Group. This Group provides community advice and consultation on patient care and good practice

For further detail regarding these positions, or to obtain an Expression of Interest form p lease contact Louise Ford on 9221 3422 or by email: louise.ford@hconc.org.au If you would like to become a Consumer Representative and believe you have the commitment, experience and time to make a difference in the health sector please contact Louise on 9221 3422 or by email: louise.ford@hconc.org.au

By Anne Atkinson Health Consumers' Council Member

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Good Health to Rural Communities A collaborative policy document: March 2004 Australian Local Government Association Health Consumers of Rural and Remote Australia (HCRRA) Inc National Farmers Federation Rural Doctors Association of Australia � Caring for the Country

A 10-POINT PLAN Access to health care is a high priority for all Australians. However, despite much work over the past decade, people in regional and rural communities across Australia continue to experience difficulty and delays when they need to see a doctor. We acknowledge the continuing hard work and financial commitment that state and federal governments and other agencies have applied to the problem of regional and rural doctor shortages. However, further initiatives are needed if people living in these areas are to have fair and equitable access to healthcare services. The Rural Doctors Association, the Australian Local Government Association, the National Farmers Federation, the Health Consumers of Rural and Remote Australia and the Country Women`s Association of Australia call on decision makers to consider the principles and implement the proposals outlined in Good Health to Rural Communities: A 10 Point Plan. These suggestions do not necessarily reflect all the policies of our respective organizations, but they do represent a range of practical options that we jointly support. We submit these proposals and ask that they be given favourable consideration as a means of addressing the pressing issue of adequate healthcare services for all Australians. Doctors and consumers, mayors and councillors in regional and rural communities, country women and our nation`s farmers are growing increasingly frustrated by current inequities in the healthcare system. While much has been done, much more remains to be accomplished. We seek the opportunity to work with government to ensure better healthcare for all Australians. Yours sincerely Councillor Mike Montgomery President, Australian Local Government Association Dr Sue Page, President, Rural Doctors Association of Australia Mr Peter Corish President, National Farmers Association

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Mrs Myra Pincott President, Country Women`s Association of Australia Ms Margaret Brown President, Health Consumers of Rural & Remote Australia

PREAMBLE It is widely recognized that the health of people who live in rural Australia is not as good as that of city dwellers. However the extent and causes of this inequity are not often examined or understood. One of the main reasons for this difference is the lack of convenient and timely access to appropriate healthcare in rural areas. It is now recognized that there is an overall shortage of doctors in Australia, with particular deficits in some urban areas and many rural communities. In spite of recent gains, health economists have estimated that nearly half (44%) the rural population lives in an area which doesn`t have enough doctors. The 30% of Australians who live in the bush get 20% of Medicare rebates and are served by 15% of the medical workforce. Less access to medical care contributes to worse health outcomes in rural Australia where higher levels of mortality and morbidity are recorded for a number of diseases and injuries. Compared to people in urban areas, people who live in the bush have: up to four years lower life expectancy up to 20% higher mortality rates from all causes lower survival rates for cardiovascular disease and cancer 50% higher mortality rates for men from occupational injury and more than double the deaths from road vehicle accidents and suicide higher rates of morbidity and hospitalization a higher incidence of domestic violence, sexual abuse and other social risk factors significant financial and social costs when they have to travel to larger centres for diagnosis and treatment great difficulty in accessing appropriate sexual and reproductive health services.

These inequities are a national disgrace. Nor should it be forgotten that good local access to health services is a key factor in the economic vitality and sustainability of regional and rural Australia. Initiatives introduced as part of the 2000-01 Regional Health Strategy and MedicarePlus 2003-4 will help. However, the basic inequities in access are likely to continue unless more careful and community-focused attention is paid to certain key issues This document outlines some of these issues and sets out practical strategies designed to offer: Page 31


GOOD HEALTH TO THE BUSH 10 Strategies towards Better Health in the Bush 1. Small rural hospitals must be utilized as centres of quality health care and training and their future directed by a focus on health outcomes and community sustainability rather than purely financial considerations. Procedural rural medicine should be sustained through the development of a national strategic approach and initiatives in current and future scholarships and recruitment and re-entry programs. The Medical Specialists Outreach Assistance Program (MSOAP) and other initiatives should be expanded to ensure integration with local healthcare services and the provision of upskilling and support to enhance the sustainability of local healthcare capacity. Higher Medicare rebates should be available to all Australians. In rural areas, incentive payments to doctors should reflect the greater costs and complexity of the medical services provided by rural GPs. The role of practice nurses as part of the general practice team should be extended to allow them to provide other Medicare funded services � eg Pap smears and home visits � without direct supervision. This measure should include Aboriginal Health Workers in jurisdictions where this is allowable. Advanced nursing practice, in which nurses with special skills and qualifications work as part of a collaborative, though not necessarily co-located, GP-led primary care team, should be supported in areas where access to healthcare is difficult. A local government medical recruitment infrastructure fund is needed to assist councils that have to acquire facilities, for example medical practices or housing, in order to attract doctors to rural towns. High quality broadband services are needed in rural communities to enhance social and economic activity generally and to give doctors and their patients the advantages of higher technology, information sharing, electronic patient records and on-line education. Bonded medical school places should be made more attractive and more effective by scholarships and other incentives including exemption from Higher Education Contribution Scheme (HECS) repayments. Overseas Trained Doctors should have access to suitable supervision, support mechanisms and mentoring provided as part of a system which removes unnecessary barriers to their contribution to rural health while ensuring appropriate standards are protected.

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Going into hospital far riskier than flying: WHO GENEVA (Reuters) - Millions of people die each year from medical errors and infections linked to health care and going into hospital is far riskier than flying, the World Health Organization said on Thursday. "If you were admitted to hospital tomorrow in any country... your chances of being subjected to an error in your care would be something like 1 in 10. Your chances of dying due to an error in health care would be 1 in 300," Liam Donaldson, the WHO's newly appointed envoy for patient safety, told a news briefing. This compared with a risk of dying in an air crash of about 1 in 10 million passengers, according to Donaldson, formerly England's chief medical officer. "It shows that health care generally worldwide still has a long way to go," he said. Hundreds of millions of people suffer infections linked to health care each year. Patients should ask questions and be part of decision-making in hospitals, which must use basic hygiene standards and WHO's checklist to ensure safe surgical procedures were followed. More than 50 percent of acquired infections can be prevented if health care workers clean their hands with soap and water or an alcohol-based handrub before treating patients. Of every 100 hospitalized patients at any given time, 7 in developed and 10 in developing countries will acquire at least one health careassociated infection, according to the United Nations agency. "The longer patients stay in an ICU (intensive care unit), the more at risk they become of acquiring an infection," it said. Medical devices such as urinary catheters and ventilators are associated with high infection rates. 'HIGH-RISK BUSINESS' Each year in the United States, 1.7 million infections are acquired in hospital, leading to 100,000 deaths, a far higher rate than in Europe where 4.5 million infections cause 37,000 deaths, according to WHO. "Health care is a high-risk business, inevitably, because people are sick and modern health care is delivered in a fastmoving, high-pressured environment involving a lot of complex technology and a lot of people," Donaldson said. A heart operation can involve a team of up to 60 people, about the same number needed to run a jumbo jet, he said. "Infection is a big problem, injuries after falls in hospitals is a big problem and then there are problems that are on a smaller scale but result in preventable deaths. Medication errors are common," he said. Risk is even higher in developing countries, with about 15 percent of patients acquiring infections, said Dr. Benedetta Allegranzi of the WHO's "Clean Care is Safer Care" program. "The risk is really higher in high-risk areas of the hospitals, in particular ICUs or neonatal units in developing countries." About 100,000 hospitals worldwide now use the WHO's surgical safety checklist, which the agency said has been shown to reduce surgery complications by 33 percent and deaths by 50 percent. If the checklist is effectively used worldwide, an estimated 500,000 deaths could be prevented each year, it says. "Frankly, if I was having an operation tomorrow I wouldn't go into a hospital that wasn't using the checklist because I wouldn't regard it as safe," said Donaldson. Thu Jul 21 18:23:51 UTC 2011 By Stephanie Nebehay (Editing by Robert Woodward)

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Half of us delay dental or health care due to cost AUSTRALIANS are struggling to afford health and dental care because of soaring out-of -pocket expenses, with figures showing nearly half the population has put off at least one of a variety of treatments on cost grounds. The biggest pressure is in dental care, with more than a third of Australians postponing or avoiding seeing a dentist in the past year because of the cost. Newspoll research conducted for The Weekend Australian has found significant minorities of patients, ranging from 13 to 19 per cent, avoided seeing a doctor, buying a medicine or having a test because of the cost - as official figures show out-of-pocket medical charges are continuing to soar. The findings have triggered calls from patient groups and the Greens for the government to do more to help patients cope with high medical and dental bills. The Greens last night described out-of-pocket costs as a "very, very important issue", and called on the federal government to commit all the $2.8 billion savings from the planned means-testing of the private health insurance rebate into new measures to cushion Australians from excessive health bills. Greens health spokesman and former GP Richard Di Natale said inequities in the ability to access and pay for healthcare were "one of the glaring deficiencies of the health reform debate". "The government is aware that our agreement with them is conditional on significant reform in the area of dental health," Senator Di Natale said.

"The means test should only happen if there's commitment from the government that the money (saved) is specifically spent on the issue of out-of-pocket costs." Senator Di Natale stopped short of threatening to withdraw Greens support for the means test if the government refused to make such a pledge, describing the rebate as a wealth redistribution "exacerbating problems we have with a two-tier health system". But the linking of the two issues was likely to come as a distraction as the government attempts to muster support for the means test in the lower house, as well as threatening to upset its fragile budgetary arithmetic. The Newspoll research also found that 45 per cent of Australians lacked confidence that a mental health patient would receive adequate care. The research also found slightly more than one in five Australians faced what they considered as unreasonable delays in being able to see a GP. While half of Australians felt the delays were about the same as five years ago, more than onethird, or 37 per cent, thought they had got worse in that time.

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In addition, while 88 per cent of Australians were confident they would receive highquality and safe care if they fell seriously ill, the proportion who were not confident doubled, from 11 per cent to 22 per cent, when the question became whether they were confident they would be able to afford their care. The findings reflect a continued worsening of affordability measures seen in other surveys as well as official statistics. Doctors and health experts warn that some lowincome patients are increasingly not turning up for specialist appointments because of soaring private fees. The latest Medicare figures show that average out-of-pocket charges over the past five years have risen by 50 per cent for medical scans, by 89 per cent for blood and other pathology tests, by 84 per cent for operations and by 168 per cent for obstetrics. Maurice Fabiani, chairman of the newly formed Australian Patients Association, said it was clear affordability was "a major issue". Source: Adam Cresswell Health Editor The Australian August 20th 2011

Digitising Data is not the point Personal e-Health records must do more than share data between computers. Article by Karne Dearne -- IT writer There`s one key question about the $500 million being spent on Nicola Roxon`s personally controlled e-Health record system: will it computerise the sector, sweep paper records in the bin, connect doctors to each other and give real-time access to critical medical information? It might eventually, but e-Health experts aren`t holding their breath. The long awaited draft concept of operations for the system reveals a simple viewing platform containing some personal health data. It`s not a blueprint for system that will take information out of manila folders and put it into dynamic formats, ready for sharing and use in new ways. We`re spending half a billion dollars on something that holds a copy of documents held in existing medical provider computer systems, says Aushealth IT blogger David More. This approach does not facilitate clinical decision support or the sophisticated intelligence and analytics tools which deliver most of the benefits from e-Health records. For the past three years Melbourne GP and Monash University associate professor of General Practice Peter Schattner has been part of a pilot study of a system that does just that. CDM.Net is a fully electronic chronic disease management network. It`s a program offering real benefits in improved patient care, fewer hospital admissions and cost and efficiency savings that can be directed elsewhere. CDM.Net has government grants for two new trials at lead e-Health sites in Sydney and Canberra over the next year. Page 35


Patients with chronic diseases such as diabetes or lung disease generally have a personal care plan that`s managed by their GP and shared with other members of their care team Schattner says. This web-based program makes the whole process much easier and has a number of advantages over the computerised templates currently used. For instance, care plans contained in computerised templates are essentially PDF documents that must be printed out and faxed. Instead, CDM.Net is a real time record system that generates alerts. Patients find the SMS reminders for followup visits very useful, but patients haven`t yet had as much direct involvement into their care plans as we`d like, Schattner says. They`re able to enter their plan from home and upload their own clinical data, such as blood pressure or glucose readings. But people with chronic diseases tend to be older, and the technology is beyond many at this stage. Schattner warns it will be difficult to move beyond e-Health pilots, as medical specialists rarely use computers, and the level of clinical computerisation in allied health varies. This system is being taken up, but not as quickly as one might think if you look at the benefits. Michael Georgeff, chief executive of Precedence Health Care and leader of the CDM.Net project, says the national infrastructure program is necessary, but by itself the Personally Controlled Electronic Health Record (PCEHR) is not going to add the value we want People need to be very clear that it`s only when you start plugging in applications like ours that we will get benefits Georgeff says.

Just dropping data on somebody`s desk won`t make health care more efficient. CDM.Net is a fully automated system, operating over the internet. The latest pilots will link primary care teams with the acute sector by connecting to local hospital systems. But Georgeff fears delays in producing useful tools and outcomes will discourage adoption. All the stakeholders in the PECHR program need to get significant value from it, otherwise it won`t be used, he says. There is a question of what you build first and what you build second, but you want to be delivering some solutions at the same time as the basic infrastructure. Georgeff suggests a focus on workflow and adding processes that make a difference are essential for success. We need to look at the things that bring efficiencies to the healthcare system, and provide real value to each stakeholder. After all, he says, e-Health is really about automated solutions and automating tasks, not simply shifting data around. Article taken from HEALTH WEEKEND AUSTRALIAN April 23

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Join a team of world leaders! This is Kathy Redmond. Kathy Redmond is an ex-President of the European Oncology Nursing Society. She is an ex-Board member of the International Union against Cancer. Cancer Plan and with the staging of the COSA Annual Scientific Meeting in November of this year. CVWA's goals for 2012 include � Forging even closer relationships with other health advocacy and cancer control bodies in Western Australia. Collaborating with cancer support groups in metro, regional and rural WA to offer advocacy services right across the state. Developing a comprehensive training framework for people wishing to engage as consumer representatives in specifically cancer control organisations. Setting up the means to spread the good news about cancer (there is heaps of it) and to tell the stories of people who have survived to go on enjoying life with or after cancer.

More recently, Kathy played a role in the establishment of the European Cancer Patient Coalition. On 13th April this year, she stated to a Cancer Australia audience in Sydney that, in her opinion, Australia leads the world when it comes to consumer engagement in cancer control. Cancer Voices Australia (CVA) is an influential national advocacy organisation for people affected by cancer and contributes mightily to the efforts that have earned accolades from people like Kathy Redmond. CVA has participated in national dialogues about many issues including a National Framework for Consumer Involvement in Cancer Control, gene patenting, changes in federal policy relating to listing of drugs by the PBS and the National Cancer Workforce, to name just a few. Cancer Voices Western Australia (CVWA) is a founding member of CVA. The Chair of CVWA sits on and works with the Board of CVA. This connection enables people in WA affected by cancer to have a voice in the national debate. CVWA was re-born in March 2010 thanks to an initiative by CVA and the Cancer Council of WA. Since then, CVWA has focused on defining how it can make a meaningful contribution to cancer control in WA. For starters, the association has assisted with the design of the new State

Like all voluntary organisations, CVWA needs more members to take on roles such as: ambassadors consumer representatives on state advisory committees and groups advocates for WA consumers with a cancer -related issue to help organise and distribute positive news and information about cancer and in so doing; lessen ignorance about and fear of cancer in the WA community.

There is ample evidence that success in this regard will have a significant positive effect on outcomes for people diagnosed with cancer.

CVWA needs new members to make it all happen. If you would like to be part of a world-leading team, please contact the Secretary to the Executive Committee of CVWA on 08 9382 9329 or HCC of WA on Page 37


Half of us delay dental or health care due to cost What Consumers Reforming Health Conference Report: Are the three new lessons you`ve learnt? We as consumers need to feel that if we want to we can assist towards change within the health system. It is important that no matter what issues we face with our health or healthcare, we play a part in raising awareness of these issues along with working together in finding ways to overcome them. I have always believed that each person possesses an undiagnosed disadvantage. The difference with a person with a disability is that they have a diagnosed disadvantage. In my experience, I`ve learnt that all disadvantages, undiagnosed or diagnosed, can be overcome. At the Conference, it was heartening for me to hear that many people recognised and appreciated my work in raising awareness for youth health. Hearing that feedback gave me the power to continue my work throughout the 11 days I was in Melbourne. It inspired me to continue raising awareness with the belief I could change perspective along the way which may bring even more new and exciting change to the health system. It also helped me learn on getting consumer feedback. I have also learnt that the health system is very different in every State and around the world, especially in the way funding is distributed. I would be very interested in going to see, and of course learning along the way, what is available in the health system for people with disabilities. On speaking with Dr Jocelyn I have a greater appreciation for the perception of doctors and medical staff from other countries and nationalities. Their stories and outlook is very amazing and inspires me to go and look at the health services available for people with a disability and health illnesses in other Page 38

countries. If I ever get the chance I would be very grateful. I was also very thankful to be shown around some different locations at the Royal Children`s Hospital in Victoria. I am very appreciative to have had this opportunity and found it very inspiring. I also got the opportunity to speak with Liat and Shane (Family Advisory Council members) along with Julie O`Brien and over the three days of the conference we all had several conversations regarding our various experiences. I am very thankful to have spoken with them and without the opportunity to attend the Consumers Reforming Health Conference I would not have had these opportunities. I am very much looking forward to conversing with these three people in the future. I would also like to thank Julie and the staff on duty at the weave station for taking the time to explain the idea of weave which in my understanding allows patients and visitors alike to express what they would possibly like to see in the new hospital through giving something they feel appropriate to weave in it. Construction of the new children`s hospital will be completed with the reassurance that consumers` thoughts and feelings are definitely heard. I was also honoured to have a chat with Jordan from the new children`s hospital project team. Amongst her roles within the project, she facilitates the Youth Advisory Committee meetings in regards to the new hospital. I am thankful for all of these experiences. If I had not attended the Melbourne Consumers Reforming Health Conference these issues would not have come to light. Some illnesses and disabilities are more recognised than others. Breast cancer was


presented several times. Unfortunately the carer or carers of a person who has been diagnosed with breast cancer to my knowledge were not mentioned. The topic of what the extra challenges and concerns facing a person with a physical disability could be due to the fact that the person is unable to detect the symptoms themselves. This topic was not delved into at the conference. Unfortunately due to the time constraints, I could not raise this question. A memorable experience was when an older gentleman by the name of Gary Cooper came to me rather excitedly and invited me to the Health Consumers` Advisory Council meeting in Box Hill Whitehouse Community Advisory Council where he was a longstanding member. The meeting was the very next day. I attended and as they were very keen to create awareness of this forum, they arranged a reporter to come. Much to my surprise, I saw an article in the Melbourne paper in the mail of me attending the meeting. I can officially call this one a scoop on their part as this is the only time to date that I have ever been in the Melbourne paper. Overall, the conference went really well. I did feel however, that there were too many speakers presenting at the same time bracket and the level of health professional to consumer speakers need to change. It would have been beneficial to engage more consumer speakers so that they could inform health professionals and the community of their experiences. Having said this, I believe that there is room for conferences like this in the future. Barriers to Consumers Reforming Health Consumers may feel intimidated by professionals. However, as a consumer, you are an advocate for yourself and others in your situation and are doing a good thing by raising awareness to improve the services for others. Health professionals appreciate your advocacy. As a wheelchair bound person, I had to use

the lift quite often. On the third day of the Conference, a lift that took me up and down the exhibition centre many times before had now reprogrammed my wheelchair and caused the remote control system to stop working. A screeching horn sound came from my wheelchair and I was surprised to find myself stationary in the lift unable to get the wheelchair moving again. When the lift door opened, I was amazed to find a security guard come and ask me if we were okay. On telling him, he said something into his two way radio and walked away. There was really nothing he could do. Luckily for me, my carer finally worked out how to turn on the manual override switches on the wheels and my carer had to push my wheelchair out of the lift. After many calls to various departments in Melbourne, Perth and finally Sydney, we now know that the problem came down to a magnetic field in the lift somehow demagnetising my wheelchair and causing the electronic system to shut down. The solution to this problem lay in a strong magnet which would magnetise and reprogram the computer system. We then had to ask the events management at the Conference to assist in helping us source for one and after a total time of 1 to 2 hours had finally managed to get the wheelchair to work again. We are very thankful for the maintenance department`s assistance. What are the actions you could put in place from the lessons learnt at the Conference? I intend to start putting in to place/offers gained through conversations with the organisations in Melbourne hopefully in the near future, possibly leading to assisting with some of the projects there. This as a person who believes it is important to raise awareness in any way and as a motivational speaker is a big achievement as it is important in raising awareness of my diagnosed disadvantage. I am very thankful Page 39


for this as I hold this passion close to my heart. A few years ago, a dear friend of mine also had cerebral palsy. I received a phone call from her Dad to inform me that she had passed away. After that time, my life changed forever. This is also why I continue to do volunteer work with the Health Consumers` Council and three other committees including Princess Margaret Hospital and Youth Parliament. My aim for being on these committees is to raise awareness of a disability being a diagnosed disadvantage and health issues for disability and youth. To speak for those who can`t speak for themselves is what I will endeavour to do or many more years to come. A legacy is a powerful thing in itself. It is part of making a difference. Which speaker made the most impression and why? Maureen Wilson � Consumers and health services as equal partners. Maureen made the most impression on me as she spoke about her own personal experience with her daughter who has a disability. This personally touched me as a person with a disability. I believe her story also had an impact on many others. At one stage during the presentation, I looked around the seminar room and could see the eyes of many welling up as they heard Maureen`s story. What are the lessons you have learnt from the ideas and strategies presented at the Conference that could be taken out immediately and in the mid term (say in 6 months time)? I have learnt that there are many different types of health issues and there is room for a forum in Perth for people in Perth to attend so health professionals know of the Page 40

health problems faced by consumers in their area. It can also help identify the areas of training they can obtain to help the wider community. I feel that general practitioners and all health practitioners, still need more training in how to treat consumers with complex health issues. I would also encourage more young people (aged 15-35) to get involved as there are currently very few who do. I want to see more young people involved and getting the best health experience they can. I thank the Health Consumers` Council and the Victorian Health Issues centre for allowing me to attend the Conference and looking forward to assisting the organisations further. I currently have contact with other delegates from the Conference and I believe that I can make a difference. Peter Hall


Mental health patients need protected health services and better discharge planning For people with a mental illness, early discharge from hospital can and does have potentially devastating consequences. We need look no further than the cases of 52year-old Michael Thomas and 18-year-old Ruby Diver, who took their own lives following discharge from the Alma Street mental health service at Fremantle Hospital. Both Michael and Ruby relied on the facility to protect them from their demons and give them the medical care they needed and a discharge plan to keep them safe and well. However, this was not the case and both were discharged against their own will and that of their families following a questionable medical response. Both are now dead. These two cases are not isolated, and there have also been questions surrounding early discharge of mental health patients at the Kalgoorlie Regional Hospital and allegations of suspected suicide. Add to this the pressures of staffing, especially the lack of psychiatrists, psychologists, mental health nurses and social workers, and it is clear that patient care can easily become the causality and does. It remains highly questionable whether or not mental health patients are being given the level of medical attention required for effective recovery. And when you add to that the pressure on mental health beds, it`s a toxic cocktail for a growing number of patients and their families. The case of Ruby Diver highlights the human toll on poor discharge planning and practise. She had attempted to kill herself on the ward the day before she was discharged from the Alma Street Centre and the following day had pleaded with hospital staff not to discharge her because she felt unsafe. Ruby was just 18 years old when she left her Bicton home and took her life in a nearby park. Just as shocking is the case surrounding the disappearance of Michael Thomas, who was admitted to Fremantle Emergency . He was transferred to the Alma Street psychiatric hospital ward for four weeks during which time his family expressed concern that he didn`t receive any counselling for the first three weeks and the medication he was on didn`t seem to be helping his state of mind. Following a transfer to the Hampton Road service for a further four weeks of rehabilitation, he was discharged in a fragile state. On May 31 Michael attempted suicide for the second time, overdosing on insulin which resulted in a diabetic coma. He was admitted to the Fremantle ED and was then transferred to the Medical Assessment Ward where he stayed for two nights without any psychiatric assessment. The family was advised on June 1 that he was to be discharged the next day and were given assurances that he would not attempt suicide again and there was no need to be seen by a psychiatrist as the situation was not serious enough. The doctor then advised family members that there were six other patients in more urgent need of attention and there was no reason to hold Michael against his will as he was beyond help because he was an impulsive chronic suicidal and not an acute suicidal.

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On the day of his discharge, June 2, Michael was given a 20-minute consultation with a psychiatric registrar and the case manager who reported that whilst the patient is at chronic risk of suicide/self harm due to his depressive symptoms and impulsivity, there is no acute risk at present and as such would not benefit from a psychiatric admission. While Michael`s wife was in the shower the next day, preparing to take him to a psychiatric appointment at Alma Street, Michael left the house and has not been seen since. He did not take his wallet, any money or other belongings besides the clothes he was wearing. Mrs Thomas said she was angry her husband was discharged after two days without seeing a psychiatrist and fears he may have tried to harm himself again after going missing on June 3. "If they'd have kept him in, we wouldn't be going through this hell," she said. "These people feel vulnerable and worthless as it is, and then to be told by the hospital you are beyond our help, just go away." Mrs Thomas said her husband had been depressed for several years and in January he spent time in a psychiatric unit. There are many factors that impact on whether or not a doctor determines a person does not meet the clinical needs of an acute hospital in-patient any longer, and so a clinical discharge can take place, especially the availability of beds when it comes to mental health patients. While a hospital discharge policy exists and applies in all WA public hospitals, the extent to which it is adhered warrants some scrutiny. The policy acknowledges that there are particular groups of patients for whom Page 42

significant discharge arrangements are required and for whom early planning is essential. Among them are those with severe physical, mental or emotional problems. Discharge planning is an important part of admitted patient care as it ensures continuity of care leading to an effective post hospital recovery and greater patient satisfaction. All phases of patient care should be planned and managed by those involved in providing the care with active input from the patient and/or the patient`s family. Good discharge policy has the added benefit of reducing unplanned readmissions to hospital. However, when the hospital system is under pressure it is not always clear the discharge planning has taken place, if any, let alone whether it is good or not. Problems with discharge practice was recently acknowledged in the parliament by the Minister for Mental Health Hon MLC Helen Morton who said the discharge issue is a huge issue that needs to be improved and that the government has made a significant commitment to make changes to that in this coming financial year by allocating funds for dedicated mental health brokers` in the community to involve themselves in the discharge planning and, if possible, the admission of people. These problems have been with us for many years. It is not good enough for the Minister to say that the government has made a significant commitment to make changes in this coming financial year by allocating funds for dedicated mental health brokers in the community to involve themselves in the discharge planning and, if possible, the admission of people.


Firstly, the funding is required now and the government is into its third year in office so there has been ample opportunity to address this issue if there is a will to do so. Secondly, mental health brokers may go some way to provide support to people who don`t have family to advocate on their behalf, but the real issue is not that there are no advocates, as it is usual in most cases that the family will undertake this function. The issue is that families are not being heard by the health system and they must be. Thirdly, there is a view that the pressure on limited mental health beds means that a doctor may determine a person does not meet the clinical needs of an acute hospital in-patient any longer, because there are a queue of perspective patients waiting for the next available bed. While the Minister for Mental Health has acknowledged the shortfalls of the discharge policy, she has done little in the past three years to cause a review or make the necessary changes to make it better and safer for patients and their families. Lil's Opinion

Parental perspectives on caring for a child with chronic kidney disease: An in-depth interview study: Article by A. Tong, P Sainsbury & JC Craig Centre for Kidney Research, The Children's Hospital at Westmead, NSW Abstract BACKGROUND: Children diagnosed with chronic kidney disease (CKD) depend on their parents for complex, continuous and intensive support. The study aimed to explore the experiences of parents who have children with CKD. METHODS: Parents of 20 children with CKD, recruited from two paediatric hospitals in Australia, participated in an in-depth interview, qualitative study. RESULTS: Four major themes were outlined: (1) absorbing the clinical environment: parents struggled to accept the diagnosis and permanence of CKD, felt traumatized watching their child undergo invasive clinical procedures, battled to meet appointments, negotiated with staff for their child's needs and felt disempowered; (2) medicalizing parenting: parents became caregivers, a role which was stressful, exhausting and overwhelming. Dialysis was unrelenting and consumed the time, thoughts and energy of parents who felt at fault if their child developed infections and other complications. Parents struggled with their child's psychological problems and episodic aggressive behaviour; (3) disrupting family norms: CKD caused spousal tension, sibling neglect and influenced family planning; (4) coping strategies and support structures: parents depended on support from their health care providers and valued meeting and learning from other parents of CKD children. Parents also expressed information needs and suggest methods of communicating information. CONCLUSIONS: Despite facing profound and pervasive difficulties, parents strived to fulfil their dual parental and health care provider responsibilities. Parents appear to need better support structures to help them cope with the difficulties encountered during all stages of their child's illness. Page 43


WHO Director-General names Sir Liam Donaldson envoy for patient safety

News release 21 July 2011 | Geneva WHO Director-General Margaret Chan has named Professor Sir Liam Donaldson as WHO Envoy for Patient Safety. In this role, Sir Liam, who served as England's Chief Medical Officer between 1998 and 2010, will help the Organization promote patient safety as a global public health priority. Specifically, Sir Liam will mobilize political support for WHO Patient Safety with health leaders around the world and with major donors, philanthropic organizations and governments for priority activities addressing patient safety issues at national and international levels. He will also advise the WHO Director-General on strategic issues in patient safety and propose strategic actions and collaborations at global level. Ensuring patients receive safe, high quality health care "With this nomination, WHO is signalling the importance of ensuring that patients get safe, high quality health care all around the world," says Director-General Margaret Chan. "With the support and intellectual leadership of Sir Liam, the Patient Safety Programme has grown from a small specialist initiative within WHO to a global advocacy and scientific community, with activities in over 140 countries and all six WHO regions. It is now poised to do even more." Hundreds of thousands of patients affected Every year, hundreds of thousands of patients worldwide are harmed or die while using health services. Data from WHO and other sources indicates that patient safety incidents occur in anything between 4% to 16% of all hospitalized patients. A recent WHO Report on the burden of endemic health care-associated infection worldwide estimates that such infections affect hundreds of millions of people globally. The burden is at least twice as high in developing countries compared to developed countries. Patient Safety Programme In many cases, this harm is preventable. WHO's Patient Safety Programme (formerly the World Alliance for Patient Safety) was established in 2004 to coordinate, facilitate and accelerate patient safety improvements around the world. In its first seven years, the programme has stimulated global awareness and knowledge about the importance of patient safety towards building and maintaining effective health systems and services. WHO Patient Safety Programme created the world`s only global "Patients for Patient Safety" movement, and obtained 124 country pledges to reduce health care-associated infection, The Page 44


programme also launched the world's first ever "Safe Surgery Checklist", used by more than 1500 hospitals. Its Patient safety curriculum guide enables undergraduates to learn about patient safety before going into clinical practice. Meanwhile 13 000 health-care settings worldwide have taken action to reduce infection rates through improved hand hygiene. Awareness of patient safety "We have come a long way in raising the world's awareness of patient safety, but challenges still remain," states Sir Liam. "Health care has not achieved the level of safety of many other high-risk industries. Citizens of countries around the world find it incredible that errors lead to patients getting the wrong operation or the wrong medication, sometimes with fatal consequences. Lessons need to be learned from such tragedies and action taken. The WHO Patient Safety Programme will be the cornerstone of a renewed effort globally to address these issues." Sir Liam served as the Chairman of the World Alliance for Patient Safety. He currently holds a number of appointments including, Chancellor of Newcastle University, Chairman of the National Patient Safety Agency in England, and Chair in Health Policy at Imperial College London. For more information, please contact: Dr Najeeb Al Shorbaji Director, a.i. WHO Patient Safety Telephone: +41 22 791 16 64 E-mail: alshorbajin@who.int Caroline-Anne Coulombe Technical Officer, Communications WHO Patient Safety Telephone: +41 22 791 5426 Mobile: + 41 79 477 0430 E-mail: coulombec@who.int

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The right medicine A federal senate inquiry into the process of listing medicines on the Pharmaceutical Benefits Scheme (PBS) has been welcomed by consumers opposed to recent government intervention in the PBS approval process. In April, Cabinet deferred its decision on several pharmaceutical products recommended for inclusion in the PBS by the government`s Pharmaceutical Benefits Advisory Committee (PBAC) at its February meeting. The drugs were deemed to be cost effective and offer value for money. It`s been claimed the deferral is a cost cutting measure. measure for returning the deferral budget to surplus, she says. Health economists have further suggested that a revision of the current generic drug pricing agreement would easily accommodate the cost of introducing these and other cutting edge medications. The NZ government, for example, pays $1.44 for a one-month supply of cholesterollowing drug simvastatin. The world average is $6.45; our government is paying $31.18. Paying international prices and switching to 100% generic statins could save almost $10 billion over 10 years. Introducing a NZ-style tendering system for all off-patent drugs could produce even greater savings. KARINA BRAY

The deferred drugs, which include treatments for schizophrenia, chronic pain, lung disease and enlarged prostate, may be funded later. But pharmaceutical companies say patients` health could be at risk due to the delay. The expertise and experience cabinet ministers have at their disposal to override decisions of their own expert committee has also been called into question. Carol Bennett, CEO of the Consumer Health Forum, supports the inquiry. In a developed country such as Australia, the provision of affordable, timely and effective medicines is a right that should not become a political bargaining chip or a short-term Page 46


Good Old fashioned Recipes.... BUSH BROWNIE (If it turns out a bit dry, slice and butter it to eat, or slice it and pour hot custard over for desert. If not dry slice it and serve as cake). Bring to boil: 2 cups water 2 cups sugar 1 cups sultanas � lb butter or margarine good teaspoon salt Simmer for 5 minutes, then allow to COOL (do in morning finish in afternoon) Then add 2 beaten eggs to the mixture. Sift together into large bowl� 2 cups plain flour 1 teaspoon bicarb soda About 1 � to 2 teaspoons Spice (usually mixed spice and/or cinnamon but can use ginger or whatever takes your fancy) Then stir the liquid mix into the dry ingredients and mix well. Bake in moderate oven � the size of tins you use will govern cooking time (cooks much faster in camp oven in coals than in a gas oven � believe me! I will take at least 45 minutes but could be up to 90 minutes depending. SHEARERS BISCUITS 1 � cups plain flour 1 tsp bicarb soda 1 tspn cinnamon � tsp mixed spice 6oz margarine (Outback is not decimalised yet) � cup brown sugar 2 eggs 2 tsp grated orange rind (or lemon or lime) 1 � cups rolled oats 1 cup sultanas Sift dry ingredients together. Cream butter and sugar. Beat in eggs and rind. Add rolled oats and fruit. Mix well. Add dry ingredients. Mix well. Roll heaped teaspoons into balls place on greased oven trays and press does lightly with fork. Bake moderate oven 10 � 12 mins or until light brown (up to 35 min).

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Health Professionals Don`t Listen to the Patient Whilst discussing the death of my friend who was a member of our seniors club the conversation got onto the heart monitor one of the ladies is wearing and the distinct lack of notice the medical profession takes of what a patient says. About six weeks ago this lady was at one of her craft sessions at another club, she got up from her sewing machine, was walking across the room and then the next thing she knew she was on the floor, with a big lump on the back of her head and other friends there asking if she could hear them and if she felt OK. She assured them she could hear them, asked how long she had been unconscious, was told only a second or two, however they had called an ambulance and for her to stay put. The ambulance officers when transporting her to hospital (not sure whether it was Sir Charles Gairdner or Royal Perth) asked her if she had had a dizzy spell and she emphatically said no. From then on it did not matter which doctor or nurse she spoke to they all started off by saying - so you had a dizzy spell �then she had to each time say emphatically � no. They did do a CAT scan on her brain which showed no abnormalities, they did an ECG on her heart which did indicate a slight murmur and as a result she is wearing a type of heart monitor that indicates in some way if her heart beat goes funny in which case she places the monitor over her heart and it records what is happening and then she has to go to hospital so they can read it. Anyway she was discharged after a day or so of observation and a letter was sent to her doctor with a pile of stuff detailed on it and fortunately she was given a copy. When she saw her GP, she said she wanted him to explain a lot of the terms they had written in the letter and she wanted one statement fully corrected. The hospital had written in the letter that she had suffered a dizzy spell and this is in spite of her telling all and sundry that she had not suffered a dizzy spell. This is a perfect example of how still the medical profession does not take any notice of the patient. I wish to point out this lady is only in her early seventies, is very articulate, very intelligent, and through various conversations over the last few years, as far as I know, the only health problem she has is bursitis in the hip for which she gets the occasional injection to help control it. By Margaret Ryan Health Consumers' Council Member

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World Elder Abuse Awareness Day Report to Health Matters, HCCWA On the evening of 14 June 2011 the City of Perth illuminated both Council House and the Bell Tower in purple to raise awareness of World Elder Abuse Awareness Day (WEAAD) the following day, 15 June. The highlight of WEAAD activities in Perth, Western Australia was the launch of the research paper "An Examination of the Extent of Elder Abuse in Western Australia: A Qualitative and Quantitative Investigation of Existing Agency Policy, Service Responses and Recorded Data." The report may be accessed via the following link: http://www.advocare.org.au/uploaded/files/client_added/ Examination%20of%20the%20Extent%20of%20Elder% 20Abuse%20in%20Western%20Australia.pdf Ninety six invited guests gathered to witness the launch. Begun in 2009, this research examined how elder abuse information was recorded across the range of government Departments which comprise the Alliance for the Prevention of Elder Abuse in Western Australia. Three key findings were identified and twenty six recommendations were made to facilitate future best practice. One of the recommendations made was that Advocare convene a national conference on elder abuse in Perth in June 2012. Retired District Court Judge, the Honourable Antoinette Kennedy launched the research at Citiplace in central Perth. She called on the community to act on the recommendations made by the researchers, in particular, the registration of Powers of Attorney and the auditing of Centre link nominee arrangements. The report was formally launched with a call for the establishment of a committee to report progress on the implementation of the research recommendations to the Minister. To mark World Elder Abuse Awareness Day (WEAAD) 2011, the Office of the Public Advocate held a series of information sessions in the South-West of the State during the week of WEAAD. Three of the five sessions were held in Bunbury, Manjimup and Wagin and catered to the needs of community members and service providers. The sessions covered the use of Enduring Powers of Guardianship and Advance Health Directives to plan for the future and minimise the risk of abuse and exploitation. On World Elder Abuse Awareness Day itself, two sessions were held in Albany. A morning session was directed at community members, focusing on the use of Enduring Powers of Attorney (EPAs) and Enduring Powers of Guardianship (EPGs) The afternoon session was tailored for service providers, to inform them on their role in promoting and protecting the rights of vulnerable adults, through the proper execution and operation of EPAs and EPGs. Over 110 people in total attended the five sessions and feedback was overwhelmingly positive. At another event in Bunbury, a community service agency organised a walk with banners and purple

shirts. About 30 people participated. The Mayor of Bunbury read a statement condemning elder abuse and the local paper and radio publicised the event. The Older People's Rights Service prepared a static display outside the Seniors Centre and Library Complex in the Perth suburb of Whitfords, giving information about elder abuse and contact points for assistance. In far away Three Springs (313 km north of Perth) some health service staff wore purple on the day and displayed posters around the facility and the doctor's surgery. Staff read the policy on elder abuse and plan to watch "Protecting Older People from Abuse" when it is shown on the Aged Care Channel in August this year. Residents of Narrogin, a regional centre 192 km south east of Perth, were informed of the significance of WEAAD through a Community Care Services newsletter. Further publicity was achieved through a succession of interviews with the CEO of Advocare, Mr Greg Mahney for both radio and print media. On the morning of 15 June one of our advocates, Ms Fran Rafferty was interviewed on the ABC talkback radio program "Mornings" with presenter Geoff Hutchison. 2011 has been the biggest yet in regard to publicising WEAAD in Western Australia. Our research report reopens the topic of elder abuse in Australia where up to date information has been lacking for some time. The report gives guidance on some ways we might begin to address the issue. Given the size of Western Australia, it is extremely heartening to report that we now have pockets of people promoting WEAAD activities in regional centres and small towns far removed from metropolitan Perth. Page 49


The real meaning of life You`re all set for your weekly run to the supermarket. You have your shopping list, your calculator, your secret decoder ring... what? No decoder ring? How will you ever read those food labels? The terminology used on labels these days can seem impossible to decipher. But behind every low-this and reduced-that is a standardised definition. Each definition sets forth specific nutritional criteria that a good must meet in order to feature that term to its label. If you know what the various terms mean, you can compare foods at a glance and choose the one that best meets your dietary needs. Here`s a sampling of some commonly used label lingo and the nutritional information that it represents: Sugar-free: Contains less that 0.5 gramme of sugar per serving. Calorie-free: Contains fewer than five calories per serving. Low-calorie: Contains 40 or fewer calories per serving. Reduced-calorie: Contains 25 percent fewer calories than the regular product. Fat-free: Contains less that 0.5 gramme of fat per serving. Low-fat: Contains three grammes or less of fat per serving. Reduced-fat: Contains no more than 75 percent of the fat found in regular versions or comparable food. Light or lite: Contains one-third fewer calories or half the fat of the regular food. Cholesterol-free: Contains less than two milligrammes of cholesterol and two grammes or less of saturated fat per serving. Low-cholesterol: Contains 20 milligrammes or less of saturated fat, Page 50

and 13 grammes or less of total fat per serving. Reduced-cholesterol: Contains 75 percent or less of the cholesterol found in the regular food and two grammes or less of saturated fat per serving. Sodium-free: Contains less that five milligrammes of sodium per serving. Very low sodium: Contains less that 35 milligrammes of sodium per serving. Low-sodium: Contains 140 milligrammes or less of sodium per serving. Reduced-sodium: Contains no more than 75 percent of the sodium found in the regular food. Extra-lean: Refers to meat, seafood or poultry that has less that two grammes of saturated fat, less that five grammes of total fat, and less that 95 milligrammes of cholesterol per 90gramme serving. Lean: Refers to meat, seafood or poultry that has 4.5 grammes or less of saturated fat, less that 0 grammes of total fat, and less that 95 milligrammes of cholesterol per 90gramme serving. High in: Supplies 20 percent or more of the Daily Value (DV) of a given nutrient per serving. Good source of: Supplies 10 to 19 percent of the DV of a given nutrient per serving. Fresh: Refers to a food that is raw, that has not been processed, frozen or heated, and that contains no preservatives. Freshly: Refers to a food that has been made recently; may be used with baked.


Specific priority actions for rural and remote health 1. Rural Health Australia and a National Rural Health Plan The Alliance supports the proposed establishment of Rural Health Australia in the Department of Health and Ageing. It will chair an inter-departmental Board to advise Government on rural health and will be accountable through a report to Federal Parliament.

The core of Rural Health Australia's work will be implementation of a new Rural Health Plan to be agreed with the States/Territories and rural health consumer groups.

2. Oral health A permanent National Advisory Council on Dental Health should be established with representation from all appropriate sectors.

Following abolition of the Chronic Disease Dental Health Program, $750million per year should be allocated to a Commonwealth oral health program to focus on those most in need, including people in rural and remote areas; and a new early childhood and school oral health service established. A range of workforce support programs like those provided to rural and remote medical students and graduates should be available to rural and remote students of oral health.

3. Broadband solutions in more remote areas There should be a special grants program to ensure that `difficult to access' homes, businesses and services can take advantage of the rollout of high speed broadband. 4. Publicly funded primary health care models for rural communities Where private fee-for-service models of health care are not viable or do not meet need, the Federal Government, with the States and Territories, should fund comprehensive health care services using salaried staff or innovative business models. 5. Improving rural educational outcomes Tertiary educational institutions should be required to set, meet and report on targets for the number and proportion of their students who are Indigenous and of rural/remote origin.

To optimise tertiary education enrolments and completion rates, new support programs should be funded as part of `an educational pathway' for Indigenous and rural students.

6. Aged care Aged care subsidies for rural areas must be set at rates which reflect the true costs of delivering community and residential aged care in those areas. 7. Rural placements for health professionals Government should establish a collaborative rural placement scheme for health undergrads, providing greater equivalence of support for all professional groups (medical v other). 8. Mental health The National Mental Health Commission must give attention to how mental health services translate to areas where staff are not available, and the National Report Card on Mental Health and Suicide Prevention must include a report by remoteness. 9. Integrated primary care in rural areas The Alliance seeks bipartisan commitment to local control and integration of health care, with the delivery of health services undertaken on the basis of relatively small areas which reflect communities of interest. Page 51


General priorities for action on rural and remote1 health: Detailed report from Council of the National Rural Health Alliance Introduction Council of the National Rural Health Alliance has just completed its annual face-to-face meeting in Canberra. At the meeting, the 32 national bodies in the Alliance agreed on immediate priorities for action to improve the health and wellbeing of people in rural Australia, to move towards the vision of equal health by the year 2020. The Alliance confirmed its belief that, in a prosperous nation such as Australia, it is unacceptable that one third of the population (the seven million people in rural and remote Australia) live with poorer health outcomes and significantly less access to health services. Members of Council agreed that the organisation will redouble its efforts to seek additional investment in rural health services as early as the May 2012 Federal Budget. The Alliance does not accept that the current fiscal circumstances in which the Federal Government finds itself are a valid reason for failing to provide the urgent additional investment needed. Extra expenditure on rural health services should be seen as an investment in the ongoing capacity of rural areas to continue their production of food, wealth and exports - not as a cost to the Federal budget. This is particularly the case given the medium-term savings which would be generated through the sort of healthcare which will keep people out of hospital, including comprehensive primary health care, equitable access to GPs and other primary care providers, and a greater focus on health promotion and illness prevention. Now that significant progress has been made with hospital reform, the next priority should be rural health. The Alliance will be arguing for a national `royalties for regions' type of approach by the Federal Government in its Budget considerations, especially given the fact that there is an annual underspend of over $2 billion on primary care services to rural areas. Achieving a national Budget surplus seems to have become the Holy Grail for both sides of politics; the Alliance does not accept this view, especially in an environment in which individual women are putting at risk their own lives and the lives of their babies by intentionally avoiding the maternity system which provides them with no option but to spend up to two months away from home and family. The Alliance has major expectations of the new National Maternity Services Plan which includes a significant focus on rural areas and which may be seen as a model for planning and accountability for the whole of Australia's rural health system. As the peak non-government organisation for rural health, the Alliance welcomes the regional focus of the Gillard Government and, in particular, those elements of it which relate specifically to reform of the health system in rural, regional and remote areas. The Alliance has reaffirmed its determination to see major advances made in the Australian Government's capacity to deliver a whole-of-government approach to rural health services. Among the keys to this development are genuine commitment to 1 hereinafter `rural' localisation of the funding and control of health services, better local integration of primary and hospital care, and programs to ensure that `physical and learning infrastructures' for the rural health workforce are made available. In the medium term consideration should be given to a single national funder for the health system. The Alliance sees the availability of `fit for purpose' high-speed broadband across every part of rural Australia as a key facilitator of community sustainability, business and recreational opportunities, and the health services of the future in those areas. The administrative centrepiece of continued rural health reform will be a new body, Rural Health Australia, which will lead the Government's work across relevant departments and meet the commitment made by the Gillard Government to the regional independents. This new entity will play a leading role, in consultation with people in rural areas and organisations like the NRHA, in developing a national rural Page 52


health plan that is agreed by all health jurisdictions. The plan will serve as the roadmap for national development in rural health services, and will lift the accountability of government at all levels for their work on rural health to a level equivalent to that planned for public hospitals. The personal reflections of members of Council of the Alliance illustrated a significant level of concern with a range of issue in rural and remote Australia relating to the environment. The Alliance remains concerned about the potential impact of climate change on health in rural and remote areas and is seeking opportunities to work collaboratively with other organisations to promote action on the matter. The Alliance's ongoing interest in the sustainability of rural communities means that it is vitally concerned with the various implications of climate change, including the significant economic opportunities it may offer to people in rural and remote areas. 1. Rural Health Australia and a National Rural Health Plan

The Alliance stands ready to welcome the announcement of Rural Health Australia - which it will expect to have the following characteristics. a] b] c] d] e] f] It will be a senior and authoritative entity within the Department of Health and Ageing with a crossgovernment Board and rural stakeholder representation and engagement. It will provide an annual report to Federal Parliament. The core of its operational plan will be a new Rural Health Plan. The Agency will require funding to play its leadership role in developing the Plan. The new national Plan will be negotiated collaboratively through and with Commonwealth, State and Territory Departments and stakeholders. The Plan will harmonise and define `minimum service obligations' for places of particular sizes and be grounded in research, data and modelling, as is the case with the National Maternity Services Plan. The new Rural Health Plan will also include a Forward Expenditure Plan for rural health, and be compatible with the existing planning documents of State and Territory Departments of Health. To enable Rural Health Australia to report against the performance measures in the Plan, the entity will have ongoing access to evidence from a range of other plans and strategies (COAG, Physical Activity, Close the Gap, National Mental Health Plan etc), as such evidence emerges, and augmented where necessary by additional analysis by rurality commissioned from the AIHW. Rural Health Australia will chair a board that collaborates with the Departments of Prime Minister and Cabinet, Regional Development, FaHCSIA, DAFF, Finance and Treasury, and other federal agencies as necessary, to coordinate rural health-related work. There will be direct stakeholder representation on the Board and collaboration with rural stakeholders will be an ongoing part of the work of the Board. This work will constitute a welcome effort to apply a whole-of-government approach to the social and economic determinants of health in rural areas.

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2. Oral health Building on the existing RePAIR plan advocated by the National Oral Health Alliance of which it is a member, the Alliance proposes: a] b] c] that a permanent National Advisory Council on Dental Health (or its equivalent) be established and that it include appropriate representation of rural, Indigenous and other special needs groups; that the Australian National Preventive Health Agency include oral health promotion and illness prevention in its Second Operational Plan (2012-13) or soon thereafter; that when the Chronic Disease Dental Health Program (CDDHP) is terminated, an equivalent amount of money (ie $750 million a year) be allocated to a new targeted Commonwealth oral health program (by whatever name). This new program would provide new infrastructure and operational support to deliver services on a `worst first' basis to people in rural areas, starting with special needs groups, Page 53


including rural Health Care Card holders and Aboriginal and Torres Strait Islander people. d] that, to improve the availability of oral health professionals to people in rural areas, and in addition to the Foundation Year currently being developed for dental graduates, incentives be provided to encourage and support rural students to study dentistry, and to attract new graduates and city-based private practitioners to rural areas by subsidising the use of the public and private practice workforce; hat a new early childhood and school (4-18 years) oral health system be established to expand the work of the existing School Dental Services and the Teen Dental Scheme; and that priority be given in the work of the Australian Health Practitioner Regulation Agency and Health Workforce Australia to the collection and publication of data on the oral health workforce in rural areas and its scopes of practice.

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3. Ensuring `fit for purpose' broadband solutions in more remote areas The Alliance re-affirms its position that, by whatever means, `fit for purpose' high speed broadband must be made available to all parts of rural Australia. Such `fit for purpose' services are essential for connecting the people of rural Australia with the health system through current and future telehealth applications and for the sharing of health information. The current and future rural health workforce will rely more and more on high speed broadband connections for aspects of their training and education, ongoing professional development and intra- and interprofessional advice and mentoring. These connections need to go beyond the current public health system networks so that they are available to private and isolated practitioners. High speed broadband connections will also underpin business opportunities outside health and the overall sustainability of rural communities. The Alliance proposes a special grants program to ensure that `difficult to access' customers (homes, businesses, health professionals) will be able to take advantage of the national roll out of high speed broadband and can be prioritised for early coverage. Current plans include fibre connections, to be complemented by wireless and satellite solutions in more remote settings, yet residual doubts remain about whether the isolated and remote communities that are most in need of health connections and support will be covered in a timely way and whether the proposed connections will be adequate for health applications. The Alliance also seeks ongoing attention to the ultimate cost of services for consumers, businesses and health professionals; and cost structures relating to ISPs and consumers that will work and be affordable beyond the competitive markets that exist in the major cities and regional centres. 4. Publicly funded primary health care The Alliance believes that services provided by the Aboriginal Community Controlled Health Sector and the RFDS provide models of integrated primary health care in many parts of rural Australia and for many population groups. The public funding of such services in areas where private fee-for-service models of care are not viable or are not providing satisfactory outcomes will include cashing out MBS and PBS entitlements, with loadings reflecting the cost of service delivery (the more remote, the higher the cost). This program would in effect be an extension of what happened in the Northern Territory prior to the intervention. The characteristics of such block-funded primary health care services include: the block funding consists of monies cashed up to national averages, not cashed out at existing useage levels; a weighting is applied to the block funding, reflecting increasing costs with increasing remoteness; Page 54


the more widespread use of salaried health professionals, to support and complement those in private practice; co-location of members of the healthcare team, with high level access via fast internet to support in larger less remote centres; comprehensive primary health care, with services provided perhaps including health education; counselling; engagement as necessary with police, prisons, Centrelink etc; support for traineeships; and householder support; and cultural appropriateness - not just for Aboriginal and Torres Strait Islander people, but for refugees, prisoners and people of non-English speaking backgrounds.

We request that Federal Government, in collaboration with State Governments, support demonstration models of such entities in areas not currently covered by the Aboriginal Community Controlled Health Sector and the RFDS. The performance of such entities should be carefully assessed. 5. Improving rural educational outcomes Attempts to avoid the looming workforce shortage identified by the Productivity Commission must embrace the one third of Australian school students who either live in rural/remote Australia, or are Indigenous. A concerted national effort is urgently needed to widen the curriculums of rural high schools and improve high school completion rates for rural, remote and Indigenous students as well as access to tertiary and vocational training. High school completion alone will improve health outcomes for these young people. It will also reduce the difficulty they have in accessing higher education. Developing a specially designed pathway for rural students to and through tertiary education will help to add value and efficiency to our future workforce and reduce the need to import labour � and contribute in a major way to the rural health workforce. The Alliance asks that: 1. as part of their funding agreements with the Commonwealth Government, tertiary educational institutions and the VET sector be required to meet and report on targets set (in conjunction with the Department of Education) relating to the number and proportion of their students who are of Indigenous origin and rural/remote origin, including in nursing and allied health disciplines; 2. additional programs of support for Indigenous and rural/remote students should be provided during secondary school and tertiary studies, in order to optimise tertiary enrolment and completion rates, including:

improvement of the quality and breadth of the educational experience though rasping the educational opportunities offered by high speed internet and better valuing quality teachers for these students in both primary and secondary school; and providing financial support to enable Indigenous and rural/remote youth to live way from home so that they can attend school and access tertiary education.

The Education Revolution should not only be available for youth from major cities and in those regional centres where university campuses exist. Educational aspiration does not develop in a vacuum. Students' aspirations develop through contacts with role-models and are also shaped by perceived opportunities in the workforce. Their educational aspirations will be enhanced through the development of sustainable rural, remote and Indigenous communities, with economies that need a diverse workforce � including those with technical and professional skills. These aspirations will develop further when young people live in an environment presided over by accountable and local governance, in which high speed internet is available, and as part of a decentralised economy which is taking advantage of renewable energy and 21st century green technology. Page 55


6. Aged care The Alliance welcomes the current focus on healthy ageing in the Productivity Commission report which recommends a better range of choices and surety as people age. These benefits must also apply to the 32+ per cent of older Australians who live outside major cities. For this to occur, consideration must be given to the true costs of delivering community and residential aged care in more challenging circumstances including the costs for staff, travel, housing, freight, goods and services, flying and accommodating agency staff, and training and backfill. These cost imposts should be recognised by the proposed Australian Aged Care Commission (AACC) which will have a role in monitoring, reporting and assessing costs and recommending a scheduled set of prices, subsidies and a rate of indexation for approved aged care services. Healthy ageing close to home will assist in reducing preventable hospital admissions but all elderly people must have regular access to primary care and support systems (including transport) in the country. In rural areas it is impractical and inefficient to separate aged care and health care. Flexible funding models that are developed with the community to make the best use of the health and aged care facilities and health professionals living locally have already shown their worth and should continue to be expanded. Block funding may be required where thin markets mean that private practice and not-for-profit services are not viable. 7. Rural placements for health professionals Positive experiences in rural practice for students and new graduates strongly influence health professionals to choose to work in rural areas. A strong rural pathway which allows students with an interest in rural careers to have an opportunity and, once graduated, to stay rural is essential to maximising every opportunity to attract and retain members of the future rural health workforce. Graduates from UDRHs and Rural Clinical Schools are starting to constitute the intern intake in large regional hospitals. There are two major issues: to ensure equity of opportunity for students in all health professions when it comes to rural placements; and to ensure an integrated scheme of rural placements for all health graduates. The first requires the establishment of a collaborative system engaging universities, TAFEs, clinical practices and clinicians, and health and related sector organisations in rural areas to provide undergraduate rural placements on an equitable basis across the professions and between universities. Such a scheme should include: identification and funding to address infrastructure deficits, eg teaching facilities and accommodation;

extension to allied health and nursing of short-term scholarships for familiarising students with rural areas with appropriate funding for travel, accommodation and living expenses; and support (including remuneration) for the preceptors and mentors supervising students.

The second proposal - for integrated graduate rural placements - requires a rapid expansion of Health Workforce Australia's program and particularly its Integrated Regional Training Networks. The Alliance stands ready to work with Health Workforce Australia and other interested parties to develop systems for collaborative vocational placements for health graduates in rural areas that recognise and build on the work of agencies already demonstrating success in the area. In both of these schemes, students and graduates who have demonstrated a commitment to rural practice or who are of rural origin should be given preferential entry and more opportunities for pursuing a rural training pathway. This will help bridge the current gap in the rural pathway from university graduation to future work where potential rural health workers may be lost to the city if rural areas do not have the capacity and resources to support them.

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8. Mental health The Alliance welcomes the current focus on improving mental health services, but is concerned about the extent to which the various new initiatives proposed will improve mental health outcomes in the bush. The higher rates of completed suicide in regional and remote areas, especially the existence of known suicide hot-spots, attest to continued unmet need. The Alliance welcomes the establishment of a National Mental Health Commission as an executive agency within the Department of Prime Minister and Cabinet portfolio to ensure quality, accountability and innovation in mental health services. Access to high quality mental health care is the right of all Australians including those who live in the bush. We call on the Prime Minister to ensure that this Commission investigates, plans for and analyses mental health services for their impact on the unmet mental health care needs of the people who live in rural communities. The National Report Card on Mental Health and Suicide Prevention must include a report on mental health outcomes by remoteness. It must monitor the effectiveness of new and existing programs in reaching people in rural communities over time. Ongoing or emerging shortfalls in mental health care and outcomes for rural people must be promptly referred for action by State and Commonwealth Governments. It is of great concern to the Alliance that the shortage of GPs and mental health professionals across the disciplines in rural areas means that Medicare programs cannot meet rural mental health needs. Even flexible funding programs such as local coordination of care for people with severe, persistent mental illness and complex care needs, as outlined in the Federal Budget 2010-11, will be challenging to implement in many under-served rural communities. Increasing numbers of regional specialist centres for mental health (such as EPPIC and headspace) will make a welcome contribution to mental health service capacity in the region, especially if outreach services such as visiting medical and allied health specialists and telehealth are possible. However, best practice will still involve consultations with health professionals on the ground, complemented by online support with consultations and ongoing care. Local health professionals such as practice nurses and community workers will continue to provide frontline mental health in many rural communities, and they will need mental health care education and support to be effective. The Alliance welcomes additional funding to boost the support available through crisis hotlines, helplines for men and `Mental Health First Aid' training provided in the 2010-2011 Federal Budget. The commitment to expand community mental health services through more personal helpers and mentors and respite services in 2012 also has the potential to provide for better local level mental health support. The key contributor to lower access to mental health services for the third of the Australian population who live in rural areas is the relative scarcity of psychologists. The success of the Government's drive to increase the number of doctors outside major cities by assisting students of rural origin to study medicine suggests a model that may be able to be replicated to increase the number of psychologists in regional and remote areas. Wherever specific scholarships or similar investments are made for rural mental health, the recipients should be eligible for mental health courses that are relevant to rural practice, participate in rural placements and supported where desired in pursuing a career and related activities in rural areas and/or on rural topics. 9. Local control of integrated primary care in rural areas The Alliance re-affirms its support for greater local control and integration of health care, based on relatively small areas which reflect communities of interest. Sectors which must be involved include aged care and primary and community care funded by both the Commonwealth and the States/Territories. The Alliance continues to advocate for primary care and hospital (acute and subacute) care to be very closely aligned in rural areas, with the boundaries of such systems matching whenever possible. The body responsible for the local management of primary care in each area must have adequate funding to Page 57


enable it to plan services, identify service gaps, address workforce shortages and engage in direct service delivery when appropriate. Even the more remote areas which have a small number of health, aged care and social service personnel are within the boundaries of various State, national and professional networks: local authorities, Medicare Locals, LHNs, Regional Training Providers, Regional Development Australia (RDAs) etc. These boundaries should be aligned wherever possible through national and jurisdictional partnerships. This will encourage collaboration among such entities, and ensure that the small number of professionals available locally are not `burned out' by liaison with and contribution to such organisations. One of the existing networks should be given responsibility to take the lead role in organising collaboration among local agencies. The governance of local health entities must engage community leadership, including local government and RDA committees. The Alliance proposes that the Minister for Regional Development should require all RDA committees to be involved in improving health outcomes and health-related services in their area. This could lead to collaboration across regions and States and to the delivery of potentially valuable regionalised health initiatives through the RDA.

Language Services Policy Important points It is an advantage to use an interpreter to avoid confusion at the initial meeting. This would really eliminate any future and costly misunderstandings It will utilise and cover the 3 main types of interpreting services: 1. 2. 3. Face-to-face Telephone Video Conference Interpreting

Consumers and their carers, who have limited or no English proficiency, will have access to this service Deaf or hearing impaired will have access to this service Vital to have interpreters available in time of emergency Both consumer/carer input into this process must be sought Interpreters assist in overcoming cross cultural differences and can act as guides in cross cultural matters A good interpreter can help with presentations and negotiations to achieve goals for parties involved

Weak Points Consumer declines to work with a competent interpreter The consumer requests to be matched with a specific interpreter (eg: same sex) due to family or cultural reasons The customer requests not to be matched with a specific interpreter Special consideration must be taken for high risk situations where higher levels of interpreter competency are required.

ABN: 68 480 848 412 National Rural Health Conference PO Box 280 Deakin West ACT 2600 Australian Journal of Rural Health Phone: (02) 6285 4660 Fax: (02) 6285 670 Web: www.ruralhealth.org.au Email: nrha@ruralhealth.org.au

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AGED CARE REFORM FACT SHEET

PAYING FOR AGED CARE The Productivity Commission report Caring for Older Australians recommends that Government continue to pay the majority of the costs of aged care for a person who needs it. The report also recommends that people who can afford to contribute to the cost of their accommodation and care do so. A means test will be used to work out what a person can afford to pay. PAYING FOR AGED CARE SERVICES NOW There may be a fee charged for Home and Community Care services provided to you in your own home but sometimes there is no fee at all. Whether or not you are charged a fee depends on where you live or who provides your service. If you get a package of care (called a Community Aged Care Package or an Extended Aged Care at Home Package) you are charged a standard amount around Australia based on an assessment of what you can afford to pay. To go in to residential aged care many older people pay an accommodation bond, which is a one off lump sum payment (like a loan). The amount paid is based on what you can afford to pay rather than what the accommodation costs. The amount charged is decided by the service provider and could be as much as $2 million (although the average paid is approximately $230,000). More than 63,000 aged care residents have paid around $11 billion in bonds to providers. A bond, minus $318 per month for up to 5 years which the provider is allowed to keep, is paid back to you or your estate when you leave aged care. Because of this it is often the preferred way of paying. Only 5% of residents now choose to make a periodic payment � which is like paying rent. PROPOSED REFORMS TO PAYING FOR AGED CARE

Government will continue to be the main funder of aged care services and the report proposes that people who can afford to contribute to the cost of services do so. The report says people with the same means, getting the same services, should pay the same wherever they live which is not the case now. Key points to know about the proposed payment system are:

Government pays for the services you need if you are assessed as eligible and unable to afford them; Centrelink undertakes an assessment of your financial capacity, which includes your assets (including the value of your house) and income, and determines what you can afford to pay; Depending on what you can afford to pay you will be asked to contribute towards the cost of any support and care provided to you either at home or in a residential care home (the report suggests between 0% and 25%). The prices for the care you receive will be recommended by an independent Aged Care Commission; Page 59


You won't pay more than a maximum amount for support and care over your lifetime (the report suggests a maximum of $60,000). Once that limit is reached the Government will pay all your costs; If you enter residential care and can afford to pay you will also be asked to pay your accommodation and living expenses. You can pay with periodic payments (like rent) or you can choose to pay a one off lump sum (called a Bond). 100% of that bond is refunded to your estate at the end of your time in care; Accommodation prices have to be made available publicly and linked to the cost of providing the accommodation. You can choose however you want to meet these costs (both accommodation and support and care) and you don't have to sell your home. To assist you to meet your costs there are two new financial products: The Australian Aged Care Home Credit Scheme. A Government backed line of credit secured against your house, or your share of it. A minimum level of equity in the house will be set and you can draw progressively down to that minimum to fund your aged care costs. The outstanding balance would become repayable upon your death except where there is a protected person (e.g. partner, dependent child or a carer) living in the house. The Australian Age Pensioners Savings Account. If you are a pensioner and wish to sell your home to move to other accommodation you can establish an account with the Government with some or all of the proceeds of the sale and use this to pay for your aged care services. The account would be exempt from the age pension income and assets test. These reforms would make the costs and pricing of accommodation and care transparent and give you choices about how to pay for the aged care you need. You may choose to do as you have throughout your life and sell one house to move into another. You may choose to use your superannuation or investments to pay. You may prefer to pay rent or charge the cost against the value you have build up in your house. It will be your choice, there is more than one way to pay and you won't be asked to pay more than you can afford.

It is important to remember that if you can't afford to pay the Government will pay your costs. August 2011

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Patients` priorities for health research Focus group study of patients with chronic kidney disease Article by A. Tong, P Sainsbury, SM Carter, B Hall, DC Harris, RG Walker, CM Hawley, S Chadban & JC Craig NHMRC Centre for Clinical Research Excellence in Renal Medicine, Centre for Kidney Research, Children`s Hospital at Westmead, NSW Abstract BACKGROUND: The inclusion of consumer preferences in prioritizing research topics is widely advocated, but prioritization is driven largely by professional agendas. METHODS: Patients with chronic kidney disease (CKD) were purposively sampled from four kidney dialysis and transplant centres in Australia to participate in nine focus groups (three each for pre-dialysis, dialysis and transplant patients), which were conducted from July 2006 to September 2006. Each involved 68 participants. Transcripts were coded and thematically analysed to identify recurrent research topics and the participants` reasons for their choices. RESULTS: Participants suggested eight research priorities: prevention of kidney disease, better access to and improvement in kidney transplantation, reduction of symptoms of CKD and complications associated with treatment, Page 61

new technological therapies, psychosocial aspects of living with CKD, whole body not organ-specialised care, improvement in dialysis and; caregiver support.

Five major reasons for the selections were identified: normalization of life (developing therapies and regimens that fit into daily living), altruism (considering the welfare of others before personal needs), economic efficiency (channelling resources for maximum economic gain), personal needs (preferences based on feelings, value, personal needs) and clinical outcomes (improving health states and the physiological condition of patients with CKD).

CONCLUSIONS: A patient-focused research agenda is possible to elicit for CKD, and by inference for other healthcare issues. Unlike researchers who focus on specific interventions and questions, consumers think in terms of broad themes and quality of life outcomes. Effective methods for translating a patient-focused agenda into research priority setting and resource allocation are now needed.


2011 Consumer Excellence Awards The Health Consumers' Council Board are seeking nominations from Health Consumers' Council members for the 2011 Health Consumers' Council Consumer Excellence Awards.

Consumer Representative Placements The following Consumer Representatives have been nominated and accepted by committees through the HCC. July � October 2010 Mount Private Hospital for Quality and Risk Management Tony Addiscott

The purpose of Health Consumers' Council is To Raise Awareness of and advocate for health consumer rights in Western Australia.

Bethesda Hospital Safety and Quality Committee Nigel D`Cruz Curtin Universitys School of Physiotherapys Advisory Board

The Awards are made each year to a group or individual who have made an outstanding contribution towards the attainment of the Health Consumers' Council Purpose and have:

Shirley Barnes Woundswest Skin Safe Compendium Working Group Woundswest Clinical Governance Framework for Wound Management Working Group Iren Hunyadi Royal Perth Hospit � Student Training Ward Intiative Michelle Atikinson de-Garis Western Australian Reproductive Technology Council Kari Johnson Diagnostic Imaging Website Review Group Anne Atkinson Sergio Cooper For a list of consumer representatives sitting on various committees supported by HCC, please ring 9221 3422 or if you have access to the internet, go to our website link at: http:// www.hconc.org.au/ ourservices/consumer.html For further information on consumer participation in the health system, ask to speak to the Consumer Participation Programme Coordinator on 9221 3422 or email info@hconc.org.au

benefited health consumers over a period of time

Contributed to improvement of health service delivery systems; or

other circumstances as determined by the Board.

Please email or post in your suggestions. Email: rosemary.caithness@hconc.org.au Post: Reply Paid GPO Box c134 Perth 6839

The nominations are considered at the November Board Meeting and must be in the office by Tuesday 16th November 2010.

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Dates For Your Diary Time Address Contact

Day & Date

Occasion

Thursday 3 November

Community Forum Diversity Dialogues Health, health care & culture

1.00pm to 4.30pm Grace Vaughan House 227 Stubbs Terrace Shenton Park

Louise Ford Ph: 9221 3422 Email: louise.ford@hconc.org.au

Saturday 12 November

Consumer Representative Skills Training

9.30am to 3.30pm Health Consumers` Council Crn Lord & Wellington Streets East Perth

Louise Ford Ph: 9221 3422 Email: louise.ford@hconc.org.au

Friday 18 November

CAC Chairs Roundtable

12.noon to 2.00pm Health Consumers` Council Crn Lord & Wellington Streets East Perth Health Consumers` Council Crn Lord & Wellington Streets East Perth

Louise Ford Ph: 9221 3422 Email: louise.ford@hconc.org.au Louise Ford Ph: 9221 3422 Email: louise.ford@hconc.org.au

Friday 25 November

Health Professionals Roundtable Engaging with emerging communities

12.noon to 2.00pm 10.30am to 12 noon

Wednesday 7 December

Annual Christmas Morning Tea

Health Consumers` Council Crn Lord & Wellington Streets East Perth

Rosemary Caithness Ph: 9221 3422 Email: rosemary.caithness@hconc.or.gau

Thursday 2 February 2012

Health Issues Group HIG

1.00pm to 3.00pm

Health Consumers` Council Crn Lord & Wellington Streets East Perth

Louise Ford Ph: 9221 3422 Email: louise.ford@hconc.org.au

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If not claimed within 7 days, please return to:

Health Consumers' Council

SURFACE MAIL

GPO Box C134 PERTH WA 6839

POSTAGE PAID AUSTRALIA

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Health Matters Issue 86