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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.


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Consumers’ Health Forum newsletter

Saturday 27 December 2008

Consumers' Health ForumHere’s the latest issue of the Consumers’ Health Forum of Australia newsletter healthUPdate:


healthUPdate: December 2008, Issue 22 (PDF, 143KB)

December 2008, Issue 22

HealthUpdate is issued twice a month to keep members and consumer representatives up to date with what’s happening at CHF. You are encouraged to forward HealthUpdate to your members.

You can read HealthUpdate as an email or as a PDF document (attached). This and previous issues are also available in the member’s section of the CHF website.

Front page
In the news
New CHF Membership
Project updates
Seeking consumer views
Member and consumer representative news
Health news
Consumer Representatives

Breaking news

The Secretariat staff and Governing Committee thank all CHF members and consumer representatives for their valued contributions to health care in Australia over the past year. Together we have been able to shape health in Australia in many different areas and have developed our relationships with other health stakeholders.

We wish you a restful break and look forward to working with you again in 2009 to continue to seek safe, good quality health care for everyone in Australia.

The Secretariat will close on Christmas Eve and reopen on 5 January.

Front page

CHF farewells Helen Hopkins

On behalf of CHF, I would like to sincerely thank Helen Hopkins for leading CHF over the last seven years. Helen is leaving at the end of the year and we wish her well in her next adventure. She has been a passionate advocate for consumers and consumer representation at all levels of decision-making about health care.

Helen has guided CHF through an exciting time and secured its position as a respected and informed voice. This has included implementing the 2005-09 Strategic Plan, strengthening the membership base of CHF and consolidating its growing revenue. She has worked energetically to get consumer representatives appointed on national health-related committees and represented CHF and consumers on a number of key committees.

As Executive Director, Helen has positioned CHF very well to contribute to the current health reforms to ensure the consumer voice is heard, and respected, alongside other health stakeholders. I would particularly like to congratulate Helen and her team for the excellent organisation of the CHF 21st birthday, which summarised CHF achievements.

Helen has achieved much. I’d like to enumerate just a few things in terms of the CHF strategic plan. Under Goal 1, to strengthen the recognition of CHF as a national leader for health consumers, Helen has gained funding for and established a small team of policy advisors in a diverse range of projects that contribute to the priority areas of safety and quality, health care for people with chronic conditions and quality use of medicines. These projects have captured consumer perspectives and delivered them as practical policies to our partners and stakeholders, who have used them to get better outcomes for consumers.

Through Helen, CHF contributed to many consultations, conferences, workshops, roundtables, reviews etc. Just this year, she has participated in the Australia 2020 Summit and made significant contributions to the National Health and Hospitals Reform Commission and National Primary Health Care Strategy, and to debates on health workforce, health system performance indicators, safety and quality, health funding and many others. She has been proactive in the CHF response to emerging issues.

Under Goal 2, to improve the CHF profile and communications with key stakeholders, Helen was responsible for the appointment of a Communications Advisor, the new modern look and new publications to better meet consumer needs. She found ways to sustain the Consumer Representatives Program without direct funding and link project work more closely to consumer representatives. She also drove some membership campaigns and developed new ways of working with members on national health policy. She was always ready to provide support state-based peak organisations, whether for their establishment or ongoing development.

Under Goal 3, to strengthen CHF governance and management, Helen streamlined management and increased revenue. She increased organisational capacity and capability building in the Secretariat. The governance program was developed with the Operations Manager, Jan Finlay.

We will all miss Helen’s guidance, passion, incredible depth of knowledge and friendship. The Governing Committee has invited Helen to its first meeting in the New Year to thank her in person. An opportunity for members to farewell Helen is also planned for the same time.

It is an exciting time for CHF as we welcome the new Executive Director, Carol Bennett, who inherits a well-oiled machine ready to continue shaping health in Australia.

Antonio Russo

Chair, CHF

Russell McGowan appointed as Consumer Commissioner

CHF congratulates Russell McGowan on his appointment as Consumer Commissioner with the Australian Commission for Safety and Quality in Health Care. Russell is a member of the CHF Governing Committee and an immediate past president of the Health Care Consumers Association of the ACT.

Russell is an avid proponent of improved safety and quality in health care and has been the consumer representative on many committees in this field, contributing important perspectives to the health debate. Most recently, he spoke at the CHF National Information Workshop: Delivering Safety and Quality in Health Care. He has the confidence of consumer networks to build on the work of the previous Consumer Commissioner, the late Christopher Newell AM, to improve consumer participation in the Commission’s work and the implementation of improved safety and quality in Australia.

Reform Commission consultation reports now available

Reports from the National Health and Hospitals Reform Commission consultations held around Australia from May to July, and a consolidated report, are now available online. Commissioners held forums with community members and frontline health workers in each capital city and five regional centres. CHF helped publicise the forums to its members to encourage an informed consumer input to the Commission.

The CHF policy team is reviewing the report in detail to see where the report parallels our own consultation findings and submission to the Commission and to identify key issues we would like to investigate further.

In summary, the consolidated report says that the consultations concluded the health system needs to be more proactive and responsive. They called for a single national healthcare system with national standards, policies and procedures that also addressed access and equity issues. They wanted health care to be offered in a holistic, multidisciplinary way in ‘one stop shops’ that provide accessible, affordable, reliable and professional services. Within this model, there would be continuity of care and greater integration with community services.

See the reports at

See the CHF submission at$FILE/509 - Submission - Consumers Health Forum.pdf.

In the news

Elective surgery shut down

Following the announcement that area health services in NSW would close down for elective surgery for longer than usual over the new year period, The Sydney Morning Herald rang CHF for comment. Executive Director Helen Hopkins said that while it was important that people with elective surgery needs did not have a long wait, particularly for things like hip replacements that were painful and debilitating, many people may choose not to be in hospital over Christmas as it was a family time. Further, she said people having elective surgery wanted to be sure of optimal safety and quality and recognised that there may be high staff absences at that time.

Helen suggested the journalist contact NSW organisations, such as Arthritis NSW or a NSW Heart Support group that include many people on waiting lists for elective surgery, that knew the NSW situation first hand.

See the final article at


New medicines safety committee in 2009

As part of reforms to the Australian medicines safety system to be introduced to federal parliament early next year, the Adverse Drug reactions Advisory Committee of the Therapeutic Goods Administration (TGA) will be replaced with a new Medicines Safety Committee. CHF is pleased with the reforms, which incorporates several things CHF has been advocating for.

The reform legislation will give the Medicines Safety Committee wider powers to monitor medicines after they have been approved for sale in Australia, making it easier for the regulator to pick up how medicines are working, including adverse events. When safety issues arise, a more flexible protocol will allow medicines to be suspended rather than withdrawn or recalled. Medicine audits will be introduced and a medicines monitor appointed to oversee the safety of specific medicines. The committee will have the power to oversee, assess and review risk-management plans of drug companies for approved medicines.

A big win for consumers in the reforms is the improved access to medicines data and increased transparency. More information will be released about listed drugs, consumer medicines information will be available on the TGA website, and consumers will be included on the TGA medicines committees.

For more information, see,25197,24758470-23289,00.html.

Joint Medicines Policy Conference

2008 was a fruitful year for consumers in the medicines arena, culminating in the successful consumer input to the Joint Medicines Policy Conference in November, which had a strong focus on consumers.

The conference heard that after sustained consumer advocacy, consumers now have the opportunity to provide input about medicines being discussed at meetings of the Pharmaceutical Benefits Advisory Committee (PBAC). At its November meeting, the PBAC received 80 submissions, approximately 70% of them from consumers. CHF has also provided consumer input to PBAC decisions through trial consumer impact statements that provide an account of living with a condition. The Conference acknowledged these statements were an important part of identifying issues for consumers and carers affected by the identified conditions.

Current issues for consumers in medicines policy, and the recognition of the value of the consumer perspective, were key themes of the conference. The cost of medicines was raised by a number of speakers as an issue for consumers, with the recognition that even small rises in the co-payment for PBS medicines can mean the difference between obtaining the medicine and not. The concern was raised that consumers are often perceived as having a single health issue that can be treated singly. This was referred to as largely a myth, with a call for health care stakeholders to be aware of the complexity of issues many consumers have, which in turn require coordinated care.

The Conference raised the need for more post-market measures of consumer experience with medicines, as it was acknowledged this is not done very well. When post-market consumer input is sought, it is often in the form of a standardised Quality of Life instrument, which does not necessarily capture all aspects of consumers’ experience.

With respect to quality use of medicine, CEO of the National Prescribing Service, Lynn Weekes, said QUM encompassed everything that could be called the ‘medicines life cycle’, and we needed to think about supporting consumers’ medicines literacy and monitor outcomes. Other QUM issues raised were the problems many consumers encounter at the point of transition from hospital care to the ambulatory sector, and medicines’ labelling.

A strong outcome of the conference was a commitment to create more opportunities to improve community input and engagement, both in decisions about individual medicines and in medicines policy. It is anticipated that the new National Medicines Policy structure may have a role to play in this.

Special guest at the NHMRC Excellence Awards

The National Health and Medical Research Council (NHMRC) invited Executive Director Helen Hopkins as a special guest at its Excellence Awards presentation dinner on 10 December. CHF has a long-standing relationship with the NHMRC promoting the involvement of consumers at all levels of health research.

CHF and the NHMRC developed the Statement on Consumer and Community Participation in Health and Medical Research and model framework for its implementation. The need to further build on the documents’ success was reinforced in March at the Involving People in Research Symposium in Perth, sponsored by the University of Western Australia, Health Consumers Council of WA and WA Department of Health and the NHMRC.

The Excellence Awards recognised seven health and medical researchers for their contribution to the success of research in Australia. They included Professor Joseph Trapani at the Peter MacCallum Cancer Centre, Professor Melissa Wake at the Centre for Community Child Health at the Royal Children’s Hospital in Melbourne, Professor Pankaj Sah at the Queensland Brain Institute, Professor Graeme Jackson of the former Melbourne Brain Research Institute, Professor Helena Teede at the Jean Hailes Foundation for Women’s Health, Dr Sof Andrikopoulos at the Islet Biology Research Group at the University of Melbourne and Professor Stephen MacMahon of the George Insititute for International Health and Professor of Cardiovascular Medicine and Epidemiology at the University of Sydney.

Consumer voice must be heard

Helen also attended the NHMRC Advisory Committee on Consumer and Community Engagement last week. Recommended by the late Christopher Newell AM, the consumer member of the NHMRC Council until his death in June, this committee comprises consumer representatives on principle NHMRC committees. Helen attends in recognition of the partnership between CHF and NHMRC.

The committee advises the NHMRC CEO on: a framework to guide consumer and community engagement in NHMRC programs; initiatives to raise awareness of the health and medical research sector relating to engaging consumers and the community and to provide relevant and useful resources to support this engagement; and potential partnerships with other organisations that actively engage consumers and community in health and medical research activities.

While the committee plays a valuable role in raising consumer perspectives, Helen said it was essential that a consumer member be appointed to the NHMRC Council as soon as possible, particularly as the Council was working on a new strategic plan. CHF is working with the NHMRC and the Australian Department of Health and Ageing to achieve this.

Self management and medicines

Vice-Chairperson of the CHF Governing Committee, Diane Walsh, attended the 2008 Australian Self-Medication Industry Conference, Integrating Self Care into the Healthcare System. Diane also took part in a panel discussion, ‘What is to be gained from wider self care? What are the building blocks for moving self care forward’.

The conference heard self care requires a fundamental shift from cure to prevention in which the individual is given information to take more personal responsibility for preventable risk factors, use appropriate types of care when acute conditions flare up, and self-medicate to treat minor ailments and some chronic conditions.

The industry’s study findings, released at the conference, indicated that savings in costs and time could be made if patients increased self-medication for minor ailments. This would reduce bottlenecks in GP surgeries, leading to easier access to GPs and less pressured consultation times for non-minor ailments. Consumers with minor ailments would get quality advice from their pharmacist, with over-the-counter medicines perhaps costing less than prescription medicines. ASMI says visiting a pharmacist and self-medicating has been shown to increase patient confidence, improving self care support skills and empowering the patient.

Diane’s panel discussion revolved around health literacy, e-health and the proposal that some medicines that are currently prescription only become available over-the-counter. She said there was a need for consumers to have choice when it came to self management, and the necessary knowledge, skills and tools when it came to making those choices. The responsibility to ensure consumers have the knowledge and ability to engage in their own health care rested jointly with industry, government, regulators and consumers themselves.

She said a trip to the doctor for a simple prescription might be the consumer’s only visit for a year. Important opportunities for preventative care could be lost if the pharmacist did not have the skills, time, and/or privacy to provide a proper counselling service at the time of dispensing. She also stressed that advertising and point of sale promotion should not take the place of proper decision-making tools for consumers in a pharmacy environment

The panel included the President of the Pharmacy Guild of Australia, Kos Sclavos, the National Health and Hospitals Reform Commission’s Professor Ron Penny, the National Manager of the Therapeutic Goods Administration, Dr Rohan Hammett, and the Executive Director of the Australian Food and Grocery Council, Kate Carnell.

New CHF membership

CHF is pleased to welcome several new members to the organisation. At its last meeting, the CHF Governing Committee has endorsed the following as Voting Members:

• Australian Pituitary Foundation

• National Stroke Foundation

• Parkinsons Australia

• The Type 1 Diabetes Network

We also welcome five new individual members and the following new Organisational Members:

• Aged Care Association of Australia

• Australian Association of Social Workers

• Australian Psychological Society

• Canberra Lung Life Support Group

• Department of Human Services Victoria

• National SIDS Council of Australia

• Royal Australian College of General Practitioners

• Skin and Cancer Foundation

• St Vincent’s Hospital

• Moreland Fibromyalgia Support Group

Project updates

Chronic Conditions Self Management 2008-2010 Project

CHF announces partner Divisions of General Practice

CHF has selected three Divisions of General Practice to partner with us in this important project, which aims to identify and implement strategies for health consumers and professionals to work together to support chronic conditions self management.

CHF called for expressions of interest from Divisions through the Australian General Practice Network (AGPN) in October. CHF sincerely thanks all eight Divisions that expressed interest. The successful partners will be the Adelaide Northern Division (SA), Murrumbidgee General Practice Network (NSW) and Rockingham Kwinana Division (WA). Selection was based on the strength of the expressions of interest and the broad representation they provide the project in terms of geography (three States), size of Division, existing consumer engagement, setting (i.e. urban/rural/remote) and population groups.

These Divisions will begin project activities with CHF early in the new year, starting with local community discussion sessions to bring together consumers with a broad range of health professionals, community organisations and other interested parties. The sessions will discuss what is needed locally and more widely to support consumers to self manage their chronic conditions. The discussions will inform CHF project activities, including development of a consumer resource to assist people with chronic conditions to self manage and establishment of local networks to facilitate ongoing activities by Divisions and other parties to ensure consumers are enabled to be active partners in their health care.

We will continue to work closely with the AGPN in this project to enable two-way capacity building and communication.

Project planning workshop report now available

The report from the National Planning Workshop held in August 2008 for this CHF project is now available from our website at: ‘What’s New’. CHF thanks all those who attended the workshop for their valuable contributions. The outcomes will help shape this project in ways that meet consumer needs and concerns.

This workshop was attended by 21 consumer representatives and a range of stakeholders representing Government, peak bodies for various health professions and organisations involved in the training and education of health professionals. Participants openly shared their wealth of experiences in this area, which lead to valuable discussions on what chronic conditions self management means for consumers and what strategies and resources consumers might need to enable them to effectively achieve this.

CHF takes part in Chronic Disease Self Management Workshop

On behalf of CHF, I recently attended a Workshop on Chronic Disease Self Management convened by the Australian Government Department of Health and Ageing. The workshop brought together state and territory health departments, State Based Organisations representing Divisions of General Practice and peak primary health organisations to share information on chronic conditions self management programs and initiatives underway around the country with funding from the Australian Better Health Initiative (ABHI).

Participants were also given the opportunity to discuss areas that should be prioritised by the Australian Government in 2009 ABHI funding to further support chronic conditions self management approaches. Drawing on the work of the CHF project to date, CHF identified what self management means for consumers and the resources, skills and support that consumers may need to effectively self manage, which includes access to peers through support groups and consumer networks.

CHF thanks the Department for this opportunity to hear about the strong support for chronic conditions self management in various sectors and locations around the country, and to feed into future funding priorities.

This project is funded by the Australian Government Department of Health and Ageing under the Australian Better Health Initiative.

Tamara Shanley

Policy Advisor

Safety and Quality Project 2007-08: It's all about communication

National Information Workshop

CHF held its National Information Workshop for the Safety and Quality Project for CHF voting member organisations on 4 December in Canberra. The workshop aimed to assess improvements of safety and quality in health care in Australia and identify practical next steps for consumers.

Participants reinforced the importance of the relationship between CHF and the Australian Commission on Safety and Quality in Health Care to both organisations. Consumers are important stakeholders in health care and their perspectives are essential if the Commission’s work is to succeed. Consumers are very keen to contribute to the implementation of the Commission’s work, particularly in the areas of accreditation, open disclosure, health rights, consumer engagement and the Commission’s information strategy.

Workshop participants heard about safety and quality improvements in Australia and provided consumer feedback on these programs. Presentations were given by the:

• Australian Commission on Safety and Quality in Health Care on their Australian Charter of Healthcare Rights and information Strategy (e-health)

• Australian Institute of Health and Welfare (AIHW) on their national indicators

• The National E-Health Transition Authority on their work program including the Unique Healthcare Identifiers, Individual Electronic Health Record and how to use information collected for safety and quality improvements, and

• CHF Governing Committee members Stephanie Newell and Russell McGowan on how to measure performance and consumers part in the new design respectively.

Feedback on the safety and quality programs included the need for national safety and quality indicators to be aligned to the Australian Charter of Healthcare Rights and include an indicator on consumer engagement and for the Commission to implement the Health Rights Charter nationally.

Participants identified key safety and quality priorities that they would like CHF to take forward including:

• Ensuring that the health system works regardless of where you are – public or private consumer and location.

• Working with the Commission to ensure that the Health Rights Charter is implemented nationally and adopted in the safety an quality indicators

• Advocate for consumer engagement to be central to the Commission’s agenda

• E-health will help improve safety and quality in health care and the consumer’s involvement in their own health.

CHF would like to thank everyone who participated in the workshop and the speakers for providing valuable background information for the workshop discussions.

Catherine Ellis

Policy Advisor

Shaping the Health Workforce Project 2008-09

CHF prepares two submissions

As part of the consultation process around the National Registration and Accreditation Scheme for Health professionals, CHF is finalising two more submissions on the proposed arrangements. The submissions on accreditation and information sharing and privacy will be available on the CHF website under ‘What’s New’ by Christmas. CHF has already provided submissions on two other consultation papers, registration arrangements and complaints, conduct, health and performance arrangements.

The submissions are part of the Intergovernmental Agreement (IGA) for a National Registration and Accreditation Scheme for the Health Professions signed by all governments in March 2008. The Scheme will commence on 1 July 2010. The IGA can be viewed at The agreement establishes a single national registration and accreditation scheme for health professionals and separate profession-specific national boards operating through national and local committees for each profession, providing a nationally consistent approach to registration and accreditation.

Ministers agreed on a process to give the health professions, registration boards and education providers, consumers and the general public, the opportunity to contribute to the implementation of the national scheme. Consultations are occurring on five papers that identify key issues where further work and discussion is needed beyond the terms of the COAG Agreement. Given the short timeframes for submissions, CHF comments are based on consumer engagements of earlier related work such as safety and quality and broader health reforms.

Other submissions sought

The consultation paper on other matters for inclusion in Bill B (the second part of the legislation) has also been released. Submissions are due by 23 December 2008. CHF encourages members to respond to this paper either directly to the Practitioner Regulation Subcommittee or by providing input to CHF. The CHF submission to the registration arrangements should be on the website shortly.

The consultation papers are available at

CHF clarifies health complaints process

CHF hopes to work with the Registration and Accreditation Implementation Project over the summer to ensure the complaints framework in the draft legislation for the National Registration and Accreditation Scheme for Health Professionals has a strong consumer focus and clarifies the current confusion consumers have.

There is a need to strengthen the understanding of the Health Care Complaints Commissioners. The Commissioners will continue to operate in each state and territory handling complaints about health services, as they do now. The new scheme will not bypass the Complaints Commissioners, but will make it easier for consumers to lodge a complaint about professional conduct. One of the key consumer values of the new Scheme is the one stop contact point for conduct issues, which has the potential to influence quality improvement over time.

CHF made a submission on the complaints process in November (see

This project is funded by the Australian Government Department of Health and Ageing and the National Registration and Accreditation Scheme.

Ivonne Buckey-Mendez

Policy Advisor

Private Health Insurance Reforms – Consumers have a say

Project final report receives positive feedback

Thank you to members and stakeholders for feedback on the CHF final report for this project, which was released recently. This report summarises consumer views and makes recommendations for ongoing developments in relation to key initiatives under the private health insurance reforms. The report is available from the CHF website at: ‘What’s New’.

CHF would once again like to thank all those who contributed to this important project, including our members, consumer representatives and a range of stakeholders. The concluding stakeholder advocacy for this project will be reported to the Australian Government Department of Health and Ageing early in the new year.

This project is funded by the Australian Government Department of Health and Ageing.

Tamara Shanley

Policy Advisor

Seeking consumer views

Draft code of professional conduct for doctors

The Australian Medical Council has completed its public consultations on the draft code of professional conduct for doctors. Through CHF, there was a strong consumer input into the consultations. HealthUpdate has been publishing reports from consumer representatives who attend the consultations. See the Consumer Representatives Reports for the latest reports.

The code provides the groundwork for the implementation of the National Registration and Accreditation Scheme too be implemented in July 2010. It seeks to define the standards of practice that doctors are likely to be held accountable to in the national system. Developing clear, nationally consistent standards of practice and consistent code of professional conduct that is understood by the profession and the community is an important aspect of medical regulation.

CHF and AMC will hold a workshop in 2009 to give CHF members and consumer representatives the opportunity to workshop consumer issues with AMC stakeholders and further inform the development of the code. Sitting fees and travel expenses will be covered. Please contact Debbie Smith at to express interest in attending the workshop. Participants need to have attended the public consultation in their state.

See the draft national code at

Member and consumer representative news

ACOSS 2009 survey launched

Australian Council of Social Services is requesting CHF members to complete the 2009 Australian Community Sector Survey. The survey, for community organisations that deliver services directly to the community and their members, collects information on the size, shape and experiences of the sector over time and is a tool for service development, social policy and building sector capacity.

Organisations that complete the survey will be sent a copy of the final report, which will be released in 2009, and will go in a draw to win a complimentary registration to the 2009 ACOSS National Conference. The information is used and promoted by state and territory Councils of Social Service.

For more information, see


ACOSS hosts a forum on the future

Governing Committee member, Sheila Rimmer, attended the Australian Council of Social Services (ACOSS) ‘Future of the Sector Day’ on 5 November, which was opened by the new ACOSS Executive Director Clare Martin and addressed by senior policy officer Gregor Macfie, a former member of the CHF Governing Committee.

The forum discussed how climate change will affect people. Among other things, there is a clear need to reduce carbon emissions, but any program to do so would cost approximately $20 per week, with a consequential impact on some three million low income families. The forum called for some compensation for these families.

Discussion on community workforce centred on the need for a national carers plan that has a new career structure and increased wages. Care work has been historically devalued and deserves a significant upgrade as on average staff are paid 25-30% below the public sector.

The forum discussed the proposal for a national compact between government and the not for profit sector, which was originally raised by ACOSS and received some funding from the Federal Government. Such compacts exist in the UK and Canada and outline how government works with the sector to improve and strengthen the relationship. They can provide greater stability to non-government organisations. The compacts recognise the critical role the not-for-profit sector plays in delivering services, advising and developing social policy, and advocating on behalf of marginalised groups.

New dementia kit for ethnic communities

Alzheimer’s Australia Vic has published a Perceptions of Dementia in Ethnic Communities resource kit to help staff caring for people with dementia from twelve ethnic backgrounds to develop a better understanding of how their clients perceive their condition. It will also assist aged care service providers to identify the specific dementia care needs of ethnic communities and base service improvements and developments on this knowledge.

For more information, see

Health news

Blood service stakeholder forum

The Australian Red Cross Blood Service will celebrate the 80th anniversary of blood collection services next year. 2009 will also be the Year of the Blood Donor in Australia. The celebrations will honour the time, commitment and generosity of blood donors and help raise awareness about the need for more blood donors.

The launch for the Year of the Blood Donor will be on 25 February 2009 in Federation Square in Melbourne and will be followed by a half day strategic planning forum to bring together stakeholders to discuss issues facing the blood service. CHF has been invited to attend.

Blood services are relevant to many CHF members, but are an area where we need more input on consumer issues. Please let us know of any issues you would like us to consider.

Medicine Update published

The latest edition of Medicine Update, the online consumer publication of the National Prescribing Service, reviews zoledronic acid (Aclasta), a once-a-year bisphosphonate treatment for osteoporosis, and Tramadol (Durotram XR), a new once-a-day form of an existing pain relief medicine. Medicine Update provides independent information on new medicines recently listed on the Pharmaceutical Benefits Scheme, explaining what they do, possible side effects and similarities and differences between the new medicine and other medicines for the condition. Consumer representative Anne McKenzie is on the NPS New Drugs Working Group that advises the publication.

For more information, see (and scroll down).

Health information at the click of a mouse

The Royal Australian College of General Practitioners (RAGCP) has collaborated with Dorling Kindersley Australia to create Family Doctor Home Advisor Online, a website that gives consumers evidence based ‘decision trees’, clear advice and simple explanations about their health. RAGCP has edited and endorsed the website information and says it is a good starting point for consumers who are seeking health care information online. The RAGCP website is accredited by the HON Code and HealthInsite.

For more information, see

Consumer Representatives


Consumer representatives are encouraged to apply for the following vacancies. Do not be discouraged if you are not successful the first time you apply as your application will assist us to know who might be interested when similar positions are offered in the future.

Nominees must complete a CHF nomination form, provide a current CV and a letter or email of endorsement from a Voting Member organisation of CHF or relevant consumer network. Please note that committee selection is based on your written application, which should address the selection criteria for the particular vacancy you are applying for.

The nomination form can be downloaded from the Members’ Area of or by contacting CHF Committee Liaison Officer, Debbie Smith, on (02) 6273 5444 or Debbie can also provide further information about most committees. CHF has ensured that sitting fees and travel costs are paid for the following vacancies.

Australian Government Department of Health and Ageing – Medical Devices Evaluation Committee

The Medical Devices Evaluation Committee (MDEC) provides advice to the Minister or the Secretary of the Department of Health and Ageing and the Therapeutic Goods Administration on medical and scientific issues relating to the safety, quality and performance of medical devices.

The terms of appointment of the current membership of MDEC are due to expire, with the legislation requiring new nominations. CHF would like to thank Frank Fisher for his work on this committee and is investigating his willingness and eligibility to nominate again. CHF anticipates providing the Minister with the names of two suitable nominees for this committee, which comprises at least eight core members and at least eight associate members. There is at least one consumer member, with other members coming from medical or bioengineering backgrounds.

It is anticipated that MDEC will meet in Canberra for one-day meetings approximately four times a year. Nominees should be willing to serve on MDEC for a minimum of three years. Expressions of interest are invited from Senior Consumer Representatives. Please refer to the CHF Terms of Reference for Senior Consumer Representatives, available on the CHF website at

This is an important committee because of its relevance to the availability and cost of medical devices and their safety, quality and performance. During the recent CHF project on private health reforms, medical technologies and devices emerged as a major concern to consumers, particularly the need for better monitoring and reporting of performance. Refer to the New Health Technologies Workshop report at A CHF policy statement on this topic will be published on December 22 in Health Voices and be available on the CHF website.

Urgent expressions of interest required.

Australian Medical Council – Recognition review group on cosmetic medical practice

The Australian Medical Council (AMC) forms recognition review groups to assess the case for recognition of a medical specialty. Review groups report to the AMC's Recognition of Medical Specialties Advisory Committee and work within the AMC’s recognition policy and guidelines. Recognition review seeks to enhance the safety and quality of the medical care provided to the Australian community and support innovation and evolution in medical education and practice. Recognition review groups are required to assessing the application against the AMC Guidelines, identify the additional information required to complete the review, recommend how that information should be obtained and write an assessment report on the group’s findings for the Recognition of Medical Specialties Advisory Committee.

A minimum of three meetings plus site visits are required over approximately seven months. Meetings are a mix of face-to-face and teleconference. The consumer representative will be required to undertake considerable reading of complex material and contribute to writing the group’s assessment report.

Expressions of interest are invited from Senior Consumer Representatives. Please refer to the CHF Terms of Reference for Senior Consumer Representatives, available on the CHF website at This committee is relevant to the CHF Shaping the Health Workforce Project. Objectives that may provide guidance on the areas CHF would like the nominated consumer representative to address include:

• Consult with CHF members and consumer representatives prior to commencement of the committee to identify important consumer issues. This is expected to include a report for publication in HealthUpdate and postings on the CHF Safety and Quality e-list inviting input and highlighting potential consumer issues;

• Advocate for health consumer and community input to recognition of this medical speciality

• Provide consumer advice on the appropriate conduct of health consumer and community consultation activities;

• Test the validity of the applicant’s claims by questioning and analyzing documentation and referring to AMC Guidelines, The Recognition of Medical Specialties and a consumer assessment framework such as the NHPAC Framework for assessing the impact of new health initiatives and policies on consumers (National Health Priority Council, 2005, Australian Government)

• Contribute to the writing of the team’s assessment report and ensure consumer perspective is clear and well-placed in the report

Expressions of interest close 23 January.

Medical Services Advisory Committee (MSAC) Advisory Panels

Applications from new consumer representatives are encouraged for MSAC Advisory Panels.

The Medical Services Advisory Committee (MSAC) engages an independent contractor to conduct much of the evidence-based assessment of applications. This involves the development of an evaluation protocol, conducting a systematic literature review, and assessing the available evidence on the safety, efficacy and cost-effectiveness of the technology/procedure.

The role of the Advisory Panel is to oversee the evaluation and ensure that it is clinically relevant. The Advisory Panel meets with the contractor early in the process to provide guidance in determining the specific research questions, scoping the task and providing valuable clinical and consumer perspectives on the technology/procedure being considered.

Subsequent meetings are then held as necessary. This may not be until the contractor has completed a draft assessment report for the Advisory Panel’s consideration. Development of the draft report takes approximately four to six months, depending on the complexity of the application.

The usual time commitment required of members is attendance at the initial half day meeting, generally held in Sydney or Melbourne, and participation in three to four teleconferences of 1-1.5 hours’ duration.

MSAC Advisory Panel reviewing Reference 35e PET for Myocardial Viability Breast Cancer and Cervical Cancer

This panel will review positron emission tomography (PET) for public funding in relation to PET for myocardial viability breast cancer and cervical cancer. PET is a nuclear medicine technology that uses short-lived radioisotopes to enable the non-invasive imaging of metabolic functions within the body. It has been in use for about 20 years overseas and over 10 years in Australia, mainly in the diagnosis of cancer. While its accuracy is well established, its clinical value in terms of impact on patient management remains unclear.

Objectives that may provide guidance on the areas CHF would like the nominated consumer representative to work on include:

• Advocate for effective consumer input into the evaluation

• Ensure the consumer perspective is reflected in relevant sections of the final report, including inclusion of a ‘Patient’s Journey’ (or section summarising the consumer perspective)

CHF thanks consumer representative Brian Stafford for his work on References 35a (PET review for melanoma, ovarian and colorectal cancer), 35b (PET for head and neck and oesophageal gastric) and 35c (PET for lymphoma).

Expressions of interest close 16 January.



Australian Medical Council – public consultation on the draft code of professional conduct for doctors

Alison Marcus, Adelaide; Robin Toohey AM, Sydney

The Australian Medical Council’s national public consultation on the draft code of professional conduct concluded with sessions in Adelaide and Perth. Consumer representative Alison Marcus attended the Adelaide consultation. Her views build on consumer sentiment from earlier consultations that the code needs to be more than a ‘feel good’ document; there needs to be a clear sense of where it leads in terms of more robust requirements. However, consumers do see the draft code as a means of building community confidence in doctors, as reported by Robin Toohey AM, who attended the Sydney consultation.

The ‘keep it simple’ approach to language has been welcomed, although there are questions as to how/whether the language can provide a ‘legal’ standing. The Adelaide consultation also raised questions around wording. The use of the word ‘good’ does not give force to the idea of this document being a minimum standard, and it seems it would be possible to rationalise away events or instances on the grounds that these were ‘fair’ rather than ‘good’. A view was expressed that the draft code lacks recognition of the differing standards of communication and therefore care between the public and private sectors. There is no discussion of the difficulties of care co-ordination and transfer of information in the private sector. Consumers are looking to the code to help deliver a holistic approach to care – ‘look after the person; not just the illness’.

CHF thanks members and consumer representatives who attended the public consultations in Melbourne, Hobart, Townsville, Brisbane, Sydney, Darwin, Adelaide and Perth.

Australian Medical Council

Diane Walsh, CHF Governing Committee, November

The work of the AMC has been heavily focussed on the National Registration and Accreditation Scheme for the past two years. As the scheme is set to commence in July 2010, the details of the new arrangements are becoming clearer. A range of consultation papers are currently being circulated, including accreditation and complaint mnagement.

A major concern for the AMC regarding the proposed accreditation model is that there is potential for the Ministerial Council to have the final sign off on accreditation standards. Consumers of health services need to be assured that there is no political interference in the standards setting and monitoring processes because of potential for government drivers, such as workforce shortages, to become mixed up with the setting of standards for training of health professionals. The AMC model for accreditation is also one that can adapt quickly to problems that are identified within on-going processes.

The Strategic Policy Committee of the AMC has been considering the issue of increasing fragmentation of the profession from a number of angles. There is a move from some medical schools to encourage early streaming of under-graduates into specialty areas and, of course, there is a still a significant number of sub-speciality areas seeking specialist recognition. The Council has asked the Policy Committee to maintain an interest in these areas with an over-arching view that increasing fragmentation of medical practice is not a desirable outcome. This position is consistent with the current health reforms in the areas of prevention, primary health care and the hospitals.

The AMC also received a report from the Forum of Australian Health Professional Councils, a body that has recently been formed with membership from each of the national councils whose professions will come under the National Registration and Accreditation Scheme - ten with the recent inclusion of podiatry into the NRAS. The Forum provides an opportunity for information sharing between Councils and potential for joint responses to consultation requests.

The AMC received an update on the current consultations it is conducting on the Code of Professional Conduct that have been well-attended by consumers around the country. In summary, the feedback has been positive about the need for such a national document to ensure practitioner conduct can be judged according to a single national standard. The tone of the draft has received criticism from a range of stakeholders, and therefore a subsequent draft will be developed for further consultation.

It must be noted that the AMC is no longer a decision making body as the organisation has changed its structure to that of a company, with a governance board. This board is elected by the greater Council, and the Council’s role is now that of an expert advisory body. At this stage there are no plans for the full Council to meet until the next AGM in November 2009.

Maternity Services Review Roundtable – Peer and Social Support in the Perinatal Period

Erika Munton, November

The roundtable was briefed on the government’s Perinatal Depression Initiative, which aims to provide routine screening for depression using the Edinburgh Postnatal Depression Scale, follow-up treatment, training and development for health professionals and research and data collection. The roundtable considered three key questions stated in the review: What if any are key support services, including peer support which warrant national coverage? What is required to ensure the quality and consistency of key support services (people were asked to mention any models that were already working)? How do we identify and facilitate effective pathways between clinical services and peer and other support services?

Discussion highlighted the need for better collaboration between maternity care providers and other support services. The BaBs model was valued for the continuity of support it offered through the perinatal period. The concept of it as an information, education, support, resource hub was supported. The linking of other support organisations and community services was valued for the whole spectrum, not just the specialist areas. Having a midwife present at support groups and the ability to link into the local maternity centre was seen positively.

Many organisations are run by volunteers and the view was that the volunteer model works well. Women are upskilled, have a place to go and be helpful, and use volunteer work as a stepping stone to return into the workforce. Community based Maternity Centres improve ongoing support and cover a multitude of needs: primary midwifery care, antenatal education, ongoing peer support, resource centre, networking of families, etc.

Ideas for change included community setting maternity centres (professionals on tap), the use of home helpers/doulas, education for women on how to use health services, childcare support, collaboration with families and professional services, transport (mini bus) from centres to service providers, continuity of carers, minimum of ten days home care (at least five postnatal visits), care and support so people can know and choose their options with understanding, teach professionals educational guidelines, provide a variety of opening hours for access to service and support centres.

A summary of achievements from 2008 consumer representative work

Janney Wale, Health Consumers Council WA/Cochrane Consumer Network

National Pathology Accreditation Advisory Council
Of interest to consumers is the consideration of issues around pathology collection centres, e-health, retention of samples and records and workforce. The consumer representative participates fully in discussions and working groups developing the accreditation standards and guidelines.

Prostheses Clinical Advisory Group – Orthopaedic (Knees)
Consumer input has been valued as this committee considers cost control of knee prostheses and the incorporation of background clinical information in assessing effectiveness and safety.

National Joint Replacement Registry
Considerable work has been done to ensure the annual report is meaningful to consumers. The report now incorporates a lay summary.

Other reports received:

Isabelita McRae, Australian Medical Council – Specialist Education Accreditation Committee

Robin Toohey AM, North Shoalhaven Health Consumer Action Group, Royal Australian College of General Practitioners, National Expert Committee, Standards for General Practice

Patti Warn, Health Consumers’ Council WA, Australian Council on Healthcare Standards (ACHS) – Standards

Hadas Haileselassie, Breast Cancer Network Australia - NPS Research and Development Working Group

Sheila Rimmer AM, CHF Governing Committee – Medical Services Advisory Committee (MSAC)

Consumers Health Forum of Australia
PO Box 3099
Ph: 02 6273 5444
Fax: 02 6273 5888

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