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Friday, 14 Nov 2008
Disability in Australia: intellectual disability AIHW bulletin no. 67
People with an intellectual disability represent a very significant client group of disability services in Australia, reflecting the priority given to this group and the origins of many disability services in Australia.
This bulletin presents an overview of prevalence of intellectual disability and its related impairments, health conditions and activity limitations. The analyses focus on outcomes of participation in major life areas in children and young adults with intellectual disability as well as people ageing with intellectual disability. Authored by AIHW. Published 12 November 2008; ISSN 1446-9820; ISBN-13 978 1 74024 850 1; AIHW cat. no. AUS 110; 40pp.; $10.00 View online for free Full publication (1.3MB PDF; 2.3MB RTF; 254KB zipped RTF)
Summary (HTML) Contents
* Introduction
* Prevalence and patterns of intellectual disability
* Transition from home to school - participation in education
* Transition from school to adult life
* Needs and unmet demand for services and assistance
* References
* Technical appendix
* Appendix tables
* Acknowledgments |
Friday, 14 Nov 2008
Global Health Watch 2
Marion Birch, Alison Whyte. Global Health Watch 2. Zed Books, 2008.
The Global Health Watch is a call to all health workers to broaden and strengthen the global community of health advocates who are taking action on global ill-health and inequalities, and their underlying political and economic determinants.
In an increasingly integrated, globalised world with new cross-border threats to health, widening disparities in both health and access to health care, and an unacceptable level of human suffering and premature mortality in developing countries, civil society actors are asking, why is so little progress being made by global health actors?
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Tuesday, 11 Nov 2008
Australian-led Global Initiative to Improve Diagnosis of Genetic Disorders
Medical Research News
Published: Friday, 7-Nov-2008 An Australian-led global initiative to improve the diagnosis of genetic disorders and reduce errors in the reporting of genetic variations has been published today in the prestigious scientific journal Science.
"There is a staggering error rate of up to 40 percent in some reporting of genetic variations," said Professor Richard Cotton, lead author of the paper, Convenor of the Human Variome Project and honorary researcher at the University of Melbourne.
"This means clinicians and specialists cannot solely rely on the research literature to inform the life and death decisions of diagnosis and prognosis of genetic disorders." Over 60 percent of people worldwide will be affected by a genetic change at some point in their lives that can result in a range of diseases such as cystic fibrosis, epilepsy and cancer. "In a world first, we aim to collect information on every fault in every gene worldwide." "Ultimately the project will provide the first global standardization of the reporting of genetic mutations and their effect on human health so clinicians can reliably diagnose, treat and inform patients," he said. The Australian-led global project combines the talents of University of Melbourne researchers and colleagues within the Florey Neuroscience Institutes, the Department of Medicine at the Royal Melbourne Hospital and the Epilepsy Research Centre, as well as international colleagues from around the globe. The project has the support of World Health Organization, UNESCO and OECD countries. The completion of the Human Genome Project in early 2000 empowered researchers with the genomic mapping of the human body. But out of the 20,000 human genes mapped, only 3,000 have any information available on their variations. "In the next few years it is expected that the number of genes in which disease-causing variations are recognized will increase dramatically," Professor Cotton said. "Currently there is no standardized way to capture this information and make it of use to clinicians." The Human Variome Project will produce standards for the storage, transmission and use of genetic variation information which for many will reduce the enormously time consuming task of seeking data to assist in providing patients with information. The Science paper details the establishment of a range of pilot projects being organised around the world that will examine how to systematically collect genetic, clinical and biochemical information in either a country specific or gene specific manner. Countries already signed on to these pilots include Australia, China, Japan and Kuwait. "Once these pilot projects are complete, we will be able to roll out suitable systems around the globe and improve the health of billions of people," he said. One of the areas the pilot will be tested is colon cancer. World leader in colon cancer Professor Finlay Macrae in the University's Department of Medicine at the Royal Melbourne Hospital is a co- author on the paper. As Secretary of InSiGHT, the International Society for Gastrointestinal Hereditary Tumours, Professor Macrae has been instrumental in establishing some of the first gene specific pilots for four of the genes predisposing to colon cancer. "Colon cancer is the commonest internal cancer affecting both men and women in the western world, "Professor Macrae said. "Genetic predispositions to colon cancer are now well recognized. Testing for mutations in some of these genes is critical to establishing risk for bowel cancer in some families. However, the information needed to interpret mutations is widely scattered and not readily available. " "Providing systems to comprehensively and readily access this information is the aim of the worldwide InSiGHT/Human Variome Project pilot," he said. Neurologist Professor Sam Berkovic of the University of Melbourne and Austin Health, and co author on the paper explains the significance of gaining better access to genetic variations for diseases affecting the brain. "There is a real challenge for neurologists to ascertain the genetic make up of the many diseases affecting the brain such as epilepsy, Alzheimer's and degenerative disorders. Access to extremely varied genetic information is critical as patients develop these diseases over a period of time," Professor Berkovic said. "This project opens the doors to earlier understanding and treatment of these complex conditions."
Additional Resources Australian-led Global Initiative to Improve Diagnosis of Genetic Disorders Australia is leading the world's first global initiative to improve the diagnosis of genetic disorders and reduce errors in the reporting of genetic variations. The initiative is published in the prestigious scientific journal Science: www.sciencemag.org |
Tuesday, 11 Nov 2008
Women living in remote areas more likely to have neural tube defect affected pregnancies
Younger women and women living in remote areas are more likely to have neural tube defect (NTD) affected pregnancies than older women and women living in major cities according to a report released by the Australian Institute of Health and Welfare. The report Neural tube defects in Australia, showed that teenage women had the highest rate of NTD affected pregnancies and women aged 30-34 years the lowest. Neural tube defects are major congenital anomalies that result from very early disruption in the development of the brain and spinal cord. Surviving children are at high risk of frequent illnesses, disability and death. Spina bifida is the most commonly known neural tube defect.
Source: AHHA E-Healthcare Brief - 11 November 2008
Additional Information
This report describes the prevalence and trends of neural tube defects (NTD) in Australia during the past decade.
An estimated prevalence of NTD among pregnancies is presented based on the information from states that collect near complete data on NTD. Characteristics and outcomes of the births and pregnancy characteristics of the mothers are presented for the period 1998-2005. The purpose of compiling this national report is to provide baseline prevalence of NTD, prior to the implementation of mandatory folic acid fortification of bread flour in September 2009. This report is produced by the AIHW National Perinatal Statistics unit and will be of interest to staff of state and territory birth defect registers and perinatal data collections, health professionals, health and welfare planners, policy makers, researchers, students and consumers. Authored by Abeywardana S & Sullivan EA. Published 5 November 2008; ISBN-13 978 1 74024 854 9; AIHW cat. no. PER 45; 86pp.; $24.00 |
Wednesday, 5 Nov 2008
DIRECT TO CONSUMER GENETIC TESTING
National Society of Genetic Counselors Genetic testing is currently available to consumers without the involvement of the patients’ healthcare providers. A growing number of ‘Direct to Consumer’ (DTC) genetic testing companies offer tests that may diagnose genetic conditions or carrier status, and/or tests that aim to predict a person’s chances of developing certain medical disorders. In addition, DTC genetic analysis is available for various non-medical purposes such as ancestry, marketing of “nutrigenomics” products or paternity testing. The National Society of Genetic Counselors (NSGC) recognizes that DTC genetic testing may increase access to medical testing services for some individuals. However, individuals seeking genetic information directly from a manufacturer or supplier and without input from a healthcare provider may lack basic and essential knowledge of the purpose and appropriateness of testing, the accuracy and clinical significance of results for themselves and other family members, or the reliability of the laboratory. There is limited regulatory oversight of DTC genetic testing services at this time. In order to increase the likelihood that patients receive appropriate genetic testing services through a DTC service delivery model, the NSGC strongly recommends that patients undertaking a direct to consumer genetic testing process assess whether the company has addressed the following issues prior to purchasing a DTC genetic test: Are consumer-friendly materials available, developed or reviewed by healthcare professionals with expertise in genetics (e.g. trained genetic counselors) and suitable for individuals seeking and receiving direct-to-consumer testing services?
Is information disclosed to potential consumers regarding test purpose, potential limitations, validity and accuracy, using language that is written for consumers?
Will results be given in a manner understandable to the average consumer, with a clear explanation of their clinical implications, if any, and including resources providing appropriate follow-up?
Are patients encouraged to share their medically relevant genetic test results with their healthcare providers and family members who may also be at risk?
Are consumer referrals to healthcare professionals with expertise in genetics available, either on staff or independent of the commercial entity, both before and after testing to assure appropriate medical follow up, including psychological counseling as needed?
Is there a process for obtaining and documenting informed consent in a manner consistent with accepted medical practices as well as state and local regulations?
What safeguards are in place to protect the consumer/patient privacy? Has the company implemented policies that adhere to testing guidelines and position statements of professional organizations, including the National Society of Genetic Counselors, the American College of Medical Genetics, American Society of Human Genetics and others? These may include relevant guidelines for genetic testing of minors or other potentially vulnerable populations.
Are the genetic tests performed by appropriately credentialed laboratories (e.g. CLIA certified)?
NSGC supports consumers’ right to access high-quality genetic services, strongly encourages the involvement of appropriately trained clinical genetics professionals in the genetic testing process, and cautions against using DTC commercial entities that have not addressed the basic issues outlined above.
(Position Statement Adopted 2007) |
Wednesday, 5 Nov 2008
Down Syndrome WA: Strategic Planning Consultation Down Syndrome WA (DSWA) has asked consultants from E-QUAL and the UWA to talk to DSWA stakeholders about the future of DSWA. DSWA wants to know what it has done that has worked well for members, what else members want from DSWA and how DSWA can be more welcoming for new members. E-QUAL consultants will be talking to families and carers, volunteers and other agencies associated with DSWA via telephone and written surveys and face to face or video link meetings. UWA consultants will be talking to people with Down syndrome in two series of interactive workshops. The workshops will be participant-directed, as much as possible, and include a program of arts activities aimed at encouraging expression. Consultations will take place between November 2008 and February 2009. Individual feedback from stakeholders will not be identified and will remain confidential. The consultants will provide a report to the Board of DSWA in February/March 2009 describing the feedback from stakeholders. DSWA will use this feedback to further develop their Strategic Plan. |
Wednesday, 5 Nov 2008
More People using Disability Services
The number of people using disability support services in Australia has increased by 24% over the past four years, according to a report released today by the Australian Institute of Health and Welfare (AIHW). The report, Disability Support Services 2006-07, showed that 232,000 people used disability support services in 2006-07, up from 188,000 in 2003-04. Tim Beard of the AIHW's Functioning and Disability Unit says this is an average annual growth rate of 7%. The largest increases over the past four years were seen in respite care (46%), community support (25%) and employment services (25%). Community support services, such as therapy, early intervention and case management, were the most commonly used services over the last four years.
Beard says most of the growth in employment services occurred in open employment services, which tend to be used by people with less severe disability than those who use supported employment services.
Accommodation support services accounted for 16% of all service users in 2006-07. He says almost half of all people using services four years ago continued to receive support in 2006-07, making it a very stable service user group. Intellectual disability was the most common primary disability (accounting for around 1 in 3 service users), followed by psychiatric disability then physical disability. The proportion of disability service users who always need help with basic activities such as mobility, self-care and communication has remained stable over the past four years. However, Tim beard says there are now more people who need help in areas such as learning, household chores, and fostering social interactions. In 2006-07, about 68% of service users report needing help with activities of independent living, 63% with work, education and community living and almost 60% with daily living activities. Check the AIHW Publications Catalogue for the availability of Disability Support Services 2006-07. |
Wednesday, 5 Nov 2008
Primary Health Care: call for submissions Key step towards better primary health care
Health Minister Nicola Roxon has called for public submissions to respond to the new discussion paper on Australia’s first ever National Primary Health Care Strategy.
Primary health care is the frontline care in the community – provided by GPs, nurses and allied health professionals. As such, the Strategy will be a core element of the Rudd Government’s response to the health challenges of the 21st century.
The Government is seeking input from all sectors of the community:
• doctors, nurses and allied health professionals,
• as well as families and individuals who are consumers of health services.
The Government wants to work with all of these groups to build on the strengths of the health system, and deliver the health care Australians deserve. Primary care is in need of reform for many reasons, including: • An ageing population
• The growing burden of chronic disease, and the need to shift the focus of the health system to prevention
• Health workforce shortages
• Growing inequalities between those with good access to primary health care and those without it
• A failure by the previous Liberal Government to plan for the future of the health system. The Discussion Paper was released at the Australian General Practice Network’s 10th Anniversary Forum in Darwin last week. It outlines directions for reform, and proposes ten elements of a better primary care system: 1. Accessible, clinically and culturally appropriate, timely and affordable care;
2. Patient-centred and supportive of health literacy, self-management and individual preference;
3. More focussed on preventive care, including support of healthy lifestyles;
4. Well-integrated, coordinated, and providing continuity of care, particularly for those with multiple, ongoing, and complex conditions.
5. Safe, high quality care which is continually improving through relevant research and innovation;
6. Better management of health information, underpinned by efficient and effective use of eHealth;
7. Flexibility to best respond to local community needs and circumstances through sustainable and efficient operational models.
8. Working environments and conditions which attract, support and retain workforce;
9. High quality education and training arrangements for both new and existing workforce.
10. Fiscally sustainable, efficient and cost effective systems.
* The paper also argues that greater equity in access and outcomes is essential, as is greater accountability for performance and outcomes.
The primary health care strategy is being developed by the Department of Health and Ageing with assistance from an External Reference Group, chaired by Dr Tony Hobbs. In order to develop a National Primary Health Care Strategy, a draft of which will be presented to the Minister by mid-2009, community contributions will be crucial. • People and organisations with an interest in primary health care can make a submission until 27 February 2009. Submissions can be made by emailing nphcs@health.gov.au, or by writing to: National Primary Health Care Strategy, Secretariat, MDP 94 GPO BOX 9848, Canberra ACT 2601.
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Wednesday, 5 Nov 2008
Recommendations for genetic counselling related to genetic testing (final version) EuroGentest Introduction
The main goal of the EuroGentest Network of Excellence (www.eurogentest.org) is to improve the quality of genetic testing. As patients' understanding of the results and consequences of the test is an integral part of genetic testing, EuroGentest also aims at improving the quality of genetic counselling services associated with genetic testing, across Europe. One of the goals is to establish recommendations for genetic counselling in connection with different testing situations. Method
To achieve this, the group assigned by EuroGentest for this task has collected and analysed international and European non-national guidelines and policies related to genetic counselling, as well as some relevant national recommendations and other documents. In addition, legislation related to genetic counselling in EU countries has been collected. Three workshops attended by experts on genetic counselling have been organized (May 2005, September 2006, December 2007). In addition, data has been collected with the help of surveys. The draft of the recommendations was distributed to European clinical geneticists and genetic counsellors and European National Human Genetic Societies for comments. The final version was written taking these comments into consideration. Background
Analysis of European legislation related to genetic counselling
Article 12 of the European Convention on Human Rights and Biomedicine (Council of Europe, 1997) requires appropriate genetic counselling prior to predictive or carrier testing (including tests to detect a genetic predisposition or susceptibility), but it has not yet been ratified by all Member States ( http://conventions.coe.int/Treaty/Commun/ListeTraites.asp?MA=9&CM=7&CL=ENG ). Analysis of international recommendations
Analysis of the international guidelines and policies related to genetic counselling identified several issues that were consistently cited as important. The most commonly mentioned were (1) appropriate training for the counsellors, (2) content of the information, (3) counsellees understanding of the information, (4) psychological support, (5) problems related to disclosure to the relatives, (6) need for consent, (7) autonomy, (8) confidentiality, and (9) fear of discrimination. (/web/files/public/unit3/summaryofguidelinesMay06.pdf) Analysis of data collected from European Human Genetic Societies
A survey on legislation, guidelines and generally applied practices in genetic counselling performed among the human genetic societies or contact persons in 38 European countries, in 2005-2006, found that there is no legislation directly related to genetic counselling in the great majority of these countries. There are, however, some professional guidelines related to counselling in some of the countries that do not have that legislation. According to the respondent, 13 countries have neither legislation nor guidelines. About half of the respondents considered that more regulation would be needed, but 10 respondents considered the existing national or international guidelines to be sufficient. (/web/files/public/unit3/Results_of_survey_1_WP_3-1_Dec06.pdf) |
Friday, 24 Oct 2008
Article: public policy and mental health, UK "We're not short of people telling us what the problems are. We're short of people telling us what to do": an appraisal of public policy and mental health. Petticrew M, Platt S, McCollam A, Wilson S, Thomas S. "We're not short of people telling us what the problems are. We're short of people telling us what to do": an appraisal of public policy and mental health. BMC Public Health. 2008 Sep 15;8:314. There is sustained interest in public health circles in assessing the effects of policies on health and health inequalities. We report on the theory, methods and findings of a project which involved an appraisal of current Scottish policy with respect to its potential impacts on mental health and wellbeing. [Abstract precis by PHC RIS] |
Friday, 24 Oct 2008
Bringing Genetic Screening to the Community
October 15, 2008 Reviewing sickle cell’s troubled history with community testing provided insight into establishing better practices and an opportunity for educating diverse groups in genetics, inheritance risk factors, family planning choices, and for those positive for trait, awareness of symptom prevention. An overview will include: policy and partnership development; training for screening, consenting and follow-up counseling; and a critiques of community environments and outreach efforts. Discussion will include: lessons learned, enhancing capacity of CBOs, liability issues, and need for national guidelines. Supported by HRSA 05-027. Presenters:
Robin Leger - University of Connecticut Health Center
Liza LeGrier - Citizens for Quality Sickle Cell Care, Inc.
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Friday, 24 Oct 2008
Newborn Screening Financial, Ethical, Legal and Social Issues Project
June 25, 2008 This project is lead by the Hawaii Department of Health in collaboration with the Western States Regional Collaborative. The project includes interviews with parents who have gone through a false positive screen and surveys on newborn screening materials. Presenters:
Kirsty McWalter - Genetic Counselor, Hawaii Department of Health
Penny Kyler - NPublic Health Analyst, Department of Health and Human Services |
Friday, 24 Oct 2008
NHMRC funds Australia’s future health
Spokesperson: The Hon Nicola Roxon MP - Minister for health and ageing
Date: Thursday, 16 October 2008 National Health and Medical Research Council - NHMRC
Today, I am pleased to announce more than $357 million to support health and medical research. Six hundred and eighty-eight National Health and Medical Research Council (NHMRC) grants are being awarded to universities and research institutions across the country to enable Australia’s best and brightest health and medical researchers to continue their research. Research into how to increase physical activity among children, nanopatches as a new form of flu vaccine and work on the next genetic frontier, epigenetics, are among the NHMRC grants being announced. Funding this year has increased from $336 million funding 660 projects in 2008. This helps ensure the health of our population for years to come. The range and diversity of research among these projects is extraordinary. I am particularly pleased that the Government’s focus on public and preventative health is well represented, with a total of almost $46.5 million going to these important areas of research. Almost $19 million is being spent specifically on Indigenous health. I commend the researchers who have received grants. It is a highly competitive process, but we know this research will repay us three times over in its benefits to health. Among the grants are: Playgrounds: a simple intervention for childhood obesity.
Professor Anita Bundy of the University of Sydney receives $486,250 to investigate whether the increasing rates of childhood obesity are related to a decrease in outdoor play because parents think it is too risky. A trial will put play high on the priority list of teachers and parents and modify the playground environment to increase activity. Nanopatch vaccines to fight flu.
Professor Mark Kendall of the University of Queensland receives $491,251 to examine a new way to vaccinate against pandemic influenza using a nanopatch that will make standard vaccines 100 times more potent than conventional syringe injection. The nanopatch uses micro-nanoscale spikes to painlessly deposit vaccine under the skin. Epigenetics, the next genetic frontier.
Professor Emma Whitelaw of Queensland Institute of Medical Research receives $1,211,250 to address our lack of knowledge about the genetic development of the human embryo, and the epigenetic changes in each cell type as they differentiate into a diverse array of tissues, errors in which process can lead to death and disease. Are you too tired to drive?
Professor Anne Williamson of the University of NSW receives $427,200 for research that will help determine whether drivers are really able to detect when they are too tired to drive safely or, if they can make this judgment, what motivates them to stop driving. Sun and vitamin D – a protective effect?
Professor Anne-Louise Ponsonby of Murdoch Children’s Research Institute, Victoria, receives $330,625 to determine what level of sunlight and vitamin D children need to prevent type 1 diabetes. Controlling that cough.
Dr Stuart Mazzone of the University of Melbourne receives $414,000 to study how the brain regulates coughing and identify new therapies for relieving the condition. Strengthening primary health to reduce sexually transmitted infection in remote Aboriginal communities.
Professor John Kaldor of the University of NSW receives $1.74 million for a clinical trial testing best practice aimed at reducing the high rates of sexually transmitted infection in remote Aboriginal communities. The trial will take place in 21 communities. Does green tea protect against cancer?
Professor D’ Arcy Holman of the University of WA receives $913,288 to determine if the chemicals in green tea protect against breast cancer, bowel cancer and leukemia. Beating the obesity epidemic.
Associate Professor Christine Feinle-Bisset of the University of Adelaide receives $ 714,000 for research into diets that help people to lose weight, only for their body weight to stabilise over time despite continued dieting. This research aims to understand the mechanisms that respond to acute and longer-term dietary restriction and will help to develop successful, long-term weight loss strategies. Reducing respiratory illness in Indigenous infants.
Dr David Thomas of the Menzies School of Health Research, Northern Territory, receives $864,875 to test whether a family-based program about environmental tobacco smoke will reduce the number of clinic presentations of infants for respiratory illness. Over 60 per cent of Indigenous children live in households with one or more regular smokers, where they are exposed to high levels of environmental tobacco smoke, a significant and preventable cause of respiratory illness. If successful, the study has the potential to improve the health of Indigenous children across Australia. Risk factors for obesity, heart disease and diabetes in young adults.
Associate Professor Alison Venn of the Menzies Research Institute, Tasmania, receives $349,700 to research how depression, smoking, poor diet, physical inactivity and alcohol consumption in young adults influences the risk of developing obesity, heart disease and diabetes. Understanding these risk factors as part of this study will then aid in developing appropriate prevention strategies. Web-based support to prevent anxiety.
Professor Helen Christensen of the Australian National University, Canberra, receives $605,125 to evaluate the effectiveness of a new automated Internet program which is designed to reduce the risk of generalised anxiety disorder and to promote self help. If found to be effective, this website will provide assistance to those at risk living in rural and remote areas without access to other resources, and individuals who prefer to seek help anonymously.
Information Source: http://www.aushealthcare.com.au/news/news_details.asp?nid=12383
Additional Information
National Health and Medical Research Council - NHMRC
The National Health and Medical Research Council (NHMRC) is Australia's peak body for supporting health and medical research; for developing health advice for the Australian community, health professionals and governments; and for providing advice on ethical behaviour in health care and in the conduct of health and medical research.
Web: http://www.nhmrc.gov.au |
Friday, 24 Oct 2008
Pharmaceuticals Industry Strategy Group – Draft directions paper
Senator Kim Carr, Minister for Innovation, Industry, Science and Research, welcomed the release of the draft directions paper from the Pharmaceuticals Industry Strategy Group. "I thank the Strategy Group for this draft directions paper. I'm glad to see that the pharmaceuticals industry has been able to come together to develop a ten year plan to attract investment in R&D, clinical trials and manufacturing activity in Australia.
"The group has provided a number of recommendations as to how the Government, industry, and workers can combine our efforts to shape the future for pharmaceuticals in Australia," Senator Carr said.
The Strategy Group, made up of key industry and union leaders, has worked together to generate new ideas about a sustainable future, focusing on the things that Australia does best, world class research and development, and a strong focus on high quality manufacturing capabilities.
"I am glad the Strategy Group sees Australia as having the potential to build on its strengths, to create a sustainable future around high quality R&D, clinical trials and specialist manufacturing," Senator Carr said.
The Strategy Group is due to submit the final report at the end of the year.
Current state of pharmacy workforce – putting the pieces together
The Pharmacy Guild of Australia has commenced a comprehensive review of the state of the pharmacy workforce. The review includes a number of independent studies which will piece together the supply and demand issues affecting the current and future workforce. All of the components for the review, which commenced in December 2007, form part of the Fourth Community Pharmacy Agreement Research and Development Program, which is managed by the Guild with funding from the Australian Government Department of Health and Ageing.
“The Guild and the Government are investing in the ongoing analysis of the pharmacy workforce to ensure we are well equipped to identify potential impacts on future requirements, and to be able to make projections to help meet future requirements which will allow the profession to grow to meet its increasing demands,” Ian Todd, Acting National President of the Pharmacy Guild said. One component of the review is the supply report undertaken by Human Capital Alliance (HCA) which has examined secondary data from sources such as the Australian Bureau of Statistics to give a snap shot of the current pharmacy workforce.
To supplement this information and to more accurately predict and project future workforce issues, HCA will be undertaking a literature review to gather information already available both here and overseas; along with developing a pharmacy workforce survey to determine future workforce demand.
Community pharmacies may soon be sent the workforce survey, which is to be completed by the pharmacy proprietor or pharmacist in charge. “We strongly encourage all pharmacists who receive the survey to take part. Their knowledge and involvement is necessary as we identify the influencers that affect change so that we can ensure our profession is viable, and can meet the challenges of the future,” Mr Todd said. |
Monday, 20 Oct 2008
Additional payments will benefit people with disability, their families and carers
National People with Disabilities and Carer Council
Date: Friday, 17 October 2008
The Chair of the National People with Disabilities and Carer Council (NPWDACC) welcomes the Australian Government’s announcement to provide financial help to recipients of the Disability Support Pension and Carer Payment. Lump sum payments of $1,400 to single pensioners and $2,100 to pensioner couples will be made from 8 December 2008. Carer Allowance recipients will also receive a one-off payment of $1,000 for each eligible person in their care. Council Chair, Dr Rhonda Galbally AO said, “the additional payments will help with the non-discretionary costs associated with disability which are often over and above those faced by people without disability.” “I am hopeful that the Government’s initiative to fast track projects in key areas such as transport and communications will also benefit people with disability,” said Dr Galbally. The National People with Disability and Carer Council provides advice and information on disability and carer issues to the Minister for Families, Housing, Community Services and Indigenous Affairs and the Parliamentary Secretary for Disabilities and Children’s Services. |
Monday, 20 Oct 2008
Australian Carers Reach 2.5 Million
20.10.2008
Around 2.5 million Australians aged 15 years and over care for someone at home because of a disability or old age, according to a new report released by the Australian Bureau of Statistics. A Profile of Carers in Australia brings together information from a range of surveys conducted between 2003 and 2006 to paint a picture of carers in contemporary Australian society. All carers
• Women were more likely than men to be carers (17% of women and 14% of men).
• Carers tended to be an older group. The median age of the carer population aged 15 years and over was 48 years while for non-carers it was 40 years.
• Of parents aged 35–54 years, 22% of mothers and 15% of fathers were carers. About half of these carers were caring for a child with a disability. The other half were combining raising young children with care of another relative or friend.
• For all age groups, carers were more likely to have a disability themselves (35% of all carers had a disability compared with 22% of all people). Primary carers
A primary carer is the main provider of care to someone in the core activities of daily living such as dressing, eating or moving around the house. One in five carers are primary carers. • Almost one-quarter (23%) of primary carers were caring for a child with a disability and almost two-thirds of these carers were spending 40 hours or more per week in their caring role. Just over 40% of parents caring for a child with a disability said they needed access (or more access) to respite care.
• 42% of all primary carers were caring for a spouse/partner; 26% were children caring for a parent; 23% were parents caring for a child.
• Primary carers spent more time on housework and less time sleeping than other people did.
• While one-third of primary carers reported negative effects on their relationship with their spouse or other family members, an equal proportion felt that caring drew them closer to the person they were caring for. Further details can be found in A Profile of Carers in Australia available for free download from the ABS website www.abs.gov.au |
Wednesday, 8 Oct 2008
Campaign to Abolish the Schizophrenia Label - Are labels people’s way of increasing the gaps between people who are not like us?
- Do labels increase stigma and prejudice?
- Is the label Schizophrenia really appropriate to describe what it is used to describe?
- Is it unscientific, a method of social control, or useful?
The WA Association for Mental Health (WAAMH) and WAMIAC, with sponsorship from The Richmond Fellowship of WA (RFWA) and the Mental Illness Fellowship of WA (MIFWA), present:
Speakers from the Campaign to Abolish the Schizophrenia Label (CASL) • Paul Hammersley - BA (hons), MSc, BABCP (acrd) RMN, Lecturer / Researcher at the 'Spectrum Centre' University of Lancaster, UK, and
• Brian Langshaw - Msc, BABCP accred, RMN, Senior lecturer, John Moores University, Liverpool Come & begin the conversation! 10th October 2008
VENUE: St John of God Auditorium, Subiaco
TIME:1:30 pm till 4:30 pm (promptly)
>> Gold Coin Donation Encouraged << For full information: |
Wednesday, 8 Oct 2008
Consumers support better information and broader health cover
Consumers Health Forum
Date: Wednesday, 8 October 2008
The Consumers Health Forum of Australia (CHF) supports Minister for Health and Ageing Nicola Roxon’s call for more broader health cover options to be available through private health insurance and for better information for consumers. The Minister made the call at the Australian Health Insurance Association annual conference today. CHF Executive Director Helen Hopkins encouraged private health insurers to implement more quickly the broader health cover options allowed since last year. ‘Consumers are keen for the broader health cover products, which have the potential to encourage better health and to help with the management of chronic conditions,’ she said. ‘These products will help consumers to make better, more efficient use of the health care system and to have better health outcomes. They will improve consumers’ health care options and consequently reduce the need for hospital treatment, which is in the interest of consumers, health insurers, health providers and the health system. ‘However, to get products that meet consumer needs, the industry needs to involve consumer organisations in their development.’ Ms Hopkins said consumers were always looking for information to help them make informed decisions about their health care. Moves to make this information available by transparent and accountable processes were welcome. ‘We have seen this already through the Private Health Insurance Ombudsman’s new website that allows people to compare health insurance products in an objective way. COAG’s nationally consistent performance indicators for hospitals will help improve the quality of health care. ‘Better implementation of informed consent for treatment, including informed financial consent, is needed for consumers to make decisions. Before agreeing to a procedure or treatment, consumers want to know what it involves, what other options there are, the timeliness and effectiveness of different options and, of course, the costs. ‘Consumers need to know the gap between the cost of a procedure and what a health insurer will pay and agree to this before they are hit with a big bill for gap payments. This is essential so they can afford the quality care they need. ‘Solutions to the growing problem of chronic conditions and cost of health care will not be easy. All stakeholders, including consumers, need to contribute to the current reform process and work together to improve the safety, quality and affordability of Australia’s health system.’ CHF will be discussing these issues further at its 21st Birthday Summit in Canberra next week.
Additional Information The Consumers' Health Forum of Australia (CHF)
the leading national organisation providing a voice for all health consumers
Web: http://www.chf.org.au Private Health Insurance Ombudsman (PHIO)
The Ombudsman publishes reports and consumer information about private health insurance. PHIO also manages the website www.privatehealth.gov.au where you can find out about private health insurance and search for and compare selected features for all private health insurance products offered in Australia.
Web: http://www.phio.org.au |
Wednesday, 8 Oct 2008
Discussion papers now available on NHHRC website
National Health and Hospitals Reform Commission
Saturday, 4 October 2008
To assist in its work to develop a long-term health reform plan for Australia, the National Health and Hospitals Reform Commission (NHHRC) invited discussion papers from authorities in the key areas of Primary and Community Care, Prevention, Governance, and Public-Private Mix. The papers are: • Achieving a patient-centred, effective, efficient, robust and sustainable primary and community care sector 2020, professor Claire Jackson and Adjunct Associate Professor Diana O’Halloran • New Models of Primary and Community Care to meet the challenges of chronic disease prevention and management, Mark Harris, Michael Kidd and Teri Snowdon • Primary Care Reform Options, Hal Swerissen • New Models of Primary Care and Community Care with a Focus on Rural and Remote Care, Assoicate Professor Isabelle Ellis, Ms Debra Jones, Professor Sandra Dunn and Dr Alison Murray • Models of primary and community care in 2020, Dr Beres Wenck and Ian Watts • Primary health care in rural and remote Australia: achieving equity of access and outcomes through national reform, Professor John Humphreys and Professor John Wakerman • New and emerging nurse-led models of primary health care, Professor Mary Chiarella • Options for reform of Commonwealth and State governance responsibilities for the Australian health system, Professor Judith Dwyer and Professor Kathy Eagar • A Mixed Public-Private System for 2020, Mary Foley • Funding Policy Options for Preventative Health Care within Australian Primary Health Care, Professor Doris Young and Professor Jane Gunn • A vision for primary care: Funding and other System Factors for optimising the primary care contribution to the community’s Health, Professor Leonie Segal • A Preventative Priorities Advisory Committee and Prevention Benefits Schedule for Australia, Associate Professor Anthony Harris • Financial incentives, personal responsibility and prevention, Professor Anthony Scott. |
Wednesday, 8 Oct 2008
Improving care for people with disabilities, older Australians and people with mental illness COAG misses the mark
Australian Healthcare & Hospitals Association
Date: Tuesday, 7 October 2008 The Australian Healthcare and Hospitals Association (AHHA) today welcomed COAG's focus on improving care for people with disabilities, older Australians and people with mental illnesses, but argued that all Australians should have access to seamless and coordinated health and community care, regardless of their type of illness and disability. The AHHA is the peak national body representing public hospitals, area health services, community health centres and public aged care providers. "For years, health and consumer groups have been pointing out that the confusion and duplication between the roles of Commonwealth and State/Territory governments is causing problems on the ground for people accessing health and social services. It is now time to stop talking about the problem and start taking positive action," said Prue Power, Executive Director of the AHHA. "AHHA is concerned that COAG's approach to establishing another group to review this situation will simply result in more delays in resolving this long-standing problem. There is no need for more reviews and taskforces. This problem has been comprehensively examined by governments, experts and stakeholders for years and there are already a number of possible solutions that have been developed which need to be considered. "For example, AHHA's National Health Policy Roundtable paper Service Integration, released earlier this year, makes 23 separate recommendations to improve the integration of health and community services across jurisdictions and sectors. These were developed with input from a broad range of experts, clinicians, health service managers and consumers and provide practical steps to addressing the issues identified by COAG. "AHHA is also concerned that COAG appears to be quarantining the benefits of greater integration of our health system to specific groups. While the groups identified are clearly important, we believe that ALL consumers should have access to seamless services and the system should be reformed so that everyone can be assured of continuity of care, regardless of their condition. "Finally, AHHA is disappointed that yet again the urgent need to address the Commonwealth's under-funding of our public hospital system was left off COAG's agenda. AHHA calls on the Commonwealth to commit to increasing the escalation factor in the next Australian Healthcare Agreements to at least 9% to address the normal increases in public hospital expenditure as well as including appropriate accommodation for increases in population and utilisation. Without this commitment Australians cannot be confident that their public hospital system will continue to deliver high quality care into the future," Ms Power said.
Additional Information
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Wednesday, 8 Oct 2008
Potential Down Syndrome Blood Test Using Sequencing Technique Developed
Oct 7 2008
GEN News Highlights A group of scientists report that they have developed a test that requires only a maternal blood sample to spot chromosomal disorders such as Down syndrome. They note that if the procedure is validated, it would provide a safer option to current methods such as amniocentesis and chorionic villus sampling. While the ability to separate fetal DNA from a mother’s DNA has been the challenge, the research team developed a method that does not require distinction between maternal and fetal DNA. First, the group took samples from 12 women with aneuploid pregnancies and six with normal pregnancies and separated the maternal blood into cells and plasma. They then discarded the blood cells, focusing on the liquid plasma's DNA fragments, which come from both the mom and the fetus. They counted the number of DNA fragments and used DNA sequencing to read each one. Next, the researchers tallied how many gene fragments originated from each chromosome. Women with Down syndrome pregnancies in the study had more chromosome-21 fragments in their blood than women with normal pregnancies. Other forms of aneuploidy could be detected as well, according to the researchers. The next step is to repeat the study in a larger number of women. The group expects it will take the new test two to three years to reach the clinic, assuming that the larger trial is successful. The study, was published online on October 6 in the early edition of the Proceedings of the National Academy of Sciences (PNAS), was developed by researchers at Stanford University, the Howard Hughes Medical Institute, and Lucile Packard Children's Hospital.
Additional Information
Support Group
The Down Syndrome Association of WA (Inc)
working together for a better future for people with Down syndrome and their families.
Web: http://www.dsawa.asn.au |
Wednesday, 8 Oct 2008
Adoption/non-adoption of European Union guidelines in Australia
Therapeutic Goods Administration
Date: Wednesday, 8 October 2008
The Therapeutic Goods Administration (TGA) said certain EU guidelines have been recommended for adoption or non-adoption. These guidelines are open for comment on whether or not they should be adopted in Australia. |
Friday, 3 Oct 2008
A public voice on PBS medicines
Consumers are now able to comment on medicines being considered for listing on the Pharmaceutical Benefits Scheme (PBS). The new measure will increase the transparency of the PBS listing process and will benefit patients, carers, health professionals and consumer groups, by allowing their input into the decision-making process.
The Australian Government subsidises over 3,000 medicines through the PBS. The Government is committed to giving Australians affordable access to medicines they need. To do this, it is seeking direct public input for the PBS listing process, to inform the Pharmaceutical Benefits Advisory Committee (PBAC) and pharmaceutical companies.
The PBAC is an expert, advisory body comprising health professionals and a consumer representative that meets in March, July and November annually, to review applications from companies for PBS listings. Companies cannot be compelled to apply for PBS listing. Under the new measure, PBAC meeting agendas will be publicly available six weeks before each meeting is held. From this time, individuals or groups will be given two weeks to complete an online form to explain how they, their family and carers would benefit from the PBS listing of a medicine to be considered at the next meeting. Comments will then be examined by the PBAC and the relevant pharmaceutical company, which has applied for the Government’s subsidisation of the medicine.
To be considered for PBS listing, a medicine must have received marketing approval from the Therapeutic Goods Administration, to indicate that it is safe and effective for treating a particular condition. A medicine may then be recommended for PBS listing if it also meets the PBAC’s criteria of medical effectiveness and value for money.
This new initiative was developed in consultation with Medicines Australia, the Consumers’ Health Forum of Australia and the Generic Medicines Industry Association. The next PBAC meeting will be held from 5 to 7 November 2008. Between 24 September and 8 October 2008, interested individuals or groups can access the next PBAC meeting agenda and the comments form at the Department of Health and Ageing’s website. Information Source: AHHA E-Healthcare Brief - 30 September 2008 |
Friday, 3 Oct 2008
Human cellular and tissue therapies regulatory framework The Australian Government has recently agreed to proceed with the establishment and implementation of the human cellular and tissue therapies(HCT) regulatory framework. Currently the framework excludes assisted reproductive tissues and solid organs. The possible regulatory arrangements for solid organs have been referred to the new national organ donation and transplantation authority. Haematopoietic Progenitor Cells (HPCs) will be included in the HCT regulatory framework at a later date following further discussion with the sector. The HCT regulatory framework is expected to be implemented in 2010 with a transition period for products to move into the new scheme. Information Source: AHHA E-Healthcare Brief - 30 September 2008 |
Friday, 19 Sep 2008
Rudd Government introduces Organ and Tissue Donation and Transplantation Authority legislation
Spokesperson: The Hon Kevin Rudd, Prime Minister of Australia, The Hon Justine Elliot MP and Senator Jan McLucas
Date: Friday, 19 September 2008
The Rudd Government today introduced legislation in the House of Representatives to set up the Australian Organ and Tissue Donation and Transplantation Authority, which will implement and oversee Australia's new organ donation and transplantation system. The authority is the centrepiece of a national plan to reduce unnecessary suffering for thousands of Australians who are waiting for organ transplants. For too long organ donation rates in Australia have lagged behind many other nations, despite high levels of community support for organ donation. The Rudd Government is determined to make transplants possible for many more Australians and the authority is the key to making that happen. It will work with states and territories, clinicians, consumers and the community sector to build a world-leading system for Australia. The Australian Organ and Tissue Donation and Transplantation Authority is part of a national reform package worth $151.1 million, including new funding of $136.4 million over four years.
The key features of the reform package include:
• $67 million to fund dedicated organ donation specialist doctors and other staff in public and private hospitals; • $46 million to establish the authority, to be set up by 1 January 2009; • $17 million in new funding for hospitals to meet additional staffing, bed and infrastructure costs associated with organ donation. • $13.4 million to continue national public awareness and education; • $1.9 million for counselling for potential donor families; and • Other significant measures including enhanced professional education programs, consistent clinical protocols, ‘clinical trigger’ checklists and data collection for organ transplants in hospitals.
Transplantation is a highly successful treatment that transforms the lives of individuals and the families who care for them.
The Rudd Government encourages all Australians to register their consent for organ donation on the Australian Organ Donation Register, which is administered by Medicare Australia. People who are considering registering as donors are also encouraged to discuss their decision with their family. The Rudd Government reforms have drawn together the best international evidence and practice, as well as the expertise of stakeholders such as the Transplantation Society of Australia and New Zealand, the Cognate Committee on Organ and Tissue Donation, Transplant Australia and ShareLife. The package does not change the framework of legal consent for donation. The families of all potential donors will be supported to make the choice of whether to donate at what is a very difficult time. The organ donation and transplantation reforms continue the Rudd Government’s commitment to making our hospital system work for Australian families.
Additional Resources
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Friday, 12 Sep 2008
Carer Payment and Disability Support Pension? What about the hardest working families of all?
Spokesperson: Carers Australia
Date: Thursday, 11 September 2008
Carers Australia is concerned that the Coalition’s proposed increase to the single rate of the pension leaves out some of those most in need. While supporting the proposed $30 per week increase as an important interim measure to help address the immediate financial pressure faced by people living off such payments, Vice-President of Carers Australia, Ms Helen Johnson says the increase should apply to all income support recipients, including those on Carer Payment and Disability Support Pension. “There are around 130,000 people on Carer Payment and 730,000 people on Disability Support Pension and many more on a host of other payments who equally need this money” Ms Johnson said. “These payments are set at the same rate as the age pension and all recipients need relief from recent increases to the cost of living.” Carers Australia believes a $30 per week increase to all income support payments will help relieve some of the pressure in the short term, but significant reform is crucial to ensure carers and other pensioners are able to afford an acceptable standard of living in the future. “The Pension Review currently underway must address the long-term needs of these people” Ms Johnson said. “But carers and other people dependent on Government support cannot afford to wait six months to buy their groceries. They need assistance now.” “If the proposed $30 per week increase is applied to all income support recipients, we would see this as a desperately-needed interim measure while we wait for the outcome of the Harmer review” Ms Johnson said. “However, the fact that the current proposal leaves out so many Australians further highlights the need for long-term reform.” The significance of the Pension Review cannot be overstated. |
Friday, 12 Sep 2008
Life-saving Drug To Help People With Hunter Syndrome Eligible patients suffering from the rare, life-threatening Hunter Syndrome will have access to a subsidised medicine to treat their illness, thanks to the Government’s Life Saving Drugs Program. The drug would ordinarily cost families up to half a million dollars each year. Hunter Syndrome is an extremely rare and life-threatening condition, and Elaprase® (idursulfase-rhu) will significantly improve quality of life for patients who suffer from it, and could add years to their lives. Around 11 people are expected to receive Government-funded Elaprase® during 2008-09. It is expected that around 2 new patients will commence treatment in each future year. The drug will be listed on the program from 1 December 2008, subject to finalising appropriate risk-sharing arrangements with the pharmaceutical company. Hunter Syndrome is the common name for Mucopolysaccharidosis type II (MPS II), a rare genetic disease caused by insufficient levels of the enzyme I2S. It affects multiple organ systems and tissues. It is progressive, debilitating and life threatening. Hunter Syndrome slows growth and causes skeletal deformities, coarse facial features, upper airway obstruction, recurrent airway and ear infections and deformities in the joints. If left untreated, Hunter Syndrome leads to a very poor quality of life and early death. The addition of Elaprase® will add around $29.3 million to the program expenditure over the four years ending 2011-12.
Support Group
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Tuesday, 26 Aug 2008
An Overview of Public Health Surveillance of Genetic Disorders, and Mapping of Current Genetic Screening Services in Australia
This report was prepared by the Public Health Genetics Working Group (PHGWG) of the NPHP and provides a summary of the national environment for public health genetics including current public health genetics programs and services; monitoring and surveillance systems for genetic disorders; education, information and counselling services; and research and development. It also consolidates overarching information relating to issues such as consent, privacy, and ethics and provides a brief overview of emerging issues. At its October 2002 meeting, the NPHPG approved the PHGWG report, An Overview of Public Health Surveillance of Genetic Disorders, and Mapping of Current Genetic Screening Services in Australia for posting on the NPHP website and referral to the AHMAC Advisory Group on Human Gene Patents and Genetic Testing, announced in May 2002, which is to consider issues around access; quality and safety; social, ethical and legal aspects of testing and service delivery issues. This report completes the work of the PHGWG which was disbanded in the context of the establishment of the AHMAC Advisory Group. Information on the work of the AHMAC Advisory Group on Human Gene Patents and Genetic Testing can be obtained by contacting the Secretary to this group: Ms Anne Deegan
Acting Director, Human Genetics Section
Australian Government, Department of Health and Ageing
Tel: (02) 6289 8604
Email: anne.deegan@health.gov.au |
Friday, 22 Aug 2008
Patenting breast and ovarian cancer (ABC, Perspective: 18/08/2008)
If someone said to you that one possible cause of breast and ovarian cancer had been patented, you would probably ask them to repeat the statement. Yet, as absurd as it sounds, the human DNA that is linked to breast and ovarian cancer in some people has been patented around the world. Luigi Palombi, from the Australian National University, explains.
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Monday, 11 Feb 2008
Report on Government Services 2008 Steering Committee for the Review of Government Service Provision. Report on Government Services 2008. 31 January 2008. Canberra.
The Report on Government Services 2008 was released on 31 January 2008. It has been produced by the Steering Committee for the Review of Government Service Provision (SCRGSP). The report has been published in two volumes.
Also released with the report were attachments, which are not part of the printed report but are available in the report sections. [Abstract precis by PHC RIS] |
Tuesday, 8 Jan 2008
Attending School with a Genetic Condition: A Guide for Parents
Genetic Alliance Genetic Alliance’s How-To Guides provides advocacy leaders with practical guidelines about a specific advocacy topic. The guides address topics suggested by members—through the Member Forum listserv, Genetic Alliance annual conference, individual conversations, and other forums—about concepts and s |
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