Friday, August 26, 2016

Informed consent and challenges for people from CALD backgrounds

We held a meeting of our Health of Older People Consumer Reference Group on Wednesday . The area of focus was the experiences of care of people from culturally and linguistically diverse (CALD) backgrounds. We have members of the multicultural community participate in discussion and Yelin and Sandra from the HCCA team ran an excellent role play that showed us how difficult it is to make informed decisions about your care when you do not understand the language.
Thank you to our colleagues from the Canberra Multicultural Community Forum and ACT Health for contributing to the session. Your input was very important to increasing our understanding of the issues faced by health consumers from CALD backgrounds.

Thursday, August 4, 2016

Reframing Primary Health Care for Older Australians

HCCA funds places at key events for our members to attend and participate in policy discussions. The most recent event was the COTA annual policy forum. This is a report from three of our members who attended. 

COTA Australia held their annual national policy forum at the National Press Club on 21 July 2016.
It was an impressive line up of front line policy drivers in the field of primary health care for older Australians, a scenario that gets little traction in the media apart from the supposed impending “tsunami of silver haired” Australians coming to an already overstretched health care sector. Probably the key point to come from the conference was that the numbers didn’t represent an impending catastrophe, but that should be looked at differently, with the societal response to older people needing reframing and older Australians respected because of their contributions to society and their human rights.  

Ian Yates, the CEO of COTA Australia, noted that in a recent survey of their constituents, older people nominated heath as their top issue of concern, a change from the previous top issue of the economy. Health will now be a strategic priority for COTA.

Highlights of the forum were key note presentations from Dr John Beard, Director of the WHO Ageing and the Lifecourse Programme and Prof Diane Gibson, Dean of the Faculty of Health at University of Canberra.

Dr Beard highlighted issues from the recent WHO World Report on Ageing and Health (

·         Healthy ageing requires an understanding of capacity and environment starting from high capacity where the needs are to help identify and prevent disease onset and adopt appropriate health behaviours; declining capacity where the focus shifts to slow decline often with multiple chronic conditions where prevention becomes important with things like resistance and balance training, and disabled public transport is provided; and finally significant loss of capacity with extensive needs and support;

·         The pressing need is for us to realign the health system to shift from an emphasis on acute care for the individual to care for multiple chronic conditions with better measuring and monitoring;

·         The costs of health care for the ageing need to be seen as an investment in the health system. Better health means long acquired skills and knowledge are maintained with the ensuing benefit to society;

·         Older people need a supportive community NOT always more funding. We need to harness volunteers to work with them within their homes and communities;

·         The term “successful ageing” comes from a US Calvinist perspective and implies there is also ‘failed’ ageing, a better approach would be to emphasis wellbeing “living long, living well”.

Professor Gibson’s research includes the health of older people with delirium and dementia in acute care settings. She began her talk on health care as a human right by detailing a harrowing story of how her mother took 5 days to die in hospital following a fall down a flight of stairs. She detailed other examples of how older people are often stereotyped by the health profession. She gave examples of how the health system treats older people differently and the ignorant assumptions behind them: failing to understand that withholding treatment leads to poorer quality of life, the hostile stereotypes about sexuality and appearance, and the lack of evidence based medicine, for example, with few chemotherapy trials done for the over 70s and rarely including women.

In the panel session on Primary Healthcare – Living Long Living Well, Dr Cathy Mead, President of COTA Victoria, emphasised the need to focus on the broader understanding of primary health care as encompassing the WHO's Declaration of Alma Ata (WHO 1978): “Socially appropriate, universally accessible, scientifically sound first level care provided by a suitably trained workforce supported by integrated referral systems and in a way that gives priority to those in most need, maximises community and individual self-reliance and participation and involves collaboration with other sectors. It includes health promotion, illness prevention, care of the sick, advocacy and community development.”  She reiterated that it is crucial to step back from clinical care to a broader public health view and adopt a rights based approach that integrates social and health care. There is inadequate investment in prevention (1.5% of health expenditure) and she asserted that there is even ageism in how this is spent.

Dr Stephen Duckett from the Grattan Institute, gave two presentations, the first about better ways of supporting older people with chronic conditions to self- manage, with a focus on how multiple levels of systems and support can provide care for that individual. He insisted that the person needs to be at the centre of the care system, rather than the GP, and that critical enablers could be supplements to fee for service arrangements such as blended payments. The Grattan Institute publication, The Perils of Place, is also a valuable read about how hospitalisation rates for diabetes, tooth decay and other conditions that should be treatable or manageable out of hospital, show how Australia’s primary healthcare system is consistently failing some communities (

Stephen Duckett’s second presentation provocatively asked ‘Can the Health System Afford All These Old People?” And of course the answer was yes! An ageing population is not driving health expenditure and the ‘panic’ about ‘sustainability of the health system is a distraction – we must look at the benefits of health expenditure as well as the costs. The basis of his presentation can be found on The Conversation website: (

Two other panel discussions covered:
·         Gaps in Access and Affordability in Primary Healthcare, with presentations on Mental Health (Dr Roderick McKay, NSW Institute of Psychiatry), Oral Health (Dr Jane Hartford, University of Adelaide) and Preventative Health (Rosemary Calder, Director of the Australian Health Policy Collaboration).
·         Models of Primary Health Care – What Do Older Australians Need?  The presentation from Dr Steve Hambleton on Outcomes of the Primary Health Care Review and Leanne Wells, Consumers’ Health Forum, on Consumer Focus and Control.

The facilitator Peter Mares summed up the forum with a list of the main points as he heard them:
·              primary healthcare must have the citizen at the centre of circles of care;
·              as we get older we have more teeth than previous generations but more gum disease;
·     better PHC is intrinsically linked better management of chronic conditions, patient engagement and agency and better coordination between systems;
·              more PHC, less hospitalisations;
·             why are we not getting there – increasingly complex systems;
·            Commonwealth/state division of responsibility – states must invest in PHC and preventative health care;
·           misinformation and myths (‘ageism’) about older people seen as a burden and a cost where less value is put on an older life, with no apparent economic importance;
·         BUT we are living longer and are healthier, as a society have plenty of time to adjust and contribute to greater civic leadership and community building.

Sue Andrews, Ros Lawson and Russell McGowan

Tuesday, August 2, 2016

Advertising by Chiropractors - AHPRA Forum 28 July 2016

On 28 July 2016 I attended a forum on Advertising that was convened by AHPRA and the Chiropractic Board of Australia in Melbourne. I was there in my capacity as a member of the AHPRA Community Reference Group.

The purpose of this forum was to facilitate open communication of different perspectives on advertising by chiropractors and provide stakeholders with information to increase understanding of issues around advertising by chiropractors. There was discussion of the role of advertising by chiropractors in supporting good healthcare decision-making and the risk of harm by misleading advertising. There was agreement about the importance of the responsible provision of information by registered chiropractors to the public. The participants were also encouraged to identify ways to improve the quality of advertising by chiropractors.

Participants were from a range of stakeholder groups including AHPRA Community Reference Group, CHOICE, Friends of Science in Medicine, Chiropractic Board of Australia, Chiropractic Council of NSW, Australian Securities and Investment Commission, ACQSHC, Chiropractor’s Association of Australia, Consumers Health Forum and Chiropractic Australia.

The Chiropractic Board of Australia and AHPRA have noted that there continues to be a high number of complaints made about chiropractors’ advertising; and the Board is concerned about the ongoing issues and confusion about advertising guidelines.

The Board is working with AHPRA to inform chiropractors of their responsibilities, as outlined in the advertising guidelines, in order to improve compliance with the guidelines and the law. The Board has run seminars around Australia to explain the Guidelines for advertising regulated health services, as well as to provide additional information and answer questions about advertising.

I spoke on a panel in the afternoon. I thought my speaking notes might be of interest.

For consumers, control and choice are important aspects of our health system.

Consumers must be able to make informed choices regarding our health care. Informed choice are dependent on receiving reliable, balanced health information that is free from the influence of commercial imperatives and is communicated in a way that we can easily understand.

We want to make informed choices about therapeutic goods as well as medical and health-related services. So I’m talking about over the counter and complementary medicines, prescription medicines, medical devices as well as medical and surgical procedures.

Advertising can play a role in this. It is not all bad.

There has been considerable attention given to this in the past decade. More recently the focus of advertising has turned to health professionals and services.

As with all things it is a question of balance. While there are risks that advertising can drive unwarranted testing and interventions there is also the argument that it reduces under diagnosis and under treatment of conditions. Advertising can enhance patient perceptions about conditions that could be medically treatable and encourage dialogue with health care providers. Advertising can build on levels of health literacy. But that is dependent on quality.

Advertising can also play a role in changing the way we think about diseases such as depression, incontinence or erectile dysfunction. Good advertising can reduce the stigma associated with these conditions.

Advertising can promote competition and transparency.

What do we value?
Choice and control
Being supported to make an informed decision about our health
Honesty and truthfulness
Patient centred care
Information that I easy to read and understand

What do we assume?
That professionals are well trained and supported to deliver services
That they are working to support us to live as well as we can
That they will put our wellbeing ahead of their business interests
That they will be truthful
That they will first do no harm

We trust our health professionals. We have trust in the health system and have a heavy reliance on this. And we are influenced by the authoritative role our health professionals play in our lives. They are influential. And many of us trust advertising. There is not a high level of critical literacy in our community but programs like the Gruen Transfer and The Chase are helping.

What do consumers want?
Want to make decisions to improve out health
Reliable information based on current evidence
Include registration number and membership of professional bodies
Truthful, no false claims, not manipulate us.

Advertising can play a useful role in building consumer understanding of health care, of procedures and medicines. Advertising can raise awareness of health issues, diseases and chronic conditions. It can also play a role in reducing stigma associated with some conditions that people may be embarrassed by eg. Depression, incontinence, erectile dysfunction.

Advertising can provide lifestyle advice and encourage consumers to take a more active role in managing our own health. Advertising can help consumers to take action, seek attention and reduce under-diagnosis or delays in treatment.

Rather than recommending chiropractors, seek independent advice. Why can’t the Board and AHPRA take more action to provide this? What role can consumer panels play in providing this advice?

Ultimately until we have public reporting of outcomes and adverse events we will continue to be reliant on advertising and word of mouth from consumers.

Risk to Consumers:
We need to build community understanding and awareness of the importance on truth in advertising in health care. There are risks in all health care but we do not talk about this enough. And it is consumers who wear the risk of misleading advertising. It impacts on our health, on our lives. We may make decisions based on misleading information. So this is an important public interest matter.

Misleading advertising can lead consumers to have unnecessary treatment.

National law is very clear, they are not permitted. This is an area of interest for consumers. It is also about consumer feedback. Partly it is because they educate/ inform consumers about the work health professionals do. Many consumers do not know what the scope of practice of individuals is. Instead of testimonials, why not use case studies? Examples of safe practices? We need more information about what we can expect.

Continuing Professional Development (CPD)
All registered chiropractors must comply with the registration standards set by the Chiropractic Board of Australia and make a declaration of their compliance with these standards when they complete their registration renewal application each year.

The CPD standard requires all practising chiropractors to complete at least 25 hours of CPD per year. And at least half of this have to be in formal learning activities. The Boar d provides advice on their website on what constitutes formal and informal learning. All practitioners must hold a current Senior First Aid (Level 2) certificate or equivalent. First aid certificates need to be renewed every three years to remain current.

My talk:

As is the case, most of the speakers who spoke before me covered many of my points so my notes were put back in my bag and I started again.  What follows are the hastily written notes I made for myself:

A few points to start off with.

I find it very difficult to separate advertising from practice. I am not alone.

Public reporting of outcomes would improve this situation as it would mean we are not reliant on advertising and the experiences of family and friends or the rapport we have built with our health professionals. Our health decisions could be based on data.
I strongly support consideration of reviewing the CPD courses to make sure that they include the science of evidence based medicine as well as being educationally sound.

And yes, AHPRHA registration means something. It implies that registered health professionals are competent and will do no harm. AHPRA registration – right or wrong – can be taken as a proxy for competence.But risk is inherent in health care and we need to improve the way risks are talked about in the public arena as well as by health professionals seeking informed consent of their patients and clients.

And who are the registered chiropractors who are not members of professional bodies? Is there a correlation between those who are not affiliated with professional bodies and those who do not comply with the advertising rules?

I am interested to know how the three professional bodies are taking an active role in reviewing websites and advertising? There are risks to consumers and reputational risks to the profession.
Easy to be dispassionate but health care is about emotion. We are invested – we have relationships with the people who treat us. Our health is about our life and about the lives of the people who we love. What about those people at the end of their tether? They have tried other health services and not received relief from symptoms. These people are vulnerable and desperate and may make emotionally based decisions. It is good to see emotion in this room because this matters.

We make emotional decisions about health care. We don’t always look at the evidence and some of us may not have the skills or awareness to do this.

And advertising can tap into that. It is influential and can shape our health decisions.

The system is reliant on professionals doing the right thing but the eyes and ears of the public are focussed on identifying breeches. And we need AHPRA to act. Regulatory responses seem to be too slow. AHPRA is totally overwhelmed by the number of complaints on advertising. Over 600 complaints but only about 20 significant actions, and in what timeframe? Responsiveness and timeliness is an issue. This needs to improve.
Whose voices haven’t we heard?

What about vulnerable people who may not understand their rights, or consumer law?

What about people who are recent arrivals in Australia and do not have knowledge of our health system? Will they have the critical literacy skills to work out if they can trust the advertisements and make informed health decisions?
And what about people with poor English language proficiency or cognitive impairment?

This is why we need to be vocal and call for more action. These people may not make complaints – it is up to us.

Further information

Darlene Cox

Tuesday, June 7, 2016

A strong budget for healthy communities: ACT Budget 2016

Overall this is a strong health budget that continues to deliver funding to critical services for the ACT.

The commitment to enhancing services for emergency departments and trauma services is much needed. The major announcements are:
- Expanding Intensive Care ($4.6m over four years) to provide one additional bed at Canberra Hospital
- Neonatal Intensive Care ($5.3m over four years) will include two additional neonatal cots. This was always part of the plan with the new hospital bringing on line additional places as the population increased.
- Trauma Services ($5.3m over four years) expanding the major trauma service at Canberra Hospital to provide a specialised model of care.
There is money for more staff with provision made for an additional 39 staff to be hired in the next financial year at Canberra Hospital emergency department, including four new doctors and 24 nurses ($28m over four years). There is also funding for a senior emergency medicine physician at Calvary Public Hospital ($1.9m over 4 years).

Improved palliative care services ($2m over four years) providing an additional paediatric nurse. There will also be an additional palliative care specialist to provide education to treating teams across Canberra Hospital and building capability in palliative care. We are very supportive of both initiatives.

There is an allocation $6m over four years to maintain and expand drug treatment and support services in the ACT. This provides for a range of services including naloxone program, post treatment drug rehabilitation and the Alcohol Tobacco and Other Drug Association the peak body for the sector.

Stroke services at the Canberra and Calvry Public Hospital will receive $5m over four years.  This will employ an additional four specialised staff to provide more timely assessments for clot break-down treatment. This will also allow for improved availability of intra-arterial clot retrieval treatment.

There will be an expansion of outpatient services with the budget allocating $4m over four years. This will include neurology, cardiology, respiratory and sleep services.
Endoscopy services will be expanded by an additional 300 surgeries each year, with a budget cost of $1.2m over four years. This expansion is designed to reduce elective surgery waiting times.

Outreach health services for Aboriginal and Torres Strait Islander peoples will be provided with $1.2m over four years. This is to help deliver appropriate specialised care and support services through outreach services. We are very interested to hear more about this, especially given the ACT Government is in the process of finalising the ACT Aboriginal and Torres Strait Islander Health Plan 2016-2020.

Mental Health has received funding for a range of different programs and services with $43m over four years to be allocated to the staffing and operation of the soon to be open Secure Mental Health Unit. This will allow for the operation of 10 beds that is part of phase one of the Secure Mental Health Unit. There is also an allocation of $2.7m to expand the current bed numbers at the Adult Mental Health Unit from 35 to 37.

Mental health rehabilitation and follow up services will receive $2.9m to establish a Young People’s Mental Health Treatment Team for people experiencing, or at risk of developing mental health illnesses. This will allow for outreach and treatment through intervention. Any additional money for mental health services is welcome but particularly for young people as we know that this is a need.

There is a focus on funding for medical technology that is exciting. Advances in technology have made sequencing an individual’s genome a reality. Genomics is a development in health care that will likely lead to more accurate medical diagnoses and more effective and individualised treatments The Canberra Clinical Genomic Service ($7.3m over four years) will enable more personalised medicine to improve health outcomes. The other exciting aspect to genomics is the potential to reduce unnecessary and ineffective treatment, improving the experience of care of consumers, improve health outcomes and also deliver cost benefits to the health system. The Minister's media release says: "The new genomics program will build on existing research, expertise and achievements of the Centre for Personalised Immunology at the John Curtin School of Medical Research to develop genomics as part of a clinical and diagnostic service in partnership with ACT Pathology." We are pleased that the ACT Government has committed to establishing this Centre and look forward to finding out how consumers will be involved. Involving consumers in research is an important aspect of consumer and community engagement and we are interested in developing a model of participation for this Centre.

The budget includes funding for a feasibility study to assess the benefits of establishing the Australian Pancreas Centre ($200,000 for one year). There is little detail about this but we support the approach. We see that there is value in considering how ACT Health will collaborate with other bodies set up for this such as the Australian Pancreatic Genome Initiative. Pancreatic cancer is relatively uncommon representing about 2% of all new cancer diagnosis but it has high mortality and poor survival rates. It is a disease that can and does devastate families. We welcome consideration of establishing the Australian Pancreas Centre.

There is also $1.3m over four years for the introduction of deep brain stimulation services for people with Parkinson’s disease or other movement disorders. It will be for those people who derive minimal benefit from drug therapy. Deep brain stimulation is a surgical procedure and it has been used in Australia for over a decade. This procedure is offered in other capital cities so this will offer other options for ACT residents.

There are funds set aside for a range of health infrastructure which includes the construction of University Canberra Public Hospital, the much needed sub-acute rehabilitation hospital. There is $360,000 for the business development case of the new Civic Health Centre as the existing Health Centre will be relocated following the sale of 1 Moore St for the ACT Government to derive benefit from the Commonwealth Government Asset Recycling Initiative.

There is $95m for major refurbishment of existing infrastructure to ensure that these buildings meet future health needs for at least the ten years. This includes Canberra and Calvary Public Hospital and also other health facilities around the ACT, including the development of Strategic Asset Management Framework. This is imminently sensible if ageing infrastructure is to be used over the next decade. HCCA has developed a strong model for consumer participation in health infrastructure projects and while it appears that the billion dollar rebuild of the Clinical Services Building at Canberra Hospital is deferred we look forward to continued involvement to improve the existing buildings. The look and feel of health services is important, it builds our confidence in the services. We want health services we can be proud of and will serve our communities well.

The omission from our perspective is the funding for eHealth. Over the past four years there has been funding for Health-e futures, a total of $90m was allocated by the Gallagher Government to build the capability of the public health services for eHealth. There was a small amount included to advance this agenda with $250,000 allocated to determining the feasibility of migrating the Cavalry Hospital ICT infrastructure to the ACT Government network. We are hopeful that the election campaign will bring a renewed focus on eHealth as it is an important enabler of safe, high quality health care.

Darlene Cox
Executive Director

Monday, May 16, 2016

Seniors Health Roundtable - 11 May 2016, Canberra

The ACT Government has an Active Ageing Framework that sets out the Government’s priorities for active ageing over the next three years. The framework articulates the Government's vision for all senior Canberrans to lead active, healthy and rewarding lives as valued members of our community. One of the guiding principles is the health care is affordable and accessible This means that health services are community based in addition to hospitals.
HCCA had been advocating for a focussed discussion with community members on ways to improve access to health services for older people. We were pleased when the Active Ageing Framework was released and they included an action to convene a round table on health of older people. We participated in the Steering Committee for this round table and our members turned out in force at the event on 11 May 2016.
The round table was opened by Chris Bourke MLAMinister for Seniors and Veterans.
HCCA President, Dr Sue Andrews, spoke at the round table about the challenges in transitions in care. Her speaking notes are included here.

Theme: Transitions in Care – continuity of care across services

I would also like to acknowledge the traditional owners and custodians of the land on which we meet. I respect their continuing culture and the contribution they make to the life of this city and this region. I pay my respects to their elder past and present.

I am very pleased to be here today. The health of older people is one of the health policy priority areas for HCCA. We also have a very active group of members and consumer representatives who are involved in a consumer reference group who identify and advocate for the health of older people in the ACT and surrounding region.  Much of what I say in these introductory comments is informed by their work.

As health care consumers in many different settings, older people are particularly conscious of the frequency and quality of the transitions in care that they experience as they traverse the health system. As well as a general practitioner or family doctor, they are likely to have several other health care practitioners, often specialising in one organ system, disease or condition. They may receive this care in settings such as GP rooms and other private practitioners’ clinics, in a hospital (private or public), in a rehabilitation facility and in a long term facility such as in aged care.

Healthcare delivery is increasingly complex and multidisciplinary, and where the health care system is complex and often fragmented, good continuity of care across services is not always easy to achieve. When it is not working well people may not adequately understand their health problems and may not know which practitioner to talk to when they do have problems and questions. It is vital that older people are supported to access health literacy programs so they can be well informed and participate as much as possible in managing their own health care.

For consumers the challenges for achieving optimal transitions of care across health services relate to having many practitioners, many settings and many rules (eg about where different clinicians can practice, who has responsibility for different pieces of patient information).

Lack of access to health care can also contribute to disruption of continuity of care. Some older people may miss follow up appointments because they don’t have transport to their GP’s office, or need GP care after hours (sometimes resulting in a call to the ambulance to go to the Emergency Dept). They may not see their specialist because they can’t afford it. And they may not know what actions they need to follow if they have not received information that respects their cultural background or is in a language they cannot understand.

The Australian Safety and Quality Framework for Healthcare, under the principle of consumer centred care, identifies improvements in continuity of care as a key area for action. “Continuity of care for patients must apply within the healthcare team as well as between any team and other health professionals”. (p4)

One of the most important things for consumers is that each health practitioner they see is aware of their medical history, their social circumstances and their treatment plan. Lack of this information can cause considerable anxiety and frustration for patients (and the health practitioner) and can cause delays in appropriate treatment, duplication of investigations and even the provision of inappropriate care. (AQSH Framework p5)

Transitions in care for consumers always need to involve efficient and timely clinical handover. “Clinical handover is the transfer of professional responsibility and accountability for some or all aspects of care for the patient…to another person or professional group…Clinical handovers occur at shift change (in hospital), when patients are transferred between health services or wards, as well as during admission, referral or discharge.” (p5) Millions of clinical handovers occur annually in Australia and this is therefore a high risk area for patient safety with consequences that can be serious.

At all points in the process of transitions in care, communication between practitioners and with consumers and their families and carers is very important. Use of both paper based and electronic medical records are critical for handover and transfer documentation, as is working with patients to make sure they have sufficient information and understanding of their treatment to be able to effectively participate in maintaining the continuity of their own care.

Some of the issues that have been identified for discussion at this afternoon’s roundtable about transitions in care include:
·         High quality transitions in care through careful integration of services;
·         Avoiding gaps in care during critical transitions;
·         Effective communication with the consumer, their family, and other healthcare providers;
·         Complete transfer of information – a patient safety issue;
·         On- going access to health literacy for older people and their families and other care givers;
·         Access to essential services and a single point person to ensure effective coordination and continuity of care;
·         Health assessment processes that ensure consumers are supported to achieve the best health outcomes depending on their situation and condition;
·         Unnecessary or inappropriate transfer of residents of aged care facilities to hospital Emergency Departments; and
·         Availability of community nursing and community health services to enable people to return to their homes with appropriate support after discharge from hospital.

For most of us in this room today these are not new issues. So I look forward to our discussions this afternoon which will I hope focus on some innovative solutions for the healthcare system and improved outcomes for older health care consumers in our community.

Sue Andrews, 
President, Health Care Consumers Association ACT.