Tuesday, December 15, 2015

Building 15, Canberra Hospital

Our Executive Director, Darlene Cox, had a tour of the new Building 15 at #Canberra Hospital in early December. She took a  few photos to share.

Treatment Room in Building 15 at 
Consult Room in Building 15 at 

Consult Room in Building 15 at 

Long, wide corridors in Building 15. 
There is good lighting and alcoves to store a range of equipment. 

Gym for exercise physiology. You can also see that patients
are to be escorted by staff members to consult and treating rooms
in Building 15

Good to see bariatric plinths so that people of all sizes can 
safely access the care they need.

Building 15 - the view from the access point of 
the large multi story car park.

Thursday, November 19, 2015

Medicare Benefits Schedule Review Consultation :President Report Dr Sue Andrews

On 26 October I attended a Consumer Workshop in Sydney, one of several convened by the Consumers’ Health Forum as part of the government’s consultation process for the Review of the Medicare Benefits Schedule (MBS).

The workshop was attended by a diverse range of consumer advocates and organisations including Breast Cancer Network Australia, Pain Australia, and the Australian Patients Association

The Minister for Health, Sussan Ley, gave some introductory comments about why the MBS needs to be reviewed and why consumer and carer input is critical to that process.
Professor Bruce Robinson, Chair of the Review Taskforce, then gave an overview of the Review, key issues in the Consultation Paper which is providing the basis for their call for public submissions.

Professor Robinson also provided an update on progress with the Review. Its first report to Government is due in December 2015.

MBS review activities have been distributed among several groups including Clinical Committees, a Principles and Rules committee and Item-specific working groups.
Of the 30 Clinical Committees, 6 priority areas were launched in October – Obstetrics, ENT, Gastroenterology, Thoracic Surgery, Pathology and Diagnostic Imaging.

The input received so far draws on a wide variety of experiences with the MBS:

  •  250 people have submitted feedback online, representing all states and territories.
  •  126 clinicians or health professional organisations, 96 consumers or carers, 20 others.
  •  Carried out a triage of items,
  • Created a preliminary list of obsolete items is being examined further,
  • Targeted areas are being moved into evaluation (eg sleep studies, pre-natal testing) and,
  •  Several new items have been proposed.
  • Referral regulation: Consumers and clinicians have asked to re-evaluate the three month limit on specialist to specialist referrals. This limit can force clinically unnecessary ‘renewal’ consultations.
  • Rural Delivery: As rural delivery models and workforce levels evolve, stakeholders have asked for updates to geographic adjustments such as exemptions and cost adjustments.
  • Ongoing item reviews: Stakeholders suggest that more frequent ongoing reviews could make the MBS a ‘living document’ improving the quality and relevance of procedures for patients.

The Review has already;

The Rules Committee is considering cross-cutting issues whose implications extend across the Clinical Committees including but not limited to;
Finally, there was some focused discussion around the key themes of the inquiry – unnecessary medical consultations, procedures or tests; application of Medicare rules; information requirements to make decisions about services; and how consumers could be engaged in the review process. 

The final discussion explored how consumers and carers could be better engaged in the Review process. The Review Taskforce have suggested consumers be involved as members of Clinical Committees, through public consultation on draft recommendations and through health consumer organisations. However they don’t have a clear consumer engagement strategy at this stage. Participants discussed other options such as social media and pointed out the importance of meaningful engagement with Aboriginal and/or Torres Strait Islander communities, Culturally and Linguistically Diverse communities, and refugee and migrant communities.

The MBS Review website contains all relevant information about the program, including outcomes of the consumer and stakeholder forums:

Dr Sue Andrews
President, HCCA

Friday, November 6, 2015

Health in Difference Conference Report By Elizabeth Proctor Health Care Consumers’ Consumer Representative & Eleanor Kerdo Policy Officer HCCA

Elizabeth Proctor:
In mid August I was lucky enough to attend the first day of the 9th National LGBTI Health Conference Health in Difference (and I apologise for the delay in reporting back!). The most striking thing about the conference was how thoughtfully the program and speakers engaged with the overlaps and interactions between healthcare provision and marginalisation of groups. A special focus was placed on how Aboriginal and Torres Strait Islander and culturally and linguistically diverse LGBTI peoples face multiple disadvantages, both when seeking healthcare and more broadly.

The conference speakers shared stories that showed how far we’ve come in LGBTI communities, but also how much work remains – a lesbian mother who in the 1990s snuck into hospital to care for her baby (it took the hospital a week to notice there were two mums taking turns), Bob Brown’s memories of shock therapy and seeking out so many psychiatrists before finding one who gave him the best advice (‘Bob, sounds like you’re gay. Why don’t you try accepting it?’), Muslim-Australian siblings challenging the western notion of ‘coming out’ (instead, invite your loved ones into your life), and lawyers advocating for sex-positive aged care facilities (why aren’t there any double beds?). In a bright spot for aged care, Human Rights Commissioner Gillian Triggs pointed out that the recent change of law for inclusive facilities was almost surprisingly uncontroversial; updating the Sex Discrimination Act so religious aged care facilities were not exempt from LGBTI non-discrimination was met with general acceptance across the community.

Eleanor Kerdo:

On day 2 Eleanor swapped in and attended the ageing and aged care stream. There are lots of organisations working on making aged care facilities (ACF)  and services more LGBTI inclusive, both at a policy and personal level. Silver Rainbow is offering training on inclusive practice to ACF staff, while the Department of Social Services is developing formal standards for LGBTI inclusive aged care. Palliative Care Australia is similarly working on LGBTI specific policy frameworks. On a frontline service level, Switchboard Victoria provides community connections to isolated LGBTI elders through the good old cup of tea, connecting them to new friends who can build their confidence and support them settling into aged care.

Philomena Horsley of Gay and Lesbian Health Victoria (LaTrobe University) presented on LGBTI people’s experiences in end of life care and reflected on the history of end of life care in the LGBTI community. At the height of the 1980s HIV-AIDS epidemic, the LGBTI community was at the centre of an underground end of life care and euthanasia movement to support terminally ill patients with AIDS. At that time a large number of nurses and doctors could see a clear need for those services and took big personal risks to provide care. As conversations about dying with dignity become prevalent again it is timely to reflect on those moments in history that were so compelling to past generations.

Several community groups expressed an interest in HCCA’s Advance Care Planning Project, and Christine is looking forward to working with LGBTI communities in Canberra to help people develop aged care plans that work for them.

Thanks for sending us to this conference we thought it was excellent!

Thursday, August 27, 2015

Launch of Capital Health Network

Yesterday I spoke at the launch of the Capital Health Network. The entity was officially launched by Simon Corbell MLA, Minister for Health and Deputy Chief Minister.

The Chair of the Network, Dr Martin Liedvogal, shared the Blue Print with attendees. This document sets out the roadmap for the Network.

My speech is posted here for people to read. As usual, I strayed from the script a little bit...

Health Care Consumers Association is very pleased to work with the Capital Health Network. We are the peak consumer organisation in the ACT and represent the interests of consumers in our very complicated health system.

Consumers and carers need to have a strong voice not only at the Board level but across the operational areas of the Network. We supported a small group of experienced consumer representatives and advocates to provide important perspectives in the development of the blueprint for the Capital Health Network. We worked closely with the staff to develop the foundation documents.

We need to build our understanding of the needs of the community so that services can be developed and supported to meet those needs. The population health planning function of the Network presents us with an opportunity to refine our health system to keep our community as well as possible.

Primary healthcare is essential to a healthy community. There is a new round of reform being led by the Federal Government and this is driven by the desire to control costs in the health system.  But we need to remember that it should not only be about reducing costs in the short term but how we can improve the health of our communities in the long term. The focus of the reform has to be on spending health dollars on what works the best.

There is also reform in workforce. We are at an interesting point where there are many players stepping into the primary care space. General practice-based primary health care is still key but we are seeing the potential for more services delivered by other health practitioners like health coaches, peer workers in mental health and – dare I say it - pharmacists. And we know that private health insurers in this country are also very interested in how they can offer products to support consumers in primary care.

We are also seeing an increased focus on self care and self-management by people with chronic conditions. Health literacy is the key.

Affordability of healthcare is one of the biggest issues for consumers. Out of pocket costs of primary health care are significant. The MBS rebate has not kept pace with the increasing costs and so many consumers face very real decisions about what services to access or which prescription to fill. Cost to see GPs, medical imaging, pathology, prescription and over the counter medications, physiotherapists, and then there's the cost for dental care.

We need to make primary health care more affordable so people can access the care that will benefit us. The stronger our primary health care the less demand for acute services.

There is much work to do but the Capital Health Network does not have to do this alone. There are roles for the ACT Government, the professional bodies, community services, consumer organisations and of course the Network’s membership.

So in closing I would like to congratulate the staff and Board of the Capital Health Network. I would also like to acknowledge the work of the former CEO Leanne Wells, former Board Chair Rashmi Sharma, and also the role that Vlad Alexandric and Angelene True have played in the transition.

Community based solutions can only be developed in partnership. Clearly the Capital Health Network understands this and we look forward to continuing to work with them to meet the challenges the primary health care system faces and improve the health of our communities.

Darlene Cox
Executive Director

Tuesday, August 25, 2015

Consumer-led Ideas for Better Primary Health Care – CHF Workshop

On the 19th August, I had the pleasure of attending a workshop on the future of primary health care, organised by the Consumers’ Health Forum of Australia (CHF). The program for the day included an impressive line up of speakers, including the current Commonwealth Minister for Health, who demonstrated energy and commitment to reform.

Proceedings kicked off with presentations from the Chairs of the two connected large scale reviews currently underway: the review of the Medicare Benefits Schedule and the Primary Health Care review. It was encouraging to hear that the two reviews are not being conducted in isolation from one another, with crossover in membership designed to keep watch on changes in one area that may have significant consequences for the other. Both speakers emphasised that their tasks were not about savings, but about better “value” health care (focused on value for the system rather than the individual consumer). Both also commented on the importance of providing and measuring quality care through methods such as increasing use of clinical guidelines. Although there was a significant focus on people with chronic conditions and complex needs, how to deal with conflicting care guidelines for these people was not mentioned.

The focus on costs continued with the presentation from the private health insurance industry representative. The speaker described two programs focused on reducing costs associated with avoidable hospitalisations. The first targeted health fund members with chronic illness and repeated hospital presentations, providing integrated care wrapped around the consumer and GP. Services included phone support, care navigation and flexible funds to be used to improve health literacy and help ensure appropriate care. The second targeted consumers being discharged from hospital, providing three brief follow-ups to reconnect people with their primary health care providers. Both programs were described as having consumers at their heart and clearly have great potential to improve outcomes. It was therefore a bit disappointing to see the “outcomes” box on the evaluation slide describe the result as a reduction in claims rather than an improvement in health.

For me, the contrasting presentation was from the Australian Health and Hospitals Association speaker. She took the approach that incentivising health professionals to engage in what should be good business practice was not a good use of health funds. Reforms need to focus on the rising out-of-pocket costs for consumers as well as the system costs and focus on achieving outcomes rather than rewarding the business of carrying out health care. The business example was taken further with discussion of outdated IT practices hampering progress. This includes problems with data sharing and a lack of interoperability between proprietary health-related software packages.

The main theme of the day therefore turned out to be “how can we squeeze better value out of what we’re already doing?” Costs are an important part of health care but I am bothered when they are wrapped up as “person-centredness” as it can lead to selective care and ignores what matters for consumers. Rewarding outcomes sounds like a smarter move than activity-based incentives, but what happens to the consumers with very complex needs and/or multimorbidity who may not be able to achieve the outcome targets that get doctors the rewards? There is a risk that these consumers may face limited choice of health professionals willing to take them on.

The other theme that emerged was health literacy. I was interested in the conversation regarding health literacy as it seemed to be discussed as the way to ensure people could navigate the health system. Whilst it is true that improving health literacy can help consumers understand the most appropriate health care choices, this does not automatically equate to an ability to navigate the system or make the lowest cost choices. Factors such as complex conditions and location can also play a strong role in where consumers turn for health care. 

Michelle Banfield
Vice President, HCCA

Health Literacy Forum, ACT Health - 24 August 2014

I attended the ACT Health forum on Health Literacy. I attended for three reasons: to support Yelin Hung who has been completing the course; to hear about what the other participants have learnt and also to present on consumer perspectives of health literacy. While the turn out was smaller than anticipated it was still a very useful morning of sharing and discussion.

What follows are the notes that I took from the forum.

Health Literacy - Michal Morris, Centre for culture, ethnicity and health

Michal Morris is the General Manager of the Centre for Culture, Ethnicity and Health (CEH). The CEH has been working with ACT Health staff on building their understanding of health literacy and devising quality improvement projects they can undertake in their workplace.
Defining health literacy:

Not one definition of health literacy that is a strength as it is content and context specific. It has to make sense to individual. It is going to change in professional lifetimes as the environment changes and the community changes.
There are commonalities that fit into every definition:
·         Have a good understanding of health outcomes
·         Focus on disadvantage – but you don’t have to define the disadvantage but acknowledge the barriers
·         The service system has to respond.
·         It can be an asset or deficit model.
·         Health literacy is not just when consumers are compliant but when they understand what is being said and interpreting it with their values and beliefs and come up with their own opinion.

Health literacy is being driven by the Commission at the national level. There is a strengthening of the links to the national health quality standards and a strong relationship with consumer participation and cultural diversity. There is a growth of interest and understanding of how it links to the health system.
Around 20 participants are completing the Health Literacy Course. There are four modules delivered over eight months. The four modules are:
·         Health literacy and communication
·         Organisational health literacy
·         Capacity building
·         Building on the knowledge

Health literacy – national perspective. Dr Nicola Dunbar, Australian Commission for the Safety and Quality in Healthcare (ACSQHC)

Definitions were developed over time with stakeholders. The Commission separated health literacy of individuals and the environment.

Work started in 2011 and they recognised it as a safety and quality issue. They reviewed the activity in health literacy and found about half of all health literacy related to health information but it also includes research and knowledge sharing, building individual health literacy, workforce training and policy development. The released a discussion paper and received 66 submissions and found out about over 200 initiatives that health services were using and there were a range of approaches with great variability. After this they developed a discussion paper to developing a national statement on health literacy.

At its core health literacy is about people being able to access, understand and act on health related information. There are three main areas of focus: embed it into systems, integrate in education and ensure effective communication.

Embedding health literacy into systems through the national level policies, curriculum and standards as well as policies and procedures at organisational level.

Ensuring effective communication with appropriate information is provided in a way that people can understand it in a form they need. IT is also part of interpersonal communication with education and recall as well as shared decision making.

Integrating health literacy in education included education for consumers about health, children at school. It is also included in the education and training of health care providers and students.
Di Webb, Tasmanian health department has been active in this area. They have had a health literacy strategy. They have videos with staff. Doesn’t matter where you start, you just have to start somewhere.

Everyone has a role in addressing health literacy – consumers and our families and carers, health care providers, health care organisations, government and education and training organisations.
The national statement was endorsed by Health Ministers in August 2014 and there was a national workshop on health literacy in November 2014. The workshop identified where to go next: building health literacy into systems, developing and implementing health information standard, supporting and empowering consumers, address the gaps between policy and practice, support staff to address health literacy needs through the provision of training and resources.

The Commission has published a series health literacy infographics and have also developed summaries of health literacy for consumers, clinicians and and executives and managers.

What are the drivers for quality improvement in Australia? The National Safety and Quality Health Service Standards are being reviewed and there is more explicit reference to health literacy in the new draft standards.

·         Governance systems – systems to support consumers to be partners n the healthcare design, delivery, measurement and evaluation.
·         Partnering with consumer sin organisational design and governance: understanding of diversity of needs of consumers; consumers are partnering in design and governance
·         Health literacy: embedded in systems; consumer receive information that supports safer care and better health outcomes and is easy to understand and use
·         Partnering with consumer in their own care

Clinicians provide consumers with information about health and healthcare that is easy to understand and use, is in a format that meets their needs, includes information about the things that are important like treatment and options and risks and benefits.

Where to next? If we are going to do this in a comprehensive way this is a long term proposition. There is no quick fix and it requires a multilevel approach. We need coordinated national approach to raise the profile of health literacy. But there are things that we can do locally to advance health literacy to improve the environment. Think about who uses the services, build health literacy into the policy framework and the training you provide to health staff.

Darlene Cox
Executive Director

Friday, August 21, 2015

NPS Medicinewise National Medicines Symposium 2014 Conference Report Medicines in Health: Shaping Our Future

Pat Branford, HCCA Consumer Representative, attended the National Prescribing Service (NPS) MedicineWise National Medicines Symposium in late 2014. The theme of the conference was ‘Medicines in Health: Shaping Our Future’.

The conference was held over three days with three different plenary sessions, these were:

1) Medicines in health: shaping our future – sessions were focussed on taking a long range view of medicines in health from the perspective of individual consumers, health professionals, the broader health system and our future society;
 2) Sustainability – future sustainability of medicines in terms of cost, benefit, access, quality and safety and investment in an increasing competitive market; and
 3) The implementation experience – looking at real world challenges in translating evidence into action and positively shape the future.

HCCA will be featuring in separate blog posts a rundown of each of the days which can be found at the following links:

·         Day 1
·         Day2
·         Day3

NPS Medicinewise National Medicines Symposium 2014: Day 1

Pat Branford, HCCA Consumer Representative, attended the National Prescribing Service (NPS) MedicineWise National Medicines Symposium in late 2014 which was held over three days. The theme of the conference was ‘Medicines in Health: Shaping Our Future’.
Here is a summery on the first day. To read more about the other two days of the conference, click here.

Plenary 1 – Medicines in health: shaping our future
Two of the National Medicines Program objectives which are important are:
·         Timely access to affordable medicines; and
·         Medicines need to meet appropriate standards of quality, safety and efficacy.
Three emerging issues are:
1)      Medications are moving closer to the patient because of access to patient’s personal knowledge and data and patient’s ability to self manage;
2)      Data and knowledge; and
3)      Complex systems.
Three challenges were given the most relevant of them was:
1)      How can we create a system that brings medications closer to a patient in a way that is safe and provides quality outcomes?

Health Landscape in 2025, Mark McCrindle  (McCrindle Research)
·         Speed and scale of change has been very fast;
·         Need to observe, respond to and shape the future;
·         Demographic with economic change and generational change means we as a country are growing faster than any other OECD country;
·         Record number of births in Australia at the moment;
·         60% of net overseas migration is to Australia;
·         People are contributing longer to the workforce and life expectancy is longer now compared to 1995;
·         There is a diversification of the Australian population born overseas;
·         Health expenditure as a percentage of Gross Domestic Product (GDP) is increasing; and
·         Total expenditure on public health has increased since 1995 but it is expected to decrease by 2025.
Other interesting statistics are:
·         742,000 medicines are dispensed each day in Australia;
·         342,000 people visit a GP each day in Australia; and
·         17,000 people visit an ED at a larger hospital each day in Australia.
If consumer preferences are likely to change and demands will change as well as a result and no doubt will increase.

From here to there – The Pathway to a Healthy Medicines Future:  Where do we start? Where does regulation fit? John Skerritt, National Manager (TGA Health and Safety Regulation)
·         There is a shift from the short term use of therapies (e.g. for infections) to now the management of chronic disease and conditions with medications;
·         Most people over 50 years of age have 3 co-morbidities;
·         Clinical trial evidence requirements for medicines registration have had to evolve because of the benefit/risk or tolerance to the medication differs for different populations and individuals; and
·         A question was posed whether – ‘off-label’ medicines prescribing were necessary because of the inability of regulatory approvals in keeping up with clinical trials and developments.

Melissa Fox, Co-ordinator, Health Consumers Queensland
Melissa spoke about the role of a health consumer and the potential impact of the proposed Federal 2014 Budget regarding the copayment fee for consumers visiting a GP and as Consumer Health Forum (CHF) stated the demolition of a universal health care system and consumers’ lack of understanding about the Pharmaceutical Benefits Scheme (PBS). Melissa also stated that:
·         Consumers needed to be empowered and this can be done through health literacy;
·         Information needs to be provided to better manage their health condition – i.e. does the person know what they are taking and what happens if medications are swapped;
·         Consumers need consistency of information’;
·         The health professional needs to give information with the scripts and in ways to meet people’s needs i.e. low literacy levels and cultural and linguistic diverse background (CALD).

Summary Day 1
Some of the speakers from Day 1 were asked to provide a short summary on the fiscal responsibility question ‘is the quality use of medicines an outdated notion or, is it more relevant than ever if cheaper better safety critical medications are being used?’
·         Staggering number of prescriptions never filled or filled for one course only or only taken for a few days is a staggering health cost of the hospital. It is also a constraint to quality health outcomes;
·         If people were to take their prescribed medications then there would be a lot less people in hospital;
·         Health system is broader than the long term economic environment however, it would benefit from better compliance;
·         Consumers’ expectations are to have a better health care system because of the taxes they pay;
·         People have to be helped before they get to hospital;
·         Need better outcomes for both individuals and the health care system;
·         How do medications fit into prevention as people live longer and medications prolong people’s lives; and
·         Patients must be seen as people and people do manage their own health agenda.

Pat Branford

HCCA Consumer Representative

NPS MedicineWise National Medicines Symposium 2014: Day 2

Pat Branford, HCCA Consumer Representative, attended the National Prescribing Service (NPS) MedicineWise National Medicines Symposium in late 2014 which was held over three days. The theme of the conference was ‘Medicines in Health: Shaping Our Future’.
Here is a summery on the second day. To read more about the other two days of the conference, click here.

Day 2 Plenary 2 – Sustainability
For these plenary sessions the theme was about exploring the future in terms of cost, benefit, access, quality and safety and investment in an increasingly competitive health environment with a focus on sustainability.

Sustainability and innovation – can we actually afford medicines – Professor Ian Frazer, CEO and Director of Research, Translational Research Institute
The main points discussed were:
·         Research priority is determined by a person’s interest and is not dictated by government interest;
·         The longer we live the less likely we are to be healthy and as we age we use the health system increasingly more;
·         As a community of connectedness (i.e. via social media/internet) you know what other healthy communities are receiving in terms of health care and you know that you are not getting it and you want it;
·         The need to meet consumer demand and treat non-infectious chronic conditions increases as we age;
·         Whether a person receives optimal health care is determined by a persons’ ability to pay i.e. it is determined by their income and it is not a right i.e. it is not a universal health care system; and
·         There is a stringent need for safety regarding medications however, the cost of new medications are past onto patients.

Cost and value: a consumer perspective – What rights do I have? What should I be able to expect? How are my expectations and values recognised? Durhane Wong – Rieger, President and CEO, the Institute for Optimizing Health Outcomes, Canada
Durhane saw the role of a consumer as being:Durhane saw the role of a consumer in relation to medications as being:

Appropriate access to medications:
·         An assessment of benefits, risks, range of patient trade-offs;
·         Medications need to be personalised – i.e. right medication, right patient, right time;
·         Regulatory uncertainty of medication balanced by post market surveillance.
Responsible access to medications:
·         Taking medications as prescribed;
·         Monitor for adverse effects; and
·         Feedback on real – world effectiveness.
Sustainable access to medications:
·         Affordable cost to patients (i.e. co-payment);
·         Pricing based on comparative value (two systems); and
·         Sufficient return on investment – so there is an incentive for innovation.
Irresponsible use of medications is unsustainable and costs over 9% of the health expenditure or $500B globally on irresponsible use of medications and there is approximately 54% non adherence to medication use.

Patient Self-Funding of High-Cost Medications – what are the ethical issues? Dr Jennie Louise, University of Adelaide
Arguments for self funding of high-cost medications are:
·         Respect for patients autonomy:
o   Patient is in the best position to determine the merits for themselves; and
o   Not giving patients information is paternalistic.
·         Patients should be given information that they would deem to be relevant or they would care to know about.
·         There were some reasons for caution given:
·         Patients may not be best placed to evaluate complex evidence regarding effectiveness of the medication;
·         (generalisations were made) that most patients are desperate and vulnerable;
·         (generalisations were made) that most patients are not in a position to objectively weigh information; and
·         Doctors may influence decisions even if they are not trying to.
There could/would be great variability in patient’s circumstances:
·         Disease and prognosis would differ between patients;
·         Treatment whilst evidence based, the likelihood of benefit, toxicity and side effects could well be different; and
·         A patient’s non-medical circumstances, goals and concerns would also need to be taken into account.
The unintended negative consequences for social and health systems are;
·         More pressure by patients, groups/public to fund no-cost effective medications
·         Undermining bargaining power of giants; and
·         Creating additional costs to the public system.
Monitoring for toxicity, treatment side effects, longer consultation times, administration of medication will drive up the costs.

Equity considerations
·         Particularly important for the public system;
·         Inequitable more affluent patients can access treatment not available to others in their home state; and
·         Rural customers can’t access treatment at all.

Other sources of inequity
·         Could lead to distortions in health care funding that further adds to inequity;  and
·         May have to pay for health care beyond basic health care.

·         Cost sharing by paying 50% of the medication;
·         ‘patient advocate’ make a more autonomous decision i.e. impartial third party.
·         Defensible presumption against self; and
·         HCCA could be a patient advocate but I was told that they would need skills to determine what patients want.

Chronic Conditions, financial burden and pharmaceutical pricing: insights from Australian Consumers Associate Professor Jennifer Whitty, School of Medicine, Griffith University; School of Pharmacy, The University of Queensland
·         Prescription medication (Pharmaceutical Benefit Scheme - PBS) spending was approximately A$10.1 Billion pa in 2011/12;
·         Consumers (patients) fund approximately 17%  - A$1.7 Billion pa;
·         Australians median (average) out of pocket prescription costs are $199 pa; and
·         Patients don’t fill prescriptions because of the cost.

Findings re Financial Burden – Aggravating Factors
·         dose, administration, aids, Webster packs all equal additional costs;
·         once cease employment medication costs too much money; and
·         lack of consistency between pharmacies and costs of medications.

·         reduced adherence to taking medications because of the cost;
·         stockpiling of medications by some patients;
·         cost displaces luxuries (example given was cigarettes); and
·         not working so patients can get a health care card and get medications cheaper.

Understanding and beliefs related to pharmaceutical pricing
·         relief of costs can be obtained by either and/or having a health care card and the safety net;
·         access to medications not on the PBS in chronic conditions is an extra cost; and
·         fairness is an issue as a patient you have paid your taxes and you are not to blame for your condition but you have to pay high costs for your medication.

·         Australian consumers with chronic conditions and carers perceive there is a financial burden associated with medication use; and
·         This financial cost is compounded by the ongoing need for medical care and medication.

Dementia and care transitions: actions to translate data and knowledge into practice – Professor Gabrielle Cooper, Discipline of Pharmacy, University of Canberra
·         It is illegal to do research on dementia care patients in the ACT.

Issue of Identity
·         Lack of timely and accurate information sharing between the range of providers (GP/hospital/pharmacy/RACF);
·         Lack of awareness by a range of clinical staff of a patients possible dementia diagnosis e.g. ED, X-Ray, orthopaedics, pharmacy, support staff;
·         Inconsistent use/type of medication supports e.g. dose, administration aids;
·         Limited access to appropriate trained support staff to assist or just assist in settling patients; and
·         Hospital pharmacies have different alignment of Webster care packs.

Other points
·         Need to settle patients – calm considered approach. Dementia training also required for pharmacy staff and meals person;
·         There are medication discrepancies between care settings which aren’t reconciled and recommendations aren’t being followed up on due to lack of documentation and communication strategies e.g. need transition medication charts;
·         Lack of after hour support for families and small facilities to avoid acute readmissions. Graduate nurses could go with a patient to a facility/hospital to help settle a patient in;
·         Best practice was centred on individual champions – GPPAD ACT.

Pat Branford

HCCA Consumer Representative