June 2016

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National Pain Week  25 - 31 July, 2016

The theme for 2016 National Pain Week is “You look good. How do you feel?”.  People living with pain are often told that they are looking good or don't look sick, when inside they are dealing with constant pain and other symptoms.

Led by Chronic Pain Australia (CPA), National Pain Week promotes four core aims:

1. To de-stigmatise the experience of chronic pain

2. Promote current thinking to explain chronic pain to the wider Australian community

3. Create healing relationships between the person in pain and their pain clinician/s

4. Reduce the isolation and suffering of people in pain.

CPA are conducting the third annual “Snapshot” survey to track how Australians are living with their pain and are publishing two 'Living with Pain' surveys - one for people who live with chronic pain and one for those who care for someone with pain.

If you live with chronic pain or care for someone with pain, be part of the campaign by taking part in one of the surveys below:

The results will be announced during National Pain Week so check-in to their website for survey results as well as a list of events happening to mark National Pain Week.
Personal and consumer stories
Grieving the Life I Once Had

In this personal post, Huffington Post blogger Naomi Sakin mourns the loss of her old life before occipital neuralgia and chronic pain.
Video Shows Sensory Overload From the Perspective of a Boy on the Autism Spectrum

Alexander Marshall features in a short video that shows what sensory overload can be like in an everyday situation such as going to the local shopping centre.
Growing up in care

Áine Kelly describes how she began to access healthcare again after humiliating childhood experiences.

I'll get to see my children grow up

Michelle Martin shares her story about how one random call to her eye doctor saved not only her vision, but also her life.
News and current affairs

Seven steps to better health for Australia

Australia needs a 21st century health system which makes the most of the huge potential we have to advance care for all Australians.  
“Health is a top issue in this federal election because most Australians are concerned about the future health care of themselves and their children,” the CEO of Consumers Health Forum, Leanne Wells, said in releasing CHF’s election platform.

It was be sent to the ALP, Australian Greens and Liberal/National Party seeking their responses to the commitments we call for. The Platform sets out the key commitments CHF seeks from all parties. The key determinants of the Platform’s content included input from some members, key themes emerging from the Special Policy Roundtable CHF hosted in late March in collaboration with the George Institute for Global Health as well as areas where we think there is greatest need for reform on which we have lobbied consistently in recent years. 
“The principle of universal access that Medicare is meant to underwrite is becoming frayed.  Many Australians already put off seeing the doctor or obtaining medicines because of cost.  That would increase under present measures”.
“It can be a struggle to obtain the right care in the community for a chronic disease or mental illness, or to get recommended elective surgery in a public hospital.  It should not be this way.  Australia has the health workforce and facilities to meet our needs but often our system fails to deliver to those most in need”.
The Consumers Health Forum’s seven policy targets to make the most of our health:
1. Primary health:  End Medicare freeze, invest more in primary health care, particularly Health Care Homes
2. Health insurance:  Develop simpler, standardised policies using PHI rebate as an incentive
3. Out of pocket costs:  No new co-payments; establish single safety net for Medicare and PBS.
4. Health system:  Reduce low value care, incentivise consumer-centred care, support health consumer organisations
5. Mental health:  Fund stronger, integrated health and community care
6. Oral health:  Include dental care in Medicare; commit to national oral health promotion
7. Preventive health:  Expand preventive health budget and introduce sugar tax.

Read full media release

Interesting read:
CHF scorecard - CHF has also put out a scorecard rating the parties' health policies ahead of this weekend's election.

Doctors still provide too many dying patients with needless treatment

In this article from The Conversation, Dr Magnolia Cardona-Morrell and Prof. Kenneth Hillman of UNSW report on some of disturbing findings that have come from their latest research into end-of-life care for elderly hospital patients.

Many doctors are continuing to provide end-of-life patients with needless treatments that only worsen the quality of their last days, new research shows.

Our review published in the International Journal for Quality in Health Care found that on average, one-third of patients near the end of their life received non-beneficial treatments in hospitals around the world.

Non-beneficial treatments are those unlikely to ensure survival beyond a few days that can also impair the quality of remaining life. They include putting a patient on a ventilator to help their breathing, tube-feeding, emergency surgical procedures, CPR on patients with not-for-resuscitation orders and blood transfusions or dialysis in the last few days of life.

Initiating chemotherapy or continuing radiotherapy in the last few weeks of life for patients with advanced irreversible disease was also common. Chemotherapy was initiated in 33% of cases and radiotherapy continuation in 7%.

We reviewed 38 studies conducted over the past two decades, covering 1.2 million patients, bereaved relatives, doctors and nurses in ten countries. We also found evidence of unnecessary imaging such as X-rays (25-37%) and blood tests (49%).

Many patients were treated for a number of other underlying conditions with oral or intravenous medicines that made little or no difference to their survival and were inconvenient and in some cases, harmful.

Read full article

Further reading:
UNSW Newsroom - Global Analysis Finds Unnecessary End of Life Treatment in Hospitals Widespread

What if patients decided how their nursing home would run?

Ageing in Community blogger Beth Baker describes how person-centred care is transforming life in care facilities.
Launch of SmartGenRx partnership

Earlier this month, The George Institute and BUPA Australia launch SmartGenRx, an innovative partnership to fight heart disease and stroke, and improve the health of up to one million at-risk Australians. ‪SmartGenRx‬ is working on a polypill that combines four daily medications into a single pill. Read more
The link between chronic pain and depression: which comes first?

The Conversation's Michael Vagg investigates: does pain make us depressed or does depression cause us pain?
Why we need to pay more attention to negative clinical trials

Sometimes, the most important steps in medical research are the ones we ignore. Adrian Pokorny explains.
Have your say
Help families like Kerry’s: end the palliative care shortage

Kerry lost her daughter Stephanie to an aggressive brain cancer when she was just 22 years old.

The palliative care doctors and nurses did everything possible to make Steph’s life comfortable and pain free. They bent over backwards to care for her but they quickly realised that there just weren’t enough of them.

Please join Kerry in taking the pledge online to call on the Minister for Health to fund 10 additional palliative care doctors, 129 palliative care nurses and culturally appropriate palliative care for Aboriginal people.


The Royal Australasian College of Physicians’ (RACP) - Ethics Committee

The Royal Australasian College of Physicians’ (RACP) is seeking consumer representation for their Ethics Committee. The RACP Board established the Ethics Committee to provide advice in areas that raise ethical considerations in the context of policy and advocacy, education, financial investments and research.

The Committee will provide for the Board’s approval a work plan setting out the proposed activities of the Committee which will address tasks that raise ethical considerations in the context of policy, advocacy, education financial investment and research. The Ethics Committee requires two consumer representatives to bring a consumer perspective to this work. 

The appointment is for a two year term. The work will consist of two full-day face to face meetings per year in Sydney at the RACP’s head office and approximately two to four teleconferences. It is expected that some out of session work may be required by Working Party members, this is estimated at approximately one hour per month. The RACP will cover sitting fees and travel costs.

Interested consumer representatives need to apply in writing to Louise Hardy, Policy and Advocacy Manager via louise.hardy@racp.edu.au. Please include a cover letter, a concise CV and a letter of endorsement from an appropriate health consumer network demonstrating that you are placed with the confidence of consumers and have in place a consultative base.

Expressions of interest close Friday 8 July, 2016.
Resources and events


Workshop: Community Organising and Health: Los Angeles, Seattle and Sydney

Join Sr. Maribeth Larkin, a tough nun from the South side of Los Angeles as she shares stories about how low income Hispanic and African American communities organised their communities for power and better healthcare.

We will also hear from a local HCNSW member, who has brought positive change to their community through creative partnership with other health consumers and community groups.

Sydney Alliance leaders will share how local organising fixed a perennial healthcare issue in the Inner West. An issue that had been talked about for over 20 years, but using an organising approach fixed the issue in 18 months by bringing diverse organisations together and everyday people using their citizen power.

After these stories, you are invited to be part of a conversation about how community organising could change the power relationship in the NSW healthcare system for consumers by building relational power, organising with new allies and taking action for the common good.

When: Monday 18 July, 2016
Where: Level 1, 280 Pitt Street, Sydney
Cost: FREE

Register at www.hcnsw.org.au/sydallianceworkshop or call 02 9986 1082.

It’s inevitable we are all going to die so why don’t we talk about it? Join the Conversation
CareSearch, a palliative care website, are running a ‘Massive Open Online Course’ (MOOC) on death, dying and palliative care in Australia called Dying2Learn. MOOCs are free and accessible short, web-based courses. The CareSearch MOOC will provide an opportunity for any Australian to openly and supportively discuss, learn, and contribute to discussions on issues around death and dying.
The MOOC will be conducted through the online learning platform OpenLearning, a company based in Australia that offers a social online learning platform that delivers over 1,500 MOOCs worldwide. The MOOC is scheduled for release on Monday 27 June, 2016 and is open for five weeks covering four (4) modules. Topics include:
  1. How does today's society engage with death and dying? How do we use language to describe it?
  2. What does death 'look' like? How is death and dying portrayed in the media?
  3. If death is the problem, is medicine the answer? A look at what we die of, the role of medicine, and prolonging life versus prolonging death.
  4. Digital dying: Death during the internet-age.
Registrations close Monday 4 July, 2016. For more information and to register, visit: www.caresearch.com.au/Dying2Learn.
Updating medicine ingredient names

In different countries, different names are used to describe the same medicinal ingredient.

Over the years, some medicine ingredient names in Australia have become out of date. This can be confusing for Australian consumers and healthcare professionals who travel internationally, as well as people like doctors who have trained overseas or people trying to access medicine information online.

Therapeutic Goods Administration (TGA) is updating some medicine ingredient names used in Australia to align with names used internationally. This has been done by a number of other countries over the years, including the United Kingdom in 2003 and New Zealand in 2008.

Not all medicine ingredient names are changing. View the list of affected ingredients.

For more information, visit the TGA website.

Australasian Haemochromatosis Conference
Haemochromatosis Australia is proud to announce the 2nd Australasian Biennial Haemochromatosis Conference will be held at the QIMR Berghofer Institute, Brisbane on Saturday 6 and Sunday 7 August, 2016.

The general stream will be of interest to people living with the condition, as well as some health professionals.

The Conference will include everything consumers want to know about haemochromatosis but were afraid to ask! What about diet? Arthritis? Sexual dysfunction? What happens with my blood test samples? Why don’t GPs detect it more often? What’s happening in haemochromatosis research?

Come and join others with iron overload disorder, researchers, doctors and health professionals for two days of discovery, friendship and discussion.

Early-bird booking (on or before 2 July) = $275
Full rate (after 2 July) = $325


For full event information, visit the Haemochromatosis website.


Sydney International Update on Advances in Perinatal Care
Thursday 4 - Saturday 6 August, 2016
This highly interactive conference will bring together neonatal, obstetric, midwifery, maternal-fetal medicine, paediatric and gynaecology specialists, scientists, parents and others to learn from global leaders and each other about key advances or knowledge gaps in perinatal practice.

Become a champion of perinatal care! Enjoy 3 days of education, cordial exchange, evidence-based debate and excellent cuisine in the inspirational setting of the Novotel, Sydney Olympic Park.

Download the full program

Registration Fees:
Nurses, Midwives, Allied Health & Students: $180 per day or $499 for 3 days*
Medical Staff: $220 per day or $599 for 3 days*
Other Non Medical Staff: $180 per day or $499 for 3 days

*Registration, expenses and travel are 50% tax deductible for those not supported by their institution.



The Asia Pacific (APAC) Forum
Monday 12 - Wednesday 14 September, 2016
Hilton Sydney, 488 George Street Sydney

The APAC Forum has quickly become one of the largest health improvement conferences in the world, and it’s hailed as the best. In 2016 it will convene in Sydney and is set to attract the biggest delegation of change-makers APAC Forum and Australia has ever seen.

Providing a unique platform to improve the health and wellbeing of our population, APAC Forum unites global thought leaders, frontline teams, colleagues and contemporaries to:
  • inspire every person working in health
  • stimulate cross-sectorial and multi-disciplinary dialogue
  • nurture knowledge transfer
  • design and share best practice
  • enable each and every delegate to become a catalyst for change.
The 2016 APAC Forum is particularly relevant to consumers, consumer advocates, consumer advisers, and any health professionals working on co-design initiatives. Discounted consumer registration is being offered to ensure that the consumer voice is heard at this conference.
At APAC Forum 2016 consumers will:
  • hear from world-renowned experts as well as many of the best speakers Australia has to offer
  • unite with colleagues and contemporaries to share experiences, challenges and inspiration
  • share best practice to enable each and every one of us to become a catalyst for change
  • network and gain the connections required to support you in making a real difference to your patients and community.
Consumer concession rate for general conference is $660 inc GST.

Further information is available at: www.koawatea.co.nz/apac-forum.
MORE about National Pain Week...

National Pain Week Annual Conference
The major Chronic Pain Australia event during National Pain Week is the Annual Conference which will be held on Friday 29 July, 2016 at Westmead Hospital.

Attendees include both clinicians working with people living with chronic pain and people who are directly affected by the condition.

There are three themes woven into the conference program:
1. Wellbeing and living with chronic pain
2. Arts in health
3. Technology and chronic pain

The Conference will be held at the Lowenthal Auditorium - Westmead Hospital, cnr Hawkesbury & Darcy Roads, Westmead. Registration fee = $20.00.


Behind the scenes at Hack4Pain

In this short video, president of Chronic Pain Australia Dr Coralie Wales takes us behind the scenes of Hack4Pain, the world's first digital Hackathon for Chronic Pain. We hear from contributors such as consumers and developers about their experience in co-designing innovative tools to help people suffering with Chronic Pain.

Investing in our Future: Improving the Health of People and Communities

The International Foundation of Integrated Care (IFIC), in partnership with General Practice New Zealand (GPNZ), Health Quality and Safety Commission (HCQSC) and the NZ Ministry of Health presents the 4th World Congress on Integrated Care “Investing in our Future: Improving the Health of People and Communities” to take place in Wellington, New Zealand on Wednesday 23 - Friday 25 November, 2016.

The aim of this conference is to exchange knowledge, experience and new ideas in the design and delivery of integrated health and social care.

Abstract submissions relating to the following congress themes will be accepted up until Monday 1 July on the following themes:
Theme 1. Promoting the health of children and families
Theme 2. Engaging and empowering people and communities
Theme 3. Re-orienting the model of care
Theme 4. Taking measures to improve quality
Theme 5. Funding and incentives that promote health outcomes

Abstracts of good practice, projects, development of policy, research, concepts and theory, lost and found and network/thematic discussions or workshops are welcome! All accepted abstracts will be published in the International Journal of Integrated Care (Impact Factor 1.500) and will appear in the programme as deemed appropriate by the scientific committee.

Find out more about the event, abstract submission process and how to register your attendance to this event, please visit the website

Registration is $1,119 + GST
HCNSW has secured a special discount for members to attend this event. Enter the code KNOWLEDGE upon registration to receive a 10% discount. 

Get certified in Consumer Engagement - course returns by popular demand!

Due to the overwhelming response to our Graduate Certificate in Consumer and Community Engagement course, we are now accepting expressions of interest for a second course to be held later in the year.

This accredited program is designed for people with responsibility for consumer and community engagement. It is relevant for staff in government, private and NGO health services, as well as health consumer and community organisations, including: consumer and engagement staff, quality managers, health service education officers, complaints managers, clinical staff and experienced consumer representatives.

The upcoming course will run over four (4) days on 8-9 September (Thursday-Friday) and 22-23 September (Thursday-Friday), here in our CBD offices.

Please visit the training section of our website for full course information. Enrol now!
I want paper

Would you prefer to receive The Wrap as a printed hard-copy via post? Or do you know someone who would like to read it but doesn't have email?

If so, please write to us - info@hcnsw.org.au or HCNSW, Suite 3 / Level 8, 280 Pitt Street, Sydney NSW 2000 - and we will send you a printed version of The Wrap going forward. 

Did you know you can book us for training that meets your needs?

Health Consumers NSW runs individualised training courses for health services interested in supporting their consumer representatives to be the best they can be. The training is also useful for staff to understand how to engage the community and consumer representatives and fulfill Standard 2 obligations. 

There are two-day comprehensive programs or one-day short courses available, both of which can be tailored for your organisation depending on your needs. 

Contact us on 02 9986 1082 or info@hcnsw.org.au to make a booking or enquiry.
Research and academics

Latest edition of BHI Hospital Quarterly

Download the January to March issue of the Bureau of Health Information's (BHI) Hospital Quarterly: Performance of NSW Public Hospitals.

The Hospital Quarterly is series of regular reports that tracks the services provided in NSW public hospitals and the timeliness with which they are delivered. 

Find out how your local hospital is performing by reading the individual profiles of more than 80 public hospitals in NSW.

 Additional comparative information at a local health district, hospital peer group and individual hospital level is also available in the BHI interactive portal Healthcare Observer.

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