November 2015

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 Patient Solidarity Day - Saturday 5 December 2015

Patient Solidarity Day (PSD) is a day when people from around the world stand together and raise awareness for patients. 

Patient Solidarity Day was set up by members of the International Alliance of Patients' Organizations (IAPO) - the only global alliance representing patients of all nationalities, across all disease areas and promoting patient-centred healthcare worldwide. In 2014, PSD became a global event for the first time where 80 organisations from 32 countries took part. 

The theme for this year is: Healthcare is a human right. We should all have access to the healthcare we need: good quality, affordable care without fear of discrimination. This is our human right. 

Join IAPO in celebrating this year and help make the event bigger and better! There are plenty of ways, big and small, that you or your organisation can become involved. Visit the IAPO website for more information and to find out how.

Personal and consumer stories
Definition of the engaged patient

In this guest post on, Mary Beth Scheoning describes how engaged patients see themselves as the CEO of their own health, and views their care team as advisors.  Mary Beth goes on to illustrate some skills a typical "CEO" would implement to manage their own health and engage with their "team".
I am not a quitter, I never have been

For Jacquie, a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe this past September and has been sharing her positive, never-back-down attitude with the rest of the community.
Dear Young Doctor

This blog post by Ken Farbstein paints a pretty picture of what patient-centred dentistry looks like. He also portrays the eye-sore this same picture becomes when his dentist retires and is replaced.
Taking complaints seriously

Doctors may dismiss dissatisfied patients as troublemakers, because complaints are so rare. Hence, Jane Feinmann stresses the importance of building the confidence to speak up and seek help in managing examples of unsafe care. 
News and current affairs

Can Medicare sustain the health of our ageing population?
With six reviews of the health system currently underway, health minister Sussan Ley is investigating ways to create a “sustainable” Medicare and a stronger health system. One of the main concerns is that our ageing population is putting too much of a strain on the health system.

Like other OECD countries, Australia’s population is ageing due to lower fertility rates and increased life expectancy. The proportion of Australians aged 65 years and over increased from 12.4% in June 2000 to 14.7% in June 2014 (an 18% proportional increase), and the Australian Bureau of Statistics expects it to reach 18.6% by 2030.

The University of Sydney decided to investigate these concerns using data from the Bettering the Evaluation and Care of Health (BEACH) program – Australia’s longest running study of general practice activity.

They found that older Australians use far more primary care health resources and the proportion they are using is increasing over time. However, having these patients managed in general practice lowers overall health care costs by reducing expensive specialist and hospital visits.

Read more

How cancer doctors use personalised medicine to target variations unique to each tumour

The Children’s Cancer Institute in Sydney recently launched an ambitious program. From early next year, scientists will analyse the unique cancer cells of 12 children diagnosed with the most aggressive forms of the disease to find the best treatment for each child.

By 2020, they aim to have these individualised treatment options available to all children diagnosed with cancers that have a less than 30% survival rate. This way of tailoring treatment to each person is known as personalised medicine, and advances in DNA sequencing have paved the way for a new era in cancer management.

Cancer is fundamentally a disease of altered genomics – genetic material making up the structure of cells. Because these alterations are different in each person, every tumour is programmed differently with genes made up of varying sequences of DNA.

This is why not everyone will respond the same way to a given treatment. Determining the DNA sequence that makes up the genome of each tumour (genomic sequencing) helps doctors understand how the tumour may be effectively targeted.

Read full article

National Diabetes Strategy launched

The Australian Government has developed a new National Diabetes Strategy, to update and prioritise the national response to diabetes across all levels of government. To coincide with World Diabetes Day, Health Minister Sussan Ley said the Australian National Diabetes Strategy was a blueprint for improving the prevention, care and management of diabetes to the end of the decade.

“Diabetes related complications including heart attack, stroke, amputation, blindness, kidney failure, depression and nerve disease but in many cases the disease is preventable.

“For this reason the emphasis of the strategy is on prevention, early diagnosis, intervention, management and treatment, centred on the role of primary care.” Read more.

New York - Where the Big Apple really is becoming the healthy choice

“Do you want a baked potato with that?” might become the catchcry of a certain well-known fast food chain if the New York City Council passes a Bill proposed by one of its members to promote better childhood nutrition. What implications does this have for public health policy development?
Can industry, governments and public health advocates work together to promote healthier lifestyles? These questions and more are discussed in this latest installment of Journal Watch from Dr Melissa Stoneham.

Planning a patient-centred event

An interesting take on event planning by Kidney Health Initiative in the US where the audience was consulted prior to the event taking place. Imagine the value for both patrons and organisers when the prospective attendees are educated on the topic of interest and what the event wanted to do via a webinar before attending the event. The patient is better equipped to draw on their experiences and provide valuable input. It’s little steps like this from the get go that can make a big difference to consumer-related events. Read more.

Cancer Voices NSW - celebrations all round

2015 marks a big year for Cancer Voices NSW, the independent volunteer voice of people affected by cancer in our state. Not only is it celebrating 21 years of cancer consumer advocacy in Australia, it also prides itself in its first decade of the Consumer Involvement in Research (CIR) program - a ground-breaking initiative that saw the involvement of consumers in selecting research questions, designing studies and making funding decisions that made research efforts far more effective.

November also marks one year since the launch of the Australian Cancer Consumer Network (ACCN), whose purpose is to share information and ideas, alert member organisations about opportunities to participate in national cancer related forums and activities – and most of all to be able to muster an even louder voice on national issues if and when necessary.

For more information, or contact details for cancer consumer organisations or representatives, generic or specific, visit the CancerVoices NSW website.
Have your say

Private Health Insurance Consultations 2015-16

The Australian Government is undertaking a number of reviews aimed at ensuring that consumers can access affordable, quality and timely health services into the future.Private health insurance has important links to these reviews.

As such, on 28 October 2015 the Minister for Health, the Hon Sussan Ley MP, announced consultations focused on the value of private health insurance for consumers and its long term sustainability. The potential benefit to consumers is the key consideration of these consultations.

An online survey for consumers will ensure they have the opportunity to share their views on private health insurance. The online survey will be open until Friday 4 December, 2015.The Department of Health will also conduct a series of targeted industry roundtables to identify opportunities to amend unnecessary or inefficient regulation which add costs for consumers; and identify reform options which would enhance the value of private health insurance for consumers.

Further details of the consultation process and a link to the survey are available from the Department of Health website.
Health and the Arts - Stakeholder Engagement Workshops

The NSW Minister for Health has established a Taskforce on Health and the Arts to guide the development of a framework aimed at integrating the arts across the whole of the NSW public health system.
The Taskforce will run a series of consultation workshops to encourage dialogue, participation and seek views on the integration of health and the Arts. The Taskforce is seeking the input of health, medical and arts professionals, key organisations, patients, clients, carers, artists and the broader community from urban, rural and remote areas of the state.

Three workshops have been scheduled between now and February 2016 and you are invited to come along to have your input to the development of the framework.
If you would like to attend a workshop, please register for one of the following:
  • Monday 30 November 2015 at the Eternity Playhouse, Darlinghurst, Sydney – click here to register
  • Wednesday 9 December 2015 at the Casula Powerhouse Art Centre, Casula, Sydney – click here to register
  • Wednesday 3 February 2016 at Orange Hospital, Orange, NSW – clickhere to register.   
If you cannot attend a workshop but would like to have your say, please write to: Alternatively, HCNSW Executive Director, Anthony Brown, will be attending this event in Casula on Wednesday 9 December. Please contact feel free to contact Anthony on 02 9986 1082 and he would be happy to pass on your thoughts.
Further information on the Taskforce and its Terms of Reference is available on the NSW Health website. Should you have any queries about the workshops, please contact the Taskforce Secretariat on 02 9391 9915.
Resources and events
World Aids Day, held on 1 December each year, raises awareness across the world and in the community about the issues surrounding HIV and AIDS. It is a day for people to show their support for people living with HIV and to commemorate people who have died.

The global World AIDS Day theme for this year continues on from last year’s theme: Getting to Zero: Zero new HIV infections. Zero discrimination. Zero AIDS related deaths.

Show your support for people living with HIV by wearing a red ribbon, the international symbol of HIV awareness and support.

There's also several events taking place across NSW this week including Bobby Goldsmith Foundations Charity Film Screenings.
Harry and SuperYam

There’s a new superhero in town and he’s all about healthy eating and living! Get ready to meet SuperYam™  – a superhero like no other.

SuperYam™ is one super cool dude whose mission is to fight childhood obesity in a fun and non-threatening way. Inspiring children to think about food choices, teaching them about where real food comes from and how food impacts on our health are some of the lessons SuperYam™ can share through his adventures.

A brilliant Christmas gift idea or stocking filler for the little health consumers in your lives.


Help smokers from multicultural backgrounds stop smoking

This workshop is for anyone who sees clients from culturally and linguistically diverse backgrounds (CALD) e.g. community workers, bilingual community educators, health workers, community leaders and community members. Presented by Tracey Greenberg, NSW Ministry of Health Tobacco Cessation Trainer, this training will introduce participants to:
  • prevalence of smoking in people from CALD backgrounds
  • nicotine dependence and withdrawal
  • treatment options and medications
  • relapse prevention
  • brief intervention model
  • ways to support your community to give up smoking.
When: Wednesday 9 December, 9.00am - 2.30pm
Where: Claffy Lecture Theatre, Centre Block
Sydney Eye Hospital, 8 Macquarie Street, Sydney
Cost: Free. Lunch provided.

RSVP by Wednesday 2 December to:

Nicole Stevens, Project Officer
NSW Multicultural Health Communication Service
02 8753 5047 or
Please advise of any dietary or other requirements.
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 - 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. Contact us on 02 9986 1082 or to make a booking.
Research and academics
General Practice Activity in Australia

Earlier this month the University of Sydney published the 2014-15 report on General Practice Activity in Australia. This report is produced by the Bettering the Evaluation and Care of Health (BEACH) program – Australia’s longest running study of general practice activity. The BEACH study provides the only data available in Australia that gives a comprehensive picture of what goes on in general practice, essential is this era of ‘evidence-based policy making’.

BHI releases latest edition of Hospital Quarterly

The Bureau of Health Information (BHI) has released the July to September issue of Hospital Quarterly: Performance of NSW Public Hospitals.

This report examines patient activity, elective surgery and emergency department performance for this specific quarter.

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

A snaphot from our twittersphere...
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