October 2016

Think about your lungs this Lung Health Awareness Month

November is Lung Health Awareness Month. The Lung Foundation Australia is encouraging all Australians to take their lung health seriously and to recognise symptoms early in both themselves, and loved ones.

There are a number of activities happening in NSW and around the country so get involved and check your lungs.

Free lung testing at Sydney’s Martin Place on Thursday 3 November from 7:30am to 2:30pm.
World COPD Day on 16 November. Check the site for events near you. They include walks, info stands, free lung function screening and other pharmacy activities. Every event registered gets a free promo pack.
Shine a Light on Lung Cancer awareness events, 1-30 November. Events include BBQs, walks or morning tea gatherings. Visit the site for information or to register.
Patient stories. Share these poignant personal stories of people who live and manage lung disease on a daily basis. There is no stereotypical face of lung disease in Australia; lung disease can affect anyone.

If you happen to be in Melbourne there is also a 'Love Your Lungs Fun Run and Walk' with the Collingwood Football Club and Sunsense on Sunday 27 November. Sign up with family and friends to take part.

Finally, you can take the Lung Health Checklist at www.lungfoundation.com.au. It only takes a few minutes, and the simple questions will help you to recognise symptoms of lung disease and the need to act promptly.

For resources and information visit the Lung Foundation's website or phone their free call Information and Support Centre on 1800 654 301.

Personal and consumer stories

How one family maintained hope and strength through cancer

Children often know intuitively when their parents are sick or unwell. Theresa Clementi remembers how her mother's cancer diagnosis threw her family into turmoil. But by talking about it and involving the children, the family grew ultimately stronger.

"Talking through my concerns helped me process what was going on and actually helped her cope, too. My best advice to another child whose parent has cancer is to talk it out and share how you are feeling."

Changing the face of lung cancer: Lillian's story

My name is Lillian, I am 35 years old, married to my husband Peter and we are lucky to have a beautiful three year old daughter Jessica.

I am a social justice lawyer and was diagnosed with lung cancer in October 2014 just two days after my 34th birthday.

When I tell someone that I have lung cancer, the first response is rarely a sympathetic “I’m sorry to hear”. The first thing most people say is “but did you smoke?” Does it matter?

What I wish I knew when I was a new consumer rep

Becoming a consumer rep is a powerful way to share your experiences and knowledge and affect decision making at the highest level. But starting out can be daunting.

To help you begin your journey, the Consumer Health Forum (CHF) has asked some of their current reps what they wish they knew when they first started out.

News and current affairs

photo credit: faezrasyad

Heart disease rate in women shows need for action

A new report revealing the high heart disease risk which many Australian women don’t realise they face highlights the need for community awareness to counter potential triggers like obesity, the Consumers Health Forum says.

The Hidden Hearts report released by the Mary MacKillop Institute for Health Research in October, reveals a stark contrast between women’s perception and the reality in regards to women’s risk of cardiovascular disease.

“Most Australian women, and men, are under the false impression that heart disease and stroke are largely confined to middle-aged men this report finds,” says the CEO of the Consumers Health Forum, Leanne Wells.

“Many women are more concerned about breast cancer. Yet heart disease is four times more likely to claim their lives than breast cancer.

“While we should not under-state the dangers of cancers, including lung cancer for women and men, we need to take more action to measure the impact of cardiovascular disease on women and act to counter the unhealthy life-styles that fuel chronic conditions like obesity.

“We need to see our governments take a more active role in leading community awareness and responses to reduce cardiovascular disease which affects hundreds of thousands of Australian women, causing about 3,400 sudden deaths a years. That and the $3 billion yearly cost in hospital care should convince governments of the need for action,” Ms Wells said.

Drop the jargon

Tuesday, 25 October was 'Pledge to DROP THE JARGON in health & wellbeing' day.

Drop the Jargon is a day for professionals in Australian health, community services and local government to use plain language.

Six out of 10 people in Australia have low health literacy.

This means that the majority of people in Australia have difficulty accessing, understanding and using health information as well as difficulty navigating the health system.

Using jargon, technical terms and acronyms contributes to low health literacy.

By dropping the jargon, you are helping individuals understand and use information to make informed decisions and actions affecting their health and wellbeing.

Please visit Drop the Jargon and make the below pledge (you can still do this). This will help all Australians to make informed decisions about their health.

In taking the pledge, you are accepting the challenge to:

Use plain language in all communication – with other staff and with clients
Not use acronyms
Explain medical and other technical terminology
Check that information has been understood by your clients
Work with a professional interpreter when your clients have low English proficiency
Politely point out when your colleagues use jargon

@NHS Twitter account gives patients the chance to tell their stories

An idea from the UK: Their National Health Service (NHS) official Twitter account, @NHS, has launched to lift the lid on the NHS through the voices of the people on its frontline.

A UK first, @NHS will see a different NHS patient or member of its 1.3 million staff become curator each week over a three month pilot and report first hand their experiences of the health service.

Jane Cummings, Chief Nursing Officer for England, said: “This is a fantastic opportunity for our much valued patients and NHS staff to hold a magnifying glass up to the system, so we can learn from their experiences, as we continue with our ambition to improve the way that care is delivered.”

Could this be an idea for @NSWHealth?

Action for more palliative care doctors and nurses

"Please end the shortage of palliative care by funding 10 additional specialist palliative doctors, 129 palliative care nurses, and culturally appropriate palliative care for Aboriginal people."

This is the pledge the 'I care for palliative care' campaign, run by the Cancer Council NSW and CanAct, asks you to sign.

The campaign aims to put pressure on the NSW Health Minister to ensure that every person with a life-limiting illness who needs specialist palliative care has access to it, when they need it, wherever they live in NSW.

Currently, many patients are unable to access the specialist palliative care that they need. NSW has fewer than the recommended number of palliative physicians, and we have a lower ratio of palliative nurses relative to most other states. Also, Aboriginal people don’t have specialist palliative care services that fit with their culture and beliefs.

Sign the pledge
More campaign information

Patient involvement in medical education: 'educating-in' patient centredness

The International Alliance of Patients' Organizations ran a workshop titled, “How can I help you to take care of me?” in October. It looked at the contributions and responsibilities of patients in the field of medical education.

This article lists examples how patient organisations can involve themselves in curriculum development and delivery, student assessment, quality assurance and governance issues.

Individual patients can contribute through the ‘patient voice and story’, teach clinical and communications skills, and co-teach with members of faculties.by ‘educating-in’ the knowledge, skills, attitudes, values and beliefs needed in the physicians of the future. Read full article

Applications open for the NSW Medical Device Commercialisation Training Program

NSW Health today announced Sydney-based technology incubator, ATP Innovations, will deliver the Medical Device Commercialisation Training Program (MDCTP) after it won a competitive tender.

The program develops the commercialisation and business skills of innovators of novel medical devices, to keep research talent in NSW and ultimately deliver better health and economic outcomes. Now in its third year, the MDCTP will be delivered for the next four years by ATP Innovations, in partnership with the Office for Health and Medical Research (OHMR).

Key dates
Applications close – 28 November, 2016
Shortlist interviews – week of 5 December, 2016
CORE course starts – 1 February, 2017
CORE course finishes – 17 April, 2017
Showcase event – May 2017

For information about course eligibility and content, please visit the ATP Innovations’ website.

One more program information sessions will be held on 14 November at ATP Innovations. For more details and to apply please go to: http://atp-innovations.com.au/mdctp

How the net connects rural Australians with mental health support

How do you reach people in rural and regional areas who are dealing with mental illness when there aren't any professionals in their town?

ABC's Michael Collett describes some of the ways technology can help overcome this challenge — and some of the ways regional Australians are still missing out.

Read article

Step in the right direction on private health costs

The Consumers Health Forum (CHF) have a representative on the Private Health Ministerial Advisory Committee. They say the October announcement of cuts to the costs of some medical devices is a welcome first step towards containing costs of private health insurance.

“Consumers consistently tell us that they think that private health insurance as it currently operates is poor value, with high premiums and in many cases high out of pocket expenses. Many are voting with their feet and leaving or downgrading their cover. It is welcome that the Government has recognised this and initiated a reform agenda to make private health insurance affordable and better value for individuals and to deliver better outcomes for the health system as a whole.” says Leanne Wells, CEO of Consumers Health Forum.

Read full media release

Have your say

Wanted: Consumer Representative for Community Health Advisory Committee

The Bureau of Health Information (BHI) is looking for a Consumer Representative to join their Community Health Advisory Committee (CHAC). BHI is developing a survey to collect the experiences of patients who are using community health services in NSW.

BHI is establishing an advisory committee to allow for experts in this field to guide the content of the questionnaire and how it is delivered to patients – the CHAC is being formed to provide this advice. The committee will be responsible for providing context about services, to recommend questions to be included in the survey and who the survey will include.

The Consumer Representative needs to have experience in services provided by community health although it doesn't necessarily matter which service. For example, it could be aged care or rehabilitation services delivered to a patient's home or through a clinic in the community. BHI is looking for consumer representatives who have an interest in the integration of many services for their care.

The committee will meet four times in the next six months with the first meeting in early December 2016.

If you are interested in this opportunity, please contact Jason Boyd, Director, Surveys at BHI; Phone Number: 94644469; Mobile Number: 0408295620; Email Address: jason.boyd@health.nsw.gov.au

More information about this opportunity

Opportunities to become a Consumer Representative in Western Sydney

Current opportunities to get involved:

Westmead Hospital Redevelopment Program
Blacktown Hospital Redevelopment
Co-design initiatives
Governance committees
Specific services – cancer, diabetes and others
Hospital based committees and working parties
Consumer Council

Why become involved?

To design health services together.
To check that they are working well.
To identify issues that health services might not know about.
To make services easier to access and safer.
To make sure the patient is at the centre of all health services.
To learn more about which health services could help them or their communities.
To improve the paper work used in hospitals.

Western Sydney Local Health District's (WSLHD) consumer representatives are community members who want to get involved in health system reform. They give their time to work together with health service staff. All WSLHD consumer representatives are offered training through Health Consumers NSW.

If you wish to discuss getting involved you can contact the Manager for Community and Consumer Engagement, Dr Coralie Wales on (02) 8838 6378 or 0418 186 829. You can also express your interest in any of the above opportunities online.

Northern Sydney mental health survey

Sydney North Primary Health Network (PHN) invites you to tell them about your experience or thoughts about primary mental health care services in the region. Please take their survey to provide your feedback. The PHN is working to improve their primary mental health services. Their mental health priority areas are:

Aboriginal Mental Health
Child and Youth Mental Health Services
Psychological Services for Underserviced, At Risk and Hard to Reach Groups (currently provided by Access to Allied Psychological Services Program), including:
- Psychological Services for Perinatal Depression
- Psychological Services for Culturally and Linguistically Diverse groups
Suicide Prevention Services

This is your opportunity to tell them what you think is working well, what is not working well and potential solutions to improve primary mental healthcare services.

Take the survey

A survey seeking to understanding people living with dementia and their carers

Advance Care Planning Australia wants to better understand the experiences of people living with dementia, and people who care for people living with dementia, to help plan for future care.

There is limited research about how to support people living with dementia to communicate their preferences for their future health care. Advance Care Planning Australia need help filling in their survey. Responses from the survey will help understand needs and provide support and resources.

They would especially like to hear from you if:

you are living with dementia, in the community
you provide care, or have provided care within the past 12 months, for someone living at home who is living with dementia.

The research is being conducted by Advance Care Planning Australia and is supported by Alzheimer’s Australia. Responses will be confidential and you will not be identifiable from the research results.

If you would like more information about this project call Advance Care Planning Australia on (03) 9496 5660.

Take the survey

Resources and events

Our 2015/16 Annual Report now available

It has been a successful and exciting year for us. After our Annual General Meeting on Friday 21 October, we now have published our 2016 Annual Report. If you want to know what we have worked on during the last year, download it right now or contact us for a hard copy.

Download the Annual Report

New HCNSW brochures now available

Help us spread the word about us! We have developed a new small, one-page brochure about who we are and what we do.

If you think your patients, friends, carers and partner organisations should know about us (and become a member - it's free) and you have room to display our brochure, please contact us. We will send you a couple of copies to spread among your affiliates.

Fabulous health literacy infographics

The Australian Commission on Safety and Quality in Healthcare (ACSQH) has published eight different health literacy infographics that fabulously depict the situation in Australia. They include:

health literacy for clinicians
health literacy for consumers
health literacy for executives and managers
health literacy in Australia
What is health literacy - two components
What is health literacy
Why is health literacy important - increases risks
Why is health literacy important

You can download them all here.

2016 Boyer Lecture
Fair Australia: Social Justice and the Health Gap

Worth a listen in case you missed it - The 2016 Boyer Lecture Series titled Fair Australia: Social Justice and the Health Gap, was delivered by Professor Sir Michael Marmot, President of the World Medical Association, Director of the Institute of Health Equity and a leading researcher on health inequality issues for more than three decades.

The lectures explored challenges faced by communities in solving issues around health inequality.

Download the lectures

REGISTER NOW for our upcoming training courses!

HCNSW's two-day consumer representative training program introduces the concepts and practises of consumer engagement in the NSW health system and is facilitated by two experienced leaders. It is suited to health consumer representatives engaged with Local Health Districts, Primary Health Networks, or Public or Private Hospitals and health related NGOs.

We have confirmed more training dates for 2017

Thursdays 16 & 23 February
Saturdays 20 & 27 May
Tuesdays 22 & 29 August
Mondays 13 & 20 November

The two-day program is $500 + GST per person.

For full information and to register, please visit our t raining page .

Bright Spots Across the Bush – Lessons in Integrated Care

The Agency for Clinical Innovation's (ACI) Chronic Care Network and Western NSW Local Health District (WNSWLHD) invite you to a showcase of Integrated Care in Western NSW.

When: Friday 17 February 2017, 9:00am - 4:00pm
Where: Lecture Theatre 422
Charles Sturt University, Dubbo Campus
8 Tony McGrane Place Dubbo NSW 2830

The livestreamed event will provide an opportunity to see the work being undertaken in Western NSW, collaborate with other key stakeholders and learn about the how the ACI can assist with your work.

Who should attend?
Clinicians, managers, consumers and carers receiving services or involved in the delivery of care to people living with chronic conditions.

Attendance at the forum is free.

Contact: Jenny Caspersonn, Manager ACI Chronic Care Network, (02) 9464 4682 (A detailed program will follow closer to the event. A registration link will be provided with the completed program.)

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 customised training?

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

Being overweight but active won’t prevent the risk of type 2 diabetes

The 45 and Up Study is the biggest cohort study ever undertaken in Australia. The study has gathered demographic, health and lifestyle information from 266,000 individuals, aged 45 and over, across NSW.

This year’s 45 and Up Study Collaborators’ meeting attracted widespread media coverage, with news outlets including The Guardian, Huffington Post, SBS News and Nine TV News and news.com.au reporting on findings that being overweight but active won’t prevent the risk of type 2 diabetes.

Another presentation on the cost of treating lifestyle-related illnesses was covered by the ABC Radio World Today program, while ABC News 24 interviewed Study Scientific Director Professor Emily Banks about the impact of the 45 and Up Study.

Read more about this years media coverage of the findings.

Stakeholder priorities for research in health communication and participation

In March 2015, Cochrane Consumers and Communication started a wide-ranging consultation process. They wanted to choose five new topics for their Cochrane Reviews.

The following Cochrane Review topics were selected for their first round of priority topics:
Improving communication about end of life care
Patient and family involvement in patient safety
Improving future doctors’ communication skills
Consumer engagement strategies
Promoting patient-centred care

Read more about the reviews and download the final research priority setting report

A snaphot from our twittersphere...

Health Consumers NSW ‏@HCNSW Oct 26

This survey is for people living with dementia, and people who care for them to better plan future care. http://advancecareplanning.org.au/advance-care-planning/for-everyone/let-us-know-what-you-think/ …

Health Consumers NSW ‏@HCNSW Oct 25

Today is #dropthejargon day! Please use #plainlanguage when communicating #healthliteracy Take the pledge http://www.dropthejargon.org.au

Health Consumers NSW ‏@HCNSW Oct 21

#carers2016. Carers provide $1.1 billion worth of care every week. Every voice counts. Become a member http://www.hcnsw.org.au/

Become a HCNSW member - it's free to join!