The WrapFebruary 2015       View this email in your browser

We bring current health consumer news, research and commentary straight to your inbox.

Day-by-day, hand-in-hand: living with a rare disease

Become involved in Rare Disease Day this month. The day happens on the last day of February each year with the main objective to raise awareness about rare diseases and their impact on patients' lives

The 2015 Rare Disease Day theme is “day-by-day, hand-in-hand”. It seeks to open the public's eyes about how living with a rare disease, and caring for a rare disease patient, affects every day living.

The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Rare diseases are defined as a condition, syndrome or disorder that affects one in 10 000 people or less. Eighty percent of rare diseases affect children and most begin in childhood and continue throughout life. Although each disease is rare, collectively they affect 10 percent of the population.

This year, become involved, make a pledge, print out the poster and take a photo or register your event at #daybyday, #handinhand

Personal consumer engagement stories

Coming out with mental illness

To understand the process that someone goes through when they ‘come out’ with mental illness, the Cass Identity Model developed in 1979 for explaining how gay and lesbian people come out is a useful model. Keegan Hayden has personally opened both of these closet doors. Here he talks about his experience...


Families voice plays vital role

Bonnie Thompson is an advocate with Mass Family Voices at the Federation for Children with Special Needs  in the USA. She is also the proud parent of a 15-year-old health consumer in training. Here she talks about how she and her daughter got involved including families in quality improvement for practices. How are you getting families involved in improving your health care service? Let us know on our Facebook page.

The Rep Trap

The Future Patient Blog's interesting and insightful piece on how consumer representatives can quickly be caught in 'traps' and how to avoid them. A good read.
When patients read what doctors write

How accuracy, understanding, and even health outcomes can dramatically improve when patients simply view their medical records. One doctors experience that completely changed her practice. 
News and current affairs
Rural patients and their families - the forgotten health consumers

Living in country NSW and being diagnosed with a serious, life-threatening or chronic illness too often is a devastating situation. Not only because of the illness but the non-existent treatment options and support. Patients and their families often have to travel thousands of kilometres to major hospitals. Once there, no affordable accommodation for patients and/or family members is available. Chronic conditions mean regular trips like this with no end in sight.
Patricia Le Lievre from Health Consumers of Rural and Remote Australia and HCNSW Board Member only knows too well about the plight many of these families face. "We hear about families having to sell their homes as spouses or parents become carers, travelling with their sick loved ones and having to pay for travel and expensive accommodation in major cities while having no income," she says.

"Major hospitals need to cater for these patients and their families providing affordable accommodation but who is responsi

A situation Linda J. Samera, a country doctor from rural NSW, personally only knows too well. Read her story here (with thanks to the Medical Journal of Australia).

Have you been in a similar situation or know of someone who has? Tell us about it on our Facebook page

New Federal Health Minister: The Hon Sussan Ley MP

Sussan Ley was appointed Minister for Health and Minister for Sport on 23 December 2014.

She was first elected as the Federal Member for Farrer in NSW in 2001. Before entering Parliament, Minister Ley worked a variety of jobs including roles as an air traffic controller and commercial pilot.

One of Minister Ley’s first acts as Health Minister was to stop the planned introduction of the controversial GP co-payments. Minister Ley has said she will consult further about any future co-payment. Effective consultations about this, or any health reform, must involve health consumers and HCNSW encourages the new minister to seek out the voice and opinions of health consumers and consumer organisations.

Govt to grandfather high-needs clients in CHSP

Existing home support clients with complex or high needs will be grandfathered from 1 July 2015, when the new Commonwealth Home Support Program (CHSP) launches, until they transition to more appropriate services, Australian Ageing Agenda confirms.

The continuation of services to this cohort was a major concern raised in submissions to the Department of Social Services’ discussion paper being used to inform the final design of the CHSP.

The National Aged Care Alliance had advised the department to grandfather existing clients or to make available additional home care packages to support their higher needs.

Read full article

Quiet please

Surveys of Australian hospital patients appear to overlook one of the lowest areas of satisfaction internationally - an issue which extends beyond individual dissatisfaction to impact actual health outcomes in both existing and future hospitals: Quietness of the hospital environment.

Dr Luke Zoontjens, a professional acoustics engineer at SLR Consulting (Australia) reminds us why this is such an important issue and questions why it is not part of the Standards in Healthcare Guidelines.

Transforming health services - does health literacy provide the key?

Does health literacy provide an answer to the quest to support people to take control of their own health and care, to more equitable health care and health outcomes and to a sustainable National Health System?

Watch this lecture which Professor Richard Osborne – Chair in Public Health in the School of Health and Social Development at Deakin University, Australia – delivered at the Health Foundation in November 2014.

Tackling obesity: Aussies want change

New research has revealed that 79 percent of Australians polled believe if we don’t do more to lower the intake of fatty sugary and salty foods/drinks, our children will live shorter lives than their parents. Eighty-five percent of people polled said unhealthy eating habits are now a major problem for Australian children.

The 2014 poll by Essential Research of over a thousand people shows nearly two thirds of respondents say the food industry seems to have more say than the Government over the regulation of food, and 77 percent support making it compulsory for ALL packaged foods to have a health star rating.

The Consumers Health Forum, the Heart Foundation, the Obesity Policy Coalition and the Public Health Association of Australia have joined forces to urge the Federal Government to take decisive and firm action to stop the never-ending promotion of unhealthy food.

Read more about the campaign on Our Health, Our Community

Strengthening mental health care in NSW

The NSW Government has committed to an overhaul of mental health care service delivery, with a $115 million boost to mental health funding over three years. A key commitment of the Government is improving the wellbeing of the community and ensuring better outcomes for people with mental illness, their families and carers.

“Any increased support for mental health services is welcome” according to Dr. Anthony Brown, Executive Director HCNSW.

“It is important though that consumers of mental health services and their families have a say on how this money is best used. And while better services are vital, attention also needs to be given to underlying causes such as the stress that comes from poor working conditions, unemployment or relationship difficulties.”

More informationLiving Well: A Strategic Plan for Mental Health in NSW 2014-2024
Have your say
Q&A forum on dying with dignity

Dying with Dignity NSW (DWD NSW) is organising a Q&A forum in Port Macquarie on Saturday, 14 March 2015 at Port Panthers Auditorium from 2 to 4.30pm. Tickets are $13 for non- DWD members and $10 for members.

Latest surveys show that 85 percent of Australians are in favour of legalising medically assisted dying for the terminally ill. The Q&A Forum will discuss and debate all the issues. Everyone with an interest is invited to attend. There are high-profile speakers and round-table participants and organisers will take questions before the event.

More information and buying tickets

Invitation to contribute: Draft National Framework for Child and Family Health Services

Between February and April 2015 stakeholders have the opportunity to provide feedback on the draft 'National Framework for Child and Family Health Services – secondary and tertiary services’. The framework will guide government and nongovernment agencies in the planning of programs, projects and services to respond to the secondary and tertiary health needs of children 0-8 years and their families. 

You can complete an online survey and/or attend a face to face consultation. There will be a consultation forum in Sydney on Thursday 26 February.

Draft National Framework
Research and academics
Real engagement with communities (UK 2014)
This is a letter to The Lancet referring to the need to engage disadvantaged communities with tuberculosis. Engagement is needed in all aspects of research from design through to programmatic implementation in all activities to address tuberculosis. 

Patients' engagement in primary care: powerless and compounding jeopardy (New Zealand 2012) 
This article argues that primary health care practitioners would benefit from respectful listening and questioning which can enhance clinicians' awareness of patients' most important concerns.

Transforming patient experience: Health Web Science Meets Medicine 2.0 (UK 2014)
The future of medicine requires a shift to a patient-centric model and in so doing the internet has a significant role to play. This article draws ideas from design practice, research and participatory action research to design an approach that is linked to concepts of person-centred care. 

Patient use of the internet for health information (Australia 2014)
This study describes the use of internet by general practice patients. The author found that internet use and online health information seeking was related to the age of the patient. The most disadvantaged patients were more unlikely to have obtained health information  
Events and resources
Standard 2 workshop: Register now!

We are holding a workshop for all health service staff wanting to develop meaningful partnerships with health consumers and members of their local community. Experienced consumer representatives will also find the workshop useful. 

Hear success stories from consumers and health services, as well as the experiences and reflections of a Standard 2 Assessor. Speakers include: Professor Clifford Hughes, CEO of the Clinical Excellence Commission and Dr. Nicola Dunbar, Program Director of the Commission for Safety & Quality in Healthcare. 
DATE: 24 March 2015
VENUE: York Conference and Function Centre, 95-99 York St, Sydney
TIME: 9.15am to 1pm (followed by lunch)
COST: Health service employees: $88 (incl. GST); Health consumers: free

Register now!
Book us for training

Did you know that we run training courses for health services interested in supporting their consumer representatives to be the best they can be?

The two-day health consumer training program covers all your consumer representatives need to know about understanding the system, their role and how health professionals and consumers can work together. It also teaches them important skills like conflict resolution, networking, communication and negotiation, how to be an effective consumer advocate and much more.

The training is also useful for staff to understand how to engage the community and consumer representatives and fulfill Standard 2 obligations.

The program is interactive with time for discussions and information sharing. Contact us on (02) 9986 1082 or to make a booking.
Primary Health Care Research Conference 2105 
2015 will be a year of major change and opportunity in primary health care in Australia. It is time for research to be utilised more purposefully to influence policy and practice. Call for abstracts will be announced early in 2015.

GP NSW Primary Health Care Leader's Forum
25 February 2015, SMC Conference & Function Centre, 66 Goulburn Street Sydney
Aimed at prominent health consumers, clinical leaders, CEOs, board directors, operational and strategic senior managers and stakeholder organisations with interests in primary health care. Our ED, Anthony will speak at this event.

Rare Disease Summit 2015 - Melbourne
The Rare Disease Summit 2015 aims to showcase current initiatives to progress a National Plan for Rare Diseases. It is on from 27 to 28 March at the Novotel Melbourne in St Kilda.
More information

TiARA information evening 
You are invited to an information evening of the TiARA (Tick-induced Allergies Research & Awareness) Patient Support Group Sub-committee in Mona Vale. 7pm - 8.30pm, 17 February 2015; The John Newlinds Education Room Mona Vale Hospital, Coronation Street, Mona Vale. Contact: 

15th International Conference of Integrated Care
Wednesday 25 March to Friday 27 March 2015
Venue: Sheraton Grand Hotel & Spa, Edinburgh
Country: United Kingdom

13th National Rural Health Conference
Darwin, 24-27 May 2015.

Carers NSW 2015 Biennial Conference 
When: 21-22 May 2015
Where: Novotel Sydney Olympic Park
For more information: click here

A better way to care for patients with cognitive impairment in hospital

The Australian Commission on Safety and Quality in Health Care has launched new resources to improve the safety and quality of care for patients with cognitive impairment (dementia and delirium) in hospital.
Cognitive impairment is common among older people admitted to hospital and patients with cognitive impairment are at greater risk of harm. The resources follow a pathway, describing strategies that reflect evidence-based practice and existing models of care. The resource for health service managers links the strategies to the existing NSQHS Standards.
The three reources are available as interactive e-publications: Additional resources inlcude:
Aboriginal and Torres Strait Islander Chronic Disease Fund
The aim of this fund is to improve the prevention, detection and management of chronic disease in Aboriginal and Torres Strait Islander peoples to improve life expectancy. Further details of the grant requirements can be found here.
A snaphot from our twittersphere...

Sussan Ley@sussanley Feb 5
In #Brisbane for ongoing & ‘very constructive’ consultation on Medicare thanks for your time.
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