Update!January 2015 View this email in your browser

Health Consumers NSW quarterly member newsletter. Stay up-to-date with our news.

Message from the chair

Hi Everybody

Here’s wishing you a peaceful, happy, healthy New Year. We are pleased to welcome three new members to our Board: Glenda Clementson (Hepatitis NSW), James Bartlett (Schizophrenia Fellowship) and John Stubbs (Canspeak NSW). Our active Board is representing consumers at many conferences, forums and seminars.

Looking back, I am pleased to acknowledge what a successful year 2014 was for us and our involvement to changes in health issues such as Integrated Care, Chronic Care, Health Literacy, Self-Managed Care, Shared Care and Primary Health Care. We continue to ensure that consumers are involved and invited to be part of discussions.

I also hope you like the new e-newsletter format of Update! as well as our new monthly The Wrap. Please also join our social media channels on Facebook, Twitter and LinkedIn and participate in our 3-minute survey for a new website.

In other news, The Australian Tax Office (ATO) has granted us Deductible Gift Recipient status and we will be holding our inaugural ‘Getting to Grips with Standard 2’ workshop for health service providers and health consumer representatives on 24 March in Sydney. Great news!

The Board thanks our talented and skilled staff and our members and friends who have been so helpful in 2014. We look forward to working together in 2015.

Regards
Betty Johnson AO

News and updates

Annual General Meeting on 28 November 2014

Betty Johnson (AO), thanked all members for their expertise, enthusiasm, skills and knowledge and acknowledged the great work of past and present staff in supporting the organisation.

Executive Director Anthony Brown thanked the Management Committee members for their tireless efforts during the year. He mentioned our high quality health consumer representative training, the Chronic Disease Consumer Issues Report and the consumer engagement project in partnership with WentWest as highlights of the year.

Heather Topp, individual HCNSW member and Buddhist Hospital Chaplain, shared her reflections on how health literacy and human rights are intertwined and how improving health literacy can only be achieved through advancing human rights.

Download: Annual Report 2013/14, Chronic Disease Consumer Issues Report, Heather's speech

Our new Management Committee members

Glenda Clementson (Hepatitis NSW)
Diagnosed with Thyroid and Hepatitis C in 2002, Glenda began her journey through treatments becoming a volunteer for Hepatitis NSW as a C'een and Heard Speaker promoting awareness around the stigma and discrimination associated with Hepatitis C especially in the medical professions. She has assisted people in their treatments through HepConnect support phone lines and unhesitatingly advocated for better treatments through Hepatitis NSW's Cme campaigns. Glenda has been a case worker with a Homeless Men's service for the past nine years and is currently in Private Practice and has a Master of Counselling and Applied Psychotherapy.

James Bartlett (Schizophrenia Fellowship)
James is a passionate mental health advocate who has been involved in different health projects and activities for the last four years. As a young carer, who has cared for his mum since a young age, James has become a volunteer with the Schizophrenia Fellowship. He regularly speaks at parliamentary and private events regarding mental health and health policy. James currently is a Carer Consultant for Hunter New England Health. He is passionate about consumer involvement in health care and is looking forward to being a board member for us.

John Stubbs (Canspeak NSW)
Fifteen years ago John was diagnosed with Chronic Myeloid Leukaemia. Since then, he has been a committed and passionate advocate. He holds degrees in Accounting and Arts and is a regular speaker at medical conferences and seminars on cancer policy, advocacy and clinical trials. He is voluntary CEO of CanSpeak. In 2009 he was awarded an Honorary Associate of the University of Sydney for his work in the promotion of Clinical Trials and in 2011 he received a Recognition Award from the Department of Health for – "long standing commitment to advancing the quality of radiation oncology services in this country".

Standard 2 Workshop
Our Getting to Grips with Standard 2 workshop is getting closer.

When: 24 March 2015 from 9.15am to 1pm
Where: York Function Centre, Sydney

Please call us on (02) 9986 1082 or email info@hcnsw.org.au for your information sheet, the agenda and registration details (outlining costs).

The workshop is for all health service staff wanting to develop meaningful partnerships with health consumers and members of their local community. It is also relevant for consumers, whom health organisation can nominate to attend at a reduced cost.

We are passionate about including patients, carers, their families and the community in healthcare planning and delivery. In the process, we help health organisations to meet their accreditation requirements and achieve true consumer partnerships.

We encourage all health organisations to promote this workshop to staff.

"The course was most helpful"
Our high quality consumer training program is gaining momentum. The last year ended with a successful course in November and December for Western Sydney LHD (WSLHD).

Attendees described the program as "really worthwhile!" As one participant said: "This training will assist me in becoming a better consumer rep. We need to learn to become better listeners, not over react to any situation and to think before speaking." WSLHD has asked HCNSW to run a further program in February.

Any concerns raised during the trainings are fed back to staff in the relevant organisations to be addressed. Sadly, we sometimes still hear stories from consumers who are not treated as equals. For example being asked to wait outside the meeting room until a matter relevant to consumers comes up! Luckily, this is the exception and our training makes sure it will become a thing of the past.

We are developing the 2015 training calendar now. To hear more about the program or make a booking call us on (02) 9986 1082 or write to info@hcnsw.org.au.

Short news

Guest lecture at the University of NSW
On 3 December, Serena Joyner was guest lecturer on Consumer and Community Participation as part of a Masters of Public Health Summer School at the University of NSW.

Several international students as well as students from across Australia attended the lecture which covered an introduction to participation/engagement, the case for engaging consumers, evidence supporting participation in primary health and key issues in working with health consumers. Serena built upon past work by Dr Sally Nathan and discussed best practices based on evidence.

Integration and Partnership in Health Care
The Northern NSW Local Health District and North Coast Medicare joined forces to host a combined Community Engagement Conference at Ballina in December last year.

The opening address was given by the Chair of the Australian Hearing’s Paediatric Program Adversity Committee, Brendan Pearce. He highlighted the importance of consumer engagement and spoke of his experience as a person who is hearing impaired.

Brendan was joined by local health consumers, practitioners and community health workers who spoke about the exciting community and consumer engagement projects in northern NSW. There were also contributions from the Clinical Excellence Commission, Agency for Clinical Innovation and local academics.

“Being part of this conference was really inspiring, it was wonderful to see so many health consumers involved and taking part in the conference," said Anthony who attended the conference on behalf of HCNSW.

Deductible gift recipient status
In December, we received a special Christmas present from the Australian Tax Office. We have been granted deductible gift recipient status. So if somebody would like to make a donation, it is now tax deductible for them. Thank you to everybody who made this possible.

Updated HCNSW constitution for download
The most updated HCNSW constitution is now available for download from our website.

Consumers out and about - Expressions of Interest

John new President of Stroke Recovery Association
In November last year John Garbutt, our HCNSW Secretary, was appointed new President of the Stroke Recovery Association (SRA). Having survived a major stroke in 2003, he was appointed a Director of SRA in 2007 and Vice President in 2011.

As the face of a major stroke awareness advertising campaign on the Central Coast, he participated in a Stroke Mentor Program, is an active member of the WAGS stroke support group and co-chairs the men’s support group Scallywags.

John has held senior management positions in State government and has an MBA and a business degree.

Mary at NSW Innovation Symposium
Mary Potter, a HCNSW board member, was invited to participate in a panel on e-health at the NSW Innovation Symposium in October last year. The panel was moderated by Dr. Norman Swan of ABC Radio National’s Health Report and can be seen at: http://bit.ly/1BHNiur.

The event was hosted by NSW Health to showcase new ways of delivering health services and improving patient care in NSW. Click for more information about the symposium.

Mary has recently published an article about e-health in Consumer Health Forum's current edition of Health Voices on page 17.

Call for EOI: HETI Interprofessional Family Conferencing Steering Committee
The Health Education and Training Institute (HETI) is looking for consumer representatives to join their Interprofessional Family Conferencing Steering Committee.

The committee will work on a project to support clinicians involved in interprofessional family conferencing through a state-wide training program. This includes the development of an eLearning module and a face-to-face simulation workshop targeted at medicine, nursing and midwifery, and allied health professionals.

Committee meetings will be monthly or bi-monthly with the first meeting starting on 17 February 2015 from 1 to 3pm at Gladesville Hospital (Sydney). Teleconferencing is available.

Interested individuals should have experience and/or understanding of the NSW health care system, experience taking part in family conferencing and state-wide committee work and possess high level communication skills. Please let us know if you would like to join by calling us on (02) 9986 1082 or writing to info@hcnsw.org.au.

Upcoming events

Safe the date: Vocational Graduate Certificate in Consumer Engagement
Health Consumers NSW, in partnership with the Health Issues Centre in Melbourne, are offering a Graduate Certificate in Consumer Engagement in Sydney for the first time later this year.

The training will be held in Sydney over a period of 4 days and is most useful for people working in the health system and in health NGOs with responsibility for consumer engagement.

Dates: 7 to 8 May and 25 to 26 May 2015
Estimated cost: $2,800

For more information contact us on (02) 9986 1082 or info@hcnsw.org.au.

GP NSW Forum. Integrated Primary Health Care in NSW: Vision & Reality
General Practice NSW is hosting the Primary Health and Community Care Leaders Forum: Exploring the NSW Primary Health Care Integration Agenda.

When: 25 February 2015
Where: 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, the forum will explore practical guidance on how best to anticipate and manage contemporary changes in the sector.

GP NSW has kindly offered HCNSW members a 15 percent discount to attend. Please register and choose 'Other', enter 'HCNSW Member Discount' in the registration form.

Anthony will be presenting at the forum on the importance of consumer engagement in primary health care. Download Forum Draft Program

International Shared Decision Making – Evidence Based Health Conference
The International Shared Decision-Making (ISDM) group and the International Society for Evidence Based Health Care (ISEHC) are hosting the joint ISDM/ISEHC 2015 Conference in Sydney on 19 to 22 July 2015.

HCNSW has been invited to be part of the planning for the conference to ensure that health consumers and health consumers’ experience are included in the conference. Anthony is representing HCNSW on the conference organising committee.

Organisers hope to get sponsorship that will provide support for a small number of health consumers to attend the conference. We will announce details when the scheme is set up.

Health consumers and consumer organisations are encouraged to participate and attend the conference. Abstracts can be submitted until midnight on Friday 20th February 2015. For information visit the conference website or contact the Conference Secretariat on info@isdm-isehc2015.org.

A word with ... Serena Joyner

The new 'A word with...' series will feature a HCNSW employee, member or a health organisation in every Update. Our own Serena Joyner, Project Manager – Joint Consumer Engagement Project, makes the start.

Serena, what is your role at HCNSW? Can you describe your work in three sentences?

My role is an interesting one – I have been based in WentWest (the Western Sydney Medicare Local) working with them to review their current consumer engagement programs and help the organisation to strengthen and embed engagement at all levels. This practical experience is also informing the development of a model for consumer and community engagement that will be applicable across the wider health environment. One of the key outcomes for NSW consumers will be a toolkit that will support consumers and community groups to engage with health services.

What brought you to health consumer representation and advocacy?

My background isn’t typical – I have a degree in engineering and I worked for 10 years in knowledge and information management. Five years ago I was lucky enough to find a role close to home working with consumers in the Blue Mountains GP Network (which transitioned to the Nepean Blue Mountains Medicare Local). The work I did there – supporting consumers to lead engagement within a health service that took consumers seriously - was really eye opening and a fantastic experience. Postgraduate study in social research has put some academic rigour around my work that complements my hands on experience. As a result, I am passionate about breaking down barriers for consumers to participate in health on a level playing field.

We heard that you are a keen Ukulele player and you even played on radio before. What does playing the Ukulele mean to you?

I am incredibly lucky to be part of an amazing ukulele club – The Blue Mugs (Blue Mountains Ukulele Group). We have hundreds of members and we are invited to perform so often we frequently have more than one gig on any given weekend. I have been interviewed on ABC 702 local radio about our annual ukulele festival (held in Katoomba every February) and I played live on air in October during a show to commemorate a year since the 2013 Blue Mountains Bush fires. One of the things that drives our club is sharing the joy of the ukulele and music with as many people as possible. For example every Christmas we travel around local nursing homes performing carols for the residents and staff. I think we enjoy performing at least as much as our audiences!

If you could suggest just one read related to health consumer representation to our readers, what would it be?

It’s a research paper but is still pretty accessible and has so many insights, stories and lessons for consumer representatives. It is based on research conducted in a Sydney health service by Dr Sally Nathan, so is particularly relevant to NSW consumers.

Sally Nathan, Niamh Stephenson, and Jeffrey Braithwaite
Sidestepping questions of legitimacy: How community representatives manoeuvre to effect change in a health service
Health (London) January 2014 18: 23-40, first published on January 30, 2013