Search Results for: health information

Systemic Advocacy

Posted on December 19, 2017

The definition of systemic advocacy is:

Organisations, groups, or individuals working for long-term social and legislative change to make sure legislation, policies and practices equitably support the rights, needs and interests of all people. Advocacy is done through acting, speaking, listening, and writing to promote, protect and defend the rights of a person or community.

The systemic advocacy work we do aims to:

Introduce, support, and influence positive long-term changes to the WA Health System; changes that support and respond to the voices and needs of the community, including legislative, policy and practice environments throughout public and private sectors
Ensure that the rights and interests of all people living in Western Australia are listened to and upheld, especially diverse and marginalised people and communities, including First Nations people, people in rural and remote areas, Culturally and Linguistically Diverse (CaLD) people, children and youth, people serving time in the justice system and members of the LGBTQIA+ community
Promote and partner in improving opportunities and outcomes involving living-expertise and collaboration
Ensure the issues and experiences of individuals and communities inform the focus of our work
Share information and opportunities for community involvement
Represent the Consumer Voice to WA Health

Our systemic advocacy work aims to support and further HCC’s vision of equitable, person-centered, quality healthcare for all those living in Western Australia, and aims to model the values of respect, kindness, equity, working together, integrity and empowerment.

If you have any questions about Systemic Advocacy in the Health System, or about any of our listed involvements, please email info@hconc.org.au

Advocating through Committees

Archived Systemic Advocacy work

Staying Safe at Home – Patient’s Own Medicines

Posted on December 10, 2017

This is a guest blog from researcher Brock Delfonte.

Managing your medicines at home can be complicated. It is important for your health that you always take the right medicines at the right time and know why you take each one. It is also just as complicated managing your medicines when you are admitted to hospital. Keeping track of all your medicines is vital but can be difficult as there are a number of different names, types and forms that medicines can come in, including:

· tablets, capsules and liquids
· patches, creams and ointments
· drops and sprays for eyes, nose, ears and mouth
· inhalers and puffers
· injections and implants
· pessaries and suppositories.

Most medicines are usually prescribed or provided by a doctor, nurse or pharmacist. Herbal, complementary or “over-the-counter” products like vitamins, nutritional supplements, and natural remedies are also considered medicines, as is anything you may obtain at supermarkets, health food stores or over the Internet.

Bringing in your medicines to hospital is one way you can help hospital staff get your medicines right. Bringing all of your medicines, including anything you keep in places like the fridge or by the bedside, lets hospital staff know what you’re taking and makes sure that you will be able to continue taking them if needed. There are a number of other benefits from bringing in your own medicines to hospital:

· Hospital staff can use some of the information found on the medicine labels to help them, including the details of any doctors or nurses who prescribed medicines for you and the pharmacies they came from
· Having the medicines with you can help you remember exactly how you take them, and help you remember any other medicines you may take
· Having your medicines with you can allow hospital staff to better help you should any of your usual medicines change in any way or are stopped during your hospital stay.

Remember to store your medicines correctly at home, and have them easy to access should you or your family or carers need to collect them to bring in to hospital. Bringing in all your medicines to hospital each time and wherever possible helps hospital staff provide you with the best quality care they can.

Brock Delfante MSHP
BCom BSc MPharm PhD (c)

Complementary Therapies in Cancer Care

Posted on August 25, 2017

“Studies show 77% of cancer patients who incorporate complementary approaches believe it improves their quality of life. 73% state it makes them feel hopeful. 71% say it helps to boost their immune system” (Mao et. al. 2011). In Western Australia Solaris Cancer Care leads the way in providing complementary therapies in cancer care.

Solaris Cancer Care

In July the Cancer Council WA held the ‘Integrative Oncology Symposium: Pathways to Wellness and Survivorship’. The symposium explored new ways to improve symptom control, alleviate patient distress and reduce suffering. The speakers were health professionals and academics who provided their insights into alternative therapies, lessons learnt in the treatment of cancer and patient experience, this included Clinical Professor David Joske founder of Solaris Cancer Care (2001).

“Although excellent resources have long been available to treat cancer medically, it became clear to me that the emotional and supportive care needs of cancer patients and their families were often overlooked.

So Solaris Cancer Care was born – a drop in centre in Sir Charles where cancer patients could receive free support and advice and supervised complementary integrated therapies that would support their mainstream treatment.

It was a radical idea at the time, and still is in some respect. But the idea has continued to grow and over the last 15 years we have opened three additional clinics in Albany, Bunbury and St John of God,” he says (Solaris Cancer Care 2016).

Since its inception Solaris has provided cancer patients with support services and access to complementary integrative therapies. It all started with a comment from a patient, Roy in 1998. Roy said that when he mentioned to one of his treating physicians that he was seeking complementary therapy, they had shut him down. Clinical Prof. Joske said he realised he “needed to get on board with complementary therapy.” By not accepting complementary therapy it had created a barrier between him and his patients so “we weren’t quite rowing in the same direction.”

Solaris Cancer Care Now

Now 100 people per week drop into Solaris, with no medical misadventure. Patients who access the services have a reduction in symptom distress and improved quality of life. Clinical Prof. Joske said during his time treating cancer patients the most valuable lessons he has learnt are from his patients:

The power of words and permission to die – What we say to people (and when) matters!
A role for complementary medicine – Accept how people cope with cancer.
The promise of new biology – cancer is a chronic illness
Survivorship

Clinical Prof. Joske closed his presentation with, as Hippocrates said, “Cure sometimes, treat often, comfort always”. For more information about the complementary therapies offered at Solaris Cancer Care go to: solaris care

Lucy Palermo | Marketing & Communications Coordinator | Health Consumers’ Council (WA)

References:

Mao, J, Palmer, C, Healy, K, Desai, K & Amsterdam, J 2011, ‘Complementary and alternative medicine use among cancer survivors: a population-based study’, Journal of Cancer Survivorship: Research and practice, vol. 5, no. 1, pp. 8-17.

Solaris Cancer Care 2017, About Us page, 2016, Solaris Cancer Care. Available from: https://solariscare.org.au/about-us/dr-david-joske/. [28 August 2017]

Self-Advocacy Resources

Posted on August 13, 2017

This page provides key resources and links to websites to help you navigate your way around the health system, and provide feedback to our health services.

It’s always OK to ask!

How to prepare yourself for an appointment or hospital admission:

Make sure you know Your Healthcare Rights
Support yourself to give informed consent – check this web page or listen to this podcast
What should you ask? Question Builder tool – prepare for an appointment
What should you ask? Five Questions to ask your doctor before you get any test or treatment (available here in 10 languages)
Check out Lab Tests Online to find out about pathology tests – what they mean, what to expect, should you have the test? The Health Consumers Council is working with Lab Tests Online and Curtin University to improve the health literacy landscape and help health consumers better understand their pathology results. More information about the project can be found here. If you would like to review the online platform and undertake a survey of your experience, you can do that here.
You can download a one page Procedure Specific Information Sheet – if there is one for your procedure – make sure you ask your doctor for the full, four page version when you have your appointment
Stay safe in hospital and receiving healthcare Top Tips to Safe Healthcare (available in 15 languages)
Stay safe before, during and after a hospital admission – see the suite of Patient First materials – See also the Easy English version of Going to Hospital developed for English Language students
Stay safe with your medications – see My Medicines and Me questionnaire for mental health medications
Do you need Private Health Insurance? You can access unbiased free information about private health insurance at www.privatehealth.gov.au This site is provided by the Australian Government. You can learn about health insurance, see frequently asked questions, and compare policies side by side based on your individual or family circumstances.

Guardianship and Administration

If you need help with Guardianship and Administration here is a 2 page information sheet
The Mental Health Law Centre also has several videos explaining Guardianship and Administration that you can view here

How to give feedback

As well as seeking advocacy assistance you may want to provide feedback when service has been poor, insensitive or incompetent. This can be a powerful way of improving the health system for yourself and others.

We have a simple step by step information sheet for how to make a complaint

You may also find these resources useful:

Click here to download a Sample Complaint letter
Click here to download a Freedom of Information Request Letter (Template)
Click here for the Freedom of Information Contact List

Open Disclosure

When something has gone seriously wrong in hospital, you can expect to have an open and honest conversation. See here for more information.

Care Opinion

The Care Opinion website allows you to post your story, positive or negative, anonymously. The health service is identified but you can remain anonymous. This story is published to the website and you, and everyone else, can track its progress from your story being read, responded to, and a change made if necessary. The feedback is read by the highest level of health service management, so it is one of the most effective ways to make your voice count. If you need any assistance in posting your story, you can contact Care Opinion by phone on 1300 662 996

Mind and Body March 2017 – Ways for consumers to have a voice

Posted on August 13, 2017

In this episode, former staff member Stephanie Newell spoke to Mind and Body Host Cynthia Nixon about the various ways people can be involved in improving the health system through Health Consumers’ Council (HCC). This included:

Reading Group, attending information sessions – e.g. Diversity Dialogues Forums and Focus Groups
What being a Consumer Representative means
Advocacy – Individual & Systemic
What are Consumer Advisory Councils and their country equivalent District Health Advisory Councils?
Forthcoming Patient Experience Week events featuring international patient experience community of practice, the Beryl Institute’s CEO Jason Wolf as Keynote speaker
Upcoming Orientation to HCC information session

Cultural Diversity

Posted on July 24, 2017

Why do we care about cultural diversity engagement?

At Health Consumers’ Council we believe in inclusion and the best health outcomes for all. WA continues to experience higher than national average population growth through migration and over half of West Australians have one or more parent born overseas. We speak 240 languages across a vast state. Language barriers as well as practices which are not culturally sensitive or inclusive can lead to poor uptake of services and poor health outcomes.

We recognise that the voice of people from Culturally and Linguistically Diverse (CaLD) backgrounds is often left unheard, for example, WA’s Patient Experience in Health Survey specifically excludes people requiring an interpreter. We also have significant concerns about the poor uptake of interpreters in health services and how this impacts on people being able to provide informed consent as patients. Research in the area is also very limited.

What do we do about it?

Health Consumers’ Council is committed to supporting services to assist with effective engagement and care provision to people from diverse cultures. We have developed a range of forums and workshops to assist both health service providers and community members. We are also establishing a panel of CaLD community members who might wish to share lived experience or community perspective in order to improve health services. Click on the links below to find out more.

Information about WA Health System

CaLD Community Workshops and Events

Health Service Provider Workshops and Events

CaLD Community Panel

Alcohol and Other Drug Consumer & Community Coalition

Posted on July 24, 2017

Background

In 2015, the Health Consumers’ Council was funded to co-ordinate a project to build on the recommendations from the November 2014 Forum, Improving Consumer Involvement in the Alcohol and Other Drug Sector. An Alcohol and Other Drug Advisory Group (AODAG) comprising government agencies, not for profit organisations and consumers was set up to oversee progress.

The project specifically addressed the following two recommendations:

to develop a common set of principles for engagement
outline best practice engagement strategies for the sector

In 2017 the WA Primary Health Alliance funded HCC to support the ongoing work of the Alcohol and Other Drug Advisory Group (AODAG) to oversee a new project entitled “Improving Consumer Involvement in the Alcohol and Other Drug Sector”.

It was agreed that the term ‘alcohol and other drug consumers’ was inclusive of current users, service users, potential service users, family members and supporters.

The Alcohol and Other Drug Consumer & Community Coalition (AODCCC) was incorporated in June 2018 in response to the need and support for an AOD specific consumer advocacy body. We have recently received funding from the Mental Health Commission in order to progress our establishment and have now released our Mission, Vision and Values.

AODCCC Membership

Membership is open to people who use or who have used alcohol and other drugs, their family members and significant others. A link to an online membership application can be found here and on the Facebook page. Hard copy applications are available here and can be emailed to info@aodccc.org.

Management Committee

Full details of the current Management Committee are provided on the Australian Charities and Not-for-profit Commission (ACNC) website.

Contact AODCCC

For any information please contact:
Email info@aodccc.org
Phone (08) 6311 8402

Reporting

31st October Report – the first report as per 31st October Mental Health Commission funding deliverables can be found here.

Updates

August update (July activities)

September update (August activities)

October update (September activities)

November update (October activities)

Cancer Patient Empowerment

Posted on July 17, 2017

It can be difficult to process the diagnosis of cancer. You are losing control of your body and although you do have choices during the treatment process they are limited. You can’t do the things you used to and you have to accept a new kind of ‘normal’. During this process, it can be difficult to feel empowered as a patient and as a person.

The Path to Patient Empowerment

The path to empowerment includes ‘Surrendering, but only certain elements of your life. It’s not a black and white situation’ says Associate Professor Caroline Bulsara, Notre Dame University. In 2012 Associate Professor Bulsara developed the ‘Patient Empowerment Scale’, for a study to measuring cancer patient empowerment. Using the questionnaire (comprised of 15 scaled questions) she surveyed 210 cancer patients. Through Associate Professor Bulsara’s research into quantifying empowerment she identified these keys to regaining control:

Acknowledging what I can and cannot control.
Familiarising oneself with the treatment regimen and side effects of treatment.
Establish boundaries with family and friends.
Learning to recognise what resources and information are and are not relevant.
Accepting and adapting to changed lifestyle. (2017, Associate Professor Caroline Bulsara, Notre Dame University)

How Providers Can Support Patient Empowerment

Associate Professor Bulsara identified that patients felt more empowered when all communication was shared with them and well documented. They felt more in control of their condition and had reduced feelings of anxiety. Patients spoke of a sense of empowerment due to their ownership of a paper journal, they called the Patient Held Record (PHR).

However, according to Associate Professor Bulsara more work needs to be done to explore the stages of empowerment during and after active treatment.

You can read more about her research via this link: http://www.ccsenet.org/journal/index.php/cco/article/view/23078

Health Consumers’ Council and Patient Empowerment

It is important to remember that it is your body they are treating. You reap the benefits but also the side effects of that treatment and you may have to live with those side effects for years to come.

Doctors must have your informed consent before you start on any new treatment regime. According to Cordasco, ‘In health care, informed consent refers to the process whereby the patient and the health care practitioner engage in a dialogue about a proposed medical treatment’s nature, consequences, harms, benefits, risks, and alternatives. Informed consent is a fundamental principle of health care’ (Cordasco 2013). This means you have the right to say no and seek a second opinion.

If you are finding it difficult to speak up Health Consumers’ Council can help. We can help you to understand and support your healthcare rights. We can help you find and access health services and assist you in providing feedback about your health experience. This free service is available to anyone in WA. For more information regarding our services and tools to support you click here.

Lucy Palermo | Marketing & Communications Coordinator| Health Consumers’ Council WA

References:

Bulsara, C & Styles, I 2013, ‘Development of a Cancer Related Patient Empowerment Scale Using the Polytomous Rasch Measurement Model’, Cancer and Clinical Oncology, vol. 2, no. 1, pp. 87-102. Available from: Cancer and Clinical Oncology. [13 July 2017]

Cordasco, K 2013, ‘Obtaining Informed Consent from Patients: Brief Update Review’, Making Health Care Safer II: An Updated Critical Analysis of the Evidence for Patient Safety Practices, no. 211. Available from: National Center for Biotechnology Information. [14 July 2017]

Celebrating people who make a difference…

Posted on May 16, 2017

Have you ever encountered a person who absolutely stands out in the way they approach the work they do? There is a noticeable difference in attitude and energy between those who are truly engaged in their role and those who are not… and how difficult must it be to face up every day to something you are not enjoying and you don’t believe in?

This year I have been working with someone who I have never met face to face. We communicate via email and phone and have glimpsed each other once via video conferencing. Why haven’t we met? Because this wonderful person lives in Katanning. Her name is Karen and she has been incredible in her enthusiasm and energy around engaging with people from diverse cultural backgrounds.

Briefly, Katanning is home to people from many different countries, some quite newly arrived while others have become long term residents. It is known as a town that supports cultural diversity and which has been highly successful in doing so. Karen works for the Department of Health in two roles, as a Health Promotion Officer – Culturally and Linguistically Diverse (CaLD) and as a Project Officer, Sexual Health and Blood Borne Virus.

In her role/s Karen has encouraged and supported people from CaLD backgrounds to engage with the health sector with the result that there is now a Multicultural DHAC (District Health Advisory Council) in the Great Southern Region. I suspect this may be the first of its kind in WA and is a fantastic achievement that needs to be celebrated and acknowledged.

Beyond that I would like to say, ‘thank you’ to Karen for the level of interest she has shown in and her support for the work that I do and to acknowledge those things. Also for her willingness to be involved in HCC’s Refugee and Asylum Seeker Health Research Alliance (RAHERA) and her participation in other activities this Program undertakes.

You are really appreciated Karen, thank you. We really value your support.

Footnote: On May 11, I travelled to Katanning and ran information sessions and workshops, also the following day. There I met Karen and she is as dynamic as I suspected!

Click here to read about the work Health Consumers’ Council did with Katanning Senior High School.

Louise Ford | Consumer and Community Engagement Manager

Image Source: https://smallbiztrends.com/2016/11/ways-to-thank-customers.html

How are you improving the Patient Experience? Posters

Posted on May 3, 2017

In 2017 Health Consumers’ Council (WA) invited Hospitals, Health Services & NGO’s to share with other health services, health professionals and consumers how they provide positive patient experiences. They had to answer three simple questions:

Share an initiative that ensures what matters to your patients/consumers is leading to improved patient experience.
What difference has this made?
Share one lesson you have learnt.

The posters were displayed at the Patient Experience Week Community Conversation on April 27, 2017.

If you would like to submit your initiative you can find the forms on this page.

The following services provided information to create the posters below (Click on the links to download a PDF version of the posters):