Tag: Cancer

Connecting and communicating consumer perspectives on cancer care in WA

Posted on October 11, 2022

 

Has cancer affected your life – currently or in the past? A desire to connect with others who have similar lived experiences is the drive behind the upcoming community conversation welcoming consumers affected by cancer in WA. Health consumers’, carers, family, and community are invited to join “Connecting and communicating consumer perspectives on cancer care in WA“.

Be part of the conversation to discuss progress on the 2020-25 WA Cancer Plan. Discuss opportunities for future consumer and community connections.

Date and time

About this event

The WA Cancer Plan guides cancer care in WA: find out about progress on the 2020-25 plan and discuss opportunities for future consumer and community connections

Health Consumers’ Council (HCC) WA and the Consumer and Community Involvement Program (CCIP) are hosting this community conversation for people with experience of cancer – either for themselves, or for a loved one.

In this session, consumer representative Susannah Morris, the HCC WA consumer representative in cancer involved in work relating to the development and now implementation of the WA State Cancer Plan, will give an update on work so far as background for the conversation. Cancer care is delivered in the states and so state plans provide important context that guides care and affects consumer experiences and outcomes. Unlike some other jurisdictions, WA does not have a readily identifiable network of cancer consumers: we are fragmented between our cancer types and our treating locations and so this community conversation provides a space for us to come together.

This will be an opportunity for attendees to discuss their interest in people with experience of cancer in WA connecting with each other in order to influence the scope, design and delivery of health services and health research in relation to cancer and survivorship.

(NB This information session is being hosted independently by HCC and the CCIP to provide an opportunity for people with experience of cancer to connect with each other and learn about work relating to cancer care and services in WA. This is not a Department of Health event.)

This conversation will be held online, via Zoom – details will be sent out in the week before the session.

 

About the organisers

We are (Health Consumers’ Council WA) an independent charity that exists to support and promote consumer, carer and community perspectives in the WA health system.

The Consumer and Community Involvement Program (CCI Program) is an activity of the Western Australian Health Translation Network (WAHTN). The CCI Program (CCIP) supports consumers, community members and researchers to work in partnership to make decisions about health research priorities, policy and practice with the aim of improving health outcomes and ensuring community involvement becomes standard practice.

BACKGROUND: Cancer Care and the WA Cancer Plan, launched 2020

The WA Cancer Plan was released in February 2020 setting out the next five years of strategy in relation to cancer services. This work was undertaken by the WA Department of Health, and the Health Consumers’ Council supported the project through running a community survey and developing consumer videos reflecting consumer patient journey experiences. A summary of survey results is available here. The launch event featured a moving and articulate presentation from Advisory Group member Susannah Morris, who ensured the consumer voice was at the heart of the plan as much as possible.

(An abridged version of Susannah’s speech is in Health Matters (pages 10-11: March 2020 issue) on the Health Consumers’ Council (WA) website, titled “A new plan for cancer
care in WA“)

REGISTER FOR THE COMMUNITY CONVERSATION HERE:

https://bit.ly/WA-Cancer-Plan-Community-Conversation-Consumer-Perspectives

(LinkedIn: for Dr Susannah Morris)

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]

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]