Systemic Advocacy

 

The definition of systemic advocacy is:

Organisations, groups, or individuals working for long-term social & 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 & remote areas, Culturally and Linguistically diverse people, children and youth, people serving time in the justice system and members of the LGBTQIA+ community
  • Promote & 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
  • Be representing 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 & empowerment.

 

Below are summaries of some of the many systemic actions we have been involved in over the past 5 years.  On the side menu, you will see our most recent/ongoing systemic projects, partnerships and involvements.

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 

 


Alcohol & Other Drug Consumer & Community Coalition

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:

  1. to develop a common set of principles for engagement
  2. 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

Cancer Care

Cancer Care

The 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.

Cancer Research

In May 2019 the Health Department’s Health Research Future Fund sought feedback on the involvement of consumers in cancer research. A large forum was convened with researchers and clinicians across the sector. HCC was funded to enhance the consumer voice into the process. We undertook a consumer survey, and presented a short video with consumer and carer experiences of being involved in research. Click the link for the Consumer insights in Medical Research Cancer  PowerPoint.

In summary, we strongly agree with the National Health and Medical Research Council that:

“Consumer and community involvement is about research being carried out with or by consumers and community members rather than to, about or for them.”

The Cost of Cancer Care

The Health Consumers’ Council has partnered with Cancer Council WA to find out whether people are making informed financial decisions about where to get their cancer care.

We developed a short survey to find out more about the issue, and a report of the findings is here.

You may also be interested in a national consultation that Cancer Council Australia is running in partnership with Breast Cancer Network Australia, CanTeen and Prostate Cancer Foundation of Australia on their proposed standard for informed financial consent as a key component of delivering quality care.

 

Dental Care

The Health Consumers’ Council (HCC) is aiming to develop a Dental Panel – people who are interested in being contacted from time to time to complete surveys, or perhaps attend forums, on the topic of dental health. We have a seat at the State Oral Health Advisory Committee and we would like to use this seat to the best of our ability.

On 16th January 2020, Geoff Hutchison invited HCC to discuss a listener’s story about having to pay all charges up front prior to their child’s wisdom tooth extraction procedure.

Do you have a story to tell? Are you interested in staying in touch about dental health?

Click here for the short survey

We have put together a short survey for you to complete. You have the option to leave your contact details if you want to get more involved. We would only use these details ourselves and would not share these, and only to ask you about your consumer views on dental health and associated issues.


Digital Health & My Health Record FAQs

There is so much going on in the digital health space. It is a complex area and difficult to know what issues need to focus on. People are rightly concerned about their data and its privacy. But being able to share your health information quickly could mean the difference between life and death. Queensland Health developed a Consumer Charter on Digital Health which aims to reflect consumer priorities and needs in relation to digital health.

In WA the Digital Health Strategy 2020-2030 was released, and a key initial deliverable will be creating a statewide electronic medical record in our hospitals. This may seem confusing, given that the My Health Record was implemented nationwide in 2019. As at December 2019, 22.68 million Australians had a My Health Record, with 2.4 million of those in WA. (See here) A key thing to remember is that:

  • An electronic health record is designed to have a more overall view of someone’s health, across hospitals, GPs, pharmacists etc.
  • A medical health record tracks medical care usually within one hospital.

We are currently working with the WA Department of Health to develop a Consumer Charter which focuses on digital health. HCC are convening 10 Kitchen Table Discussions on the topic and is currently seeking Discussion Hosts. The Kitchen Table Discussion comments will be used to form a Consumer Charter – this will include non-negotiable principles to guide future direction.

My Health Record Resources

In 2019, the Australian Digital Health Agency released a number of new resources, and we partnered with them to share them on our website and through social media. We also undertook a Consumer Survey – you can find the full report of our work here.

If you are using My Health Record, we recommenced you log in to take a look at your information and update your privacy settings. These brochures provide further information on how to use your My Health Record now that it has been set up.

How can I find out more?

Check out these Frequently Asked Questions

Please email us if you have any concerns regarding the My Health Record and we will ensure you are given access to the information you need.


Empowering Consumers with Disabilities

 

Resource list for people living with a disability (plus associated needs) and their carers, family and friends

HCC partnered with People With disabilities WA to deliver a project which examined health literacy materials and put them to the test of disability friendliness. The project delivered nine training sessions on Disability Health Rights for people with disabilities, and their carers, family and support people. Topics covered included: rights, ideas for getting better care, where to go for help, medical records and information sharing, and navigating the health system.

A series of booklets and videos were produced for this project, and are linked below. Working group members also shared their views on how health services could engage more with people with disabilities at this blog article:

Plain English

Easy-read

Plain-text (screen-reader compatible)

Videos 

 

 

 

 

 

 


Feedback Processes

In 2020, Health Consumers’ Council (HCC) worked with the Patient Safety Surveillance Unit in the Department of Health to learn more about how consumer feedback – including complaints and compliments – is collected, provided, and used for improving health services. We held a number of workshops with consumers and we also held telephone interviews with some consumers in regional areas. We held targeted sessions for Aboriginal community members, and Consumers of Mental Health WA ran a targeted session for consumer of mental health services.

Click to see issues, barriers and ideals from this consultation

Care Opinion

In 2020 the Patient Opinion platform, an independent, moderated place for people to provide feedback, was renamed to Care Opinion. This platform is now one portal for people to provide feedback on health and social services. It mirrors the same platform available in the UK, which uses the power of story to transform health and human services.

A non-profit organisation moderates the platform, and services subscribe to be able to receive notifications, reports etc. WA is the first state to have every public hospital as a subscriber. You can find out more or post a story here.

WA Health Complaint Policy Review

The Department of Health (DoH) consulted on a revised version of the WA Complaints Management Policy and these new versions appear below. We undertook a series of consultations to support the work survey and have collated this feedback.

WA Health Review of the complaints and feedback process

Following on from this consultation and the release of the new complaints guidelines, DoH consulted about the process of making a complaint and giving feedback. We heard about the many barriers to giving feedback, including concerns about what might happen to the feedback. This was especially prominent in the discussions we had with Aboriginal people. It was also raised that there is no easy way to give feedback about the whole system, not just one health service.

Read the full report here

 

Informing New Models of Primary Care 2017

Informing New Models of Primary Care was a 6 month collaborative project between the WA Primary Health Network (WAPHA), Health Consumers’ Council, and Curtin University undertaken in 2017. Primary Care refers to the care you receive from your GP and other health care providers outside of the hospital system. WAPHA is supported by funding from the Australian Government under the nation’s Primary Health Network Program.

Prior to this project being established, WAPHA and Curtin undertook consultations with general practice staff to inform how care can best be provided to people to keep them well and out of hospital as much as possible.

Informing New Models of Primary Care project was the second stage, and HCC worked with WAPHA and Curtin but this time focusing on the experience of people who access GP services. It involved convening a series of focus groups with people with multiple chronic health conditions with management under a Care Plan. Findings of these discussions have been compiled in the  Naive Inquiry Brochure and were shared with the community at a community forum held on 1st December 2017. This forum provided an opportunity to further the conversation on the developing models of care.

Medical Devices

Have you seen the Netflix Documentary The Bleeding Edge? In not, watch it now…

The day before the National Mesh Forum, which was convened on 5th April 2019 by the Health Consumers Councils across Australia and funded by state health departments, the Therapeutic Goods Administration (TGA) released Action Plan for Medical Devices. This was discussed at the Forum and is the culmination of some months work, but health consumers councils were not included in its development.

Strategies on the Plan:

Strategy 1
Improve how new devices get on the market
Strategy 2
Strengthen monitoring and follow-up of devices already in use
Strategy 3
Provide more information to patients about the devices they use

If there’s one thing consumers need to know…

Devices do not need to have as much evidence behind them as medications in order to be listed with the TGA. This is in part reflects the assumption that there is a detailed consent conversation between patients and their surgeons. We would urge all people to think of any procedure requiring any implanted medical device as an experimental treatment, and consent with that level of attention and care.

In essence, medical device companies assure TGA of the safety of their devices. It is a highly competitive and lucrative market, every bit as powerful as pharma, or perhaps more so. Post-market testing is supposed to occur, noting when complications occur and ensuring the TGA are aware. This doesn’t happen as much as it needs to, and is not compulsory for surgeons, although it is for medical device companies. Technically the TGA can prosecute medical device companies who don’t advise of complications but in practice this happens rarely.

Again, we recommend you watch the Bleeding Edge Documentary to understand more and what’s at stake for patient safety.

Bleeding Edge Documentary

America has the most technologically advanced health care system in the world, yet medical interventions have become the third leading cause of death, and the overwhelming majority of high-risk implanted devices never require a single clinical trial.

In The Bleeding Edge, Academy Award nominated filmmakers Kirby Dick and Amy Ziering (The Invisible WarThe Hunting Ground) turn their sights on the $400 billion medical device industry, examining lax regulations, corporate cover-ups, and profit driven incentives that put patients at risk daily.

Across the globe there is an investigation underway by the International Consortium of Investigative Journalists about how medical devices are listed on the different jurisdiction’s list of approved devices. Called The Implant Files, the Consortium’s website provides latest news and updates in relation to implants.

The Health Consumers’ Council in WA recently noted the implications for how devices are put onto our Therapeutic Goods Administration (TGA) list through the work done on the Pelvic Mesh Inquiry held in 2017-18. In summary, the TGA often relies on slim evidence from other jurisdictions to approve a device, and whether there are any reports of post implant complications to confirm a device’s safety. However, reporting complications is not compulsory, and very often, clinicians don’t. They may not be aware that there is a trend, thinking “it’s only this one person, so is it relevant?” or for whatever reason, they don’t report.  Consumers can report faults in implants they have had put into their body, if they know there is a place to do so on the TGA website, and if they know the serial number of the device. In other words, this is also not likely.

There is no easy way of knowing which human being has which implant, as there are only registers for certain kinds of devices, and records are often not digitised or easily shareable for it to be easy to do a product recall. It should be like doing an airbag recall for your car, but it isn’t.

The Health Issues Centre in Victoria has begun an anonymous survey for consumers who think they may have been impacted by implants, which you can complete by clicking on this link. Hernia mesh has already emerged as one of the leading implants causing pain and suffering for patients.


Mesh Implants

A GLOBAL HEALTH CRISIS – PELVIC MESH IMPLANTS

It has taken some time for the scale and extent of the impact of pelvic mesh implants for women to treat stress urinary incontinence and pelvic organ prolapse. Once hailed as the perfect solution for an enduring surgical fix for these non-life-threatening conditions, it has left a swathe of women with permanent, life altering consequences. Persistent pelvic pain at rest. Inability to have sex. Inability to continue working, and the financial impact often amplified by failed marriages as the lack of intimacy took its toll. The full list of complications is listed on the Therapeutic Goods Administration mesh hub.

In 2017 Australia undertook a Senate Inquiry – entitled Number of women in Australia who have had transvaginal mesh implants and related matters. We literally did not know how many women had been impacted. There were 13 recommendations in the final report, with a mix of federal and state responsibilities to effect implementation. There was even one on effective informed consent processes. It was clear from submissions and hearings that women were not informed about the potential horrific consequences of their choice, and that the mesh is extremely complex to remove. With the divide of responsibility between state and federal governments and the fact that most of the implant surgeries were performed in private hospitals, it is difficult to track real progress. Some meshes have been banned from use, but by no means all. Many women are still unaware that their sequelae of symptoms are related to their mesh implants. GPs and specialists may also be unaware.

WA PELVIC MESH SUPPORT GROUP

The peer support group the WA Pelvic Mesh Support Group has its own website and is an essential stakeholder in WA’s response to the mesh crisis.

WA PELVIC MESH COMPLICATIONS CLINIC

This clinic has been set up in King Edward Memorial Hospital and has been operating since 2017. There is a committee of clinicians and consumers who meet to discuss the clinic’s model and progress, as this area is complex and changing. The committee continues to aim to advance the recommendations of the Inquiry.

UNFINISHED BUSINESS – A NATIONAL FORUM ON THE IMPACT OF MESH IMPLANTS

A National Mesh Implant Forum was held in Melbourne on Friday April 5, 2019, to consider all aspects of Australia’s mesh implant crisis. The Forum was proudly convened by the Health Issues Centre and Health Consumers NSW, Health Consumers Queensland, Health Consumers’ Council (WA), Health Consumers Alliance of South Australia, Health Care Consumers (ACT), Health Consumers Tasmania.

The event brought together mesh injured consumers, carers, regulatory authorities, health officials, the Chair of the Senate Inquiry into mesh and consumer advocates to create solutions and bring about real change. The forum considered not only the impact of pelvic mesh, but the emerging parallel crisis involving people who have received hernia mesh implants. A full report is available here.

NEW REPORT – HERNIA MESH IMPLANTS – CONSUMER SURVEY

Health Issues Centre Victoria initiated the Mesh Device and Implant Failure study late last year and of the respondents, a sizeable 183 patients have already reported major problems with their hernia mesh implants. 70 per cent of these are men. You can read the report here.

According to publicly available figures nearly 100,000 Australians are hospitalised for hernia each year. However, the numbers of patients that go on to have pelvic mesh implants and that are negatively impacted is not known. People who would like to report complications of hernia procedures using mesh can complete the survey here.

PELVIC MESH FAQs

What is pelvic mesh?

Pelvic Mesh refers to polypropylene mesh implants to treat women treated for stress urinary incontinence or pelvic organ prolapse.

What are the complications of pelvic mesh?

Complications include pain, inflammatary reactions to the mesh, persistent infections, bleeding, with the mesh kinking, moving or migrating and causing damage to surrounding organs.

The actual number of women who experience complications may be under-reported, so while some women experience the benefits from implants, other women experience any or all of these complications as they are  listed below from Australia’s Therapeutic Goods Administration (TGA) website: https://www.tga.gov.au/alert/urogynaecological-surgical-mesh-complications

-punctures or lacerations of vessels, nerves, structures or organs, including the bladder, urethra or bowel (these may require surgical repair

-transitory local irritation at the wound site

-a ‘foreign body response’ (wound breakdown, extrusion, erosion, exposure, fistula formation and/or inflammation)

-mesh extrusion, exposure, or erosion into the vagina or other structures or organs

-as with all foreign bodies, mesh may potentiate an existing infection

-over-correction (too much tension applied to the tape) may cause temporary or permanent lower urinary tract obstruction

-acute and/or chronic pain

-voiding dysfunction

-pain during intercourse

-neuromuscular problems including acute and/or chronic pain in the groin, thigh, leg, pelvic and/or abdominal area

-recurrence of incontinence

-bleeding including haemorrhage, or haematoma

-seroma

-urge incontinence

-urinary frequency

-urinary retention

-adhesion formation

-atypical vaginal discharge

-exposed mesh may cause pain or discomfort to the patient’s partner during intercourse

-mesh migration

-allergic reaction

-abscess

-swelling around the wound site

-recurrent prolapse

-contracture

-scarring

-excessive contraction or shrinkage of the tissue surrounding the mesh

-vaginal scarring, tightening and/or shortening

-constipation/defecation dysfunction

-granulation tissue formation.

I've been told that it is a new type of mesh, or that it's a sling. Is this the same?

Mesh, tape, sling - it is all polypropylene mesh. It is a complex area and rapidly changing so clinicians may not be aware that they are in essence, all the same. If you don't want mesh, you have the right to request native tissue repair or a procedure like a Burch colposuspension. It is your body and you need to feel confident you are providing informed consent.

What are the alternatives to using mesh for incontinence and prolapse?

Non-surgical options includes physiotherapy and pessaries. Surgery should be considered a last resort when all other options have been exhausted.

There are surgical options which don't include mesh such as Native Tissue Repair and Burch Colposuspension. Have a look at the Australian Commission on Safety and Quality in Healthcare's resources on this page for Pelvic Organ Prolapse and Stress Urinary Incontinence and remember the key advice that surgery should be the last resort when all other options have been exhausted.

You will be the one who will bear the consequences if you do have complications from the mesh, so it's important that you provide informed consent. The Choosing Wisely campaign has created these questions to help you get started. http://www.choosingwisely.org.au/resources/consumers/5-questions-to-ask-your-doctor - plus it is useful to ask how many of the same procedures your surgeon has done, and what the outcomes have been. Any reluctance to answer this question may signal you have not found the right surgeon for you.

Is mesh banned?

No it is not banned. It has been banned for some, but not all types of pelvic organ prolapse surgery, but for the most common surgery, stress urinary incontinence, it has not been banned. From 1 December 2018, all new  surgical mesh devices seeking approval from the TGA will need to meet the higher evidentiary requirements of a Class III medical device. This does not apply to mesh devices already on the TGA register however.

Can I get the mesh taken out?

It is very difficult to fully remove mesh. Women are offered partial removals of mesh, for example snipping of the part protruding through the vaginal wall. Many women do not want partial removals as the remaining mesh frays and causes ongoing issues, and it may be more difficult to get the rest of the mesh out. Some women have taken the decision to self-fund and travel overseas to where other surgeons more experienced in full mesh removal may be able to provide assistance. We are continuing to work on this as a nation and the options are continually evolving. The WA Pelvic Mesh Support Group  can be an important source of support to find out latest options, or you can call the Health Consumers Council on 9221 3422/ 1800 620 780 for country callers, or email info@hconc.org.au

What help is available for women?
  • You can call the WA Pelvic Mesh Clinic line at King Edward Hospital on 1800 962 202. This is answered from 8.30-4pm Monday to Friday, with a Message Bank for after hours or when the line is busy. The person answering the phone is not a doctor, nurse or midwife. You will be linked with the Mesh Clinic for an appointment if appropriate. Unfortunately there are currently long waiting times for appointments.
  • In WA there is the WA Pelvic Mesh Support Group which can connect you with women who have had these procedures
  • Take this information sheet to your trusted health provider to discuss your current or future options
What has been done about regulating mesh?

The Therapeutic Goods Administration  (TGA) regulates medications and medical devices. However, the evidence required to register a device is by no means as comprehensive as that required to register a medication.

What can I do to report complications?

You can register your complications on The Therapeutic Goods Administration (TGA) website here: https://www.tga.gov.au/alert/urogynaecological-surgical-mesh-complications

You can also call the Mesh Line if you are in WA on 1800 962 202

What happened about the Senate Inquiry into mesh?

A Senate Inquiry into pelvic mesh was held in 2017, and the Recommendations have largely been accepted by our nation's Health Minister, who apologised to women harmed by mesh implants. They are currently in the early stages of being implemented, and health consumer councils across Australia are working with key bodies to ensure that there is a more consistent approach across Australia.

What about hernia mesh?

Hernia mesh is emerging as the next key area of interest. The complications are very similar, as is the negative impact on people, and the difficulties they can face in getting help. A new peer group has been started in WA - Mesh Too Western Australia.


Organ & Tissue Donation

Health Consumers’ Council received a 2021 Community Awareness Grant from the Organ and Tissue Authority to undertake a project aimed at empowering Western Australians to increase their knowledge of the benefits of organ and tissue donation and transplantation, to encourage family discussion and know each other’s donation decisions, and to register online on the Australian Organ Donor Register.

We want West Australians to be able to make informed decisions about organ and tissue donation, and that means ensuring they can access the right resources to help them make the decision, register, and have that conversation with their family.

Our focus is on increasing awareness and encouraging conversation among Aboriginal people and people from Culturally and Linguistically Diverse backgrounds. We look forward to hosting community conversation over the coming months to learn more about what the community already knows about organ and tissue donation, what they’d like to know, and what resources would be most beneficial for them.

If you are interested in the insights from these community conversations, please send an email to info@hconc.org.au

Did you know?

Right now in Australia, there are about 13 million people eligible to register as organ and tissue donors, but they haven’t signed up.

The HCC team proudly took part in The Great Registration Race for DonateLife Week from 25 July – 1 August, to help turn this around. We’re encouraging everyone to check if you’re registered at https://www.donatelife.gov.au/join-register

You can find DonateLife multicultural and faith resources here and Aboriginal and Torres Strait Islander resources here.

You can also read our DonateLife Week media release.