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Senate Inquiry into Pelvic Mesh – A Scandal of International Proportions

On Wednesday 28th March, one day late, the Senate Inquiry into the “Number of women in Australia who have had transvaginal mesh implants and related matters” handed down is final report. The Senate Inquiry was championed by Derryn Hinch, who called pelvic mesh “the biggest medical scandal for Australian women since thalidomide in the 1950s and 1960s, when kids were born without arms and legs”.

Derryn Hinch had listened to the voices of the Australian Pelvic Mesh Support Group women who campaigned tirelessly to be heard. He was able to get the Senate Inquiry convened, and the hope  was that the Senate Inquiry would raise awareness of the permanent, life-altering consequences for some women and call for a ban on its use. However, instead of a ban on the use of mesh, the Inquiry has recommended that mesh only be used “as a last resort”. This Media Release from the Australian Pelvic Mesh Support Group outlines the view of the women across Australia who have suffered permanent, life-altering consequences of pelvic mesh to the Inquiry Report:

There are a few glimmers of hope for mesh-injured women in the report – but the wording used in the recommendations are so weak that it could, if not followed up by robust policy change, give Australian health authorities, specialists and primary carers permission to carry on as usual.

This article summarises the Inquiry Report and highlights the critical importance of always asking the questions you need to provide informed consent. It is simplistic to say that your doctor only has your best interests at heart. There are many other factors at play, as this pelvic mesh scandal has shown.

Complications

Chapter Two of the Inquiry’s Report is a must-read. It documents women’s experiences of complications from mesh implants, compounded by an inability or unwillingness of the medical profession to hear and respond to these reports. At great personal cost, women attended the Senate Inquiry hearings to tell their story:

I presented with mild stress incontinence with exercising and 2 years on I have total and uncontrollable urinary incontinence. I have had multiple hospital admissions, surgeries, invasive investigations and a total loss of my pride as a woman. Name withheld, Submission 458, p. [6].

I dragged myself to work each day and on weekends I was bedridden. I was unable to do normal things like shopping, cooking and housework without debilitating pain and fatigue. My relationship with my family, friends suffered as I could not handle social activities. Not being able to care for my new grandson broke my heart. Surfing was impossible and walking the dogs or doing other light physical exercise was just too painful. Name withheld, Submission 67, p. 1.

To this day, women will still be told “it’s not the mesh” by their GPs and specialists. Even by clinicians working in Mesh Clinics.

Consent

Does it seem peculiar that a Senate Inquiry would spell out the process for ensuring that patients provide informed consent to having a procedure? And yet that is exactly what Recommendation 6 addresses:

The committee recommends that the Australian Commission on Safety and Quality in Health Care prepare guidance material on effective informed consent processes, with a view to ensuring that a dialogue between a medical practitioner and patient should:

  • clarify the rationale for the proposed treatment;
  • discuss the range of alternate treatment options available and their attendant risks and benefits;
  • discuss the likely success and potential complications of the recommended treatment as they relate to the individual patient;
  • provide an opportunity for the patient to ask questions; and
  • confirm that the individual patient has understood the information discussed.

Here is one consent conversation, which was echoed in many of the submissions and evidence given to the Senate Inquiry:

I was told by my implanting surgeon that I would be back at the gym within 10 days post implant procedure and that I would be like a 16-year-old virgin after the implants. Committee Hansard, 18 September 2017, p. 1.

And many other women simply do not know they have been implanted with mesh. Here is another, common reflection from a woman in a submission to the Inquiry:

How can I have not known a foreign medical device had been implanted in my body without my consent? Name withheld, Submission 528, p. [1]

Reporting complications

There are key barriers to the reporting of complications:

1) it is not mandatory for clinicians to report complications:

…based on my experience and that of many other women in this town, I would not trust surgeons to report complications or gather accurate research data. We all have similar stories of complications, including crippling pain and terrible bowel and bladder symptoms, which were trivialised or denied, and we were told we were the only one with an adverse outcome, that it was our fault that our body had reacted to the mesh. We were abandoned by our surgeon and left to cope as best we could. Kathryn, Committee Hansard, 19 September 2017, p. 4.

2) women are simply not believed when they report complications:

The problem is acknowledging the symptoms in the first place, though. There are a lot of GPs who won’t acknowledge it and there are a lot of gynaecologists who won’t acknowledge it… How can they report it if they’re not acknowledging that your pain and complications are from your mesh? Carolyn Chisholm, Committee Hansard, 25 August 2017, p. 9.

3) it is a complex non-consumer friendly process, requiring the serial number of the mesh implant, which most women won’t have without getting their medical records, which may no longer be available:

Although I am interested in reporting the adverse events I have experienced to the TGA, the TGA Users Medical Device Incident Report is daunting and I simply do not have the detailed information they request for device identification… I have encountered obstacles in trying to obtain my medical records. Name withheld, Submission 477, p. 3.

Medical Device Companies – driving uptake

Prior to my involvement in this issue, I had no idea that medical device companies are the bodies that train clinicians in how to use them. Effectively, they can drive demand for their own product:

The sponsoring companies actively promote medical specialists who utilise their products to referring GPs and company-sponsored educational activities, where one of the aims of that activity is to increase utilisation of those products. Sponsoring companies are also actively involved in the education and provision of training to
medical specialists. Associate Professor Christopher Maher, Committee Hansard, 19 September 2017, p. 30.

What about women who have been injured by mesh?

Every aspect of women’s lives are impacted when there are severe complications. Inability to work means significant economic disadvantage. Sexual dysfunction can mean the end of a relationship. Pain robs life of its quality. Accessing medical assistance is hugely problematic when there is a lack of acceptance that the symptoms are related to mesh, and the lack of actual services. Mesh removal services are very patchy, and some women were advised that mesh removal would mean a colostomy for life. Women have voted with their feet and travelled to the US to access specialist mesh removal care which has not resulted in this awful choice between removal and a functioning bowel. The surgery is significant and the outcomes are uncertain. There is no guarantee the debilitating pain will cease once the mesh is removed.

The final Recommendation tries to address the range of impacts on women:

Recommendation 13: The committee recommends that State and Territory governments continue to work with the Australian Commission on Safety and Quality in Health Care to review the provision of services for the use and removal of transvaginal mesh devices. In particular, the committee recommends that consideration be given to the establishment of:

  • information and helplines that women who have received transvaginal mesh implants can contact for advice on the availability of treatment and support services, including financial support programs, in their state;
  • specialist counselling programs, to assist women who have sustained injuries following transvaginal mesh procedures;
  • specialist multidisciplinary units for the assessment and management of complications associated with transvaginal mesh procedures, comprising:
    • comprehensive diagnostic procedures, including relevant diagnostic imaging facilities and expertise;
    • specialist pain management expertise; and
    • high level expertise in the partial or full removal of transvaginal mesh;
  • advice and practical assistance for women who are seeking to access their medical records

The Health Consumers’ Council of WA is aware that many women impacted by mesh implants are seeking full removals, not partial removals. The reality is at present that there are few surgeons, if any, who can perform full removals in Australia. Women have completely lost trust in the clinicians who implanted them in the first place now assuring them that the mesh will be fully removed. Since the Inquiry has finished, we are aware of women who have sought imaging after enduring full removal procedures only to discover there is still mesh inside them.

Western Australia

Women in Western Australia are referred to this page on the Health Consumers Council website for up to date information. This is an area which is rapidly changing. Please contact HCC on 9221 3422 during office hours if further support is required.

Written by Pip Brennan, Executive Director of the Health Consumers’ Council (WA) Inc.

 

Health Consumer Excellence Award Nominations 2019

Nominate for the Health Consumer Excellence Awards 2019

Due to an overwhelming response, we are opening nominations for the 2019, Health Consumer Excellence Awards NOW. They will close by 31st March 2019.  

The Health Consumers Council Excellence Awards were created to honour the everyday heroes in health in WA, from the administrator to the clinician. We also recognise health consumers who go out of their way to make a difference to our health system. Winners and Finalists are announced at the Awards Ceremony held during Patient Experience Week, the last week in April.  All nominators and nominees are invited to this event.
We accept awards in the following categories:

Health Organisation Award

This category is for health organisations working effectively with consumers to improve services. The Award recognises health organisations that demonstrate an ongoing partnership with health consumers to improve health outcomes and the patient experience.

Health Professional Award

This category is for health professionals demonstrating excellence in patient care. The Award recognises health professionals who demonstrate ongoing commitment to improving health outcomes and/or the patient experience.

Health Consumer Award

This category is for consumers demonstrating excellence in contributing to the improvement of the patient experience.  The Award recognises a health consumer who demonstrates commitment to improving health outcomes and/or the patient experience.

Rosemary Caithness Award

This award is for either a consumer or service provider and acknowledges outstanding service to health consumers. This award is highly selective and typically the recipient has supported health consumers over many years. The Health Consumers’ Council will only award the Rosemary Caithness Award should there be a worthy recipient in any given year.

Aboriginal and Torres Strait Islander Award

This award is to acknowledge outstanding service to Aboriginal/Torres Strait Islander health consumers. The candidates can be an Aboriginal/Torres Strait Islander person or organisation. They can be a health professional, consumer, other individual or organisation.

Compassionate Care Award

This award is to acknowledge people providing direct patient care who demonstrate compassion. We are looking for compassionate individuals working in any capacity in the health service or organisation. We are also looking for compassionate teams of health care providers who demonstrate effective multi-disciplinary care. Evidence of compassionate care in the form of feedback letters from consumers and cares will strengthen the nomination.

To nominate, click here

  • If you are an individual community member making a nomination, please complete questions 1-11
  • If you are an organisation or health professional making a nomination, please complete questions 12- 22
All nominations must be made via the online form. To assist with preparing applications Word versions of the nomination have been made available in the following links:
PLEASE NOTE: Only one representative from each organisation/ service provider is permitted to nominate
If you require assistance, please contact our office on (08) 9221 3422

Winner of the Health Consumer Excellence Awards 2018

Winners and Finalists for 2018 were announced on Friday 27th April 2018.

Health Organisation Award

This category is for working effectively with consumers to improve services. The Award recognises health organisations that demonstrate an ongoing partnership with health consumers to improve health outcomes and the patient experience.

Finalists:

  • Bentley Pet Therapy Program
  • Drug and Alcohol Withdrawal Network

WINNER: WA Cervical Cancer Prevention Program

Click here to see all the Health Organisation Award nominees for 2018

Health Professional Award

This category is for demonstrating excellence in patient care. The Award recognises health professionals who demonstrate ongoing commitment to improving health outcomes and/or the patient experience.

Finalists:

  • Hans Grobelaar
  • Melissa Vernon

WINNER: Andrew Davies

Click here to see all the Health Professional Award nominees for 2018

Health Consumer Award

This category is for demonstrating excellence in contributing to the improvement of the patient experience.  The Award recognises a health consumer who demonstrates commitment to improving health outcomes and/or the patient experience.

Finalists:

  • Debra Letica
  • James Stockwell

WINNER: Antonella Segre

Click here to see the Health Consumer Award nominees for 2018

Rosemary Caithness Award

This award is to acknowledge outstanding service to health consumers. This award is highly selective and typically the recipient has supported health consumers over many years. The Health Consumers’ Council will only award the Rosemary Caithness Award should there be a worthy recipient in any given year.

Finalists:

  • Antonella Segre and Connect Groups
  • Melissa Vernon

WINNER: Andrew Davies

Click here to see the Rosemary Caithness Award nominees for 2018

Aboriginal/Torres Strait Islander Health Award

This award is to acknowledge outstanding service to Aboriginal/Torres Strait Islander health consumers. The candidates can be an Aboriginal/Torres Strait Islander person or organisation. They can be a health professional, consumer, other individual or organisation.

Finalists:

  • WA Cervical Cancer Prevention Program
  • Peter Humphries and Natasha Garlett, L.I.F.E. Program

WINNER: Leah Bonson

Click here to see the Aboriginal and Torres Strait Islander Award nominees for 2018

Compassionate Care Award – Sponsored by the WA Department of Health

This award is to acknowledge people providing direct patient care who demonstrate compassion. We are looking for compassionate individuals working in any capacity in the health service or organisation. We are also looking for compassionate teams of health care providers who demonstrate effective multi-disciplinary care. Evidence of compassionate care in the form of feedback letters from consumers and cares will strengthen the nomination.

Finalists:

  • Kerri Colegate
  • Jacqueline Pemberton

WINNER: Colleen McLevie

Click here to see the Compassionate Care Award nominees for 2018

Sustainable Health Review – Consumer View

Sustainable Health Review

WA’s Sustainable Health Review was announced in July 2017. It was couched in terms of an update of the Reid Review, which highlighted the need for infrastructure and preventative health projects. Before the Interim Report was released in February 2018 there was the following work undertaken:

  • Clinical and Consumer & Carer Reference Groups were convened
  • More than 350 submissions were received, many more than anticipated.
  • 19 Forums were convened, 12 of these were community forums. All the feedback from these are on this webpage – click on Public Submissions 2017.
  • There was also a report commissioned on person centred services addressing the interface between aged care, disability and mental health services which you can read here

 

  • The Interim Report has 12 Directions and 9 Recommendations, as well as Areas for Further Action. The Recommendations have been passed by Cabinet and are currently in progress.
  • A public survey was released and forums were held. These largely garnered responses from health service providers both within the system and not for profit sectors.
  • A Staff Survey was undertaken by Ernst Young which you can access here
  • The final report is due in December 2018.

HCC Consumer Engagement Project

Following the completion of the first round of public consultation in November 2017, the Department of Health and the Sustainable Health Review Panel recognised that the consumer voice had not been fully heard. Particular emphasis was placed on ensuring that the following hardly reached consumer segments were provided with further opportunities to engage and comment on the  Interim Report. These included:

  • Aboriginal health consumers
  • Culturally And Linguistically Diverse (CaLD) health consumers
  • Mental health consumers and their carers
  • People with disabilities and their carers
  • Aged and elderly populations and their carers
  • Young health consumers
  • LGBTIQ health consumers

As the State’s peak health consumer body, The Health Consumers Council was commissioned by the Department of Health to conduct additional targeted consumer engagement activities which would augment the large amount of input from service providers and their representatives. Marketing for Change was sub-contracted by the Health Consumers Council to support the work program. The Consumer and Carer Reference Group informed the strategy and directed responses to surveys to their constituents.

The key consumer engagement activities undertaken comprised of four key activity domains, namely:
1. Metro community conversations with Aboriginal and CaLD participants
2. Regional community conversations
3. A consumer survey distributed through key not for profits to target the other hardly reached communities
4. Web conferencing to regional consumers.

The data collected from these engagements was developed into this report for the Department of Health and the Sustainable Health Review Panel to inform its recommendations to government.

Pip Brennan, Executive Director, Health Consumers’ Council, Panel Member, Sustainable Health Review

Celebrating people who make a difference…

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

Your Say on Cancer WA

A recent state-wide survey shows that many people don’t know that 30 – 40% of cancer cases in WA are preventable. With almost 12, 000 Western Australians diagnosed with cancer every year, this is both shocking and heartbreaking.

 

This information comes from a report recently released by the Department of Health entitled Priorities and Preferences for Cancer Control in Western Australia

 

This report summarises responses to an online public consultation conducted last year on the seven cancers which have the greatest impact on the WA community and greatest opportunity for prevention: bowel, breast, cervical, lung, melanoma, prostate and oesophageal/stomach cancer. The report has revealed that a third of participants were unaware that much could be done to prevent cancer.  In particular, many people were not aware of the dietary risk factors for bowel cancer and that cervical cancer is almost entirely preventable.

 

A poor understanding of the preventability of cancer is not necessarily surprising as historically, much of the discussion about cancer in the community has focused on treatment, sometimes to the detriment of prevention messages.  However, it does highlight the potential for reducing the pain, anguish and cost associated with treating cancer.

 

The value of this new report is that, in seeking out community views on priorities and preferences for cancer control it has identified some clear areas for increased action in the immediate future, including: Increasing the number of Western Australians participating in the National Bowel Cancer Screening Program; Strengthening health promotion messages around recommended red meat intake; reducing processed meat consumption; reducing alcohol consumption; and reducing salt intake, as well as links between obesity and cancer risk; Working to raise the profile of cancer prevention and early detection; and Building on gains made in tackling harm caused by smoking, exposure to ultra violet radiation and asbestos, as well as exploring new and innovative programs to reach vulnerable groups and address emerging issues.

 

This is the first time the Chief Health Officer of WA has asked the community for feedback in a report and the first time (to my knowledge) an online forum has been used to gather community opinion on cancer prevention in WA. As a co-author on the report it was a privilege to bear witness to the frank, open and creative ideas for cancer prevention from our consultation participants.  We are very grateful for their input and the time they devoted to answering our questions.

 

The report was prepared in collaboration with a number of agencies including the Health Consumers’ Council WA, Cancer Council WA, Public Health Advocacy Institute of WA, Curtin University and WA Clinical Oncology Group.

 

To read more about the findings of the consultation and how the Department of Health is responding, you can access the full report here:

 

www.healthywa.wa.gov.au/~/media/Files/HealthyWA/Original/Your-say-on-cancer-wa/13009-chief-health-officer-report.ashx

 

As a project team we also had a lot of fun planning and putting together a consumer website with a range of supporting material including a summary of the report findings, some innovative infographics of cancer data, and expert videos.

 

Check out the website for yourselves here:

www.healthywa.wa.gov.au/yoursayoncancerwa

Guest Blogger: Dr Jennifer Girschik

Pap smear costs- a storm in a teacup?

The announcement slipped in easily enough just before Christmas. On December 15, in its mid-year budget update, the Federal Government announced that they would scrap the incentive payments for pathologists for bulk billing of tests, because the rate of bulk billing had not increased. In other words, the measure appeared to have failed.

This announcement reflects the work being undertaken in the Medicare Benefit Schedule (MBS) reform process which was established in April 2015. The MBS is a list of more than 5,500 item numbers against which medical practitioners can bill the federal government for payment. It is the basis of business models for public, private and not for profit health services. It includes clinical items as well as this type of incentive payment.

Queue then the entrance of the Royal College of Pathologists, and the Australian Medical Association. In other words, organisations whose bottom line is affected by this change. In some online and newspaper reports, figures were put on the cost to consumers of a pap smear  at around $30. On 6th January an article appeared on Mamma Mia’s website, and a petition about the cost of Pap Smears and pathology tests was launched by Change.org. Signatures are nudging very close to 150,000, and rising as this blog is being written. Yet the incentive payment being scrapped was in the region of $1.30-$1.40 according to the Federal Government. In the short discussion I just had with the media spokesperson for the College of Pathologists, the position of the College seems to be a reluctance to nominate an actual figure to be passed onto consumers. So is this an issue, or isn’t it?

I would venture to suggest that it is not. Change is always a difficult phenomenon to manage, and communication seems to have contributed to the backlash the Federal Government is experiencing. The real story is the reason behind the MBS Review and why it is so important for Australians that this happens. Here are some terrifying facts and figures about the MBS provided by our national body The Consumers Health Forum:

  • Until 1 January 2010, there was no clear process for adding new items to the MBS.
  • There was also no clear, consistent system for identifying and removing items from the MBS when they were no longer considered best practice or effective.
  • There was no consistent and formal process in place to test or review items already on the MBS, or new items coming onto it, to ensure they were doing what they were intended to do and were safe and cost effective.
  • Only three percent of items have been assessed for safety, effectiveness and cost-effectiveness. 

You read that right. Only three percent.

So the MBS Review team are carrying on their work, amidst the media cacophony. They are still very keen to hear from the community, but many people find the topic inaccessible and can fail to see how this may affect them. Perhaps this controversy will raise awareness of this enormous and much-needed reform currently unfolding. It is unfortunate that this Review is always going to get caught up in economic rationalist arguments and the undeniable need for our country to reduce its health costs. Public scrutiny will be important to ensure that the focus is on eradicating inefficiencies, duplication and waste rather than diminishing access to quality health services. But let’s ensure that this is a patient centred discussion, not a vested interest centred discussion.

Just before Christmas the MBS Review Taskforce released a new consultation has to look at obsolete MBS items, with feedback invited until 8th February 2016. If you are brave to work your way through the consultation documents, feel free to have your say.

Written by Pip Brennan, Executive Director of the Health Consumers’ Council of WA.