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Rebecca’s Story

By Rebecca

Throughout my twenties, I had heard story after story from some of my friends regarding the joys of growing older. Self-confidence. Self-assurance. Self-love. Caring less about the opinions of those who do not matter. Growing to appreciate those who do. I looked forward to entering my third decade.

Six weeks after my thirtieth birthday my world came crashing down.

Friday October 24, 2014 will be forever etched into my mind. It was a beautiful spring day. I happily woke up early with plans to go shopping with my best friend for her wedding dress. I did have an appointment scheduled with my GP later that day, but I decided I would cancel. I was convinced the MRI that I had two days before to investigate some odd seizure-like episodes would return with nothing out of the ordinary. I counted the minutes down until I could call to change my appointment.

However, the clinic receptionist called me before I could get to the phone. A courtesy call to ensure I was still coming in that afternoon, she said. As a former medical receptionist, I read between the lines. Something had been found.

I was diagnosed with a tennis ball sized Rosette Forming Glioneuroma of the Fourth Ventricle in the Cerebellum/Brain Stem area. The Radiologist who wrote the report had spoken to my doctor. An atypical appearing tumour – the like of which he had not seen before – had triggered his curiosity, leading to further investigation.

Understandably my neurosurgeon was frustrated that a Radiologist had taken the liberty to give his professional opinion without additional testing. Interestingly the biopsy taken during the resection confirmed the thoughts of the Radiologist.

Two weeks later I was admitted for a craniotomy that went for ten hours. The sheer size of the tumour, along with evidence of multiple bleeds within, had deemed surgery a priority. According to my parents I passed all tests with flying colours to the point my dad had
checked that the surgery had gone ahead.

Early the next morning, tragedy struck again. At six a.m I was rushed into emergency surgery as a result of a cardio-vascular accident (in simple terms, a stroke) in the same area. My family were alerted and asked to say their goodbyes. My life hung in the balance.

I was left completely paralysed, unable to speak, blind, and with vertigo so severe I could not move, look, or lay on the right for six months. My neurology team held little hope for my recovery. My parents were given information on having me admitted as a permanent
resident to a nursing home. On the delivery of the news that there were no expectations of recovery my mother dissolved into tears. My dad, a short placid man, yelled “YOU DON’T KNOW MY F***ING DAUGHTER” and stormed out of the meeting room taking my
inconsolable mum with him.

I spent approximately a month in ICU and was eventually moved to a Head Injury Rehabilitation Unit after my parents regularly refused to have me placed in a nursing home. Rehabilitation felt slow. Re-learning every single little thing again – from brushing my teeth to reading, to driving – was incredibly laborious.

Learning how to speak again was probably the most difficult. Not only did I have to learn to move my face and mouth correctly, pronunciation, intonation, and where to pause. When I am extremely fatigued, I begin to slur. I am often the last to hear it. My loved ones
know that is a sign I desperately need a nap.

I learned to how to write again after my support worker – a keen artist – and I had a chat about hand sewing. In my previous life, I was trained as a fashion designer. Sewing, knitting, crochet are some of my interests.

My rehabilitation continues to this day. Fatigue management is what myself and my Occupational Therapist are working on. Since the surgeries, I struggle with neurological fatigue. Chronic fatigue has been my constant companion for many years. Previously I was
able to manage it effectively, however, the combination of the two can keep me bedbound for weeks.

Therapy has been a fantastic addition to my rehabilitation especially as it deals with my grief. Losing every single little thing that made me, me has been the most traumatic of all. The moment my brain began to haemorrhage is the moment my life splintered into a million pieces. The future I had planned on was no longer attainable. Career – I was working in Oil and Gas construction – gone. Family – shattered. Relationship – destroyed. The emotional fallout on my loved ones is still evident now.

After the first MRI to check for regrowth, another blow fell. My neurosurgeon delivered the devastating news that the tumour was still present inside the Cerebellum. This time it was deemed inoperable. I remember thinking to myself this journey is a nightmare that will not
end. Two subsequent tumours have been located on the Brain Stem and also deemed inoperable.

Fortunately, the regular MRI’s have shown the tumours – Beryl, Meryl, and Cheryl – to have no evidence of regrowth. Due to the rare nature of the Rosette Forming Glioneuroma, there is no effective chemotherapy treatment available. My neurosurgeon is of the opinion
that radiation may not be effective and therefore better to not proceed in the unlikely event that the tumours mutate to Glioblastomas.

Thankfully after an incredible amount of hard work, practice, and tears, the physical deficits appear negligible. Those who have not known me before this journey have no idea that I have fought a horrendous battle. Nor do they realise that the war continues, and will forever continue.

I am currently studying to be a life coach. I speak to clinicians in the public health sector and share my story at neurological support groups around the State. I serve as Secretary on the Board of the Health Consumer Council (Western Australia).

It has been almost five years since my life irrevocably shattered into countless fragments. Much like the art and craft I enjoy so much, I am daily reconstructing those fragments into a masterpiece of my own creation. I will arise more formidable and more beautiful than I
was before.

Palliative Care – or Quality of Life Care?

By Pip Brennan, Health Consumers’ Council Executive Director

On Saturday 20th July I attended an event in the community, run by the Uniting Church on the Voluntary Assisted Dying Bill. One of the speakers was Emma-Jade Sanderson, who is the Chair of the Joint Select Committee on End of Life Choices. The My Life My Choices Report from this committee is a weighty 600 pages, and a 16-page summary of the report and the response from the current government is also available.

As we noted in pages 9-10 of our Autumn edition of Health Matters, there are divergent views on end of life choices. A key concern from disability advocate Sam Connor was the systemic discrimination of people with disabilities, and the plea to be assisted to live, before being assisted to die.

Our submission to the WA Voluntary Assisted Dying Legislation Consultation echoed this concern. We also noted that “In truth, VAD is going to be accessible to very few people.” What is going to make the most difference to the most West Australians we believe, is access to good quality palliative care.

It would be wonderful if palliative care had more positive community connotations – about living well, having choice and comfort from distressing symptoms.

So I took great heart from Amber-Jade Sanderson’s reflection that whenever there is a focus on voluntary assisted dying in any jurisdiction around the world, more focus and funding is put onto palliative care. And right now there are important opportunities to influence palliative care/ quality of life care.

Your opportunity to have a say on Palliative Care

Summit

On Saturday 24th August there is an important opportunity to have your say on palliative care. A summit is being convened at the Perth Convention and Exhibition Centre:

  • 7am Breakfast
  • 9am Summit

You can book for both (“with breakfast” option), or just for the Summit (“without breakfast”) option.

This is an opportunity to bring together everyone interested in the delivery of palliative care in Western Australia – Health professionals, general practitioners, palliative care specialists, health consumers and carers. It aims to shape how we put into practice Recommendations 7-18 of the My Life My Choices Report, the Palliative Care Strategy 2018 – 2028 and relevant Sustainable Health Review Report 2018 Recommendations. Attendees are encouraged to share their experiences to provide insight and influence the provision of high quality palliative care for all Western Australians. It is a partnership event with Palliative Care WA, WA Country Health Service, WA Primary Health Alliance, Palliative and Supportive Care Education and the Health Consumers’ Council of WA.

An additional session will be held by video conference from multiple sites across regional WA for those unable to travel to Perth on Monday 19 August from 10am to 1.00pm.

Please note that the registration form requires you to complete the job title and place of work. You can just complete “Consumer” or “Carer” for both Job Title and Company/ Organisation. For address you can complete your own address or write the words “Home Address” if you don’t want to complete this information. You can repeat your home number or mobile number for Work Phone.

Register Here

Survey

Whether or not you want to attend, you can have your say in this short survey – you can have a look at the questions here before you jump online and complete the survey.

Complete the survey here

 

 

Consumer, carer, family and community representative network

Health Consumers’ Council organise a number of networking events and workshops for people who are involved in the health system as a consumer, carer, family or community representative. We also host a Facebook group for representatives, as well as sending tailored emails and information.

Networking events

These sessions happen 2 times a year. The aims are to:

  • Provide an opportunity for consumer, carer, family or community reps and members to connect with other reps across the health system in WA
  • Hear updates on key issues in the health sector and from Health Consumers’ Council
  • Build capacity by including a facilitated learning opportunity

Upcoming events

To make sure you receive information about these sessions, sign up to the mailing list here

Stay connected – join our Facebook group and mailing list!

  • You can join the Source – Connect, Learn and Share Facebook page by being signed into Facebook and asking to join the group here
  • You can join the Consumer, carer, family and community rep mailing list here

Any questions?

If you’ve any questions about this network, contact Aimee Riddell at engagement@hconc.org.au

Media releases

Please find below statements released by Health Consumers’ Council.

We welcome contact from journalists on health and health consumer topics and are happy to provide information, interviews and quotes.

For media requests, please contact:

Executive Director | Clare.Mullen@hconc.org.au | 0488 701 839

or Marketing & Communications | TA.Fyson@hconc.org.au

18/03/25 Health Consumers’ Council welcomes new WA ministerial health team

17/11/23 Health Consumers’ Council WA welcomes increased COVID-19 health protections in hospitals

Health Consumers’ Council welcomes the return of COVID-19 health protections in hospitals as COVID-19 infections rise. We can all play a part in a healthy WA.

31/08/23 HCC welcomes mental health reforms

Health Consumers’ Council welcomes the State Government’s decision to elevate the voice of people with lived experience and consumers in how mental health services are designed, developed and overseen. We commend the Government’s decision to listen to people with lived experience, consumer advocates and others to retain current governance structures with a renewed focus on culture change, accountability and strong lived experience voices.

29/08/2022         Seeking multicultural cancer patients and carers to improve cancer information resources 

For State-wide, regional and rural WA especially, and men: Community consultations on the cancer information needs of culturally and linguistically diverse (CaLD) consumers and carers will be held for men, particularly 1st September, and all regional multicultural people 13th September 2022. There are no cancer resources or publications specifically for culturally and linguistically diverse (CaLD) patients or carers for Western Australian regional communities, men specifically. A consultation discussion project aims to start the process to change that. Health Consumers’ Council (HCC) WA is seeking multicultural, ethnically and linguistically diverse people in the State’s regional and rural areas, and men in particular across metro Perth, to discuss cancer information needs. HCC is specifically looking for CaLD people who have or had cancer – patients – or who are caring for, or cared for, a loved one with cancer to participate in discussions. Contact Nadeen@hconc.org.au  /read more…

 

 26/07/2021         Health Consumers’ Council joins The Great Registration Race for DonateLife Week

Health Consumers’ Council has 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.

27/11/2020          It’s time to change the way we speak about obesity

Health Consumers’ Council welcomes a new media and communications guide changing the narrative around obesity. Shift. A guide for media and communications professionals is a new communications tool that aims to work with media to influence better public perceptions of overweight and obesity.

29/11/2019          Duty of Care or Buyer Beware? TGA resonse to Shine class action decision

Despite the TGA’s most recent media release claiming progress in the battle for a just resolution to the pelvic mesh crisis, little has changed since the Senate Inquiry into Pelvic Mesh handed down its recommendations in 2018. Peak state Health consumer bodies spell out what still needs to be done.

22/11/2019             Vindicated! But justice deferred – Shine class action against Johnson & Johnson

Peak state Health Consumer bodies have welcomed the judgement vindicating the more than 1200 mesh injured women who participated in the Shine class action against Johnson & Johnson but reserved judgement on the outcome until the size of the final settlement is announced.

1/05/2019             Health Consumer Excellence Award winners announced 

Health Consumers’ Council (HCC) has honoured the everyday heroes in health with the annual Health Consumer Excellence Awards

10/04/2019          Health Consumers’ Council welcomes the Sustainable Health Review Final Report

Health Consumers’ Council (WA) Executive Director Pip Brennan welcomed the report and its recommendations, and said HCC was looking forward to working together with health staff, consumers, non-profit organisations, and the community at large to bring the strategies into action.

11/03/2019           Heritage Identification study published by the Medical Journal of Australia

As the peak advocacy body for patients’ rights in WA, Health Consumers’ Council was consulted during the study which formally documented the frequency of references to a patient’s cultural heritage during medical handover and in hospital medical records.

 

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. This issue of harm through implants is only growing in magnitude, and it is clear we need to overhaul of how we approve devices, and have a clear register of any high risk implant being put into a human body. There needs to be a clearer path for consumers to have the side effects of implants taken seriously, and a much more robust way of providing consent in the first place. This issue will be a focus for us in 2019.

Consumer Leaflet Feedback

Click here to read the draft Consumer Information on Mesh Complications

This draft leaflet has been produced by the Australian Commission of Safety and Quality in Health Services. What do you think?

Click here to take the short survey.

This survey has just one question to ask you to rate the leaflet and offering an opportunity to provide a comment.

Click here to take the DISCERN survey

This survey will take at least 15 minutes and uses a validated survey tool to review consumer information, called DISCERN. Organisations are authorised to reproduce The DISCERN Instrument without permission, provided it is used in accordance with the instructions contained in this website to ensure that its methodology is uniform. There are 16 questions over three sections: Reliability, Quality of information on choices, and Overall Rating.

The deadline for all feedback is 8th October. Please contact Pip Brennan pip.brennan@hconc.org.au or 08 9221 3422 if you have any questions.

Pregnancy and maternity care

Pregnancy and maternity care is a key systemic advocacy issue for Health Consumers’ Council. We believe that informed choices are paramount to safe maternal and newborn care, and that involving birthing people and families at all stages and at all levels is critical for improving maternity services.

Women and Babies Hospital

In April 2023, the Western Australian Minister for Health announced that the site of the new Women and Babies Hospital will be relocated to the Fiona Stanley Hospital (FSH) precinct.

Since that time, HCC has hosted a number of opportunities for consumer representatives to discuss and provide input on the plans for the new hospital to the WA Health team.

In summary, feedback provided has included:

  1. advocating for a range of consumer perspectives to be taken on board as plans are developed
  2. questions about how the new location will allow for tri-location of maternity, neonates, and adult services
  3. the lack of consumer involvement in decisions about priorities for services to be located at QEII
  4. the lack of information about the plan for the babies who need surgery immediately after birth, who may not be in a stable condition to travel the distance between the FSH precinct and Perth Children’s Hospital.
  5. concerns about the risks to infant and parent mental health – and the associated long-term impact of early childhood trauma – for families who may be separated when neonatal surgery is needed.
  6. concerns that the decision to relocate to the FSH precinct was made to avoid short-term disruption without considering the long-term impacts of the location for women and babies across WA.

Overall, there was general recognition that there is not an immediately obvious “easy” solution to these issues. HCC have advocated consistently for a range of consumers with diverse perspectives to be included to help to identify the issues and be part of the solution.

Despite this frustration there was strong interest in engaging with the process going forward, to enable consumer voices to be part of the deliberative process to reach the best possible solution for the WA community.

What’s next?

HCC will continue to advocate for consumer voices at all levels of decision making and continue to work with relevant government and health system parties to progress discussion about this issue.

To be kept informed about this work, email info@hconc.org.au

Previous projects

Read more about our previous projects in this area, such as the My Baby WA app, on our archived systemic work page.

Consumer Involvement in Policy and Services

We have a Facebook Group for women and families who would like to be more involved in helping shape maternity services. You can join this group here.

Click here for the Facebook Group

Partners in Change – Obesity Collaborative

Latest news – how you can be involved in shaping health services relating to overweight and obesity

Health Consumers’ Council is working with the WA Department of Health and the WA Primary Health Alliance on implementing the WA Healthy Weight Action Plan 2019 – 2024. (See below for how consumer input informed the plan that was launched in November 2019.)

We know that lots of people in the WA community have experience relating to the health issue of overweight and obesity (approximately 67% of adults and 25% of children). And we want to make sure that work on changing health services in this area is informed by those diverse experiences.

There are several ways you can stay in touch or get involved in this project.

  • We have formed a Consumer and Community Advisory Group, ensuring diverse perspectives and experiences are represented. The advisory group will provide a consumer perspective on a range of activities related to the implementation of the Healthy Weight Action Plan. However, we hope to make more targeted efforts to ensure we get perspectives on people living regionally, children/young people and families, people living in larger bodies, men, and Aboriginal people as we know people with different experiences are impacted in different ways. If you fit into any of the above target groups and want to get involved, please contact Clare Mullen at clare.mullen@hconc.org.au
  • There will be opportunities to share your story or experiences of using health services relating to overweight and obesity – sign up to our mailing list to hear about those opportunities as they arise
  • You can spread the word about this important topic by sharing our posts on social media – follow HCC’s main public Facebook page for updates and join our private moderated Facebook group Partners in Change – Healthy Life for Longer
  • There will be opportunities to be a community champion and take messages out about this work to your communities to broaden the consumer voice – sign up to our mailing list to hear about those opportunities as they arise
  • You can provide feedback by participating in online surveys and attending information sessions – sign up to our mailing list to hear about those opportunities as they arise. We have a survey we would love your input in: Weighing in on Weight Talk is a survey that will help us in developing guidelines for engaging people with overweight and obesity and inform health professionals on how to talk about weight. Also, our next community information session is planned for Wednesday 21 April – details coming soon.
  • You can attend forums and workshops to discuss specific topics relating to the Action Plan – again, sign up to our mailing list to hear about those opportunities as they arise

Upcoming community events

We will be holding consumer focus groups as part of the Curtin University’s Healthy Weight Action Plan Outcomes Framework project which will take place in early May. Click here to find out more and to register.

Previous community events

We held a community conversation around the draft National Preventative Health Strategy to help get consumer feedback on the Strategy so we can produce a submission with a consumer lens. The summary slides to help explain the Strategy can be found here and we encourage you to make your own submission to this consultation. The deadline for submissions is 19 April. The more community voices we can have in this space the better. For those who couldn’t attend the community conversation but would like to share any comments on the draft strategy, you can complete this survey.

The Obesity Collective hosted a 90-minute virtual event on World Obesity Day 2021 with expert speakers from across the country. This session explored many aspects of obesity through a series of ‘rapid talks’ from consumer organisations and health professionals. HCC’s Deputy Director Clare Mullen presented on involving people with lived experience in planning services. The recording of this event can be accessed here.

We held a community information session with Weight Issues Network and The Obesity Collective in February 2021 about how consumers and community members can get involved. We looked at how to speak up for better services for treating overweight and obesity and the importance of sharing our stories to influence change. The recording of the session can be accessed here.

A community information session in December 2020 provided an update on how consumer perspectives were influencing the implementation of the Healthy Weight Action Plan. You can view the slides here and a recording of the session can be accessed here.

At a community morning tea in October 2020, we met consumers and community members for an informal chat, and these three strong themes emerged:

· costs and accessibility of services

· clarity of information

· links around overweight and obesity with mental health and stigma.

Watch a video update on the implementation of the WA Healthy Weight Action Plan

Helen Mitchell from the Department of Health spoke at a recent virtual consumer representative drop-in session on how the HWAP was developed with consumer input, and how the Plan is starting to be implemented.

Get involved in the next steps

You can join a private Facebook Group here or join the email mailing list – we will continue to share information about opportunities for being involved as the plan moves into action.

If you’ve any questions about this project, contact clare.mullen@hconc.org.au or call reception on 9221 3422.

Healthy Weight Action Plan 2019-2024 implementation

The Minister for Health launched the WA Healthy Weight Action Plan 2019-2024 on Tuesday 26 November 2019.

Since 2018, Health Consumers’ Council (HCC) has been working in partnership with the Department of Health and the WA Primary Health Alliance (WAPHA) to ensure the consumer voice is front and centre of policy and service planning in this area.

Since the Minister launched the Action Plan, HCC staff have been working with the team at the Department of Health and WAPHA on the implementation of the plan.

There are a number of projects in the first phase of implementation:

  • WA Obesity Collaborative (Action 1.1) – initial discussions are taking in spring 2020 with people representing health services, policy makers and community. These questions will explore who impacts on overweight and obesity in the WA community and how a collaborative approach could have a positive impact. HCC staff with other community members will be attending to share the diverse feedback we heard from consumers about their experiences.
  • Developing quality indicators and an outcomes framework (Action 5.1) – a team at Curtin University are looking at how to develop a set of quality indicators and an outcomes framework to assess what is a quality health service in the area of overweight and obesity. Again, HCC staff have been involved in the development of this project, sharing insights from consumers received so far.
  • A pilot of an innovative approach trialling the use of total meal replacement products and telehealth support from allied health staff is being led by Diabetes WA – HCC organised a consumer workshop where consumers shared their experiences using these products and what they would find helpful in such a program. HCC staff are also involved in the project steering committee.
  • East Metropolitan Health Service have developed a media guide to support communications staff and journalists to change the narrative on obesity – this will be launched in the coming months. HCC had input into the draft document.
  • East Metropolitan Health Service are developing training for health professionals on how to talk about weight and what support services are available. HCC staff are providing feedback on the draft course.

If you’d like more information about any of these projects, contact Clare Mullen at clare.mullen@hconc.org.au

How consumer feedback shaped the Action Plan

HCC believe it is important that the conversations are informed by real experiences of people managing their weight. We sought feedback via a survey as well as holding face to face workshops and inviting people to tell us their stories of managing their weight online. Read a summary of the consumer engagement activities that informed the first phase of this project. HCC also hosted a Community Conversation in February 2019 to look at the work done to date by the Obesity Collaborative. Helen from the Department of Health gave an overview of how consumer input had informed the discussions at the Summit last year, and gave an update about the development of the draft strategies.

A bold plan for change

 

HCC believes the Action Plan outlines a plan that is not “business as usual” for the health system. We are particularly interested in the inclusion of the actions that recognise a new way of working is needed to really impact on this complex health issue. We look forward to the establishment of the WA Obesity Collaborative and the Community of Change that will provide platforms for people with lived experience, health professionals and policy makers to work together to take positive action.

Stories are powerful

Many people shared their stories of managing their weight with us. Some of these stories were included in the Obesity Collaborative – Partners in Change Summit which took place on 17 October 2018. Here is a copy of the presentation that HCC gave as part of the opening session.

Video 1 – Consumer and Carer Perspectives

Video 2 – Parents and Children’s Perspectives

We will continue to share people’s stories with people in the health system who are working to improve or develop policies or services that will support people to achieve their weight loss goals.

See what people have said in an online brainstorm

We used GroupMap which was set up so that people could anonymously share their feedback about their experiences and comment or like what other people had said.

  • View the online brainstorm here – when you first access the link you’ll be asked for your email address. That’s so that you can be sent the link to return and view it again at a later time.

Patient First

What is Patient First?

The Patient First program helps you to understand important aspects of your health care, before, during and after your hospital stay.

It includes information on the following topics:

  1. Knowing your rights and responsibilities
  2. Knowing that your health care is safe
  3. Making the right decisions for you
  4. Safe use of medicines
  5. Preventing falls, pressure sores and infections
  6. Recovering well
  7. Being prepared to go home

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.