Category: Blog

Rebecca’s Story

Posted on August 21, 2019

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?

Posted on July 24, 2019

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

 

 

Why am I here? Because Informed consent…

Posted on July 14, 2019

By Pip Brennan, Health Consumers’ Council Executive Director

This week, the I have the honour as the Health Consumers’ Council Executive Director to be guest tweeter on the Croakey @WePublicHealth page for the week of 15th July 2019.

For the first tweet I thought it only polite to introduce myself, and it got me to thinking again – why am I here? Why am I in this role? Why did I choose the topic of Informed Consent this week? In many ways informed consent is at the heart of most health complaints, and is a core part of why I believe in the importance of the work of the Health Consumers Council.

My passion for informed consent started from this GP conversation that happened to me and I would suspect pretty much every pregnant women in Australia:

GP: Congratulations, you’re pregnant! Do you have private health insurance?

Woman: Yes

GP: Which obstetrician would you like?

This is not an informed consent conversation. Why not? Because there is no mention of midwifery-led services here. There is no nuanced conversation about the evidence-based models of care that note that if you are low risk, you don’t actually need an obstetrician.

Like many people, my first real adult interaction with the health system was when I was pregnant. It really got me thinking, why is it so hard to access evidence-based models of care because they happen to be midwifery led? In my nearly twenty years as a consumer representative, I don’t believe this initial GP conversation has shifted in the way I hope it will in time.

I also think this type of conversation is by no means unique to maternity care, and that the path from the GP to a surgical specialist is short, with not enough detours past midwifery, nursing and allied health professionals. Not so long ago, my partner came off his bike and attended a GP. The advice was that it possibly was a full thickness rotator cuff tear in his shoulder, and surgery was required. However, the physiotherapist he went to noted it was a partial tear and gave him exercises. It healed beautifully over the next six to eight weeks without any need to trouble the surgeon.

Don’t get me wrong, I am very committed to the importance of having a really good GP that knows you over the course of your life, and here at the Health Consumers Council we regularly advise consumers to invest time in finding the right GP. I am very attached to my GP and she is a really key part of my wellness plan. But GPs are usually the gateway to the path of care we can travel, and it’s important that we choose the right care for our circumstances. The consumer always pays the ultimate price for their own health care choices.

Twenty years ago, after much research and some very good luck at stumbling across a birthing centre in a local hospital, plus the grace of everything going well on the day, I was able to have the drug free delivery I was hoping for. I have never forgotten the day my daughter was born. The medical and midwifery staff would have gone home at the end of the shift and likely not given it another thought.

In short, informed consent is a fundamental consumer right. And to exercise that right, we need to know that a) it’s OK to ask questions, and b) it’s also OK to say “can I think about this” or even “no” to suggested treatments.

Pip Brennan is Executive Director of the Health Consumers Council in WA, and independent, not for profit organisation dedicated to ensuring the consumer voice is at the heart of health policy, service planning and review. Pip has worked in the community sector for the last 18 years. Inspired by her own experiences of the confusing maternity care system, Pip initially volunteered as a maternity consumer representative in a range of roles. She began her paid health career as an Advocate working at the Health Consumers’ Council (HCC) from 2006. She has been a conciliator of health complaints, a health NGO professional and always a firm believer in the value of consumers being at the table. She took on the role of Executive Director of the Health Consumers Council in WA from 2015 and was a panel member on the state’s recent Sustainable Health Review.

A day at HCC

Posted on February 1, 2019

Early in January, a Graduate Project Officer from the WA Department of Health Graduate Development Program spent half a day in our offices, shadowing HCC director Pip Brennan. Emily had the opportunity to talk to our engagement and advocacy teams, and learn more about how our organisation works, giving her a better understanding of how HCC advocates for consumers and how HCC operates at a high level. 

“Meeting the Individual Advocacy team was a unique experience,” Emily said.

“I learnt how such services are provided and how the tireless work of the HCC advocates brings about life changing outcomes for consumers. Being an individual advocate proves to be a diverse and rewarding role, as each consumer’s case is unique.”

Being passionate about social justice and advocacy herself, Emily said the idea of collaborating with consumers to reach the best possible outcome was inspiring.

“It was wonderful to see that the voice of consumers is being heard and action is being taken accordingly.”

The highlight of Emily’s shadowing opportunity was sitting in on a meeting with director Pip Brennan and Engagement Manager Clare Mullen. The planning and brainstorming processes she observed focused on future events and initiatives.  

“It was inspiring to see such passion be incorporated into planning and I admired the way Pip and Clare encouraged creative thinking.”

Emily’s shared the key learnings she gained from the experienced.

“Understanding a situation or proposal from a range of perspectives is essential to the success of an idea,” she said.

“Forming mutual respect and creating positive relationships with stakeholders results in enhanced collaboration and ultimately better outcomes for all.”

Her third takeaway was acknowledging that there is a lot of good will and grand efforts being undertaken by people across the health sector.

“It can be easy to forget the good amongst negative headlines and situations; however, in order to ensure good things continue to be undertaken it is important to recognise people’s efforts and motivate them to continue,” Emily said.

HCC would like to thank Emily for her time and hope that the opportunity to learn about HCC’s consumer advocacy and our operations were beneficial to her future career in health.

Reflections of a Health Consumer Advocate on Social Marketing

Posted on December 19, 2018

By Pip Brennan, Health Consumers’ Council Executive Director

Change 2018 Conference, Griffith University

social marketing [is defined] as “the application of proven concepts and techniques drawn from the commercial sector to promote changes in diverse socially important behaviors such as drug use, smoking, sexual behavior… This marketing approach has an immense potential to affect major social problems if we can only learn how to harness its power.”


Andreasen A. Marketing social change. San Francisco, CA: Jossey-Bass, 1995.

What is social marketing? Why should we care?

The first time I heard Griffith University’s Sharyn Rundle-Thiele present on social marketing was in Perth, at Murdoch University. She was one of the guest speakers at an Australian Association of Social Marketing event presented by Perth-based social enterprise Marketing for Change. You may recall that Marketing for Change supported HCC to undertake community consultations for the Sustainable Health Review. The first thing that struck me as I waited for Sharyn’s session to begin was how different the audience was from my usual work-related presentations. There was not one WA Health Department staff member in the audience, but there were many local government agencies.

What also struck me about her presentation was not just how well-polished it was, but also how Sharyn was channeling and mobilizing among a new generation of students under her watch at Griffith a passion and capacity for co-designing social marketing messages with the very people the messages are designed to move.

The message that really landed for me in listening to Sharyn that day in Murdoch, was that the traditional preventative health leaflet will at best change behaviours for about 7% of those that read it. There was so much room for improvement, and the answer it seemed was not just better segmenting the message for those different audiences, but working with those audiences to make sure the messages land and wherever possible working beyond mere messaging to give people alternatives and not a message telling them what they ought to do.

As a consumer advocate who spends so much time trying to ensure the consumer voice is at the heart of our health service planning, this new world of public health messaging is a whole new frontier that consumer advocates needs to be aware of, and perhaps most importantly be taking a lead role in. It seems that there is a unified cry across Australia that more needs to be done in preventative health. Now it is up to consumers to ensure that preventative health is “done with” and not “done for” people.

Change 2018, Brisbane

This introduction to Social Marketing in Murdoch encouraged me to self-fund to attend a unique event at Griffith University – Change 2018. Over two days in October this year, I sat in a lecture theatre in Griffith University, a lone not for profit consumer advocacy professional in a sea of marketing professionals and consultants, academics, policy makers and government purchasers of social marketing.

I’m used to being the odd one out. I sat up the front and listened over two days, and as an outsider to the field, I took away some key insights to place social marketing squarely in the frame of a key tool to empower consumers in preventative health.

1. Social Marketing = Marketing for good

Some of the presenters were refugees from the world of commercial marketing. One noted that she threw in the towel as a marketer after she baulked at marketing alcohol to teenagers.

The reality is, we all know that marketing techniques work. What would it look like if we used these powerful tools for good?

2. Is there a problem? What actually is the problem?

The opening presentation by Professor Gerard Hastings used the story of the man whose lovely friendly Labrador dog turns up one day with the neighbour’s very dead rabbit in his mouth. This very neighbour is off on holiday and has charged the dog owner with looking after the garden, bringing in the mail etc. The very dead rabbit looks very much the worse for wear from the Labradors burying and digging up, so is washed and put back into his cage. When the neighhbour returns from holiday he is very thankful about the care and maintenance of the yard and post. He is just a bit surprised that the rabbit which had died just before they had left and had been buried in the back yard somehow magically appearing back in his cage. The point is, sometimes there is a strong belief there is a problem to be solved-but more informed research would have helped the Labrador owner to know there wasn’t a problem at all. This is one of marketing’s strengths – research that listens and learns in contrast to research asks and tells.

3. Marketing has many tools. Use them all!

Different presentations addressed the four Ps of traditional marketing (product, placement, promotion, price). A great case study was presented of a partnership project between a school and a local supermarket, which matched lessons for primary school students in diversifying the fruits and vegetables that families ate with low-priced produce which allowed the children to try different fruits and vegetables for themselves. The idea was that once the children had a chance to try the different tastes, they would continue to eat them, and meet the goal of diversifying the fresh foods that kids eat.

The point of this is – that while social marketing is most definitely not all about promotion, there are opportunities to consider how to use products, prices and placements to continue to nudge behaviours towards more positive, life-affirming ones.

Having said that, the key principle is that good social marketers work with end-users to identify the best intervention mix. Often, promotion isn’t even a part of it.

Nothing turns the curve in the regions like a community champion

The disconnect between policy makers in cities and the regional citizens they are hoping to influence can be enormous. A cane sugar farmer described how he personally had moved from a position of being vehemently opposed to any kind of change to the farming practices that had served his father and grandfather. It was the ability of the government representative to build a personal relationship, share the data about how less fertilizer and greater sugar yield would mean more profit for him, and a persistence to partner over the long haul as the successive crops proved the data right that helped create a community champion. The shift in attitude by this cane sugar farmer then caused a ripple effect that is continuing to extend across Queensland and into WA today.

Fear and statistics are popular with policy makers but don’t necessarily work…

Several presentations highlighted how government in particular are keen on social marketing campaigns which frighten people into better behaviour, and preferably include as many statistics as possible within the 3-minute advertisement. This can lead to a significant expenditure on campaigns which just don’t work.

Focus groups – are these on the nose?

Focus groups came under some criticism in terms of both their lack of diverse participants, and their tendency to ask people “what else would you like?” Being asked this open-ended question, and being in receipt of a nice morning tea and a voucher can lead people to feel they need to provide extra feedback which can dilute the social marketing message, creating a camel campaign doomed to failure.

Fundamentals of change

The closing address highlighted these key changes required to the way social marketers work:
• The focus needs to change from problem focused to solution-driven. Answers for many of the complex problems social marketers aim to tackle can be found at the community level. Sharing the problem with the general community as soon as possible will facilitate a solution focused approach
• Doing to vs doing with – the mantra “nothing about us without us” applies just as well in social marketing as it does on health consumer advocacy.
• Expert driven – to citizen led. Social marketers and other experts can never be experts in someone else’s world.
• Government driven – to on the ground/community led. No more fear-based, statistic-heavy expensive interventions!
• Solos to partnerships – thinking creatively about not for profit, government, academic and commercial partnerships can create a more effective campaign that leverages all the concepts of promotion product, preplacement and price.

Social Marketing and Preventative Health

I attended this conference because I thought there was something important on the horizon with our state’s likely increased focus on preventative health. I wanted to understand more about what social marketing could and should be for Western Australians. I left the conference more convinced than ever that this is a key tool to support creating a healthier society. As always, the key needs to be involving consumers from the beginning, and all the way through any initiative or campaign.

My Health Record Webinar 1 – Privacy and Security – Key Takeaways

Posted on August 23, 2018

Consumers Health Forum has been funded by the Australian Digital Health Agency to run a series of free webinars on My Health Record. You can register for them here.

The webinars are just under and hour, and are available on replay on the link above. As everyone is so busy, I have watched this and include key takeaway messages which I have summarised from comments made.

  1. There are three options for consumers – opt in, opt out or opt in but include protections on data you don’t want to be publicly available. (Karen Carey)
  2. You have to make the assumption that the data you have in My Health Record may at some time be inadvertently made public and identify your own risk level and mitigate that risk by using security controls. It is not helpful to try and assuage consumer concern by talking about how high-grade the security is and that a breach will never occur. The chances are it will, so consumers need to proceed on that basis. (Karen Carey)
  3. Risk mitigation means considering your own personal circumstances and make sure that any relevant information is not included (Karen Carey)
  4. My Health Record is just a summary of the rich data that at GP or specialist may have about you – a summary page, not the whole thing (Charlotte Hespe)
  5. You can work with your GP on the summary – (Charlotte Hespe)
  6. The protections on our data and privacy over the last thirty years have been eroded, drip by drip. Policy and legislation can be altered and so we do need to be mindful of this when given assurances that our data won’t be shared with other agencies. (see point 2) (Bruce Arnold)
  7. These are important conversations about My Health Record but a) they should have taken place some time ago and b) they need to be with a much broader audience (Karen Carey and Bruce Arnold, various comments)

I have had a My Health Record for three years now, and when I applied you needed to have all your key documents with you and it was a cumbersome process. There was not much data on it but it is increasing. I personally feel like Facebook knows more about me that the Australian Government ever will. My Health Record is a necessary step towards simplifying our complex health system and literally saving people’s lives by the access to key information about allergies and medications. However, as it was mentioned several times in the webcast, people’s care will be impacted by certain things – mental health diagnosis, drug and alcohol history and on and on – for myself personally this is not an issue and it is important to consider your own circumstances. If in doubt, opt out.

How easy the privacy controls will be for someone with no or low literacy or minimal computer access is not really considered, as in so much of how our systems work.

Panellists:

Kim Webber – General Manager, Strategy at the Australian Digital Health Agency
Karen Carey – Consumer Advocate, former chair of CHF and Chair of the NHMRC Community and Consumer Advisory Group
Dr Bruce Baer Arnold – Assistant Professor, Law at University of Canberra and Vice-chair of the Australian Privacy Foundation Board
Dr Charlotte Hespe – GP, Glebe Family Medical Centre and RACGP Vice President

 

Pip Brennan, Executive Director, Health Consumers’ Council

Senate Inquiry into Pelvic Mesh – A Scandal of International Proportions

Posted on May 14, 2018

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.

 

Perth Children’s Hospital Parking

Posted on December 27, 2017

The planned new subsidy scheme for Perth Children’s Hospital is the subject of this ABC news article which reveals that there will no longer be free parking for any families, and that the new rebate scheme, which may support more families, will cost $5 per day. Those who are not eligible for the rebate will pay $21.30 per day

We asked you to complete a survey about parking, and more than a 100 of you responded. The first question we asked is “What do you think?” and received an overwhelming response that this was not OK. The full ten pages of comments are here. This is what you said, in a nutshell:

  • Parents of sick children are already under stress. They shouldn’t have to worry about parking too
  • Parking shouldn’t have been privatised in the first place
  • There should be a CAT bus which goes past the Perth Children’s Hospital

 

We also asked you what you thought could be done, and received seven pages of comments you can read here.

And we were reminded that NSW drastically cut the cost of hospital parking after a petition was started by a young patient, and so did Queensland and it was only just over a year ago that WA’s Nathan Garcia protested his mother Monique Garcia’s parking fine of $1,000 which prompted a national petition, now closed, for free hospital parking. It is a big nut to crack, hospital parking, as there are complications such as free parking being mis-used by people not attending the hospital (which obviously can be overcome by ticketing technology), and considerations of how the cost of maintaining the car park will be met (e.g. in loss of clinical services) and so on. But it is a conversation we need to keep having.

Next steps

  • We will contact those of you who said you would like to keep in touch with us about this issue.
  • The CAT bus is an idea worth pursuing and HCC will follow this up.
  • Other options such as corporate partnerships to cover the cost also need to be explored. We will keep you posted…

Life with a chronic health condition – what is the consumer experience?

Posted on December 10, 2017

For six months of 2017, HCC has worked with the WA Primary Health Alliance and Curtin University on a project to explore consumers’ experience of chronic disease and what kind of care they are seeking from the GP and community based services.

People living with chronic health conditions and a range of community-based health service providers came together at a forum on Friday 1st December 2017 to hear the outcomes of a focus group study conducted by Curtin University and Health Consumers’ Council in 2017.

The aim of the study was to better understand the current system of GP management of long term conditions, from the perspective of consumers. This information will be used as part of an overhaul of the primary care system being conducted by the WA Primary Health Alliance (WAPHA) in conjunction with GPs.

Forty six consumers were involved in the focus groups which met in Wanneroo, Midland, Armadale, Rockingham, Bunbury and Albany. They represented a range of ages, backgrounds and health conditions but agreed on many key points:

  • Consumers want a long term relationship with a GP who is a good listener and will work with them in partnership
  • Bulk billing and reduced up-front costs to care helps consumers to get the care they need
  • Chronic condition care plans are not well promoted and don’t deliver enough care – especially to people who have more than one conditions
  • There is a role for specialist “care coordinators” to support better management of different services
  • People with chronic health conditions should be treated differently within the GP system to people who only require occasional GP contact

You can view the summary of both the provider and consumer consultations here.

Kate Bullow, Project Co-ordinator.

Staying Safe at Home – Patient’s Own Medicines

Posted on December 10, 2017

This is a guest blog from researcher Brock Delfonte.

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

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

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

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

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

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

Brock Delfante MSHP
BCom BSc MPharm PhD (c)