Month: May 2018

My Health Record Opt Out Period

You have from 16th July until 16th October to opt out…


Did you know that by the end of 2018, an online summary of your health information “My Health Record” will be created for every Australian?

If you don’t want to have a My Health Record, you need to take action by 15th October and opt out.

There are a range of ways to support you to opt out, and these will come on line by 16th July. You can sign up on this web page for updates as they are released.

Why have a My Health Record?

In simple terms, a My Health Record connects the dots between, for example, your GP and your hospital care. Over the last several years, WA Health services have been working on linking your hospital discharge summary to a My Health Record. So when your discharge summary is created, it looks for a match with a My Health Record and if there one, it will connect the two. Your GP will then be able to see the discharge summary, and so will you. Getting a My Health Record will mean important information like this will be at your fingertips 24/7. This will result in faster and safer care for you and your family.

Do you have any allergies???

Patients often wonder why they have to keep repeating tests and explaining allergies over and over again. but currently, we have on way of easily sharing that information across our systems. A My Health Record will help with this.

Across Australia

Having a My Health Record will mean your important patient information follows you no matter where you travel in Australia.

Advanced Care Plan

You can also upload your Advanced Care Plan if you have one, on your My Health Record.

Whose records?

In our Advocacy service we often encounter people needing assistance in accessing their medical records. This will, over time, be a thing of the past, where people can maintain control over their own health information via the My Health Record. This is vital when seeking follow-up treatment, understanding our own health care and knowing what has happened to us.

What about privacy?

This is a huge consideration, and many will know that the My Health Record, which used to be called the Personally Controlled Electronic Health Record, has been in the planning stages for many years, in part because of the important considerations of protecting privacy. If you are really concerned, you can opt out.

Extra privacy protections

One of the new features of the My Health Record will be the ability to set it up so that you get a text if someone accesses your health record. This is not something our current paper based medical records provide. You will also be able to control certain aspects of it yourself.

To find out more please ensure you, your family and friends go to the government website for information and updates.

Sir Charles Gairdner Hospital Community Advisory Council (SCGH CAC)

Do you have a burning desire to make a difference to our patient experiences? Can you help us make a good health service great? If so – the SCGH CAC is seeking expressions of interest from the community to become a member of the Council. Membership of the Council is an opportunity for the Consumer Voice to be heard and we are ready to listen.
 
The Council is a vital link between the Hospital, its patients and the community and provides a consumer’s perspective on Hospital services and operations.
 
The Council:
  • Reviews patient information
  • Reviews the hospitals performance;
  • Facilitates the participation of consumer representation on hospital committees;
  • Provides input into policy review;
  • Facilitates broad consumer consultation and
  • Encourages effective communication between Patients, their families, carers and Staff.
The Council is looking for applicants who reflect the experience and diversity of the community. It is seeking applicants who can demonstrate an understanding of health care issues and challenges as well as the capacity to understand and represent the perspectives of consumers, carers and views of those served by SCGH. The CAC would also benefit from members who have other skills, for example, experience and knowledge in marketing, information technology, quality standards and community liaison.
 
CAC members attend a meeting once a month (the 2nd Tuesday of the month from 4.30pm to 6.30pm). There will also be the opportunity to contribute to sub committees and other consumer experiences at SCGH outside of the monthly meetings.
 
The Terms of Appointment are initially for four (4) years with an option to extend and members are required to attend a minimum six (6) meetings a year. There is reimbursement of incidental expenses incurred for attending monthly meetings.
 
For further information contact CommunityAdvisoryCouncil.SCGH@health.wa.gov.au or phone 64574052

Consumer Representative Sundowner

Tuesday 12th June 2018, 5-7.30pm

HCC Invites all Community Advisory Council (CAC)/Consumer Advisory Groups (CAG) members to a sundowner to thank you for your efforts as a consumer representative. CACs/CAGs are an important part of the continuous improvement of the health care system and we believe you should be congratulated!A relaxed, informal event with nibbles and drinks supplied. A great opportunity to meet and share stories with other consumer representatives.

Click here to book

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.