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Myself, Ms Soula and my pelvic pain story at the Alliance for Improving the Management of Pain 2014

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AIM of Pain 2014 from (OoI) on Vimeo. Or read the speech below.

I would have had to be dead not to front up to an opportunity where I could present my pain journey to 180 chronic pain interested practitioners.

Was I terrified? Absolutely! But as if chronic pain hasn’t trained me for that, pushing me past all my boundaries and limits, and facing constant fears… this was going to be a piece of cake in comparison!

The Alliance for Improving the Management of Pain 2014 (AIM Pain 2014) was held in Sydney and PainAustralia were searching for a patient to tell their story. My first thoughts were; I had to be able to tell my pelvic pain story through art. Ms Soula had to be on the stage with me, and I worried that this was impossible to physically manage without Theo’s help. As it turned out all that was ok, in fact the organisers were most enthusiastic about the creative side, and the support offered to both Theo and I was 100%.

I was asked to present my story as honestly as possible and in my own words and pictures. Continue Reading

Off to the Convenor of Medical Panels with my invisible pain

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You know that feeling before something great is going to happen, like just arriving at the airport and knowing you’re off on a great holiday? It’s a great feeling isn’t it? Makes your insides really happy, the body and mind get a lift, and troubles seem to slide away, everything feels like it’s going to be alright. Well, I couldn’t feel more the opposite right now. I have an appointment with the Convenor of Medical Panels on Tuesday and I’m feeling more like I’m facing a funeral.

Who are the Convenor of Medical Panels for those lucky enough not to have had any experience with them? I’ll just pop in their website information as they explain it best:

Medical Panels are constituted pursuant to the Accident Compensation Act 1985 and the Wrongs Act 1958.
A Medical Panel may be asked to provide an Opinion where there is disagreement or uncertainty about aspects of a WorkCover related injury or medical condition.
A Medical Panel may be asked to provide a Determination where there is disagreement or uncertainty about the degree of impairment resulting from an alleged Wrongs Act injury.
A Medical Panel Opinion or Determination on a medical question must be accepted as final and conclusive.

If you’re an injured worker, you won’t need to read on as you’ve either experienced the Panels yourself, or after reading the above lines you’ll know exactly what I’m about to say. For those who are not injured workers and want to understand your injured worker friend, read on. And if you are a Panels assessor*, please, consider the following and what injured workers have to endure when they face you.

Following, are my thoughts and the questions that will swivel around my brain, down my spine and burn my pelvis until this appointment is over and the final decision is mailed to me. Continue Reading

Soula Mantavanos…Inside her home and her passion to help others!

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ShowAndTellHeader
Show and Tell online interviewed me about art and my advocacy for chronic pain and injured workers… thanks guys!

Let us introduce you to Soula Mantavanos…an inspiring artist with a passion for helping others deal with chronic pain. Today we are trying to help her spread the word as far as we can reach to help all those in need…but also, she is an incredible artist with an incredible home…so we thought you might not only like to hear from her but see where she spends most of her time. These pics were photographed by the wonderful Sean Fennessy and produced by Lucy Feagins of The Design Files.

Soula has been forced do deal with crippling pain since her fitball burst and caused her to fall on a concrete floor. She is now dealing with chronic pelvic pain which is more specifically known as Pudendal Neuralgia (PN).  Soula is now advocating and working tirelessly to help others through her website.

We sat down with Soula to hear all about it, check out the links she has provided and share where you can! Ohhhh and enjoy her gorgeous home!!

Tell us about your history and how you ended up in the position of being an amazing woman advocating for chronic pain?

 

“I was working in our graphic design studio, Origin of Image (ooi.com.au) in March 2007. I was always health conscious so aside from my yoga ritual 4 mornings a week and walking everywhere, I would often sit on a fitball. It was great until the antiburst fitball burst and I fell to the concrete floor. It really was the split second that changed my life. I was 37.
Continue Reading

Theo and I, live on The Scheme Project’s broadcast

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Theo Soula Live In The Studio

Live In The Studio Scheme ProjectDoing my bit again for injured workers and hoping that sharing my story will bring positive change to the primitive Workers Compensation system in Australia.

Both Theo and I attended today’s live broadcast with Kris Vanston, Simon Toppin and their team to discuss the aims of The Scheme Project.

My specific rants are;

  • the inadequate methods of assessment for pain impairment within the system,
  • the out of date Accident Compensation Act 1985 and limiting AMA Guidelines also used for assessment,
  • the ‘Independent’ Medical Examinations (which are certainly not independent), and
  • the putrid investigation methods, (actually I could go on)…

Basically the whole system needs an update, this is not quality insurance or appropriate and respectful treatment for any person living in Australia, or anywhere else for that matter.

It’s time to speak up wherever and however you are involved with this system and contact The Scheme Project to contribute your experience.

Listen to the live broadcast here. Sign the petition or pledge funds so The Scheme Project can produce their documentary.

Happy to be stars of The Scheme Project

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Soula Theo On Scheme Project

Soula Theo On Scheme ProjectMy rants are plenty in regard to the WorkCover system and my efforts to express the limitations and lack of support I’ve experienced as an injured worker for almost 7 years have been endless. All efforts have led to the usual dead-end letter from a WorkSafe Agent, Government body, WorkSafe themselves, if not the dead silence and ignorance that’s on offer for most workers’ concerns.

I was ecstatic when I heard about Kris Vanston and The Scheme Project. and I offered to jump on board and help in any way I could. Theo and I have signed the petition and have both made our pledges. Recently we took our support one step further and spoke up in front of the cameras for The Scheme Project’s Pozible campaign promo. Continue Reading

$6 Billion woman and the $600 Million Girl

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$6Billion woman and the $600Million Girl)

the PELVIC PAIN report

“Pelvic pain, while common, is often a hidden burden to the lives of many women. With emerging national and international knowledge about pain and the heavy toll it poses on individuals and society, it is timely that this report ‘The $6 Billion Woman and the $600 Million Girl’ raises pelvic pain to public attention as an important health issue. This call for action is overdue in a much neglected area of health and healthcare impacting the lives of so many women and girls in our community.” Dr Christine Bennett, MBBS FRACP Master Paed. Professor and Dean, School of Medicine, Sydney. The University of Notre D

This report is an Australian initiative to address human and fiscal burdens associated with conditions causing pelvic pain. It provides solutions to improve women’s health services and outcomes. The intended audiences for the Pelvic Pain Report are state and federal governments, funders, clinicians, consumers, allied health care professionals, researchers and research funders.

(Excerpt from $6 Billion woman and the $600 Million Girl)

Addressing pelvic pain must be a cornerstone of that commitment.

The purpose of this report is to identify the issues in diagnosis and management of pelvic pain, and to provide some solutions to in3luence the future health outcomes for Australian women and girls. Working with Government, Medical Colleges, af3iliated organisations, societies, faculties and those affected by pelvic pain conditions can assist in the implementation of the recommendations that will guarantee bene3its to individuals, the business sector, and society at large. The recommendations have been proposed after strong input from women and girls with these conditions. This has been obtained through the 25 years experience of patient advocacy organisation Endometriosis New Zealand, Australian womens’ case histories, and current Australian and New Zealand social networking comments.

Read more…$6 Billion woman and the $600 Million Girl

Pelvic Pain Steering Committee:

Deborah Bush QSM
CEO and Founder Endometriosis New Zealand,
Advocate for women’s health, and development of innovative health service provision.

Dr Susan Evans
Gynaecologist, Pain Medicine Physician,
Specialist in pelvic pain.
www.pelvicpainsa.com.au
Pelvic Pain SA on Facebook

Professor Thierry Vancaillie
Gynaecologist, Pain Medicine Physician,
Specialist in pelvic pain.
www.whria.com.au

Sami Vanston, Only All My Love

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Sami Vanston In Studio

Singer/Songwriter Sami Vanston spent the day in the studio as The Scheme Project brainstormed ideas for their documentary soundtrack. This song was written in dedication for a victim of bullying who took her own life because of the pressures of the WorkSafe system.

I’m so touched by this and also hopeful that the WorkCover system will no longer be able to sweep injured worker’s voices under the carpet. Social media has given us a voice… and it’s a very strong one.

Please visit The Scheme Project and follow the prompts to the petition if you want this system to change.

Pain sucks for injured workers

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Quintner-Dr-John Apr12

Surfing the many ‘pain’ forums you eventually get to ‘cyber’ know the regular contributors. One of my favorites to bump into is the highly accredited and regarded, John Quintner. I give full attention too John, he is a great support for me (and to the world of pain). Regular readers of my blog might remember his previously posted paper ‘John Qunitner’s point of view‘ and may have also seen some of John’s great comments, in particular where I vent my frustrations with WorkCover.

But this post isn’t about me, it certainly interests me as it refers to assessments within the WorkCover system. Although John speaks for WA this does also apply for Victorian injured workers. I’m happy to be able to post this on my blog, although flattened and left without acknowledgement with my personal WorkCover impairment. I still hold hope our out-of-date system will be updated someday and it will be opinions such as these that will instigate that change. Future injured workers should be grateful for them.

If you haven’t come across John Quintner then my advice would be to google his name, he has some great opinions to share about chronic pain.

Written by Dr John Quintner
Monday, 01 July 2013

Dr John Quintner. Consultant Physician in Rheumatology and Pain Medicine

Mr Chris White, CEO, WorkCover WA (WA compo compares favourably, June 2013) rightly calls for factual information to support any suggestions as to how the scheme he administers could be improved.

In so doing, he has sidestepped the call for reform of the system made by pain specialists Drs John Salmon and Stephanie Davies (Management of WA’s work injured needs reform, May 2013).

Does WorkCover have a case to answer or are these experienced pain specialists making a big fuss about nothing? Well, let’s look at some facts.

In the WorkCover WA Guides for the Evaluation of Permanent Impairment (3rd edition, 2010), we read that because there is currently no validated measurement tool for the assessment of pain, WA has followed the NSW WorkCover Guides by excluding Chapter 18 (The Assessment of Pain) of the AMA(US) Guides V.

Without providing any factual evidence to bolster its position, WorkCover WA claims that pain has already been factored into the impairment ratings for demonstrable work-related conditions.

If that were indeed the case, extrapolating from this administrative decision, one might reasonably expect to find that the Guides being used in WA (and NSW) rely upon the use of validated measuring tools to determine the extent of bodily impairment.

But that is not the case: there are hardly any studies that would validate the assessment of physical impairment currently being used by WorkCover. [Davies, 2008]

This is doubly detrimental to the injured worker with ongoing pain and apparently little or no assessable impairment. Contrast this to the attempt to resolve the vexed question of psychiatric impairment.

Here, not only does WorkCover WA use ‘impairment’ as a surrogate term for ‘disability,” but also Approved Medical Specialists (AMS) are mandated to use the Psychiatric Impairment Rating Scale (PIRS), which was constructed by an expert group of NSW psychiatrists.

The PIRS comprises six subscales, each of which is said to delineate and evaluate discrete areas of functional impairment: self-care and personal hygiene; social and recreational activities; travel; social functioning (relationships); concentration; and employability.

Data on the reliability and validity of the PIRS has yet to be published by NSW WorkCover, although it did fund such a study in 2003. [Davies, 2008] Could it be that the results were inconclusive (or even worse than that)?

Furthermore, the final calculation of impairment rating using the PIRS is skewed towards the lower scores, thus reducing the overall amount of compensation paid. [Davies, 2008]

But at least workers with psychiatric impairment/disability are afforded a mechanism of sorts for assessing their entitlements. Why are workers with chronic and disabling pain being denied the same opportunity? Continue Reading

Reply to my ‘Fair Assessment for Compensation letter’

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Fair Assessment LetterAfter speaking with Kris Vanston I now know that injured workers do have the Victorian Ombudsman to turn too for unfairness issues within the WorkCover system.

I had my doubts about contesting my impairment score of 0% (that was deemed permanent I might add), as I am very well aware and have ranted aplenty about Chronic Pain NOT being acknowledged in the guidelines that are used to assess injured workers. That means there is Australian legislation (I’ll rephrase; it is legal) for WorkSafe practitioners to ignore Chronic pain, thus Pudendal Neuralgia. No where within the system will any WorkCover practitioner be able to assess an injured worker’s Chronic pain. I’m experiencing the result of this, I’ve been living this ignorance since March 2007.

I wrote a letter that was ignored for a few months by our WorkCover Minister, WorkSafe and SafeWork Australia. The Victorian Ombudsman employee informed me not to use the ‘info’ email address but rather the ‘enquiries’ one when I’m writing to WorkSafe. Ridiculous but he was right and I eventually received a response.

(Enter sarcasm) I now feel completely healed and completely relieved with the empty response I received. It managed to ‘acknowledge’, ‘agree’, ‘assure’ and confirm all the points relating to this outdated system that I initially made in my letter. I’m also more at ease knowing everyone who assessed me ignored all my symptoms and inabilities and that was legal. I’m also proud of the staff at WorkSafe who are happy to abide by ignorant and narrow-minded measures that would also apply to them in the event they injured themselves at work. Above all, I’m in awe of the WorkSafe staff and all related employees and practitioners who’s reports are so loyal and discerning of these out-of-date AMA4 guidelines (with pain chapter removed), and The Accident Compensation Act 1987.

This template response clearly indicated to me that anyone with chronic pain and with any of the following symptoms/limitations, as a result of a workplace accident will not get compensation: affected toilet function, spasms where you really don’t want them, sensory pain (in my case throughout the pelvis), toothachey nerve pain, weakening legs, burning, zinging, if you have limited sitting ability, if you are limited in walking, standing, working, lifting, bending, exercising, if you have an implant as a result of pain (or even if you need one for that matter), if you rely on daily help, if you can’t drive, shop, sit and type this damn email in one hit etc etc…! Continue Reading

The Design Files

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Sean Fennesy photograph for www.designfiles.netI’m on a bit of a media roll at the moment and I can almost hear someone saying loudly, ‘... and that’s a wrap!‘ It feels like Theo and I have accomplished a huge task and it’s time to celebrate.

But wait, don’t go popping your corks yet. Well… maybe a couple! Being inducted into The Design Files world is pretty rewarding and something certainly to be celebrated. It’s just that underneath the facade, a strong undercurrent is always brewing.

In no way do I want to create a damper here but this site’s mission is to create awareness for the hellish ‘p’s’; Pelvic Pain, in particular Pudendal Neuralgia (PN) /Pudendal Nerve Entrapment (PNE) from my perspective (I know, I just used another word starting with ‘p’!). That means, good and/or bad, I’m going to post it here. So I’ll clarify now, this post is a very positive one. It’s about standing up, facing the world which requires courage, strength, being understood, supported, alot of struggle, and a damn load of management skills.

After completing our ‘Customising for Soula’ renovations, the search for treatments that I responded to, and deciding to attempt work with my home setup (and my super Theo), it felt like we began living life again instead of treading its waters. By no means can I rely on myself or get through the day without Theo’s help, nor am I sitting as I please or have a decent amount of mind stamina, but I can say, ‘I’m working’. I’m also creating. Now I believe I will achieve, I can do, make, plan, dine, create, think, walk, sit… all, sparingly, minimally and slowly, but I CAN. I have ability to plan a day with.

Media…

Theo and I had to remain realistic in our search for someone to portray our accomplishments, and had to expect that noone was going to understand PN. How was anyone going to describe it, how was anyone going to believe it by looking at me, by seeing our place? The considerations were many, after all the general consensus is if you can’t see pain, then it’s not there, a huge part of the pain battle. We asked ourselves if we risk the judgement, ‘yeah right sure she’s in pain‘, and then we thought about the horrific WorkSafe investigators!!!! That’s when we realised we had to go for it. And not only did The Design Files founder Lucy Feagins share our creativity on her brilliant blog, but her address and understanding of our space and lives couldn’t have been more spot on or more supportive of PN. It puzzled me that Lucy could understand it when others struggle so much. Continue Reading

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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