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Diagnosing and treating persistent orofacial pain

Continuing our conversations around diagnosing and treating persistent orofacial pain, the following article explains the new classifications for dental pain and the people behind the changes.

Professor Chris Peck is a senior transformative leader who, as a leader of a major University initiative and Dean of Faculty, has developed and delivered innovative and sustainable University- and community-wide research and education strategies. These roles have been in complex multi-stakeholder environments where he has developed industry, government, and community collaborations to produce effective and efficient outcomes with significant impact domestically and internationally.

President

Australian and New Zealand Academy of Orofacial Pain

– Present 13 years 4 months

Sydney, Australia

Leading the National Academy that provides a unified vision for the development of clinical care, research and teaching of orofacial pain in Australia and New Zealand

It’s incredibly important to have clarity around these classifications and definitions of pain because if you can’t make the diagnosis, how are you going to treat patients appropriately? That’s been a problem in the past.

Dr Chris Peck, MJ Cousins Pain Management and Research Centre

Diagnosing and treating persistent orofacial pain

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Podcast A/Prof Tasha Stanton

We are delighted to announce that Ass Prof Tasha Stanton has accepted our invitation to present webinar for our community.  She has an extremely busy schedule but we have preliminary booked February 7th 2024.

The below podcast will help you understand her work.

Wednesday Aug 30, 2023

Episode 36 – Tasha Stanton (Relaunch) – Illusions and context in pain

Associate Professor Tasha Stanton delves into the realm of pain perception, context, and illusion. Prepare to embark on a journey of intellectual exploration as Assoc. Prof. Stanton shares her profound expertise in pain science and therapy. With a keen focus on research and therapeutic insights, she guides us through the labyrinthine of pain perception, revealing how our minds and bodies interact to create pain.

The “Le Pub Pain Podcast” offers a unique opportunity to engage with Assoc—Prof—Stanton’s groundbreaking research, exploring the multidimensional landscape of pain from both academic and real-world perspectives. Whether you’re a seasoned researcher, a healthcare practitioner, or simply curious about the mysteries of the human experience, this episode promises to leave you with newfound insights and a deeper appreciation for the complexity of pain.

LISTEN HERE

podcast

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President’s Reflections – Oct 2023

Hello everyone I hope you enjoy this edition of my ‘President’s Reflections’.

National Support Line

During the past month, I have accumulated 347minutes of support time on the National Support Help Line for people living with TN.

Support Group Leader Meeting

I held our first support group leader meeting for the year, via Zoom 08/09/2023, I did the facilitating myself. Our support group leaders are from all walks of life and from across Australia, however the one thing we all have in common is TN. Our leaders presented many ways to hold a meeting, which worked for everyone. We discussed our part to play within the association’s framework and the best ways to help each other and our members. It was a successful meeting because we all collaborated with each other and got to know each other in a relaxed atmosphere. I’m very proud of all the support group leaders who give so much to help other people living with TN.

Support from Website

It has been my privilege to provide support for 11 new members that have asked to be contacted, via our website. I have provided them with links to our website, for articles that can support them. I’ve given them Doctors names and phone numbers. I’ve shown them how to find things on our webpage.

Once again, I’ve listened to their brave journeys with TN and provided a safe environment for them to talk and ask questions. It breaks my heart listening to their stories.

Volunteer Workshop

The Workshop for our committee and support group leaders is organised. Many thanks to Lyn Donnelly for her help and the countless hours of absolute skill. I believe the agenda for the Melbourne trip is finished.

A special thanks to Peter Gough for organizing our arrival, departure and transportation while we are in Melbourne.

Webinar

Our first webinar for this year was held in August. The webinar was a terrific success with Assoc. Prof. Liam Caffrey chairing and Dr. Karen McCloy presenting and answering questions from the audience as well as questions from our members. Dr. McCloy is a wonderful presenter. She can fit a lot of education in, in a small amount of time. We are planning to hold a lot more webinars in the near future. Watch this space.

Instagram-Trigeminal Neuralgia Association Australia is on Instagram.

Awareness event

Our new Instagram account continues to gain momentum. Lyn is doing a great job taking care of our Instagram account. Lyn has many projects in the process at the moment. I will keep everyone posted.

Our Association has a lot of good things happening soon-I’m excited.

On A Personal Note:

It’s a beautiful time of the year…

  1. Flowers are blooming.
  2. Baby birds being born.
  3. The smell of new blooms.
  4. The sound of birds singing.
  5. No wind.
  6. No cold weather to worry our trigeminal nerve.
  7. The smell of a spring day.
  8. The first cup of coffee on a beautiful spring day.
  9. The sun’s rays.
  10. Sunrises on a spring day.

“With hope”

Kim O’Donnell

Lockyer Valley/Toowoomba 0402 982 118

 

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Self Compassion and Self Expression in the Arts

With our October Dance Festival awareness event just around the corner, this podcast exploring how artists living with chronic pain, organise their performances around their limitations is very relevant.

Is self-compassion a trait or a state of being? This edition is inspired by findings that suggest stronger self-compassion is associated with reduced impact of chronic pain.

Self-compassion, in this sense, is the ability to respond to pain and difficulties with kindness and openness rather than criticism. In this episode we ask our artistic contributors, and ourselves, how to step towards achieving self-compassion and the importance of movement in looking after our bodies.

This edition of Airing Pain was made possible by the invaluable contributions of our participating artists who showcased their works at the Edinburgh Fringe Festival, and those in the academic field. We learn the motives behind using dance as a way of supporting those in pain, but also expressing and communicating pain to audiences.

Listen to Podcast

Contributors:
Dr Sarah Hopfinger, Artist and Researcher (Edinburgh Fringe: “Pain and I”)
Victoria Abbott-Fleming MBE, Founder of the Burning Nights CRPS
Dr Emma Meehan, Associate Professor, Centre for Dance Research, Coventry University
Tali Foxworthy Bowers, Choreographer and Movement Director (Edinburgh Fringe: “Monoslogue”)
Jenna Gillett, PhD Student, Department of Psychology University of Warwick

The music used at the beginning of this edition was an original composition for Pain & I by Alicia Jane Turner.
Images provided by Sarah Hopfinger.

Read transcript

Time Stamps:
1:35 – Miriam Introduces Sarah Hopfinger’s “Pain and I” performance during Edinburgh’s Festival Fringe, and asks what techniques from the world of dance offer those living with pain?
3:41 – Pacing as a technique. Also see 13:25 for Sarah Hopfinger on pacing.
6:34 – Emma Meehan, at the British Pain Society, on how dancers living with pain approach pain.
8:34 – Introducing Tali Foxworthy-Bowers
15:54 – A huge thank you, and invitation, for filling in our survey
16:20 – Emma Meehan and research into what somatic practices in movement can offer those living with pain.
18:20 – The importance of sharing and telling stories about pain experiences as an act of self-compassion for performers, and mutual connection. See also 25:53 for a continuation of this sentiment from Tali Foxworthy Bowers.
21:25 – Pain catastrophising, how we frame pain, and techniques for being kinder to ourselves with self-love and compassion.
27:54 – Suggestions of how to support those close to you who are living with pain.
31:34 – Emma Meehan discussing agency with pain, as showcased at the British Pain Society ASM 2023.
35:10 – The role of charities in patient support, and what else can charities be doing?
37:27 – Chronic pain is chronic strength: acceptance of pain as part of the bodies we love and care for.

Additional Resources:
Burning nights
NHS Resources
Somatic Practice
Dr Meehan’s Book: Performing Process

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Regional Care And Chronic Pain

Australia is a vast and beautiful country, but for those who need Regional care coping with chronic pain, accessing appropriate medical care poses huge challenges.  The following article covers the subject in depth.

Rural patients deserve better health care. We just need to be brave and implement change.

By Jack Archer – Posted 

If you live in rural and remote Australia, your access to health care remains well below the standard that citizens of one of the richest nations on Earth should expect.

Rural and remote areas experience serious health workforce shortages, despite having a greater need for medical services.

Lower rates of cancer screening and higher rates of potentially preventable hospital stays are just some of the issues people in the regions face.

The outcome is lower life expectancy and higher rates of illness and disease.

It is a key issue that drives people to move away from rural and remote areas, undermining progress for these economies and communities.

For those of us who don’t live the reality, this stream of facts and stories can be tiring. It can seem like just another unfortunate thing in the world that can’t be changed.

But if you look a little harder, you can see this isn’t really true. In fact, many of the answers are right in front of us.

A masked nurse adjusts their blue plastic glove in an operation room.

More could be done to utilise nurses’ skills.(Rawpixel: Chanikarn Thongsupa)

How tech creates opportunities

New technologies are opening up exciting opportunities for better access to quality care each day.

Artificial intelligence is assisting isolated healthcare workers to collect information for a rapid diagnosis without specialist training.

There are also new initiatives identifying ways to resolve chronic workforce shortages across the sector.

The small town of Glen Innes in rural New South Wales, which suffers from serious health workforce shortages, recently secured two new local general practitioners, a pharmacist, an exercise physiologist, a diabetes educator, a nurse practitioner and a speech pathologist in just six months.

They did this by embracing the emerging Attract Connect Stay initiative that helps communities lead the way in finding, welcoming and retaining new health workers.

Despite the workforce shortages, there is already the same or a stronger presence of nurses per person in rural and remote areas.

Generic shot of a nurse testing unidentified patient's blood sugar.

Specialist nurses in regional areas could ease the burden on the healthcare system.(ABC: Emma Wynne)

The opportunities to enable these nurses to do more and to make their practice more rewarding and impactful are significant.

For example, overseas evidence shows that nurse practitioners are able to provide 67-93 per cent of all primary care services if given the scope of practice and access to funding similar to Medicare.

At present, these skilled specialist nurses who can diagnose and prescribe for many illnesses, and work closely with specialist doctors to provide complex care, are thin on the ground.

By investing in more nurse practitioner positions in rural and remote areas and expanding their scope of care we could make a big, big impact on rural health problems.

Telehealth improves access to care.

Last, but certainly not least, is the role that telehealth now plays in rural and remote health care.

The pandemic finally gave government the push to make telehealth more widely available, with enduring benefits for people in rural and remote areas in terms of access to care.

These are all great examples of the change that is possible.

Man sits at desk looking at laptop screen, woman is displayed on screen

Telehealth is now a vital tool to deliver health care in regional Australia. (Supplied)

There are many others, and they should all give us real hope for the future.

But the reality is that, aside from the telehealth rollout, these are fragile green shoots, good options or just one-off pilots that prove change is possible, but don’t make it so.

Real change needs a long-term investment combined with a system-wide commitment to innovation and change.

The foundation for making this happen is moving to equitable Medicare spending for rural and remote communities.

A rapid analysis of the latest data* on national health spending reveals that the Medicare Benefits Scheme (MBS) spent about $290 less per person in small rural towns and remote areas than in major cities over the previous financial year.

Category

2021 population

Medicare benefits July 2021–December 2022

Benefits per person

Metropolitan

16.5 million

$11.3 billion

$684

Regional centres

2.1 million

$1.3 billion

$617

Large rural towns

1.5 million

$944 million

$626

Medium rural towns

923,000

$571 million

$618

Small rural towns

1.7 million

$989 million

$586

Remote communities

271,000

$109 million

$405

Very remote communities

180,000

$55.5 million

$309

*Source: Department of Health and Aged Care, Medicare quarterly statistics

In total, this equates to more than $600 million each year that is not being spent on Medicare benefits for rural and remote Australians, mostly because they can’t access the services they need.

This gap is not new.

In 2014–15, the National Rural Health Alliance found that the underspend through the MBS was $374 less for remote residents compared with people in metropolitan areas.

The recurring underspend should be invested in an ongoing innovation fund, with the states, private sector and philanthropists challenged to match the commitment.

Over a 10-year period, this equity-based approach to funding could generate billions of dollars to invest in trialling new ways of delivering health services at scale and then rapidly rolling out the innovations that work.

It would be a game changer for rural and remote health.

The government is looking at widespread changes to Medicare right now.

If the reforms include a commitment to the equality of spending for rural and remote Australians, we could have things up and running and be investing in real change within 12 months.

Let’s not wait for another pandemic to make major positive changes in rural and remote health.

Time to be brave and make it happen.

Jack Archer is an advisor on regional development issues and former chief executive of the Regional Australia Institute.

Another article covering the subject

 

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Mikala Grosse is Raising Awareness

One of our members Mikala Grosse is raising awareness for people living with trigeminal neuralgia at an event in Hobart – see details below.

If you are interested in attending please use this link

Event description

With International Trigeminal Neuralgia Awareness Day coming up on 7th October, Mikala Grosse will join WNA members and friends to raise awareness about this condition and discuss how it has changed her life and the way she does business is a really positive way.

Mikala is a Hobart-based Business and Life Coach and Small Business Facilitator with a background in productivity, eLearning and business tech and automation. She is certified as both a Life and CliftonStrengths coach.

She’s run her own businesses on and off over 20 years. She started her current business 6 years ago and since then has coached and supported more than 100 business owners of varying industries and backgrounds to create the foundations from which to build and grow their businesses.

She is the co-founder of two business-related podcasts (Work Wife Wine Time and Freedom to Coach) and runs business mastermind groups for aspiring coaches and consultants.

Mikala is passionate about supporting business owners to effectively do business in a way that honours their individual circumstances and unique talents and strengths.

Come along for lunch, plus grab a drink on arrival, and enjoy hearing from Mikala while connecting with other like-minded women in business.

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Patients Storytelling

Many in our community tell stories of visits to their doctors and dentists, where they felt they weren’t listened too.  Research has shown that it can take as little as 11 seconds for a patient to be interrupted by a medical professional, which impacts how our stories are heard.  Very often the medical professional, which their knowledge gained from medical school, decides what is wrong without really listening to the back story. Can patients storytelling help make better doctors.

In an effort to help medical students learn how to observe, listen and appreciate a patient’s perspective Melbourne University  Faculty of Arts is offering medical students a 4 week creative writing course.

The below article was written and published for the Guardian

Paul Daley

Sun 11 Jun 2023 11.00 EDT

‘Pushed into humanity’: can learning about storytelling make better doctors?
Narrative medicine encourages doctors to engage more deeply with patients by listening to their stories

The Melbourne general practitioner Mariam Tokhi knows exactly what her friend and colleague the senior paediatric emergency physician Fiona Reilly means when she speaks of her “back pocket full of ghosts”.

Reilly is talking about those haunting memories all medical doctors harbour about their interactions with patients who are sometimes labelled “difficult” or for whom things didn’t go as they should or could have. Some survived, perhaps even flourished. Others died.

Doctors tend to evade their ghosts due to their onerous memorial weight, the expectation of stoicism freighted upon them amid the inhumane demands of the medical profession. But Reilly and Tokhi have a different strategy.

Narrative medicine encourages doctors, through writing, to engage with patients’ stories.

They write about these patients, and their shared experiences with them, as practitioners and now teachers in the University of Melbourne course on narrative medicine. Narrative medicine is a practice new to Australia whereby doctors are encouraged, through writing, to ethically engage far more deeply with their patients’ stories.

LP

At its core, narrative medicine aims to build greater doctor-patient empathy. By listening to and observing patients more acutely, physicians get to understand how story – experience – impacts patients diagnostically and therapeutically. Not least, narrative medicine also nurtures doctors’ creative lives, all too often suppressed by their profession’s punishing demands and overwhelming traditional emphasis on biomedicine and checklists.

In close listening, we are pushed into empathy and into humanity
“Storytelling asks us to hear about what growing up on the mission meant for the patient in bed 14 with the terrible diabetes,” Tokhi said in a speech. “To understand what leaving behind his children in Iran means for the psych patient you just admitted. To acknowledge the unspeakable brutality of childhood sexual abuse borne by the girl with pseudo-seizures. To comfort … the woman who is bleeding heavily in the corridor of the maternity ward with her threatened miscarriage.

“It is easy to be frustrated with systems and to be cynical about demanding, sick, dehumanised Mrs Smith … but in close listening, we are pushed into empathy and into humanity.”

Besides being an experienced emergency doctor, Reilly is a food and travel writer. Like Tokhi, she has studied narrative medicine at Columbia University, regarded as the global exemplar of the practice. With a master’s of fine arts in creative writing, she is now working on an essay collection about her paediatric medical work as part of a PhD in creative nonfiction and narrative medicine.

“This is the first time I have ever written about my medical work,” Reilly says. “But like every doctor I know, I carry around a back pocket full of ghosts. You know – the stories that have stayed with me, the ones that I can’t shake for whatever reason, that need to stay with me because they help inform my current practice.”

“That story of the way I deal today with the family of the child with suspected septicaemia, for example, because many years ago I lost a child patient with septicaemia who died despite our best efforts. And I’ve never forgotten her and her family. These stories don’t go away. They stay with you.

Top 10 medical memoirs … by patients
“But by externalising them – and narrative medicine I think gives you a way of doing this sensitively and ethically, as well as creatively – that’s a real gift. To be able to take those stories out of your back pocket and actually put them down on to a page is a gift.”

Tokhi is a GP working in refugee health in Melbourne’s western suburbs. She also teaches professional practice at Melbourne University’s school of medicine. For years she has written extensively as an advocate for some of her patients and in the media about primary care at the “deep end” of the public health system.

But, like Reilly, she was also searching for greater meaning in her profession and was eager to find a creative structure that more fully reflected the “stories” of her patients.

Dr Mariam Tokhi says narrative medicine has made her a more effective advocate and brought a new depth of meaning to what she does.
Photograph: Ellen Smith/The Guardian

There was nothing in Australia. Only through Columbia could she find what she was looking for.

“I was grappling with some really big questions around patients’ personal stories. I felt quite comfortable about the medicine of doctoring – you know, with the science and the guidelines and the protocols. But so much of it seemed to be about more than just that,” she says.

“It seemed to be about how to really talk to someone. How do you hear what they’re trying to tell you? How do you show up for somebody’s story and for what is working for them in their life and how that affects their diabetes, or how their PTSD is playing out or what supports they have around them to engage in care around their cardiac rehabilitation?”

Narrative medicine, she says, has made her a more effective advocate and brought a new depth of meaning to what she does.

“Narrative medicine has taken me to a place where I’m writing poetry regularly and I’ve got a novel that I’m trying to chip away at,” Tokhi says. “It has also been really liberating for me in terms of processing the big and the small but also often quite heavy things that can happen in medicine.”

‘If the plane breaks down, it’s just you’: the pressure and awakening of one city GP in the outback
Rita Charon, the founder of the narrative medicine programming at Columbia, writes about how it is assumed that health professionals “know of the centrality and privilege of storytelling in their practice”. And yet an ignorance of the importance of patient story has become a defining professional trait.

“What else do we think we are doing when we ask someone in pain about their situation? Even the junior medical student who says, ‘What brought you to the clinic today?’ and is met with the answer, ‘the M104 bus’ knows that he or she is in search of a story,” Charon writes. “And yet, there has been an odd diminishment of the status of storytelling in medicine ever since we decided we knew enough about the body by virtue of reducing it to its parts.”

That axiomatic complaint about a doctor’s “poor bedside manner” stems, in all likelihood, from their failure to actively listen to a patient’s story. The instruction of seasoned doctors and medical students in narrative medicine can help remedy this.

The University of Melbourne’s school of medicine is the first Australian medical school to embrace narrative medicine, this year offering a four-week intensive elective – titled the craft of creative writing – to its second-year medical students.

Tokhi designed the course and she co-teaches the curriculum with Reilly. It explores the craft of narrative fiction and poetry, how to more actively listen, read and observe, as well as how trainee doctors might incorporate their skills as writers into their future clinical work.

A diverse range of writers talk to the class. They include the novelist and surgeon Neela Janakiramanan, the poet and GP Janaka Malwatta and the physiotherapist and memoirist Fiona Murphy. Other writers who’ve spoken to the class include Eileen Chong, Anna Spargo-Ryan, Melanie Cheng, Maxine Beneba Clarke and the First Nations novelist and poet Tony Birch, whose participation is enabled by his position as the Boisbouvier chair in Australian literature at the University of Melbourne’s faculty of arts. The chair was established in 2015 with a $5m donation from Myriam Boisbouvier-Wylie and John Wylie.

“The creative responses produced by the medical students indicated not only a passion for writing and reading, but their obvious compassion for people,” Birch said. “They are the young people who will be caring for our health in the future. I felt privileged to share a classroom with them.”

In a narrative medicine lesson Birch gives his students a writing exercise.

Fiona Reilly and Mariam Tokhi co-teach the narrative medicine course.

He asks them to choose a simple framing device for a short narrative. To illustrate, he reads Raymond Carver’s poem, Happiness, where the narrator is viewing boys on the street outside through a window in his home.

If ever you find yourselves in a patient’s home, take a good look around, he says. To this end, he urges the trainee doctors to write about an object dear to them.

“My mother has the same teapot she’s had for 60 years,” he says. “I could buy my mother any number of new teapots and people have presented her with new teapots over the years. But she goes back to this old beaten tin teapot because she knows it is the one from which she’s offered tea to people for decades of her life.

“So, when you walk into someone’s kitchen or lounge room have a good look around you, because what’s around you will give you a great sense of that person and their life.”

And carry a notebook, he urges. (It might sound obvious, but how many writers forget the prosaic – yet profound – observations and thoughts that come to them on public transport or in the supermarket because they don’t have pen and paper?)

GPs in community health centres are withering from neglect | Mariam Tokhi
Lily McCann, a 22-year-old medical student, has done lots of creative writing in her spare time and hopes to find a place for writing in her future medical career. But she has never done a writing course.

“I thought the course would create a space for debriefing and reflection that would help me to process some of the things I had seen already as a medical student and some of the questions my experiences thus far had raised,” she says.

“I think that considering patients’ stories is so essential to thorough, holistic medical care. When you look at a patient from a narrative standpoint, you take them in as a whole person. It prevents you from processing them mindlessly as another diagnosis, another problem to be treated … narrative medicine encourages reflection in a way that deals emotionally, as well as practically, with encounters in the medical field. I think developing this skill helps you to be a better doctor and person.”

Students of the narrative medicine course are urged to carry a notebook to record observations.

Anton Lu, 21, began studying medicine because the would-be fantasy novelist’s parents told him a discouraging truth – “that authors need a day job”. The narrative medicine course seemed like a perfect way to bridge these worlds.

“I did not at all anticipate the relationship between story writing and medicine. It seems funny to say it when medicine is positively overflowing with unique stories, but we are taught to approach patients very systematically, going through the checklist of symptoms to arrive at possible diagnoses. Our assessments are timed – seven minutes – and you can’t afford 30 seconds to ask about someone’s cat, just as it is in hospital where doctors are often already working 16-hour days.”

He says the course has reminded him that the best writing explores the essence of what it means to be human. In doing so it “enters the same sphere as healthcare, wherein healthcare workers deal in life and death on a daily basis”.

Writing, he says, is a way for doctors to maintain balance; “to allow yourself to feel in the moment, but to then pour your emotions on to the page and begin sorting through them, whether that be through a self-reflective piece or in the struggles of a fictional character”.

Reilly and Tokhi insist that many medical practitioners are naturally creative thinkers and writers, as well as big readers of narrative literature. The medical profession has a rich literary history, producing some of the world’s finest writers, from Anton Chekhov to Oliver Sacks and Nawal El Saadawi.

I always dreaded going to the doctor. Finally having a great GP, I realise what I was missing- Rebecca Shaw

Reilly is an inveterate traveller who collaborates in paediatric medicine initiatives in China and Pakistan. “There was something about the combination of me being a doctor and having a creative practice that intrigued a lot of my colleagues, many of whom were secretly creative but weren’t willing to own that because they felt it made them seem less serious as clinicians.”

Tokhi says that western medicine’s patriarchal hierarchy, its overwhelming emphasis on biological science and encouragement of stoicism among practitioners discourages the emotional vulnerability central to good narrative writing.

Course participants say that considering patients’ stories is essential to thorough, holistic medical care.

“We know that suicide rates among doctors are higher than in the rest of the population,” she says. “We know that the culture of stoicism has a lot of downsides. It means that we push past our own needs, physically and emotionally, quite literally. We bury things we experience because that is what we are taught from day one …

“It’s been really beautiful to see this spirit of sharing and vulnerability. And doctors aren’t often encouraged to express vulnerability. In a consultation you’re often playing a role that needs to be a little bit authoritative. We are very much trained to conform to a type.”

Tokhi and Reilly spend a lot of time encouraging students to write in their own narrative voices – “which was a concept they found hard to understand,” Tokhi says. “But they learned that they were all individuals with something particular to bring to writing and medicine – and that it was not at odds with being a doctor to be fully and completely yourself.”

Reilly says: “Narrative medicine just has a way of opening a vein, somehow. And all this stuff just comes out that is deeply vulnerable but also very beautiful. You know, objectively, it’s very beautiful.”

And that can only make for better doctors.

• This article was amended on 14 June 2023. Rita Charon is the founder of narrative medicine programming at Columbia University, not the “director of the narrative medicine course” as an earlier version said. To clarify, Mariam Tokhi and Fiona Reilly are graduates of the narrative medicine certificate of professional achievement, not the masters degree in narrative medicine.

Crisis support services can be reached 24 hours a day: Lifeline 13 11 14; Suicide Call Back Service 1300 659 467; Kids Helpline 1800 55 1800; MensLine Australia 1300 78 99 78; Beyond Blue 1300 22 4636

© 2023 Guardian News & Media Limited or its affiliated companies. All rights reserved.

More articles exploring the subject below 

As a patient, I am angry; as a practicing physician, I am not surprised; and as a former dean, I am embarrassed

Gee, I wonder why patients have less confidence in their doctors. I get about 15 minutes for a consultation, a doctor who rarely even [pretends] to listen to me and who seems not to care…drugs with side effects my doctor never bothers to discuss and sometimes denies….”

Dismissed and Ignored

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TNAA Website – How to Videos

The TNAA Website has now been in operation for 20 months.

We strive to ensure our users and members understand how to access our content rich platform.  In order to provide easy to follow instructions we are using short videos to guide you.

Our videos are posted to our You Tube Channel 

How to submit a member story

How to access the members library

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TNAA Collaboration with Q Magnets in a Pain Management Trial

Our Association has been in consultation with James Hermans, the Managing Director of Q Magnets to offer an exciting opportunity for our members. “TNAA Collaboration with Q Magnets in a pain management trial”.

Although there has been research covering the effectiveness of magnets to help reduce pain, it is extremely difficult to set up clinical trials and set a generalised standard for people who live with chronic pain.  Every person who lives with chronic pain is unique in the pain they experience.

We believe that utilisation of Q Magnets should be applied in an individual treatment program, but to provide parameters we need anecdotal feedback and data that can be analysed.

In order to provide a protocol that could be applied, the Association has purchased 5 sets of Q Magnets, utilising donations this year, and will be loaning the sets of magnets to our members who are willing to undergo a 6-week trial, complete data collection surveys each day the magnets are used, and, provide feedback on their experience.  If an improvement to pain levels is experienced by the member trialling the product, Q Magnets have offered a 20% discount if they would like to purchase their own set.

The Association is hoping our members embrace this opportunity.  Members who agree to satisfy the conditions of the trial, (see below for conditions) can register their initial interest by completing our Q Magnet Trial Participant Request Form

Please complete participation interest form below.

Q Magnets Pain Management Trial Participation form
Q Magnet Pain Management Trial

Q Magnet Pain Management Trial

First Name
Last Name
Address
Address
City
State/Province
Zip/Postal
Country
Are you a current member?
Can you attend a face-to-face support group meeting?

In order for our Association to offer the loan of Q Magnet sets, it will be a requirement for the participants to agree to the following:-

  1. Each trial participant is a current financial member.
  2. The Product Loan will be facilitated at a face to face support group meeting.
  3. A refundable deposit of $50 is paid via the Associations website or cash.
  4. Participate in a 6-week trial.
  5. Completion of Loan Agreement.
  6. Completion of data recording each day the Product is used via the Associations website.

Note – data collection must be completed online to ensure protocols are adhered to.

Please complete the Daily Data Collection Form every day the Q Magnets are used – this should take no longer than 5 minutes.

Daily Data Collection Form
Q Magnet Pain Management Trial - Data Collection

Q Magnet Pain Management Trial - Data Collection

First
Last
What is your level of pain today? (check one)
Where is your pain? (check all that apply)
Which Q Magnets were used today (check all that apply)
Do you have bi-lateral pain (check one)
Which side of the face has pain? (Check one)
Q Magnet used and placement. (check all that apply)
Q Magnet used and placement (check all that apply)
Q Magnet used and placement (check all that apply)
Q Magnet used and placement (check all that apply)
Time Q Magnets were applied (click all that apply)
Approx length Q Magnets were applied (check one)
End of Day Observations - Pain Intensity(check one)
End of Day Observations - Pain Duration (check one)
End of Day Observations - Pain Frequency (check one)

Details of the Q Magnets to be included in the trial.

Q Bonus Package – General Use

Total retail cost of the product is $387

Members who trial them, will have all three types of magnets to choose from which will also help in gathering feedback to further support the research.

The update to the protocol from the information booklet is below.

  1. Use the HF20-3 over the trigeminal ganglion, just in front of the tragus
  2. For the central component of the nervous system, apply a magnet over the TCC (trigeminocervical complex), which covers C1, C2 and C3. So instead of placing the QF28-3 magnet over the occiput, place it just under the occiput. So that it basically finishes at the top of the hairline. Which still makes it tricky to apply, but a bit easier than over the occiput.

Loan Agreement and Terms for Q Magnets used for Pain Management Trial

Parties: This Loan Agreement (“Agreement”) is entered into between Trigeminal Neuralgia Association Australia, a registered Charity “Charity” with its principal office at 8 Wadsley Crescent, Connells Point, NSW 2221, , and the member, referred to as “Borrower,” with the contact information recorded on the Agreement

Product Description: The Charity agrees to loan the Borrower Q Magnets for a Pain Management Trial (” Product “) for a fixed term of two months from the date of this Agreement.

Terms and Conditions:

  1. Loan Term: The Borrower agrees to borrow the Product for a period of two months, commencing from the date of this Agreement and lodge a deposit of $50 via the Charity’s designated website platform at Home – Trigeminal Neuralgia Association Australia (tnaaustralia.org.au) or by cash.
  2. Return of Product: The Borrower shall return the Product to the Charity’s Support Group Meeting no later than the end of the two-month loan term. The Borrower is responsible for any shipping or transportation costs associated with returning the Product.
  3. Usage and Reporting:
    • The Borrower agrees to use the Product as directed and for its intended purpose.
    • The Borrower further agrees to diligently track and record their pain management progress and results while using the Product.
    • These progress reports shall be submitted via the Charity’s designated website platform at Home – Trigeminal Neuralgia Association Australia (tnaaustralia.org.au) or by utilising the manual data collection forms, throughout the loan term.
  4. Cost of Non-Return:
    • In the event that the Borrower fails to return the Product within the specified two-month loan term, the Borrower shall be held liable for the full cost of the Product, which is valued at $400.
    • The Borrower hereby authorizes the Charity to charge the Borrower’s provided payment method for the full cost of the Product in case of non-return.
    • On return of the Product the deposit value of $50 will be refunded to the Borrower.

Indemnification and Liability:

The Borrower agrees to use the Product responsibly and acknowledges that any misuse or damage caused to the Product during the loan term shall be the responsibility of the Borrower. The Borrower agrees to indemnify and hold the Charity harmless against any loss, damage, or liability arising from the Borrower’s use or possession of the Product.

Governing Law:

This Agreement shall be governed by and construed in accordance with the laws of Australia, without regard to its conflict of law principles.

Entire Agreement:

This Agreement constitutes the entire understanding between the parties with respect to the subject matter hereof and supersedes all prior agreements, understandings, and representations.

Execution:

By completing the Agreement Form below, the parties acknowledge their acceptance and agreement to the terms and conditions set forth in this Loan Agreement.

Please complete the Loan Agreement form – a copy will be emailed to the participant.

Q Magnets Pain Management Trial Loan Agreement
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Manual Loan Agreement below can be downloaded as an alternative to the online process

TNAA Q Magnets Pain Management Trial - Loan Agreement

 

 

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Pain Australia Resources

Pain Australia posts great resources on their website.  The resources include fact sheets that they produce and from other organisations.

These fact sheets are not only useful to our community but can also act as a training tool for family members or work colleague, who often have never heard the words trigeminal neuralgia. Often they have no understanding of the impact that a diagnosis of TN can have on a person either.

We aim to raise our voices when we can, and the best way to do that is by using educational resources which are well written, factual and provide support.

Chronic Pain Management

Pain Australia Fact Sheet 1- The Nature and Science of Pain

Pain Australia Fact Sheet 2 - Prevalence and the Human and Social Cost of Pain

Pain Australia Fact Sheet 3 - Clinical Assessment of Pain

Pain Australia Fact Sheet 4 - Multidisciplinary Pain Management

Pain Australia Fact Sheet 5 - Spinal Cord Stimulation

Pain Australia Fact Sheet 9 - Neuropathic (Nerve) Pain

Pain Australia Fact Sheet 10 - Self Managing Chronic Pain

Pain Australia - Chronic pain – a major issue in rural Australia

Beyond Blue - Chronic physical illness, anxiety and depression

Pain Toolkit - Resource Pack

Chronic Pain Management Strategies

Pain and Physical Activity

These resources can also be used as discussion point documents at support group meetings.  Let us open conversations about the challenges our community deal with every day.