Pain Patient Advocacy Aust-fighting forced opioid tapers

21/03/2025

Who is willing to write to their local MP?

To be blunt, I did this at the last election and wrote up several versions of letters about chronic pain and forced opioid tapers. It was cut and paste. And provided a link to find your local MP if you're not sure.

4 people did it. Or rather, 4 people hit the webpage.

So why? This is the best possible time to make an impact. Every one of these people is desperate to hold their seat, whether it's a gravy train or a vocation, I don't know. Some of each. But they ALL want to keep their seat.

if EVERYONE hit them on the same day. Sent an email on the same day, then we would make an impact.

If every person on long-term opioid therapy, every person who has been force tapered, every family member, every friend, every loved one, if we ALL hit them on the same day....we would be heard.

Why can't we do that?

Why won't people DO anything? This is NOT hard stuff.

there are 3 people that i know of, in Australia, fighting this fight.
A quick tour of the groups on socials, facebook, twitter, bluesky, threads, insta, linkedIN...there's a lot of people complaining. Not a lot of people DOING.

we won't achieve anything until we work together. Why can't we do that?

Last election I provided all the tools. email templates, and email addresses for every MP in the country. A whole lot of work. for me.

FOUR people hit the page. Maybe four people wrote their MP.

Will you do it? I can write the letters, I can find your MP, I can make it as easy as three clicks....but will you do it?

I have devoted the last 8 years of my life to this fight. I should have been living. Cos now, its me being force tapered. I cant survive without my pain medications. I cant cope wth the pain. But i have been fighting for 8 years. Long before this crisis hit me personally.

Long before then.

Tell me if you will send the email. And I will give you the tools.

17/03/2025

Good news for woman's health.

An IVF medication, contraceptive pill and an endometriosis treatment are all set to become cheaper in Australia, potentially changing the lives of thousands of women.

A new treatment for a common painful condition and two other drugs will be made cheaper to improve access to treatment for Australian women.

16/03/2025

Where I live (Canberra) it's near impossible to find a doctor who will bulk bill.

I am a disabled pensioner, and I do NOT get bulk-billed by my GP.

She charges full rate. THat's $110 every four weeks and I get about $40 back.

I spend more on health care a year than I do on my mortgage.

I don't have a choice; I have multiple chronic illnesses.

I used to see nine consultants regularly, but I have dropped those down to the most essential - neurologist, rheumatologist, pain management and GP. I no longer see an immunologist, gastroenterologist, endocrinologist or hemotologist, as these specialties were largely monitoring my various diseases and health conditions. Obviously, my health NEEDS monitoring and now I am going without that. If there are issues, they will not be caught early.

But I can barely afford the 'essential' doctors, let alone the medications, as it is.

What's your situation? Does your GP bulk bill? Are you seeing specialist doctors regularly? Do you spend more than your mortgage on health care?

We are already knee deep in a user pays Americna style system, with the added disadvantage of our private health cover NOT covering surgeries and procedures without a gap/copay.

I can't afford various treatments that could improve my quality of life. That's the bottom line. Even though I pay for top private health cover, despite being on DSP and not being able to afford it.

THere are many procedures and treatments that are only available to private (paying) customers. THe public health system covers the basics. ANd is brilliant in an emergency, for acute care.

the public system is terrible for chronic care and preventative care.

Let me know your thoughts. We are far closer to the US system than most people realise. And they don't realise until they, or someone they love, develops a serious chronic illness.

Healthcare costs are rising, while our population is ageing and the relative proportion of workers to look after them is declining. How will we cope in the future? Is private cover helping or hindering the public system? And will Australia eventually adopt a user-pays healthcare model like the US?

28/02/2025

Yesterday, I put in a formal complaint about my pain doc to the Faculty of Pain Management, which is the governing body for all pain management doctors in Australia and New Zealand.

My pain doc has met me twice, and despite my asking for a return to my previous (higher) dose of oxycodone, on which my pain was much better managed, and letting her know I was suicidal with the pain, she chose to force taper me.

I was on 100MME. She now wants to get me under 60MME.

This is totally unrealistic for me. I can't survive on that dose; the pain will be constant and unbearable. I live with refractory RA, CIDP and a rare bone disease. I also have more minor pain from endometriosis, bursitis, degen disks,stenosis,spondylosis.

She has known me for a sum total of about 40 minutes and she told me my dose was too high. She quoted 'government cracking down' and she had no choice. She gave me some rubbish about 'you could just overdose at any time' and, even worse, she told me my pain would NOT get worse on tapering.

I told her she was wrong, my pain WOULD get worse. I know this because last time I was tapered, my pain got much worse and remains that way.

I told her clearly I do NOT wish to taper my dose, and this is against my wishes.

She said she had no choice. She had zero care factor.

This is the standard stuff pain docs are doing. I read similar stories all the time. I have tried to get my GP to ignore her direction, but my GP says she has to do the taper, now that the pain doc has initiated it. I understand that it would be difficult, but not impossible, for my GP to ignore the taper direction. So it has affected my previously very good relationship with my GP as well.

I have no choice but to formally complain about my doctor.

What she is doing is not evidence-based medicine. She is actively harming me, her patient, and making my life unliveable. She is actively increasing my pain, with no alternative pain relief available.

Usually, I would complain first to the practice manager. But she and her husband own the practice.

Therefore, I had to go to the FPM.

A complaint like this is a pretty serious step. She is going to be furious, no question. But I have no choice.

I'll let y'all know how it turns out. I've already received acknowledgement of my complaint, and assurance that they are investigating.

Has anyone else formally complained about their doctor in regards to pain management? Keen to hear how other people have fared.

07/01/2025

This is one of those annoying, deceptive headlines:

‘Breakthrough’ blood test for endometriosis: Study

Makes it sound like a blood test is available, or will be very soon.

In fact, it is just promising initial research. An actual test is still a long way off.

It's good that research is being done, but I HATE deceptive headlines...click bait...only there to give a false impression and make you click on the link.

A new and non-invasive way to test early for the often-debilitating condition has been developed by Australian researchers.

05/01/2025

Too much vitamin b6 can lead to painful peripheral neuropathy
People often think that supplements can do no harm, after all, they’re ‘natural’, right?

Just because something is natural, does not make it better, or harmless. Supplements and herbal remedies have just as many side effects as pharmaceutical medications. But at least with pharma medications, you know what’s on the label is what's in the tablet.

NOT always true with supplements. And you can buy as much as you want, enough to harm yourselves.

Honestly, pharmacists should be monitoring these supplements, in the same way they monitor other medications. After all, they sell them, to make a profit. They also have a duty of care to ensure you are taking them as prescribed, or at least in a way that will not be harmful.

As for peripheral neuropathy, in most cases, once you stop taking the B6, and levels return to normal, the neuropathy resolves. But not always. Sometimes it is permanent.

So if you’re taking lots of supplements, be sure you know exactly what’s in them. What they are for, and assess if they are helping, or doing what you want them to do. Because most supplements are nothing but expensive p*e!

A growing number of consumers are presenting with symptoms linked to high levels of vitamin B6, pathologists say, while the supplement industry goes unpoliced

17/12/2024

More on doctor dismissing period pain:

“Queenie Main’s period pain gets so extreme that her legs shake, rendering her unable to walk or even stand.”
After seeking out a female doctor, she was put on the contraceptive pill at 14, which she says made things worse, with bleeding going on for 12 days per month. But the doctor refused to listen.
“The message Main received was “dismissive ... ‘no you don’t have endo, all women get cramps, it’s normal’.”

Parents of teenagers who experience severe period symptoms, including debilitating pain, struggle to get the right help.

12/12/2024

Another example of women’s chronic pain NOT being taken seriously.

1400 Australian women lose class action against Bayer over contraceptive device

Justice Andrew Keogh said the group’s allegations against Bayer failed to prove that the Essure implants led to adverse effects like their heavy bleeding and serious chronic pain. He stated the women’s claims were ‘far from compelling’.

A similar case was brought by a group of women in the United States against Bayer, which resulted in the pharmaceutical giant agreeing to a $US1.6 billion settlement. However, that settlement had no impact on the Australian case.

Clearly, there was a case to answer.

Justice Keogh’s judgement is set to be formalised in the coming days, with an appeal possible next year.

Women who suffered chronic pain and bleeding have lost a class action lawsuit against pharmaceutical giant Bayer over a contraceptive device.

08/12/2024

Another example of 'chronic pain' cured by surgery.

One of our main advocacy pushes, is to educate on the difference between chronic primary pain and chronic secondary pain.

All pain is assumed to be primary pain and we are only offered treatments for primary pain. Those treatments would be physiotherapy, psychological therapies, pain science education, and meditation and mindfulness exercises.

But chronic secondary pain, where there is a disease process or injury causing the pain. can often only be treated with surgery, procedures and opioids. It can't be cured with treatments for primary pain. This leaves people who live with chronic secondary pain with untreated or under-treated pain.

Chronic secondary pain has been erased from the narrative, to deny people access to opioid pain medications. This is why we fight to get our pain recognised. And proper treatment for the pain.

What if this young woman were only offered treatments for primary pain? She would still be in pain, for the rest of her life, needlessly. Now, she is cured, and living a normal life, pain-free. This is a dream for many of us.
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Currently, many funded advocacy groups, do not recognise the difference between chronic primary pain and chronic secondary pain. Therefore, they are currently part of the problem.

Knowledge is power. Knowing the root cause of the pain is essential for proper treatment. And education and psychology will NEVER fix pathology.

Taylor Carlisi, now 27, put a lot of wear and tear on her body at a very young age.

08/12/2024

One in three people has felt forced out of a job because of their chronic condition, or chronic pain.

No surprises there...I would imagine its likely more.
Has anyone here been forced to leave a job because of their pain? Were there any accommodations that could have been made that would have allowed you to keep your employment?

Back pain, mental health concerns and arthritis are just some of the chronic illnesses affecting two in every five Australian workers. A new report has found a third of those experiencing such conditions have left jobs due to stress and a lack of support. Many have also experienced discrimination…

07/12/2024

Yet another story of a woman's pain being dismissed, and almost causing her death.

This is the price of medical misogyny.

The Sydney Morning Herald is doing something about it, and telling the stories of women who have been ignored, dismissed and had their pain left untreated by the health system.

You can tell your story, there is a form in the article linked below.

Keira Rumble was a victim of a poorly researched health phenomenon known as medical misogyny. Its consequences can be fatal.

17/11/2024

This is a recent substack I wrote. It documents my decent into a pain crisis, and how impossible it can be for a pain patient to get help. Doctors are impossible to contact directly, receptionists act as gatekeepers, and offer an appointment in four months...in response to a person in crisis.

Have you experienced anything like this? Can you get in touch with your doctors when you need to? Do they fit you in for emergency appointments if you are in a pain crisis?

Please let us know, below.