The Dentist and the Dragon

The Dragon

As many of my readers know, we have a good medical system in New Zealand.  It’s good, but it’s not great.

We also have a very different system when it comes to injuries and medical misadventures.  For a start, in New Zealand we don’t call them Medical Misadventure.  Oh, it’s an adventure.  For some, like Derek, it’s the ride of your life.

But it is, like a broken leg, classed as an injury.  For Derek, it’s a “Treatment” injury.  He was injured because of medical treatment.  But that’s history.  Or should that be “His Story”.

When you suffer at the hands of the medical community, and are injured because of it, you get to have an assessment by the Government’s “Independent” “Insurance” Company.

Set up in the 1970’s, it was designed to stop any form of Litigation.  Stop people having to pay crazy amounts of insurance just in case they suffer an injury.  But like anything new, the concept and the reality can be vastly different.

This great independent organization, that was there for the injured, were under some very strict Insurance type rules.  And like any good insurance company, they change the rules as often they change their pants.  So, you have an injury you don’t know if you will be adequately covered.

When you read back through my blog you will see that Derek was covered for his Treatment Injury.  This injury is his Adrenal Insufficiency.  This impacts all parts of his life.

He had to give up driving because, although there is no obvious brain damage, he can no longer multi-task (Yes!  I was lucky enough to marry a man that could multi-task).  He is also one of the most intelligent men I have ever met.  This is not me saying this, his School History (top 50 in the country) says this.  He has been assessed as being unable to focus on more than one thing, his short-term memory is now not what it was, his ability to manage his stress is nothing compared to what it was.

But we manage.  He still has his job.  That’s thanks to an amazing boss.

So, the New Zealand insurance system, known as the Accident Compensation Corporation (ACC as we all know it) is our Dragon.

His treatment injury is permanent.  It affects many aspects of his life, and if we need help because of that, we have to go into the dragon’s cave, and convince that dragon to stop breathing flames, and let us past, to get to the help we need.

To this end, he has a “Case Manager”.  This is his direct contact in the dragon’s lair.  But this Dragon is very hard on their workers.  They are always being burned to the point the run, screaming from the lair, never to go back.

But on their way out, as the scream ENOUGH, they are supposed to contact all their “clients” and let them know they have reached boiling point, and they have run.

The Dentist

So why the back story?

Earlier this year Derek when for his normal checkup with the Dentist.  She checked his teeth.  They are ok.  He needs more work the longer he is on steroids, but it could also be the fact he has “reached a certain age”.   It comes to us all eventually.

She did x-rays, and then the bad news.  “You need to have your 2 remaining wisdom teeth out.”

“OK can you do it?”  Ah, the naivety of my darling husband.  Hell NO!  No way she will do it.  She doesn’t mind the fact he is on warfarin to stop him clotting.  He can even keep his INR within his designated range.  She isn’t even worried that he has suffered CAPS.  What she is terrified about is the stress it will cause him, and the very real, and high risk of an Adrenal Crisis.

“You need to see an orthodontist.  They will do it under anesthetic, in hospital, where they can keep an eye on you, and monitor you properly.

Here’s where it gets a bit real.  Oral and Maxillofacial Surgeons cost money.  OK, not as much as in the US, but a lot for little old NZ.  And I sure as hell am NOT paying.

I don’t mind paying $1500 to have it done in the local surgery, under local anesthetic.  But an oral surgeon, anesthetist, a hospital bed for the day (or longer).  No way.  We would not have to pay that if he didn’t have AI, so no way am I paying.

Fighting the Dragon

Off to the Dragon’s Leir we go.  Putting on our bravest face.  Derek puts the words on paper, and I then writing them in a firm way.

Please Mr Dragon, can we have the money for the surgery.  We should be covered as it’s due to the treatment injury he needs the high-risk extraction.

I don’t know if it’s the words I use, but we were told “Please, who would you like to assess you.  We have Surgeons on our supplier list.  Use one of them”.

Well, this is going to be a battle then.  And the line has been drawn.  We have to use one of THEIR suppliers.  And anyone who has dealt with ACC know that their “authorized suppliers” are not there to spend ACC money, they are there to reduce that spend.

First blood to us.  The Oral and Maxillofacial Surgeon we wanted to specifically use, is on THEIR list.  We get our choice.  But this is just stage one.  The visit to the Orthodontist to get an assessment.

Does Derek need the extractions: Absolutely, and soon, there is already jaw damage being caused by the teeth.  It will soon become painful, and there is a high risk of infection.

Does it need to be done by a specialist:  Absolutely yes.  These could be done in a standard dental surgery, but if something goes wrong, the teeth break or they are difficult extractions, then it would have to stop, and then it would become an emergency extraction.

Does Derek need General Anesthetic.  Yes.  Due to his complicated situation, a General, even though stressful on the body would be safer in case something goes wrong with the extraction.

We wait for the report to come back from the Oral and Maxillofacial Surgeon.  It didn’t come.  Oh, yes it did, it went to SPAM.

We then draft a very short email to Derek’s Case Manager and forward the report and the quote.

We decide that we will be willing to split the cost.  We pay what it would cost in a normal dental surgery, ACC pay the rest.  Now we wait to see what they decide.

Again, we waited.  The first thing we were expecting was a letter from the Case Manager saying “thanks for your email, I will forward it for decision”.  It never came.  So, a week later we sent it again.  Having fought battles with this Dragon before (and won) we did our usual.

“HI, you haven’t responded to our previous email.  Please tell us what is happening, we are reattaching the documents in case they were stopped at your gateway.”  We sent the email again 6 working days later.  Then we sent one without the attachment.  Still absolutely no response.  So we had one more go.  But this time we sent a copy to their “Complaints” department.  We have learned through the 6 years so far of battling ACC, that we need to do this to make things happen.

We received a very quick response, but NOT from our case manager.   The response included “ Ann has left ACC, this is why you wouldn’t have received a response yet.  We have sent your email to someone else”.  That was it.  Still no idea who.

Apparently, “Ann” ran so fast out the door of the Dragon’s Leir, she didn’t have time to let anyone know she was going.  We were put on to someone else.

We waited until “someone else” then responded to us.

So off to the complaints office we trot.  This time it was a “Formal” complaint, not just a CC.

We want to know who our case manager is, why have we not had a decision on the dental work, why were we not told our case manager had left, oh, and why, after making the first “complain” was his right to have what is called “Driving for Independence” looked at, and why was our GP being asked whether Derek was now able to drive safely, and therefore cancel the driving provided.

Suddenly a swathe of emails from the Dragon’s Leir.

  • SORRY! We have given you TWO case managers so this never happens again.
  • SORRY! Please resend the information and we will get it to our assessment team urgently.
  • SORRY!  I hadn’t read the case file fully, and just saw that your driving was renewed 6 monthly, and that hadn’t happened so was reassessing your need.  I now understand that it is a permanent (lifelong) Driving service we provide.

I guess, if you have to be given a sword to slay a dragon, it’s great when you get the RIGHT sword.

I have mentioned before, and if anyone fighting ACC reads this again, I will repeat.  YOU HAVE RIGHTS!  And for Derek, the key right is that they MUST take his injury into account whenever dealing with him. They had also failed to properly communicate with us, along with other violations.

For someone with a broken leg it’s easy.  They simply say, here, have some crutches and come on in for an assessment.  With a Mental disability due to an accident, it’s not as easy, and the sword they are given is NOT a strong one.  They are disadvantaged as they must fight with all the might of someone fully functional, but who is missing two arms.  And the sword can be taken at any time, just because they can.

But for Derek, they can’t do that.  His covered condition is Adrenal Insufficiency (although the regularly get that wrong, and are currently calling it Adrenal Sufficiency).   But as it is written everywhere that it is the lack of the stress response hormone, it’s a “Gotcha”.  They are not allowed to cause him stress because it will make him sick, and that is not taking his injury into account.

And they have come to the party.  Not quite with the best offer, but it’s a start, they have agreed to pay for the hospital, and the anesthesiologist.  We haven’t finished, but we have time.

So now the preparation begins for the 24 January 2020 (baring anything going wrong in the meantime). Derek is scheduled for the first appointment of the day, in a private hospital, for his tooth extraction, and a day’s monitoring to ensure he doesn’t get sick.

 

 

The Half-life of Facts

Aside

I was watching QI this morning. It’s a show where the facts are “Quite Interesting”, and generally obscure.

This morning the episode said something I was so intrigued with, that I rewound it to.
It stated that “At medical college, they usually teach that half of what medical students will learn, will be considered untrue in 10-20 years. This is termed the “half-life of facts”. That is to say that you know that half of the information will be untrue, you just don’t know which half.”

I found that to be Quite Interesting. Enough so that I decided to look the fact up, and see if there was any truth to it.

Samuel Arbesman, a mathematician at Harvard, titled his new book “The Half-life of Facts”. When talking to the Economist, he stated:

For example, in the area of medical science dealing with hepatitis and cirrhosis, two liver diseases, researchers actually measured how long it takes for half of the knowledge in these fields to be overturned. They gave a whole bunch of research papers from fifty years ago to a panel of experts and asked them which were still regarded as true and which had been refuted or no longer considered interesting. They plotted this on a graph. What they found is that there is a nice, smooth rate of decay; you can predict that every 45 years, half of this particular sort of knowledge gets outdated.”

But why am I citing an article in the Economist. Because you probably know a Dr that is still using that 50% of knowledge that is now outdated. Yet they treat you based on that knowledge.

According to Dr. Michael Gold from the Medical University of South Carolina; To paraphrase:

The half-life of medical knowledge is seven years.”

If Dr’s are not keeping up to date, they may be treating you based on what is now outdated knowledge. We have found one such Dr in the guise of the Medical Advisor of one national Advocacy group

He trained 50 years ago. Based on the half-life of facts, if he finished his training in 1970, by 2010, almost 50% of what he learned is outdated. Some of that is “knowledge” is still stating as fact which is on the groups public webiste. When we recently questioned this knowledge (which we showed with research papers to be obsolete) we were told by the Advisor “I don’t care.” (words in writing).

This attitude by the “Medical Avisor” of a major Advocacy Group for a rare condition leads to several questions.

  1. Why is he holding the position? Is it just that it has some kudos?
  2. How does his obsolete knowledge help patients today to live a better life when other Doctor use that “knowledge” to treat the patient.

Knowledge is Power, but obsolete Knowledge is DANGEROUS!

Continuing education is key to good Doctoring. And that continuing education must include reading recent research on the conditions they are treating and accepting that just because it goes against what they have been taught, doesn’t mean it is wrong, or that the Dr researching and promoting the new information is doing it “for ulterior motives”.

Next time you speak to your Dr, ask him the date of the last Research Paper was that they read? If it is before 2000, then there is a better than even chance that half that knowledge is obsolete, or will be in the next couple of years. Ask them if they have heard the term Half-life Of Facts.

Some will agree, others will get upset because they will be reminded that they are not as up to date as they should be, and others will probably refute the statement, or get angry about it. Most likely the latter, are so well past their half-life with knowledge, that they should perhaps be ignored completely.

The Expert Patient

As far back as 2002 an article was written for the British Medical Journal encouraging patients to become “Expert Patients”.

Clin Med (Lond). 2002 May-Jun;2(3):227-9.
The expert patient: a new approach to chronic disease management for the twenty-first century.   Tattersall RL1.  Author information

Abstract
The expert patient: a new approach to chronic disease management for the twenty-first century, produced by the Department of Health, recommends the introduction of ‘user-led self management’ for chronic diseases to all areas of the NHS by 2007. The premise is that many patients are expert in managing their disease, and this could be used to encourage others to become ‘key decision makers in the treatment process’. Furthermore, these expert patients could ‘contribute their skills and insights for the further improvement of services’. It is hypothesised that self-management programmes could reduce the severity of symptoms and improve confidence, resourcefulness and self-efficacy. It is stressed that this is more than just patient education to improve compliance. Instead there should be ‘a cultural change…so that user-led self management can be fully valued and understood by healthcare professionals’. I point out that these ideas, while welcome, are not particularly new. Achieving the desired culture change will not be easy.

“Expert patient”—dream or nightmare?

BMJ 2004328 doi: https://doi.org/10.1136/bmj.328.7442.723 (Published 25 March 2004)Cite this as: BMJ 2004;328:723:

The concept of a well informed patient is welcome, but a new name is needed

Since the chief medical officer for England first introduced the term expert patient, it has been picked up and used very widely.1 During this time, the notion of the expert patient seems to have been criticised by doctors at least as much as it has been welcomed.2 If one asks lawyers, architects, social workers, or management consultants whether they prefer clients who take an interest in the issues they face and are motivated to work in partnership to achieve successful results, the answer seems obvious. So why does the idea of expert patients provoke such antipathy within the medical profession?

There is even a Training Course across England called the “The Expert Patient Program which states:

“Creative thinking is key for the Expert Patients Programme (EPP), a thriving Community Interest Company that gives people more control over their conditions through cognitive therapy courses.

It has made a particular difference to people with long-term illnesses, such as diabetes, arthritis or respiratory problems, by teaching them how to self manage and monitor their own symptoms. “It’s giving patients more control,” says Renata Drinkwater, Chief Executive (interim). “Courses like these are proven to make a difference. They boost confidence and, in some cases, can delay the onset of other conditions. They also have other benefits, like reducing the amount of times the patient needs to go into hospital or use Accident and Emergency.”

Conclusions
So, will the vision set out by Professor Donaldson and the Expert Patient’s Task Force work? The simple answer is ‘no’, unless there is a sea change in attitudes among patients and, more importantly, healthcare professionals.

What About You?

As someone with a chronic illness, would you consider yourself an “Expert Patient”?  Do you consider your Dr a Good Dr or a Bad Dr.  Is he bad because he has a history of harming patients, or a bad Dr because he doesn’t know your specific condition.

As a patient with a chronic illness you go to your Dr expecting a good level of knowledge, and that they keep their knowledge up to date.

You go to a specialist with the same expectation.

What happens though if the chronic illness you have is rare condition?  If your Dr or Specialist only has 1 patient with your condition, but over 1000 with a more common one.  Do you expect them to keep their knowledge up to date?

The reality is, if you have a rare condition, you can’t and shouldn’t expect them to be as up to date as you want, or to have the knowledge you would like, at least not when you are a new patient.  It’s different if you have had them for 2, 3, 4 or more years.

Instead, what you CAN expect, is to be listened to, to have them acknowledge that it is a learning process for you both, and that if you are able to provide relevant up to date information, they will accept it and not dismiss it because it wasn’t what they learned when they were training 20/30/40 years ago.

Yet this is also not always the case.  So instead you learn what you can about your condition, to fill the gaps and hope you can at least work around your Dr.

In truth, a patient goes to the specialist wanting help to improve their quality of life.  If you are lucky your specialist, knowing you are coming, has done a quick review of your medical notes, a quick read up of the condition.  But with that, they have decided, almost before you walk in the door, what treatments they will or will not offer.  If you ask a question they are not expecting, you take them off guard.  But they don’t want to appear like they don’t know the answer (which they probably don’t) so they either ignore the question, or give some answer they drag from the back blocks of their brain where they remember something they heard once years ago, whether right or wrong.

These are the Dr’s we hear about in the forums.  The ones that “don’t get it”.  We get frequent cries of “I’ve fired my endo.”  “My Dr is an Idiot.” “I can’t find a decent Dr who knows anything.”  And I can see why they say it.  I have heard the horror stories of medical appointments, ED/ER visits, lack of knowledge and but refusal to acknowledge it.  These Dr’s need training in your condition, but they are not getting it.  Why?  Is it lack of time?  Lack of interest?  Or maybe they don’t know where to start?

What would happen if, instead of leaving frustrated, angry, and ready to fire them, you sat down and tried talking to them as equals?

What if you opened up the consultation with a different tact.  If, instead of expecting them to know everything, or worse, you go in expecting to have a bad appointment with them knowing NOTHING,  you went in knowing they didn’t know anything, but were open to learning.

What would happen if you opened up the conversation with something like “I am struggling with my conditions, and with the general lack of knowledge and research available.   I don’t know how you Dr’s keep up to date when there are so many rare conditions out there.  I need to get a better quality of life, perhaps we could learn and work together on how to better manage my health.”

What would your Dr say?  You are not challenging their knowledge, but you are also not putting expectations on them to know it all.   If they take that bit well, perhaps go on with “Do you have any recent research I could read, or a website where I could go to get good up to date research on my condition so I can learn more about how to help myself”.

The worst that could happen is they dismiss you out of hand and go back to their personal ideas. If this happens you have two options, you can get upset and leave the consultation frustrated then go on line to rant.  Or you could ask them straight what their objection to having a knowledgeable patient is.

By now you have nothing to lose
if you have already decided to leave
and find a new Dr?

You might get a surprise.  You MIGHT get a Dr that is willing to work and learn with you.

The Expert Patient may not only need to be an expert in their condition, but also in negotiation.  A Win/Win negotiation is an art.  It requires giving the Dr something they really need (which may be stroking their ego) but also getting what you need, which is  a Dr willing to work with you.

Dr’s won’t learn, if they are not taught and quitting a Dr because he doesn’t already know simply means that the next patient will get what you have, a Dr that has neither the time or interest to learn.  You never know, you might awaken in that Specialist or Dr, a new interest in your rare condition.  Then he won’t be a Dr to run from, but a Dr to run TO.

And Another Cure Emerges.

Aside

Again, the Adrenal Insufficiency Community have been notified of another Cure (actually the same “cure” just by another Quack.

I am not going to post a link to the site, but I have written an open letter to the person that perports to have a cure.  If you read the site, you can tell he has simply gathered other peoples opinions, wrapped it up in pretty fonts, and spat it back out.

My open Letter  Please feel free to share this around.   I will post if he ever replies (which we all know he won’t).

“An open letter to Josh Axe

I am loath to call a quack a Dr even if you managed to pass your thesis. What was it on by the way as it was clearly not on Adrenal Insufficiency.

I have been given, by someone concerned about my husband’s health, a copy of the information you post on your website, regarding Adrenal Insufficiency, and your belief you have the cure.

Having read it, I have serious concerns.

  1. You are not a medical practitioner, but feel you have the right to give dangerously inaccurate medical advice.
  2. You clearly have NO understanding of Adrenal Insufficiency.

Let me help you out.

You state “One type, referred to as Addison’s Disease, is caused by illnesses of the adrenal glands themselves, including adrenal cancer, infections or bleeding (called “primary adrenal insufficiency“).” I have to ask why, in your page, this linked to Secondary, not Primary insufficiency?

The Adrenal Glands are not “Ill”. They have been attacked by an Autoimmune response. This occurs over a period of years in some people. With a healthy diet (such as you suggest) you may be able to prolong the final outcome of death due Adrenal Crisis, but you can not stop the destruction of the gland and the inability of the adrenal glands to produce cortisol. Even experts in the field do not know what causes the autoimmune response that kills the Adrenal Cortex, how do you have the gall to pretend you do.

Once diagnosed, a person normally has less than 90% of BOTH glands not functioning. Without replacement steroids FOR LIFE you will die.

You state: “If you visit a doctor about adrenal insufficiency (including an endocrinologist who specializes in hormonal diseases), she or he might recommend you take medications to help speed up the healing process and reverse cortisol deficiency symptoms. Taking glucocorticoid medications like prednisone or hydrocortisone are the most common treatments, and the dosage of these depends on your level of stress, any present infections, medical history and injuries. The primary reason for taking hormonal replacement medications is to bring your cortisol and other hormone levels up to normal as quickly as possible.”

Whilst on the surface this appears correct, your conclusion is erroneous, and dangerous. Steroids are not given to “begin the healing process”. They are given because without them, you WILL die. They are not a quick, short term, or temporary fix. They are life saving and permanent. The only remotely true parts of your statement are “bring your cortisol” …”levels up to normal”.  It is done as quickly as possible because if they give you 1 mg a day, it would not keep you alive. The minimum dose for an adult with Adrenal Insufficiency either Primary OR Secondary is around 20mg/day (very few survive on less, and get out of bed).

You are correct that the dose varies depending on what stress is in your life, but what you don’t say is that that stress can include an infection, a cold, a broken toe, or a serious fright because you were witness to an accident (you don’t actually have to be in the accident). All of these “stress’s” are going on around you at all times, and you are not able to avoid them. The healthy person will produce more cortisol in their body. Those with genuine AI will not. No amount of healthy eating, meditation, vitamins, will remove these stressors from your body, and if you do not receive adequate steroid cover during these times, you can die. This is called “stress dosing”. Again I will tell you, normal people do this without knowing. You do not make your adrenal glands tired by producing more when you need it. That would be like saying that you will make your heart tired and cause it to stop beating, by working out at the gym or playing sport.  Would you tell an insulin dependant diabetic that they don’t need their insulin because they just need the right nutrition. I hope not.

You promote Licorice as something to take to assist in this miraculous recovery.  You have clearly copied this of someone elses website as they took one very small part of a study and spouted this drivil as well.   Licorice will increase the time that cortisol stays in the body, however, you need cortisol in the body to start, and once you have what you call severe adrenal insufficiency, which you are normally diagnosed while in ICU by real medical professionals (not someone with a Doctorate in Chiropractic) trying to save their lives, there is no option but to take REPLACEMENT steroids. This is not touted as a cure, but you are replacing the steroids you do not produce yourself. THEY ARE ESSENTIAL IF YOU WANT TO LIVE.

I do not have a Medical Degree, I also do not have a piece of paper telling me I know about nutrition. What I do have, is a husband with Severe Adrenal Insufficiency. This means that for the rest of his life, he must take steroids and that no matter what his diet is like (and we have already ensured he eats correctly, he will never be able to stop taking steroids because his adrenal glands will never recover.

What I am sick to death of is people like you, pretending to be Medical Professional’s, and spouting your drivel, for others to constantly ram down our throats, about how he can get off his steroids, all he has to do is change his diet. He would be dead in 3 days without steroids, and after the first 12 hours, he would not be able to eat your lovely food suggestions, or take your vitamins etc, as he would be so unwell, all he would be doing is vomiting, and suffering constant diarrhea everywhere.  I know, because I have seen it when he goes into crisis from something as simple as a common cold.

What you put on your website is dangerous and has the potential to kill people. We have lost enough people in the AI community who are miss treated by medical professionals without people like you jumping in to an area you have NO knowledge about, no authority to lecture about, no qualification in and selling your snake oil cures.

If someone who has studied Endocrine disorders as part of the Medical Degree, does not understand completely, the dysfunction of the HPA Axis, how do you, someone who has no real medical training, feel you have the right to spout your cure that will take “Up to 24 months for severe adrenal insufficiency” on a publicly available website.

Your site is tantamount to attempted murder and placing a disclaimer, in light blue on a dark blue background so you think you have covered your ass legally does not take away your gross negligence.

In conclusion, Adrenal Insufficiency is a genuine, life threatening medical condition. It is not a condition to be taken lightly as you do, it is not a condition to be treated with contempt, as you do, and it is not a condition that you are qualified to comment on. It is so far out of your scope of practice that you are going to be reported to the FDA if your information is not taken down.

P.S. There is a bet on in the Adrenal Insufficiency community that this letter will be ignored by you, as you avoid anyone who points out your incompetence. Feel free to prove us all wrong by acknowledging this email.”

 I doubt very much I will ever receive a response to this.  It will be trashed before it makes it to his personal inbox.