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.

 

 

I will take care that they suffer no hurt or damage.

The Hippocratic Oath is an ethical code attributed to the ancient Greek physician Hippocrates, adopted as a guide to conduct by the medical profession throughout the ages and still used in the graduation ceremonies of many medical schools.

The Editors of Encyclopædia Britannica Last Updated 11-9-2014

hippocraticoathThe part of the oath that people still quote is:

“With regard to healing the sick, I will devise and order for them the best diet, according to my judgment and means; and I will take care that they suffer no hurt or damage.”

It has been turned into a simple line “FIRST DO NO HARM”.

Breaking the Oath

Our belief is that Dr’s do their best to keep us well, make us well, or treat our ills. But even if they can’t, they will not do anything that could cause us harm.

We trust they will do “everything within their knowledge and skills” to follow these rules.

We have seen what happens when they don’t.  Read A Catastrophic Event

What if they have the knowledge, they have the information, they have the people trained to deal with an illness, to ensure they “do no harm”, but they fail in the very basics of actually utilising the knowledge and skills at their disposal, and they do harm?

In an previous post I talked about the fact Wellington’s Capital & Coast District Health Board (CCDHB), failed us by not “bridging” Derek with Clexane when the stopped his warfarin for surgery. While investigating what happened we found out thay actually had documents that had a plan written down for people with Thrombocytopenia (low Platelet count) and a blood clotting disorder.

This plan required that if they ever stopped his warfarin, he should be put on Clexane, to prevent clotting. Unfortunately we didn’t know this.

Why didn’t we know?  Because our knowledge was based on previous behaviours by CCDHB.

CCDHB Did Harm Twice

CCDHB’s Guidelines for Therapeutic Anticoagulation Management (TAM) states that Warfarin needs to be stopped for 5 days for invasive procedures. During this time you must be bridged with Clexane. Once the invasive procedure is completed, as long as you are not bleeding, you are then started back on Warfarin. You are kept on Clexane from stopping warfarin, to the point at which your INR is at a therapeutic level for you.

They don’t specifically mention a prostate biopsy in their TAM document, but they do mention procedures such as gastroscopy’s, endoscopies etc. The idea being that if it is “invasive”, i.e. taking a biopsy, where there is a risk of bleeding, Stop Warfarin, Bridge with Clexane, Restart Warfarin, stop Clexane.

We have now discovered that when Derek had his Biopsy in May 2012 CCDHB did not follow their own written procedures. They stopped Derek’s Warfarin. There was no Bridging Plan.

CCDHB’s Plan for Biopsy:

Stop Warfarin for 5 days before biopsy.
Have Biopsy.
2-3 Days after Biopsy, restart Warfarin, if bleeding has stopped.

Nowhere in the medical notes, is there any reference to Clexane.  Hence we were not surprised when Derek was told to again stop warfarin for surgery.

But Wait…. There’s More.

An important piece of information we have recently found out about Warfarin.

We always believed that the ONLY time Derek was put on Warfarin and Clexane at the same time was when he first suffered his DVT and it was to try and speed up the dissolving of the DVT. WRONG!

The reason you use clexane when starting on warfarin is because, when you first start warfarin, it actually works in reverse. Until you are therapeutic, the warfarin increases coagulation of your blood, until your body adjusts, which takes around 3 days but should always be checked with INR testing.   So, to prevent something going wrong i.e. a thrombotic storm, you are put on Clexane to keep you safe, i.e. Clexane is used to take care that they suffer no hurt or damage.

The key to all this is a thing called Thrombocytopenia. This is the term used when your Platelet count is chronically low. Derek’s Platelet count sits between 105 and 120 (Normal Range is 150-400).

Like many things, Derek wanted to know more about Platelet Counts, warfarin, Sepsis and CAPS, so started looking at medical sites and looking at his blood results (we keep the all). In doing this we discovered that, apart from Antiphospholipid Syndrome, there is another reason for low Platelets. It can be an indicator of Disseminated Intravascular Coagulation (DIVC). When you have APS, and you suffer DIVC, it is considered CAPS.

One thing that does NOT cause low Platelet Counts is Sepsis.

Back to the medical records. This time, we went to the Hutt Valley DHB records of when Derek presented at Hospital the day after Biopsy.

Remember, CCDHB did NOT bridge Derek for his Biopsy.

In Derek’s HVDHB medical records for the admission on the day after his biopsy (he was still not on any form of anticoagulation) it clearly states “Bloods Sent”, which means they had drawn blood to do a blood workup. This is routine practice in ED for diagnosing when someone presents as ill, rather than an accident.

One of the most basic blood tests done is a Compete Blood Count (CBC). This includes your platelet count. It also shows if you are fighting an infection of any type. It won’t tell you WHAT is wrong, but will tell you if SOMETHING is wrong.

When you suffer Sepsis, your Platelet count increases (150-400 is normal). So you would expect to see a CBC Platelet count of over 300. With Derek you would at least expect to see him IN range if he had Sepsis. In Oct 2012, when the Infectious Disease Registrar was contacted, he tried to convince people Derek had Sepsis. His platelet count of 125 would indicate otherwise, and at the time, Derek was suffering CAPS.  Inflammatory markers were up, but platelet count was down.

When looking at HVDHB’s notes What we found instead of the blood results was the next note on the HVDHB file for that day stating “Blood and Pro not sent to the lab. We can only presume that by this time it was decided to transfer him to CCDHB and as they were passing his care to another DHB they didn’t need the Bloods processed, and so destroyed them.

Derek was put in a Patient Transfer Ambulance and taken to CCDHB (different District Health Board, so different process etc).

After reading that the bloods were not done at HVDHB we had a look at the CCDHB admission records. The only mention of Bloods in the CCDHB’s notes wasFollow up Hutt Bloods. They never took any bloods of their own, ever.

They only took bloods for cultures. Because bloods for cultures are put in a special bottle, they cannot be used for a general CBC.  There is also no indication in his file, that they ever followed up with Hutt because if they had, they would have seen that Hutt destroyed their bloods.

CCDHB simply did cultures. And what, you ask, did the cultures show? NOTHING.

Based on no evidence, and having failed to do a basic blood panel, there was an ASSUMPTION of Sepsis. Not a PRESUMPTION. To be a presumption, you must base your belief on the weight of the evidence available. As there was no evidence of sepsis, and no bloods taken, they erroneously presumed Sepsis.

When he was re-admitted a week later because he was still very ill, they assumed again, based on no evidence, and no positive cultures, that it was still sepsis, and threw higher dose antibiotics at him.

The better presumption based on weight of evidence being Cessation of Warfarin, NO Bridging, an Invasive Procedure, followed by starting of warfarin again with no cover of clexane, would be a Mild CAPS event.

We have now had 2 separate, independent Dr’s suggest the same thing. To prove, or disprove either theory, all they needed to do was a CBC. However, this was something that was never done. Therefore a diagnosis must be based on weight of evidence, which leads to CAPS.

Not only did CCDHB try to kill Derek during Surgery, but also during his Biopsy. This is not acceptable practice and clearly fails the Oath of taking care that they suffer no hurt or damage”

It seems that the more we look into Derek’s medical care, the worse we realise his care has been.

Our goal at present is to  make the medical profession be held accountable for their lack of care and concern.  Ignorance is no excuse for almost killing Derek, not once, but TWICE.