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

The 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 was “Follow 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.

Waiting for a Life Line

This blog was going to be about a thing called DHEA. That will come later.

This is more important because I am really annoyed, and need to get it out there. There are lots of others, not only in New Zealand, but all over the world, that suffer this problem.

It’s when you fall through the cracks.

We had it described to us that Derek is one of those people.

It’s like an apple sorting system. The tree grows an apple, that apple is picked. The really bad apples get taken out and put in the pigswill. The rest are then put through different tests/checks. As the apples go through the system, the low grade ones are gradually discarded or put aside for fruiting, juicing, discarding, until all you have left is export grade apples.

Every now and again an export grade apple gets thrown out with the bad ones. It falls through the sorting system and ends up in the pigswill instead of on the shop shelf.

Liken Derek to that apple. He goes through the first check point, and falls off the belt with the pigswill apples, but hey, they get re-checked just in case, so that’s ok. Someone will discover he is actually a good apple, and put him back on the right track.

NO!

He has AGAIN fallen through the system. And I am getting quite mad about it. I should not have to spend my life advocating for him, and fighting the Medical Fraternity to get things done. It’s not that they don’t want to do things, they just keep stuffing up.

2.5 years ago, he experienced a Medical Misadventure and suffered multiple organ failure. They didn’t notice (even though it was pointed out to them) that he suffered a brain injury at the time.

After 23 days in hospital (the first 5 fighting for his life) he was discharged from Wellington Hospital (CCDHB) and handed back to Hutt Valley Hospital (HVDHB). He then spent the next 12 weeks at home.

He was referred to a Rheumatologist for his Antiphospholipid Syndrome (APS), and consequent Catastrophic APS. He was referred to Endocrinology for his now trashed adrenal glands.

He SHOULD have also been referred to Occupational/Physiotherapy, for rehabilitation given that he suffered lung damage, transient heart damage and was laid up for 15 weeks trying to get some form of health back.

He wasn’t. He was examined by the Rheumy who said “keep taking warfarin, you look great, see you in a year”. He was seen by his Endo who said “decrease your HC to what the book says, oh, maybe you could also take fludro as well, see you in a year”.

We went back to both of these a year later. Same thing.

In the mean time, I am becoming more and more concerned about other things that are happening to Derek. Each visit to a medical “professional” I mention that he has difficulty swallowing. Each visit we are told, yes, we need to look at that. We will talk to/refer you to XYZ…

After changing General Practitioners in August 2014, we finally got a referral. On 18 Dec 2014 Derek went for a gastroscopy (read about that elsewhere, it’s a story all by itself). At the end of that visit we discussed with the Endoscopy Registrar the fact that the problem is at the top of his throat, between his mouth and his shoulder line. The Gastroscopy looks lower down.

The Registrar agreed that the Gastroscopy was not going to find the issue, and he needed to be referred to another department. Hang on. Haven’t I heard this somewhere before, MULTIPLE times? The question we were then asked, “did we want the her to do the referral, or our GP?”.

We definitely wanted the Registrar to do it, so we knew it would go to the right department in a good timeframe.

On 2^nd Februaray we received a letter about an X-ray appointment. Yay, finally somebody that actually did as they promised, and sent the referral. Now they could do the correct X-ray to see why he couldn’t swallow properly.

WRONG!!!!!!!!!!!!!!!!

This was a repeat X-ray 6 months post his last bout of Pneumonia. When we checked in for that x-ray, I asked about the other one. NO, not in the system, never referred, not happening. Best course of action is to go back to the Endoscopy Dept and ask them what happened.

While sitting in the waiting room for Derek to have his X-ray he received a txt message which I read. Hello. It’s a reminder for an appointment for Monday at Rheumatology. That’s great, but what is the apt for, and why are we receiving a reminder. We have never received a letter telling us about the apt. Oh, did I mention that today is Friday?

After the Xray, we trudge up to Level 6, and ask about the reminder, but no original letter telling us about the apt. “Oh, we send them out about a week out from the apt in case it has to be changed”. That’s fine but again, Today is FRIDAY ,and the appointment is for MONDAY. The snail mail has been delivered today, and there is no letter telling us of the apt.

After this discussion, we trudge down to the ground floor again, and along the corridor to Endoscopy. We are told that the notes say that our GP is to do the referral. “Actually, No. We clearly agreed that the Registrar would do it, so we knew it would happen”. The Receptionist asks us to wait while she goes out the back and tries to sort it.

The Manager of the Dept comes out, she has the referral in her hand, which has been sent to the right dept? We told her that it hadn’t been sent anywhere. There was no record of it on the system.

She asks us to wait while she goes to X-ray herself to sort it. She then comes back and promises she will sort it. We try to explain our frustration at the inability of the system to get it right with Derek EVER.

We leave the hospital with a promise from the Manger of that department, that she will get back to us today regarding the referral.

We have now had a phone call back to say that it has been put on to another department, she is waiting for it to be “triaged” which means some obscure little officious clerk, at some desk somewhere, will put it in the system as “non urgent”, which means they have 4 months to act on it.

While I was sitting in the Endoscopy department waiting for the Manager, I was listening to the booking clerk making a booking. There is no denying that when they get a referral there is a timeframe for which they must make a booking. They DELIBERATELY book you on the last possible date to fit the timeframe. I you are classed as semi urgent and must be seen in 3-4 weeks, they put you on the last day of week 4, even if there are spaces available on the first day of week 3! I actually heard her doing this.

We are due to have another phone call from HVDHB to confirm his booking on Monday. We have been promised (and I have the phone call recorded), that once the decision is made as to urgency, the Manager of Endoscopy will get back to the relevant department and tell them that they need to hurry up and make it urgent.

I then jokingly asked if they had a system in place to make sure that the booking didn’t clash with any other booking Derek might have (he gets lots). I was gobsmacked (absolutely shocked) to find that NO, there is no system in place for that! They have to manually check!   And we all know how many of the booking clerks would waste their time doing that!

So where does that leave us? In the hurry up and wait chair again.

We currently have a Formal Complaint being investigated by the Health and Disability Commissioner about his treatment at CCDHB. Once we have seen the report on that, I will be putting in a complaint about the HVDHB and their treatment of Derek.

Sometimes all the stars align and you sail through life with ease. Other times, all the mud pits align, and you end up sitting in pigswill for years until someone throws you a lifeline.

We are still waiting for our lifeline!