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.

Advertisements

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.