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

Worst-Case Scenario

What if I had an accident, not bad enough to require an ambulance, but that required me to go to Hospital?

Since Derek became ill I have had a “worst-case scenario” played over and over in my head.

For two years, I have imagined what would happen if I became incapacitated. For some reason, I couldn’t drive. What sort of impact would that have on the fact that I was the only driver in the house.

I have played it over in my mind many times, thinking “what would I do”, “how would I deal with the problems”. “What if I had to get Derek or Bevan to a medical appointment, or I had to do grocery shopping”.  “What are all the problems I would have to deal with?”

Who could I call.

My worst-case scenario? To break my right leg at home.

 Actual Event

Stepping down off the back lawn onto the steps. I felt my ankle roll to the outside. My mind immediately went to the thought of, “NO, This can’t happen”. So I tried to correct. But to do that I had to put my left foot down on the step. Great, I will be fine.

Imagine my shock when I realised too late that the step I was aiming for wasn’t there. I didn’t stop with both feet on the same level.

I stopped when I was layed out flat on the ground, having landed very heavily on my left knee. It hurt, but not as much as my right foot. That was screaming.

But over riding it all was the thought, “Crap, Derek is going to get a headache, need to go to bed, and I think I should probably go to A&E”.

I lay there for a few minutes, running everything through my mind, tears running down my face. I wasn’t sure if I was crying because of the pain, or because my worst-case scenario might be coming true.

While there, I worked out that I have hurt my left knee. I knew that because I could feel the blood, and I could feel the hole in my jeans. I still hadn’t risked moving my right foot. It was still yellowing for attention, and I was refusing to give it.

The reaslisation that I was the only one with a Drivers Licence, or that could Drive dawned on everyone. Offers of “I’ll call and ambulance”, “Do you want me to call an ambulance?” and other phrases including the word ambulance were used.

No, this was not bad enough for an ambulance. I felt sure I could get to my bed, rest it, and then see what was happening.

All this time I was pumping adrenaline like crazy.

This is a good example of how fast Derek reacts to an emergency. He walked over to me at his normal speed, and just stood there asking if I was ok. Not able to actually react in a normal way. I could tell that, because all he did apart from asking me if I was ok, was to call Bevan, who was already running to my aid from inside the house.

I finally managed to sit up and reassess the situation. My foot hurt, my mind jumped to “crap, broken it”, then moved slightly more slowly to “nah, it’s just going to be a bad sprain”. Ice, rest, and then a trip to A&E to get it strapped, and find some crutches for a couple of days.

I worked out how to stand up, with assistance. I then tried weight bearing. Great, I can stand on my foot.

1 step, 2 steps, that was it. No more. I was NOT able to stand on my own two feet.

Somehow, in that short time, Bevan had come up, assessed the situation, realised I needed help, and went and found my mother-in-law’s walking stick. Well done that son. I hadn’t even noticed he had left before he was back.

Bevan and our Boarder helped me inside (with me sliding down the stairs from the top of our back yard) to my bed, I was given ice.

As I lay there I realised that, even though I knew my eldest son who lived at the other end of town needed to go to bed at a reasonable hour, and that I was about to spend 5-6 hours in A&E, I sucked in my pride, accepted it as a fait accompli, I phoned him and told him the situation. He said he would turn off his dinner (which was almost cooked) and come get me.

No, I wasn’t having that, I wasn’t going to inconvenience him that much for a sprained ankle.

I took pain killers and lay there for an hour waiting for him. At first it was fine, I didn’t mind waiting as I knew it was just a sprain. I had time to go through each plan of how to get to work the next day as spraining my ankle wold mean not being able to drive for 24-48 hours.   I would need crutches but that was it.

By the time my eldest arrived to take me to hospital I was desperate. I couldn’t walk, I was in a lot of pain, even with pain meds,  and shock was setting in.

Derek on the other hand, was laying there, he looked worse than flat but not as bad as he has been some times. He took panadol, and just deal with the headache as best he could.

I worked my way to the car and got in the passenger seat. My instructions to my son was, on arrival at hospital, get me a wheelchair. I was NOT going to try and walk.

We checked in, we could see it would be a 4 hour wait at least. What was a girl to do. Post on facebook of course, where my daughter read about it.

At some point my daughter and her boyfriend (a paramedic in training) turned up. This was a great opportunity to send Derek home. He had taken extra meds, but still looked worse than me.

Finally I am taken out the back and seen, very quickly, by a Dr. Quick exam, “yes, think we might get an x-ray”.

1 found of x-rays and a 5 minute wait later and I get the good news. “Yes, you have sprained the outside of your right foot. But I need another x-ray of it. A slightly different one. That spot you say is the extremely painful, is where you broke it! But there may be another break as well”

Boom!

There it was!

Worst-case scenario now a Reality!

I am cast. Both figuratively and literally.

Oh, and I have to get Bevan to a Medical Appointment tomorrow a long way from home!

Boom! There it is again.

For the next two weeks I will probably be in a plaster case, at which time I have to see an Orthopaedics Specialist to see what they want to do. Even if taken out of the cast and put in a moon boot, I will not be able to drive for another couple of weeks.

Up to 4 weeks of not having a driver in the house.

Yup. My worst scenario is now playing out in real life.