As far back as 2002 an article was written for the British Medical Journal encouraging patients to become “Expert Patients”.
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 2004; 328 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.”
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.