Monday, 26 January 2009
The days of treating doctors with undue reverence are over. The internet is a huge storehouse of medical advice with virtually every known disease sprouting a support group. Learning how to use that information is one thing but the next step is learning how to discuss this with your doctor.
A patient arrives to a consultation somewhat at a disadvantage in seeking advice on an unwanted condition. But the doctor is also at a disadvantage in as much as they won't have a clue about what is wrong with you until you open your mouth. So, to help make the consultation as informative, fruitful and beneficial as possible, here are some tips on how to treat your doctor.
List your symptoms
It is amazing how easy it is to forget things. Even after going over in your mind many times everything that you need to say to the doctor, chances are you will forget something. The best thing is to write it all down. Start your list as soon as possible and update it as you remember things or if new symptoms start to emerge. And don't forget to take the list with you!
Take a notebook
A consultation is a two-way process. The doctor will be making notes about your case so it is perfectly reasonable that you should be making notes about what you are being told. Your doctor should actually be pleased about this as, if you are required to do certain things, at least you won't forget. If this is a follow-up consultation you will also have notes from all the previous visits. If your condition requires serious medical attention then you need to do as much as you can to help yourself.
Do not be afraid to ask
Most people have a slight feeling of inferiority when dealing with doctors, or indeed any professional. But medicine is one profession that is supposed to be helping you. There is no need to be afraid or feel that you are wasting the doctor's time. Sometimes it can feel as if time is short, the queue outside long and the doctor rushes into a quick decision. If you have brought your pen and paper just ask those question you need answering – they will not be answered by the receptionist outside. I you are offered some new tests that's great, if you are prescribed new medications understand why and how they are different to your current ones. Certainly treat your doctor with respect, but not with reverence.
Learn the medical jargon
Being a doctor is, like many other professions, full of jargon. From the outside this appears to be a way for outsiders not to understand what is being said. But medicine is a precise science and conditions need to be described as accurately as possible. Understanding medical jargon is really no different to using a dictionary. If you don't understand a word just look it up online. If you don't understand what the doctor is talking about just ask her. There is no harm in asking “What does that mean?” rather than nodding in ignorance.
Using the internet
If this is your first consultation chances are you don't have much of an idea what the likely diagnosis will be. However, if the symptoms you manifest are potentially due to different causes, or if your condition has a multitude of potential cures, then no doubt you will start to research on the internet. There are help groups and forums on every imaginable condition – head for those as they will be a source of information and support. Forums are also a good way to screen out quack cures and expensive promises that can also be found on the net. As above, either write down anything interesting or print copies of useful information.
The dangers of self-diagnosis
After your internet research you will be armed with a wealth of information. This is particularly important if the precise nature of your condition is still unclear or if there are still different courses of treatment available. However, the one danger of self-diagnosing over the internet is that you can end up thinking you have all kinds of rare diseases just because your symptoms seem to match up. Medical sites list conditions in terms of their symptoms so it is very easy to end up with a long list of conditions. The skill of your doctor is in not only knowing which symptoms correspond to which conditions but also in knowing which are the most important and which ones are missing. It is vitally important to know and understand not only which symptoms you have but also which ones you don't. I have yet to find a medical site that also has this negative test. For example, you may fear you have some incurable disease because you have 5 of the listed 7 symptoms on the internet. But one of those missing symptoms is possibly the key indicator for that disease, the other 5 may be consequences of that key symptom.
Discussing your self-diagnosis with your doctor
Most doctors are aware that patients do their research online and most are happy to discuss this. You may still find a few who are defensive about this self-diagnosing and see it as an encroachment on their profession. You may not know what reaction you will get so the technique I have found most useful is to approach the subject in the same way as you would ask any question. Do not open a file of printouts and start claiming that in your opinion the original diagnosis is wrong and that you have discovered your real condition! This is going to irritate any consultant. Instead, bearing in mind the previous point made above, show a list of what you have discovered and ask the doctor's opinion as to which are likely and which are unlikely. The doctor can now show you why a professional is better than a hundred websites.
Resolving an Argument
Sometimes you may reach a point in your consultation when you and your doctor do not see eye to eye. Keep calm; this happens. Try firstly to think about what is really at stake here. Are you being refused a new test on an uncertain diagnosis? Are you being refused the latest treatment because it is too expensive? Do you feel as if your concerns are being dismissed? Arguments don't usually happen on a first consultation but rather after a period during which either the medicines are not working or the side-effects are getting worse, or perhaps even that a solid diagnosis has not been reached. These situations can be difficult but this is my suggestion.
A medical diagnosis is reached based on the accumulation of facts. These facts include your own testimony as well as any tests that have been done. If you feel you have been misdiagnosed then ask the consultants which further tests are needed to resolve the argument. This will often be enough to delay a decision awaiting further evidence. You are probably getting emotional by now but don't get angry and write everything down. Some tests are expensive and some decisions are based on the probability that a new test will yield meaningful new information. If the consultant still refuses then ask why. Which aspect of your current condition makes a new test pointless? Write it down. Is the doctor making sense here? Is the logic of the argument solid? I've been in this situation and forced the doctor to spell out exactly why he just wanted to take the easy road by prescribing different medicines rather than looking closely at the symptoms. In the end I went to see someone else. If the discussion has reached this point then you may well have to see a new specialist. This is no bad thing in itself as a fresh mind may take a different course of action. Just don't get angry – it won't change the outcome.
Suspected or Confirmed?
After a consultation with a specialist at a hospital you will usually receive a typed report outlining the diagnosis, further tests and treatment. Read this very carefully. It will be in medical jargon but you've already learnt that so understanding it should not be a problem. Any new words, go and look them up. However, there are two fairly ordinary looking words you also need to watch out for; suspected and confirmed. If you have had a disagreement about your diagnosis these two words will actually tell you how certain the doctor really is in that diagnosis. If your condition is suspected rather than confirmed then you may have been right in your doubts. This shows that there is still work to be done and that even the doctor is not wholly convinced and just acting on probabilities. It is important not to waste your time trying to convince new doctors that your confirmed condition is wrong. It is a wholly different matter seeking further advice for a condition that is still suspected but not as yet confirmed.
Going to the top
If your condition seems hard to diagnose or the treatment is not working consider doing a bit of research on who are the real specialists in your field. Pretty easy these days on the net to look at who are the top people in their field. See what books they've written and which papers published. You might think these people have better things to do than talk to you, but you'd be dead wrong! Most respected specialists work in hospitals, most often research hospitals, and are only too keen to discover difficult cases that have challenged their colleagues. You may even be lucky and find some research projects for your condition. Just do a search and find somebody who you like and have confidence in, at least from reading their profile and interests. Then write a concise but detailed description of the history of your condition and the current state. You should already have all of this in your notebook and in any medical reports you have been sent. Your email will be read by a secretary and if it seems interesting will be passed to the specialist. Easy!
Thursday, 11 September 2008
Now, most of us will be treated inside our state health system – with extra insurance cover if you're lucky. That state health care depends on a huge bureaucracy supported by taxes and delivered by individuals with a range of abilities and flaws. In the past year I have seen 10 different consultants – including cardiologists, neurologists, epileptologists and neurosurgeons – and as of writing am nowhere near discovering a concrete, definite, unambiguous, iron-clad diagnosis. Not all the doctors were 'bad' as such, but then again, not all of them were all that good. Some seemed to care more than others, some actually took the time to listen and discuss options, some just seemed to enjoy a snap decision as if it was a sign of virtuosity. Many specialists will work for both a state and a private hospital, so that handing over money is still no guarantee of a premium service. However, if you find your specialist unsympathetic; or if the side-effects of your medication are serious; or if a particular line of enquiry is being blocked to you; or if, for whatever reason you feel you really need another opinion, then having that extra money puts power back into your hands.
I know from my own experience that symptoms do not always yield a clear-cut diagnosis. Many neurocardiological conditions can be subtle and complex. The starting points are always those that are statistically the most likely. If you happen to have a fairly rare condition it could well take years to diagnose it. But during that time you could also end up taking medications you don't really need. A misdiagnosis can have very serious consequences. You may be subjected to damaging side-effects that you didn't need to experience; you may end up with social or legal problems due to a condition you don't really have; you may even have restrictions placed on you at work with potential loss of status or income. In short, a misdiagnosis can ruin your life!
This is where a 2nd, or 3rd, or even 4th opinion is worth the money spent... assuming you have it. I understand that any disorder can be doubly crippling in terms of losing both one's quality of life and one's earning potential. I read on many forums about people trying, often desperately, to get back to work. Rarely is it possible to return to one's profession full-time. Often people start looking far and wide, even mundane part-time jobs can feel worthwhile, just to get some human contact and some extra cash. You're not alone – this is a problem that afflicts every country in the world. At a conservative estimate the annual global productivity lost to mental health problems comes in at over $4 trillion! Worse than this is the added fact that the majority of sufferers are not even classified as unemployed – as that assumes the possibility of future employment – but rather as “unable to work”. This seems to draw a line under our careers, a life left to dwindle away under the care and control of others. The internet is a liberating experience in terms social contacts with people across the globe who suffer just like you. Now it is also time to harness that community to bring financial benefits to us all: financial benefits that we need to feel empowered.
I will discuss how you can all create an income stream from the internet. As you are reading this I assume you have internet access. That is all that you need. You do not need to pay a penny to set up your own money-making website. You just need to know how. As we build up this website we will explain everything you need, without even charging anything. All it needs is for the mental health community to realize that it has financial strength and power. The financial strength of a community as a whole will help you build your own financial security and to regain some control over your medical condition.
You will be able to get that 4th opinion if you need it. You will be able to get extra assistance with those side-effects. You will be able to get any psychological support you need rather than feeling isolated. You will be able to insist that a full set of tests be done – or even redone – just to prove beyond a shadow of a doubt that your treatment is optimal.
I am not here to promote the private sector, but if you are becoming frustrated with your current health care it is good to have that option. You may well even be happy with your treatment but wish to investigate alternative therapies to ease some of the side-effects. But taking a global view, there are countries where the national health system is fairly basic; where the costs of going private are very low compared to the first world but are still often prohibitive for a person earning local wages in a developing country. For example, a mere $100 will not get you very much in the UK or USA but is more than enough to get an appointment with a specialist in Thailand, including travel and any medications. I will talk elsewhere about medical tourism, the point here is that a financial shot in the arm is one less thing to worry about. And I also don't know of any charities that are giving out money to individuals. Today, as I write this, I saw on UK TV a blind man who has been refused treatment on the NHS reaching out to fundraise for a private operation. So this option of self-financing is by no means rare and should really be considered if you are having doubts about the quality of your health care. This is where our project comes in – to help individuals help themselves.
MWAH! blog is now closed. Any stray links you may find, ignore them or let me know in a comment and I'll remove them.
The aims of MWAH! are two-fold; one personal, one social. On a personal level we need to make ourselves more noticeable, more conspicuous, and in so doing create a stronger community. Communities are held together by social and cultural bonds, but also by economic ties. Creating a community marketplace to express our potential and regain our financial power aims to improve our quality of life. This added confidence and financial freedom will help us fight the stigmas, misunderstandings and injustices that are still prevalent in every country regarding mental health issues. Our vision is global, our tool is the internet. We cannot wait around for donations, grants or charities to improve our lives. Whether you personally have a disorder or you are a carer, you have something to offer. Everyone has a story and it is shared stories that create communities. We can help you find your internet voice and with it the confidence to be heard loud and clear.
Our initial focus is on epilepsy, but we really do not want to just limit ourselves to this. Epilepsy is a complicated disorder with a whole range of causes and effects. Indeed, it has been estimated that 20% of diagnosed epileptics actually don't have epilepsy! One in five people reading this and taking anti-epilepsy drugs are on the wrong medication! This is really serious; given the often debilitating side-effects of the medications, the legal restrictions and social stigmas, do you really want to be misdiagnosed? There are many other reasons for having what at first may appear to be epilepsy; these may be neurocardiological or even psychological. This is why I do not want to limit ourselves to just epilepsy but to include the whole range of mental health issues. We do not want somebody to suddenly feel excluded just because their condition has a new label. We are more interested in encouraging people to push for a correct diagnosis and appropriate treatment.
One other issue is also coming into focus in my own mind – the pressures of what our mediocre society considers normal. Now this part gets a bit personal, but frankly, if you're not here for personal reasons then what are you doing here? As a child I was precociously intelligent, which may not sound like much of a disease but also has certain social problems attached to it. Edgar Allan Poe put it like this,“From childhood's hour I have not been As others were; I have not seen As others saw; I could not bring My passions from a common spring. [...] And all I loved, I loved alone.” Later, in my twenties, I went through a number of years of deep depression, yet came out the other side not by “pulling myself together” but by going deeper into the abyss and coming out the other side through a mixture of study and meditation, using the wisdom preserved in books when there was little around me. Now I have epilepsy and am supposed to crawl under a rock and hide away because, yet again, am not quite as normal as your average chimp. Well, there's a pattern here. A pattern I don't particularly like but one I can perceive; one that perhaps I can do something about. What is normal, average, mediocre is just the tyranny of those intolerant of anything outside their own experience; things that are sometimes way beyond their experiences. Most of life's most precious experiences never make it into a magazine or television – to do so would undermine the legitimacy of the garbage that does make it into the media. I will no doubt come back to this theme but for now just to say that a community of the mind has to be a community of diversity... and sometimes of extremes.
Some of the info above may be old but the sentiments are still alive. However, the blog structures have changed and will post more on that soon.