Am I a nightmare patient?

By | 12 July, 2011

There have been a couple of interesting articles recently about how patients and Drs interact. There was a particularly amusing/irritating dispute on the CNN website where Drs had recorded videos complaining about “patients who know too much”. Patient advocates, including’s Amy Tenderich quickly gave those Drs short shrift, objecting to their defensive stance and highlighting the times that doing their own research and not following the Dr’s advice had been the right thing to do. There seems to be a fine line between being an informed patient and being a complete hypochondriac.

Then there’s the piece on the BBC news website where a Dr explains that patients should not be afraid to question their GP if they’re not clear what they’re talking about. Sounds sensible to me.

I’m a pretty pro-active patient. I like to be in control of my own health. On occasion I have noticed that some Drs find me a little too forthright and perhaps even intimidating. I like to get the most out of my Dr, which means I go prepared whenever I see them. Which means that I could be classed as a nightmare patient, according to the CNN criteria!

Dear Dr, I’m sorry if you think I’m a bit of a nightmare. But keeping all my limbs in tact and my kidneys funtioning is quite important to me. I like to get the most out of you, which means I like to know what I’m talking about before I come to see you, so I can ask you the right questions. For example:

• I’m always prepared, with all my facts, symptoms and issues collated. My agenda is clear and I know what I want from you.

• I will have been on the internet beforehand to research potential solutions to my issue – I’ll come to you with an open mind and ask your view, but I will also push you on potential solutions I’ve identified that you’ve not mentioned. That’s how I ended up using CGM. I do try not to self-diagnose myself with some form of lesser spotted lurgy when in reality the most likely solution is something far less exciting and easy to treat. So far, my research with Dr Google has never been wrong.

• When it comes to diabetes, I may choose not to share my detailed blood test results with you because I’m not very comfortable doing that, and will only do so if I have a specific issue I think I’d benefit from your input on. I know you don’t like this and it probably isn’t the most helpful approach, but I think I’ve been scarred from too many nightmare conversations over the years so that’s how I choose to work now. Sorry about that.

• If it’s complicated, I’ll provide a one page written summary of what’s been going on – because my medical records are generally incomprehensible and it takes ages for you to wade through them and routinely fail to pick out the significant events.

• I like to know what good care looks like before I go to the appointment. I mightn’t know exactly what’s wrong with me, but I have a rough idea, so I can look up the recommendations for how that type of issue is treated. For example, for diabetes I might look at the NICE recommendations and what Diabetes UK has to say about what care I should expect.  That means I know what questions to ask and roughly what tests I’m expecting you to run. I mightn’t let on that I have this info, I prefer to let you think it was all your idea and just prompt you with vaguely intelligent questions about why you’re not doing x and y. From experience, half of the time you come up with a great explanation as to why x isn’t relevant, the other half of the time you admit it might be a good idea to look at y.

• If I think a particular treatment might be right for me eg a pump, I’ll have read the criteria I need to meet to get a pump before I go to the appointment – that way, I know whether I’m being fobbed off, or whether a pump really isn’t the answer for me.

• If I don’t know what you’re talking about, I’ll ask you to explain.

• If I think you’ve got completely the wrong end of the stick, or you’re saying stuff that I really don’t think is right, I will keep pushing you to justify your advice until I’ve established that it’s either credible or you’re talking rubbish. If it’s the latter, I will seek advice elsewhere.

• I’ll always listen to what you have to say, but I mightn’t always follow your advice if I don’t believe it’s right for me. Don’t take it personally, I just like to apply some of my own brainpower and judgement to the situation rather than blindly doing as I’m told. I do this with everyone, not just Drs.

So, yes, I fear I may be a bit of a nightmare patient, because I have high expectations and am well informed. But don’t be scared of me, it’s by being well informed and demanding that I get the best results – and surely that’s what we both want?


8 thoughts on “Am I a nightmare patient?

  1. Mike

    @alison Great reply! I find it disturbing as I believe that it is a good thing for doctors both with patients more informed but also HCP’s should be more informed.

    The various barriers between HCP’s and patients are slowly being broken down as you know but as quick as one would like.


  2. Tim

    I take that view that it’s my diabetes and therefore I’m chairman of Tim’s Body PLC (should that actually be a PLC – public limited company – or a limited company?) Anyway I take full responsibility for said diabetes and I take advice from a variety of advisers – doctors, nurses, dieticians and so – and combine it with my own information, reading and data and then I make a decision on my care dependent on that.

    As a result I don’t defer responsibility for my own health and I take a strong and active interest in what treatment, etc., that I use.

  3. Alison Post author

    @TIm I couldn’t agree more. I suspect this approach makes you a nightmare patient too, welcome to the club, glad I’m not alone!

  4. Scott S

    Just remember, these doctors ultimately work for the patient (and maybe the insurance company or state healthcare provider who ultimately pay for their services — when that’s a state healthcare provider, that also means you as taxpayers) — my endo is aware that I “fired” my last endo and he knows that some rules are mine. There’s no good reason to stay with a doctor or educator who makes you feel like $#!t.

  5. lizz

    I have various nightmare moments engraved on my memory. The time a Dr told me my doses were ‘homeopathic’ and to increase them for example. I am also assertive now, as I was so un-assertive and unquestioning when I was young. I can’t imagine why now.


Leave a Reply

Your email address will not be published. Required fields are marked *