how do you rehearse what you are going to say to doc...

[poppy]

I have one final doctor's appointment that I'm going to make and I've decided if they don't listen to me then that's it... I'm done with doctors it just hurts my emotional health, wastes my money and does nothing to help my eyes.

So, with these high stakes, how do others prepare for their doctor's appointment, especially when they are not assertive and don't have anyone they are comfortable to bring along with them. I would like to write down exactly what I want to say and read it out or hand it to them, but I figure it wouldn't go down well.

I generally am so meek and quiet that the whole appointment gets wasted with the usual patronising and dismissive rubbish, the one time I tried to be assertive did NOT go well, I went too far and the doctor took great offense and ended up verbally abusing me. How do we find that middle ground, given that it's proven we only get about 20 seconds to speak before the doctor interrupts us?

I always have such grand plans for what I'm going to say to the doc, but it usually goes out the window and I just say a fraction of it... or the doc just ignores what I say and I don't follow up and demand a response. I was thinking about telling the doc that I'm not able to describe my situation without saying things that may be offensive to his profession, and hoping he doesn't take my truthful description of my situation personally? I seriously don't feel able to describe my situation in a way that is completely polite and tactful. Help is appreciated.

[Joseph]

I write things down and ask the doctor each question one by one. After the doctor gives you his/her response to your question I like to ask again in a nice way by saying " So you feel that this is what's causing this situation " or " So do you think that this is the problem" I just feel that it makes them think an extra second or two about their diagnosis. Write a big long list off all of your questions you have and then break them down into quik and to the point questions. This has helped me alot because I remember my first couple of doctors appointments were I asked ten different questions that were all over the place and to long.

[Rebecca Petris]

I think writing questions down is a great idea because it slows things down and puts the time control in your hands. I totally know what you mean though and I can think of times in the (now distant, thankfully) past when even bringing that sheet of paper with me I got derailed and flustered during the appointment.

Other thoughts:
1) Send a fax or letter BEFORE the appointment, and bring a copy with you. In the letter put the (brief and diplomatically phrased) questions.
2) Perhaps also state frankly that you have a history of difficulty communicating during doctor appointments and would be ever so grateful for their very kind (hint) assistance making this appointment different for you.
3) FLATTER THE DOCTOR INTO HIS/HER BEST BEHAVIOR. Look up their bio, any publications they've co-authored.

[littlemermaid]

1) Type up the entire story very concisely. Take refuge in the facts of the history, then it's up to them how they assess their treatment. Don't forget any symptoms, especially vision and pain, how it affects life/work, include all other disorders, like blood pressure, derm, they are relevant:
date, doc, hospital
symptoms, prescription, doc advice

Anything else that's happened:
date, circumstance
headache - where (behind eyes, jaw etc), type of pain (stab, dull), score eg started 3/10 but was 9/10 by 8pm (this is how docs measure pain, out of 10)

2) Type up list of questions. This is the agenda of your consultation - your questions. It's not confrontational but points up failings and misunderstandings beautifully. This is a way of asking the difficult stuff you need to know, like a little child would ask in all innocence: what do you think is wrong with my eyes? what is this pain? is doctor x here today? do you see many cases like this? how do you normally treat people with what I've got? should I be coming back every 3m for vision checks? what are the side effects of the steroids? why do you think the steroid had no effect? shall I phone you if it gets worse? what's the next stage of treatment? why didn't they fit punctal plugs before? should I go to specialists in Sydney about this because it's getting worse? is there anything else these symptoms could be, esp with spreading pain? do I need to ask a neurologist? or get neuro-ophthalmology checks? Innocent sounding, yet to the point. As Joseph says, your questions make them think about their diagnosis, reminds them you're a human being.

Some keywords to use, especially with underlings to get the consultant winkled out (if you need to press these buttons): unbearable, misdiagnosis, recalcitrant, neglected, overlooked, unsuccessfully managed, blindness, agony, it's much worse, desperate + any vision changes. The underlings even remind me 'if you want to see x, say so clearly and be prepared to wait'. Sometimes it doesn't feel like that's an option when you've got a registrar trying to prove he can manage, but it definitely is.

There are other more female types of assertive. Knowledge is power, and we have knowledge.

I've got major white-coat phobia and find it difficult to even speak. I'm terrified they will turn us away again. Or they won't pass us to a doctor who knows what it is and has good ideas what to do. And that we won't get good follow-up. Every single time. It might help to consider how you respond to 'authority' and remember this isn't it. This is in some ways more like consulting a skilled trade. The difference in approach, experience and skill between them is amazing. There's always a plan B.

I've got round this by just handing over the typed-up 1) history + 2) question list. They like it. It saves the underlings a huge amount of time taking the history. The consultant gets an accurate, quick, detailed, concise case summary (which is what they really want) from you the patient, the most important person in the room, without missing things in the notes. I don't forget to ask stuff. We all get a better quality consultation. It works.

The UK NHS suggests 6 questions but I ignore that since I've paid National Insurance and taxes.

Brush-off, arrogance, high-handedness, putting down other docs, marching out bored to do something more important - was entirely due to the fact that the consultant didn't know what LM had or what to do about it, and was, medically speaking, as I know now, doing a rubbish job and should've referred on to someone who did.

Kindness, time, listening, being interested, admitting s/he didn't know entirely what the problem was, suggesting possible colleagues or other avenues, thinking about possible new treatments we'd heard of, being constantly supportive even without successful treatment - was entirely due to the fact that the doctor was being excellent and put the patient first.

However, as Rebecca, it's also about playing the hand you've been dealt and getting the best out of who you've got. Her advice about sending something in advance has worked if you suspect they're not familiar with the treatment you want to talk about. I've also handed over a research article on the spot 'what do you think of this?'

Hopefully there's a few more options. Don't forget to talk to Patient Liaison for advice. I think you need their support, however it goes. I've done this, Poppy, no shame. They love helping, that's why they do the job. If you find someone kick-ass they can eg help you source the drugs and find options in the public health service.((hug))

[Guest]

I find it helpful to bring a list of questions also. I usually let the doctor do whatever he has planned exam-wise, and then at the end of the appointment, ask my questions.

Sometimes my questions are the kind where I'm asking to try something and briefly explaining why (I may bring a journal article if it's not a mainstream treatment, mainstream being what is listed in treatment guidelines such as the DEWS report...this isn't the norm for me, but just saying). Also, I try to anticipate any concerns that they may have with a given treatment and/or ask them what their concerns are if they seem hesitant.

Obviously all this depends on having a doctor who is caring and honestly doing their best to help. I also think it's important not to make them feel stupid for not knowing an answer to any questions we may have... again, assuming they are honestly trying their best to help... no-one can possibly know everything about everything, right? Most aren't experts in dry eye, and they likely don't see patients with severe symptoms very often. I think the goal is for both doctor and patient to approach this as a team.

If you have a doc who is condescending, patronizing and seems uncaring, then it's time to move on and find a better one since odds are no matter what you say or how you say it, it's not going to get you anywhere.

[PotatoCakes]

In addition to the above, do you have a friend that can go with you to the doctor's appt? Sometimes it helps to have a 'spokesperson' when you don't feel strong enough or perhaps when you feel like you might be too confrontational. After a mess of a situation, I had my father take me to an appointment. It was great because even though that particularly doctor was / is fantastic, at that point, I was too emotional to get what I needed out of the appointment on my own. Just having him there helped but in addition, he thought of questions I didn't. Bringing a friend or family member, one who is a bit removed from the emotion of having a chronic problem, can really help a lot in my experience.

[littlemermaid]

Most aren't experts in dry eye, and they likely don't see patients with severe symptoms very often

Interesting point. The problems start for me when they advertise as cornea specialists in public service. Or they head up cornea units in public service hospitals. I have assumed in the past that if they are surgeons they can manage a difficult eye surface back to health, and are current on the factors. And this has been wrong. So part of the question process is to find out whether they are current and can do it.

What they are supposed to do with severe symptoms or recalcitrant cases like Poppy's, if they can't get her comfortable, is to refer on to someone who does know what they're doing, within the public sector. They sometimes don't do this because they don't want peers to know. Ahem. It's obvious when people finally turn up at the right specialist in a bad way.

I understand with autoimmune disorders it's even harder to find someone who knows what they're doing, or can even diagnose it, viz the work of Stephen Foster and other ocular immunologists. I think we've got about 5 in the UK. And I know docs are not necessarily referring on, even ophth, even paediatric, even in tertiary hospitals.

And from the doc point of view. Bad dry eyes is such a tough disorder. So much good management and worsening depends on what happens at home. I'm trying to manage this for someone else 24/7 and I know the oddest things cause flareups - computer use, shampoo, diet, late nights. So difficult to manage. So difficult to diagnose the causes. And d'you know what, sometimes the patient just doesn't take your advice

This is why the best possible scenario is, as Spmcc says, finding Someone We Can Work With. I've discovered a better approach is 'do you know...?' or 'what do you think...?'

Don't know about registration in Oz but here's the kind of thing to expect GMC/good_medical_practice/duties_of_a_doctor

[glenda]

I agree that it is important to write out your questions beforehand. I know the first few times I broke down and cried and couldn't ask any questions. I talked to my family doctor and she helped me put some questions together. My husband came to an appointment with me with a big notepad and the Dr. saw it and said what are your questions. I feel they want to help but you do have to be a little aggressive when dealing with your own health. They do not know how you are feeling, you need to tell them.

[poppy]

thanks for all your replies. I don't think we have patient advocates at our public eye clinic from what I can tell of their web site... My next appointment is private in any case.

On a related note, I have been doing some reading on avoidable diagnostic errors made by doctors. That is, where the error occurred due to the doctor's biases, assumptions, stereotypes, flawed thinking etc... I can see right away that again and again docs have done this with me, I don't know how to talk them out of this though, any ideas? Examples of doctors flawed thinking that I've experienced most commonly:

Assumption that the past doctors diagnosis was correct. The more docs we see the more this problem escalates; I have had docs give me their **** off speech before I've even sat down, let alone examined me, based on my referral letter or previous doctor's notes. I have had docs claim they "can't help me" before my bum is in the chair, based on the previous doctor's notes. Then you have to consider how the docs you at least have a history with, again fail to examine you before backing up their previous diagnosis/thoughts, you can see how an incorrect or incomplete diagnosis can escalate out of control. My first diagnosis was based on a few-seconds exam of the surface of my eye after a corneal ulcer by an abrupt and angry doctor who didn't even instill dye to examine the ulceration. Based on this one-second diagnosis, I have been unable to get fair consideration of my problem from any doctor since.

Doctors automatically assigning new or worsening symptoms to your previous diagnosis; this problem is worsened by the doctor failing to listen the patient when the patient tells them that this problem is DIFFERENT (patient's are apparently, almost always right in this case). Definitely had this happen to me as I assume most people have. For example, severe eye pain, severe photophobia, red eye is supposed to be a problem that is considered in need of immediate attention; yet once diagnosed with dry eye, the dry eye diagnosis means that your problem is automatically considered non-serious and does not require attention at all, despite patient protests.

Doctors who fail to consider that there may be more than one condition occuring at the same time; definitely happened to me! I really feel that I have more than one problem going on at the moment, but noone is listening to me;

Docs who stop looking when they find "something" - definitely can relate to this and can think of other people on this forum who have been affected; I recall one person here who suffered from crippling photophobia in the absence of other dry eye symptoms; the doc saw some mild blepharitis symptoms and simply assumed it must be due to this; despite the fact that photophobia is not a common symptom of blepharitis unless there is significant corneal involvement.

Oh and of course; the doctor's assumption that the problem must always be due to the most common cause. Patients of course, appearing to have some symptoms and signs that may be dry eye, must always have the most common, idiopathic and benign dry eye, no matter the clinical severity; there is no possiblity that it might be something different or that it might have an underlying systemic cause.

Doctors failure to reconsider their diagnosis when treatments aren't working - yep definitely - doctor's tend to blame the patient's non compliance - eg one doc that told me it was my fault because I needed to do warm compresses 4 x a day for the rest of my life even though warm compresses do absolutely nothing for my eyes, irritate my skin and I had given them fair trial in the past... the doctor simply wouldn't consider that their diagnosis and treatment plan weren't right, it was all my fault...

End rant

[Guest]

Interesting point. The problems start for me when they advertise as cornea specialists in public service. Or they head up cornea units in public service hospitals. I have assumed in the past that if they are surgeons they can manage a difficult eye surface back to health, and are current on the factors. And this has been wrong. So part of the question process is to find out whether they are current and can do it.

I suspect that since there are likely very few people that walk through their door with severe dry eye symptoms (despite a lack of severe clinical signs) that many, if not most, corneal specialists end up knowing a lot more about other corneal diseases instead (ie. the ones that make up the majority of their patients' problems). I think in the end, for many of us, the best we can do in our local area may be to simply find that corneal doc who cares, enjoys a challenge like us, and is interested in learning more about our condition so they'll be better able to help us.

[LaDiva]

Oh Poppy. I am only happy when visiting the Dr. I pay for myself. Every time I've been to those covered by my insurance, I have cried. With a list I cry, with proper questions I cry, with lots of sleep the night before I cry. They do not explain things well, and leave out big important pieces of information. The last time I went, I had a clear cyst growing on my eye. The doctor told me "I can't cut it off, it is probably due to your dry eye, and you'll just have to learn to live with it". I heard "you will have to live with this the rest of your life, it could get bigger and I cannot remove it". I cried and cried because my eye hurt, and would apparently hurt like this every day for the rest of my life. The next day I went to acupuncture. The therapist said "did the doctor tell you the cyst would probably go away?" I said no. "Well, it probably will. It is like a water blister protecting an area of the eye that is damaged. It should heal". It did heal. Why didn't the eye doctor tell me that? I didn't ask, but assumed from information the corneal specialist gave me that I was doomed for life. The point of this very long story is to check yourself internally while you are at the eye doctor, and if something is missing or unanswered, ask. Definitely take a list, and asking the right way is SOOOO important. *sigh* I wish my acupuncture therapist was a corneal specialist.