Do you annoy your neurologist?

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This was posted by another member of Epilepsy Action in the UK.

It makes for quite fun reading.

Some of the comments at the bottom are funny; however, I wondered if we really are as guilty as they say we are as the responder rate was less than 50%.

I thought it might be interesting to see if any of the forum can lay claim to fame to any of the neurologists' patient behaviour pet hates.... or any new ones.

My personal favourite is - 'A patient called me over the weekend and left a message. When I called back, the patient told me not to bother because he was having sex (not exactly in those words).'

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1868354/

Seemingly our top 5 crimes are:

No show for appointment;
Verbally abusive with your staff;
Poor compliance with medications or treatment;
Late for appointment; and
Do not know the medications they are taking.
 

Loopy Lou

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I think the no-show thing is probably less of a problem here than places where you have to pay for appointments, since if you don't show up for an appointment with a consultant, odds are that you're going to get discharged and you'll have to go through the whole referral thing again :O

I think i'm a pretty good patient considering, but neuro really doesn't like it when i've researched stuff, even though i do always defer to his superior knowledge (of course!)
 
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I think the no-show thing is probably less of a problem here than places where you have to pay for appointments, since if you don't show up for an appointment with a consultant, odds are that you're going to get discharged and you'll have to go through the whole referral thing again :O

I think i'm a pretty good patient considering, but neuro really doesn't like it when i've researched stuff, even though i do always defer to his superior knowledge (of course!)
I have truly despaired with some of them regards pharmacology.

Two, in particular, were truly hopeless in that field.

I tend to take that a bit personally.
 

Fedup

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Questions and Internet research are a marker of a patient wanting to be a part of their care plan. That is a good thing. That is a great thing! The problem is that we are not being paid enough to spend the needed time with the person. So we are impatient. It is sad that they have spent 6 hours on the Internet, but their doctor isn't paid to spend 45 minutes explaining their care. Reimbursement is needed so that we can educate all of these people with their demands, expectations, and needs and gain back their respect!
1) They are not paid enough to spend the needed time with the person.?

That is a laugh, wish I was getting paid like them.
They are getting paid enough, they should spend time with the person but when you are
in a rush to play golf you do not have the time.

2) We are impatient?

Very true they are impatient, arrogant and self-centred.

3) Reimbursement is needed so that we can educate all of these people with their demands,
expectations, and needs and gain back their respect?

Respect is something earned not given because you have a title like 40 years ago.

I think that physician behavior is much more common than patient or family misbehavior
This is the first time I have a doctor admit something. I am over 50 years seeing doctors and in that 50 odd years I have only meet one polite doctor. It is very aggravating when the doctor tells you "I did not have time to read your notes, so tell me what I need to know" yes that was actually said to my by a neurologist. Just because a doctor gives you medicine to take does not mean you do not know about it or want to know about it and they like it even less when you know about the drugs they put you on and they do not know.
 
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Dr.s are dealing with people who are suffering. IT seems like a vast amount of "well paid" Docs forget this fact. I just roll the dice and hope meds work.
 
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Dr.s are dealing with people who are suffering. IT seems like a vast amount of "well paid" Docs forget this fact. I just roll the dice and hope meds work.
I have to say I'd agree with that. We had a GP at our local health centre who used to relish in lecturing people.

I found out from someone who's children I taught that he had treated their father for heartburn instead of referring him for heart problems.
Another GP gave me antibiotics for a scab on my scalp that wasn't healing (a result of an injury during a seizure burning myself on an oven). It needed 4 months extensive plastic surgery after A&E looked at it when it still didn't heal.

In the UK we can't call NHS neuro's after hours, though I guess if you turned up in A&E the on call neuro would be called if you were deemed urgent enough.

I couldn't get hold of my last neuro for ages and the drug I was on a titration for was making my photosensitivity increasingly worse. My exams were also imminent. I left the man numerous calls and emails detailing the issue. I think even his secretary felt a bit sorry for me.
I gave up on him in the end and titrated myself back onto my old drug from an old prescription to sort out the photosensitivity for my exams.
When I went home my temporary GP in my home town noticed the anomaly and I explained why, all he asked was where I got the drugs from and wrote me a prescription for more of the same.

He's actually one of the good ones.

10 years... yup...TEN.... of nasal sprays, inhalers (one stopped my E drugs from working with cumulative use), breathe easy nose strips, drops for ear wax, drops for ear infections, being told I had allergies to this that and the next thing from pollen, grasses to dust to whatever they could think of each time something was eliminated, being told I was imagining it (!), being told it was 'glue ear', chronic ear infections from teaching swimming (I swam competitively and had my head under the water more often then and never once had an ear infection), being told I needed my ears syringed and hearing tests (at least I know my hearing is top notch). Eventually, I was told I have patulous eustachian tube dysfunction and they put grommets in to fix it. The grommets didn't work. One specialist didn't read the notes and assumed it only went as far back as the 2 stone I lost on Topamax. Seemingly it has a prevalence of cases of anorexia nervosa. Medical solution - I was advised (seriously!) to enjoy the sounds of my own body! Saw a paper about treatment with botulinum toxin, no one has mentioned this - but as the above says, they don't like us 'playing doctor'.

One creep who I shall never forgive admitted my husband into male surgical after the local GP said 'probably appendix or strangulated hernia' I wish to god he had stuck a post it note on my husband's forehead.
This twat decided it was a bowel blockage down to my husband's 'poor western diet' and starved him for 3 days. OK his diet isn't quite as good during uni term time but we have been vegetarian for 17 years now. And I'm quite proud of the fact that I don't feed my husband crap or eat it myself. Topamax caused me problems with food but I still made sure he ate.

The best one with regards to not reading notes was a neuro who congratulated me on not having epilepsy after a normal EEG.

Apologies for the long post, I'm sure we could all go on with OUR complaints. The doctors and neurologists seem minor in comparison given they are doing what it is they are paid to do.

Regards abuse to staff, I once got into an argument with a doctors receptionist, I was trying to contact my neurologist and sort out my drugs. She was rude and abusive to me if it wasn't simply her word against mine regards the call content I would have complained.

I once went to a surgery and I swear this is how it worked - you went in, there was a woman behind the reception, you rang the bell, eventually she trotted over and without opening the window she just demanded 'name', you said your name, she ticked you off (no idea what happened if you weren't on the list!) and she pointed to the back of the surgery to the waiting room; the first time I came I hadn't a clue where to go. In the back, you just waited for a doctor to call your name because you hadn't a clue who you were registered with. I was really glad when I got a place with a more local practice.
 
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Loopy Lou

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I once went to a surgery and I swear this is how it worked - you went in, there was a woman behind the reception, you rang the bell, eventually she trotted over and without opening the window she just demanded 'name', you said your name, she ticked you off (no idea what happened if you weren't on the list!) and she pointed to the back of the surgery to the waiting room; the first time I came I hadn't a clue where to go. In the back, you just waited for a doctor to call your name because you hadn't a clue who you were registered with. I was really glad when I got a place with a more local practice.

It looks like that's how my new docs is going to be, I'm having to leave my little surgery that i've been with forever, where i had a specific doc each time, and going to one of the big health centres that feels more like a cattle holding pen. I have no registered doc and they've been terrible with everything so far. Mind you they're probably getting an influx of new patients from my old surgery since it's closing. I'm surprised they haven't asked me to come in for a new patient medical yet too, it's been a few weeks. Do they even still do them?

My neuro is a very hard man to get hold of, so it seems. Gah.
 
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It looks like that's how my new docs is going to be, I'm having to leave my little surgery that i've been with forever, where i had a specific doc each time, and going to one of the big health centres that feels more like a cattle holding pen. I have no registered doc and they've been terrible with everything so far. Mind you they're probably getting an influx of new patients from my old surgery since it's closing. I'm surprised they haven't asked me to come in for a new patient medical yet too, it's been a few weeks. Do they even still do them?

My neuro is a very hard man to get hold of, so it seems. Gah.
Hope you get hold of him.

That practice didn't seem to understand the concept of 'innate tolerance' and kept giving me scripts for 'topiramate'.

In the end, I asked my neuro to sort it. 'Surely, what doctor are you registered with?

Argh!
 

Fedup

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Unfortunately the NHS and HSE in Ireland seem to be very much the same, last year I ended up in A&E in Kings Cross and there was no on call neurologist at the time, I was told I needed to see my own when I get home.
 

seagull

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My nuro flys into our hospital once a month from Poland at great expense to NHS we not able get neurologist in our hospital.one doc said have to pay Kings ransome to work in armpit of england
 

finalpoet

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The one thing I do is not knowing my meds or especially not knowing my amount, 250mg vs 2500m.
 

seagull

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The one thing I do is not knowing my meds or especially not knowing my amount, 250mg vs 2500m.
That's one things I do.

On the no shows been worked out missing with gp is worth 30quid per patient...in England they got something called eye in sky Wales do not have it and Scotland is different.
it means any doctors can access your med problems and medication that's the theory.
if you get Meds problems forgot them an example you should be able go any chemist and he give you enough tide you over but not NHS you pay price value of Meds I done it few times.many pharmacies won't do it but epilepsy thyroxin heart Meds they suppose to
 

finalpoet

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That's a great idea because I went to a place for physical therapy, etc. All after a brain surgery, anyway the point is they gave me the wrong dosage of my meds which led to a grand mal, all because they were given the wrong dosages. All because my neurologist isn't at the hospital I had the surgery.
 

Loopy Lou

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if you get Meds problems forgot them an example you should be able go any chemist and he give you enough tide you over but not NHS you pay price value of Meds I done it few times.many pharmacies won't do it but epilepsy thyroxin heart Meds they suppose to

I've done that before when i've been over visiting Ireland. Forgot my topamax so i called the docs there and they had the chemist drop some off to me the same day :)

That's one thing i'm glad of, that we don't need to pay the 8 or 9 quid per prescription, could you imagine if we had to pay per item? :O

On the subject of neuros, mine seemed to disapprove of me joining a forum lol. Probably for the same reason as they don't like people looking things up on google.
 
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On the subject of neuros, mine seemed to disapprove of me joining a forum lol. Probably for the same reason as they don't like people looking things up on google.
I suspect there are a chunk of them know that we come on forums to bitch about them...have gone on forums and ripped strips of neurologists in the past. Though I do like my neuro now she is really lovely and I will be gutted when she retires.

...and that on the forums we pick up stuff that they basically don't tell us...or strategically downplay in order to get compliance.
I was told by a neuro that I might lose a little weight on Topamax and Levetiracetam may make me a bit irritable.... understatements....

I don't know about Google, but I tell you what they really seem to hate - if you walk in and tell them you read their paper/s on such and such. They don't like being looked up by patients. That's how I found out one of my neuros had a thing about CP's, that was what the majority of his research revolved around. He was so sure I had a CP from one fuzzy description given by me and witnessed by our dog - who was too shy to come forward. Pretty sure I know the difference between having your awareness compromised and being unconscious - he seemed to choose not to.

Here Loopy, hows the pharmacokinetics going? There is a good book if you have time for a bit of of course reading, written by an anaesthetist 'Gerry's real world guide to pharmacokinetics and other things' by G.M. Woerlee (not a spelling mistake he is Dutch) it isn't that big and it kind of gets it into your head because it uses real examples of things that have happened. I got a copy on eBay but it's on Amazon too, it was only a couple of quid.
 

Nakamova

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Other recommended reading:
"Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients"
and "Bad Science", both by Dr. Ben Goldacre. They are thoughtful looks at problems in the way drug research is conducted, funded, interpreted, and presented to prescribing doctors and to the public.

If you don't feel like reading, you can always check out his TED Talk: https://www.ted.com/talks/ben_goldacre_battling_bad_science
 
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Read them and seen it, none have anything about pharmacokinetics. I really could recommend lots on that, the previous was just light reading, to stop Loopy's brain melting from course texts.

But if you are interested in the conspiracies of Bad Pharma try 'Selling Sickness: How the World's Biggest Pharmaceutical Companies are Turning Us All into Patients' by Ray Moynihan and Alan Cassels

Love the bit about Merck

Or 'Hard Sell: The Evolution of a Viagra' by Jamie Reidy, on which the film 'Love and other Drugs' was based.
 
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Ravensong

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I am not guilty of any of the "crimes." I have seen neurologists, though, who were so late I was ready to leave and who had staff that was abusive toward their patients. And my current neuro can have my records right in front of him and not know what I'm taking.
 
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