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I have my appointment with a new rheumy tomorrow, after being let go with my old one, hoping for the best and going in with a positive attitude. Thanks to everyone on the forum I know a lot more about PMR/GCA now!

I’ve got a few articles printed to take in with me, in such short appointments, what has been your experience and approach to this? Is there an approach that has worked or not worked is asking them to read and consider the information?

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I had the most arrogant rheumy there is, told him I had printed info, slid them over to him......you guessed it, he slid them back!!😈

Many on here have had a good reception when taking info to their rheumy, so good luck......

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I write everything down and hand it over while saying, "This is for my benefit as my memory is so bad."

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I would council that you drip feed your knowledge to them. Perhaps the initial appointment should be about assessing each other and finding common ground. Only use you arsenal if the need arises. Keep your powder dry. Good luck! 😉 xxxxxx I hope it is one of the good guys!

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Thanks, yes sounds like a good idea. There must be some common ground somewhere, and I’ll have to see what she says.

I have another referral to a different doctor also, so there’s another option if she’s not right.

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You sound so powerful now. 😃

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Depends on the emotional maturity of your doctor and whether they feel threatened by your knowledge or see it as an opportunity for professional development.

If you go in with guns blazing you will more likely put their backs up, however sometimes one has to go in warrior like to have the courage. Either that or a few whiskies first which is equally ill advised. Cool, calm and calculating is a big ask, so do your best. You never know, it might even go well without too much stress 🤞

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I’m hoping your last sentence comes true!

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I highlight the passages of particular interest and applicability to me. I have said, on occasion "This seems to describe me perfectly, and better than I can do myself. Take a moment...maybe it will help us figure out what to do..."

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Hi Mstiles, sorry to know about your experience with your current Rheumy. :-(

From experience: if you are unhappy with, or have reason to question the professional advice and / or attitude of your medical adviser, it is a good idea to put it in writing at a Formal Level to them, with a copy to their Practice Manager and / or their appropriate Regulatory Body in advance of your next appointment.

This puts everything 'On The Record', and the medical professionals or their supervisors have a legal obligation to respond to, and take any necessary steps to address your concerns.

I know this can involve you / us in additional Stress and administration time that we don't need (especially with PMR / GCA!) - but it might just get them to take you more seriously and / or review their position / approach towards their Duty of Care of you as a Patient when you are next in front of them...

Hope this helps. Please keep us posted, and try to stay positive in the meantime ;-)

MB :-)

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Thank youI will keep you posted.

He dismissed me, after that I couldn’t and don’t want to see him again. I’m looking for a better fit, and I do have notes about what happened but decided not to get into a protracted conflict as too stressful when being seen by him isn’t possible anymore anyway.

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You have to bear in mind that while that may help in the UK - making a complaint like that about a private practice is a very different matter...

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I haven't had too much experience with this, but when I took in copies of slow tapering schedules I showed them to my doctor with the comment, what do you think of this and told her I'd like to follow such a program. She had a look and said it seemed fine. A few months later I gave her a copy of a new book which had been published, mostly for doctors as I discovered after buying it, and she appeared to be thrilled. I never went in saying this is what I want but as is my nature, I guess, approached her expecting her to be on my team and I was bringing her possibilities for improving our game.

I had a different experience with a dentist who seemed to resent that I'd done some research, assuming that I was second guessing him, although I went in with the same approach. So it all depends. I think you need to talk for a little bit before hauling out a stack of papers, and do it by asking their opinion.

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Yes, I printed a lot for possible future use. Not going to bombard her with a lot. I’ll have to see what she says before doing anything. I wrote a brief list of my health issues, treatment, family history I thought might be useful to give her. For tapering, “What do you think of this?” Sounds good. I printed out several.

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I’m afraid it is something I would never do. Consultants must be heartily sick of patients producing screeds of information off the web. To me it seems tantamount to saying they need informing. I never admit to having read anything on the web but use phrases like, “ is it a possibility that.........” or, “is it true that......”. However, that is only my opinion.

Liz.

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I always say I contacted or went on the Polymyalgia website....how can they argue with that?......but mine stil! was not intetested, but the completely different registrar was.......😏

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I would take the approach that the first appointment is all about her and you getting to know each other and her assessing your condition. Take notes of your history and symptoms etc and explain that you've written them down so you don't forget to tell her something important. She may already have read the papers you have printed. You don't want to set off on the wrong note with this new Rheumy! If there's something in any of the papers that you really want to address, then paraphrase it as a question, as polymy suggests.

Hoping all goes well for you.

Remember to breathe!

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Thank you, very helpful.

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Phrasing things as a question is always good, thanks for the reminder Rugger.

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Do you mean the poke in the eye & knee in the groin world is over Rugger!!!

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Careful now.. ;-) :-D

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Hi Mstiles

Perhaps I am just not a 'tip-toeing' kind of person but I cannot see the point of NOT being able to be direct with a person who is meant to be helping you to become a 'well' person. I think it is actually their job to listen and not to be thin-skinned or over sensitive about the fact that they may not know 'everything'. Nobody does of course - not even the most educated person on earth can - and it seems only reasonable they should be able to acknowledge this without crumbing into a heap or becoming dismissive instead.

Maybe it is 'overwhelming' for some of them to have a bundle of papers pushed their way - but they should be able to at least glance at the material and ask something about the contents and which aspects YOU think might be pertinent for you. In fact I would call that 'good manners' if nothing else. I realise people sometimes have to wait ages sometimes to see a specialist and it is very disappointing if they are not receptive and helpful BUT if they aren't really 'listening' they may ultimately be no use anyway.

So I would be direct myself - not rude - but express your concerns about any obvious gaps in their knowledge when and where it is particularly relevant to your treatment. Tapering is a 'biggy' in this department as we all know. If there is too much resistance then I can't see the point of pushing 'sh*t' uphill - too much fatigue involved - and I would instead just keep looking for a better medico.

But all that said I'm sure it is more likely to go well !!

Best Wishes

Rimmy

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Thanks Rimmy. It sure is a balancing act to find connection between yourself and the doctor given different personalities. I’m not a naturally assertive person, not an Aries, ha ha, so it’s been a learning experience to put forward my concerns.

My plan, think positive, see what she’s like, show her a bit of medical history, see how it goes.

Thanks Rimmy!

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Hi my opinion is similar to others to perhaps have your main points that you want to cover on a small piece of paper and in priority order so that if you don't have time to cover everything then at least you've covered the main points. I'd feel that this first appointment is for you both to get to know each other and access where you're both going. I'd be inclined not to pass over screeds of information but if its your list and important ask her opinion on whatever so you know where she's coming from. Your past experiences have been so rotten that understandably there is the inclination to go in there on the defensive. If you can manage "pleasant assertive" I think would bring about a more positive result for future contact. And who knows this new Consultant and her approach could be so good! All the very best - let us know how you get on.

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Yes pleasant assertive is what I’m going for. No masses of paper, I’ll have to see what she’s like. The worrisome part is how to address past treatment from the other rheumy. I’m not going to get negative, “just the facts.” Thanks Jackoh.

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Yes agree- just the facts !! I'd be inclined too to be brief- you just want to move on!

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I wouldn't address past treatment (yet). Start afresh and play it by Ear

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I’m lucky to have a rheumy who not only welcomes my sharing info, she always wants to know any hot topics of discussion with our group, like whether people noticed their symptoms starting after a physical stressor like surgery.

I did not start our relationship sharing info. We got to know each other and how we each approach things.

When I had a flare after my first taper I mentioned this group and slower tapering. She was fully supportive.

That said, I do a lot of research because I enjoy it and share the “best of” with her...from respected medical journals and such.

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Sounds like a mutually respectful and supportive relationship. How wonderful!

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I know how lucky I am! With other doctors, not so much :>)

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Blimey Susan, she sounds like an absolute Angel :-). I think I'm in Love with her... (swoon, swoon etc..) ;-) :-D

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Dear Mstiles / All

Just my thoughts on this very important topic - and, as always, this is wide-open for discussion..

Whoever your existing or new GP or Rheumy is, and whatever their more apparent Behavioural / Communication Style (e.g. Direct / Analytical / Expressive or Empathic), they are Humans - and often have their own personal and professional challenges too.

I broadly agree with some of You Lot here: to put Medics (or any Experts) on the defensive - e.g. by seeming to be overly knowledgeable and / or confrontational - doesn't help in the Doctor / Patient dynamic, even if we are on solid ground in doing so.

So, I've found that Breaking the Ice with some gentle humour can help in softening the relationship / making it feel more Human - especially with, and for the 'Direct' / sometimes more dogmatic Types of Medic who might be on their guard.

By this, I don't mean cracking a joke at the beginning of the consultation (e.g. 'Did you hear the one about...?' etc). It's perhaps more about initiating / taking the lead in the conversation with a light-hearted comment (e.g. about the weather - a universal topic) or even asking the Medic "First of all, how are YOU?!", or a similarly disarming comment / question. I'll put a large bet on it that many GPs and Specialists don't get this very often from their Patients, and it will probably be a nice surprise to them..

Having Broken the Ice (and shared a Precious Smile): of course, then we can get down to the more serious business of negotiating what we want and need as a Patient - and hopefully with a little more Goodwill from a possibly hard-pressed Medic than if we had gone in 'all guns blazing'?

There's an old saying in Life (and Diplomacy?): "A Smile is the Shortest Distance between Two People". I won't bore you all to death about the Psychology of Shared Humour (in my language - 'Shared Humanity') right now: only to say that it's known to be a very powerful strategic tool in all sorts of contexts, including Relationship Dynamics, Conflict Management, Negotiations and Dispute Resolution.

Just ask Teddy, my steely-eyed and efficient but often intransigent and stubborn Manservant. If I tickle his tummy and smile at him when he's annoying the daylights out of me, he's suddenly a pushover and I get what I WANT (e.g. cleaning the Limo again)! :-D

Hope this helps, and keep smiling on the sometimes difficult journey, and in your dialogue with some of the more 'challenging' Medics. The above might seem to contradict my previous suggestion about 'keeping detailed records and escalating things formally' if / when in dispute with a Medic, but if all else fails, this is still an option.

All the same, I'm a great believer that winning Hearts is sometimes as important as winning Minds...? ;-)

'Uncle' MB :-)

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I totally agree with the importance of smiles and breaking the ice, that’s my typical approach. I’ve been called charming more than once!, (can talk to anyone)... I guess I was shocked I coudn’t communicate with that doctor.

Thanks markBenjamin

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Well, I guess that even our best efforts can sometimes not Break the Ice. But try not to worry, it might be more about the doctor's attitude / personality more than yours ;-)

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An I thought I had a few different personalities mate!!! ATB

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Yep Pepperdoggie! We are all a mixture of all 'Types' - but in differing proportions and in different contexts.. ;-)

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Some times Mark I am never sure which personality will show up for myself on pred. Not that maybe I was a full shilling in the first place!! I even question who's real on this wonderful forum sometimes! That's where I am in a baffling world.

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All the best Mstiles,the others have said it all.

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When browsing the internet I recently came upon "A letter to Patients with Chronic Disease" written by a doctor. It's worth a read. Not sure if this link will work, however all you have to do is types in the title (shown in quotes) and it should show up.

edsinfo.wordpress.com/2015/...

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That brought a tear to my eye, nuigini. I have a wonderful GP and Rheumy and could imagine either of them writing that letter.

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Hi Mistiles, how did the visit go? Sorry this is probably late...but one might focus the new doc not on what went wrong with the old, but what you hope to get from the relationship. Use phrases such as: hope we can be partners in my care, it’s important to me we listen and hear each other, I read to learn about my illness do you have suggestions for articles? Send a message, yep you’re the doc and I respect you, but I also respect myself and have expectations of this experience.

Hope it went well!

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What excellent questions, thanks PMRpro. I think it went well, no focus on the old rheumy, I did say something similar about working together. I will post a longer a longer report. Her last words before she went out the door, we will get you healed”, I heard the “we”..,as in the two of us together.

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