Anyone else having problems getting doctors to un... - LUPUS UK


28,870 members โ€ข 25,291 posts

Anyone else having problems getting doctors to understand what you say.....๐Ÿค–

eekt profile image
โ€ข22 Replies

I guess many of us will know doctors don't understand words like 'fatigue' and 'pain'...but in a rare moment of human empathy one time, my GP said he said he used to go clubbing in Manchester in his youth (Manchester...clubs...90's...๐Ÿ™‚๐Ÿ™ƒ๐Ÿ˜ฎ, maybe that's why he's so irrational), which appears to have left him hard of hearing ('you'll need to speak up', hand cupped behind an ear)...surely a GP isn't fit to practice if they can't hear what patients are saying?? ๐Ÿคก

Likewise, my Rheumy's first language isn't English, so after each review, I have to write a letter correcting what he thinks I said...๐Ÿ™‡โ€โ™‚๏ธ

'Always look on the bright side of life, d-dn, d-dn, d-dn-d-dn-d-dn...' ๐Ÿ˜‹๐Ÿค—๐Ÿ˜ป ...fade to long shot, whistling xxx

22 Replies

A medic who is hard of hearing needs help. Otherwise he may well not be fit to practice. The practice manager needs to know.

eekt profile image
eekt in reply to Lupiknits

Thanks Lupiknits, I think my GP need help in more ways than one....if only he'd made the grade as a vet, he wouldn't have to listen to patients...! ๐Ÿ˜๐Ÿ˜‚ ๐Ÿ˜—xxx

A letter to the PM with 'I am concerned...'?

Even when they speak perfect English & you write it down ahead of time & bring a male translator (a husband) some still don't understand what you say to them ๐Ÿ˜•...humming that turn ๐Ÿ˜ฏ

๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘ ...GRRRRRRR....& What about the GPs who Stonewall you totally by sitting & gazing wordless at you throughout the appt...๐Ÿ™‡๐Ÿผโ€โ™€๏ธ

eekt profile image
eekt in reply to Barnclown

๐ŸคฌIt makes your blood boil but of course doctors are never wrong, they only make 'honest mistakes' so we're not allowed to be angry otherwise we'll be removed from the list...

Seems like a great example of when recording the consultation (thanks Melba1 ! ๐Ÿ˜—) would have been fun, if only to say at the end 'I've recorded this'! ๐Ÿ˜

I followed up Friday's appt with a letter linking my psych distress over the years to GPs, something that has never crossed my named GP's mind ๐Ÿค“

How is your garden woodland looking this autumn? ๐Ÿ ๐ŸŽ ๐Ÿ‚ ๐Ÿ๐Ÿฟ ๐Ÿฆ”๐Ÿ ๐Ÿ ๐ŸŽ ๐Ÿ„๐ŸŒป๐Ÿฐ ๐ŸฆŠ๐Ÿ—๐Ÿ—๐Ÿ—๐Ÿ—๐Ÿ— A neighbour has invented and built a scratter to make juice as the apple trees are laden this year...he likes his cider! ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜ mo xxx

Barnclown profile image
Barnclown in reply to eekt

OH YES, OMG YESSSSSS...and itโ€™s ALL involved in the system: nurses, nutritionists, physios, technicians of all types...we have lots of health system workers here on HU: i โค๏ธ it when they give us their take on this...

GLAD you followed up with that letter ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘

Woodland is looking happy, thanks: flora & fauna ๐Ÿ˜†...yes: great year for apples!!!! soon theyโ€™ll be falling for moorhens, badgers, roe deer & muntjacs & co to much - neither of us can eat them, so the wildlife feast, and we watch ๐Ÿ˜


eekt profile image
eekt in reply to Barnclown

Sometimes it feels like a Gordian Knot!

but this here forum is the SCISSORS! โœ‚๏ธโœ‚๏ธโœ‚๏ธ๐Ÿš€๐ŸŒ‹๐ŸŽ‡

Yes, my patch is a fast food store for wildlife! ๐Ÿฐ ๐ŸฆŠ๐Ÿค ๐Ÿฃ๐Ÿฆ๐Ÿž๐Ÿ ๐Ÿ›๐ŸฆŒ๐Ÿ€๐Ÿฆ„

It's a wonderful thing you've done, 20,000 trees?!? ๐ŸŒฑ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ ๐ŸŒณ mo xxx

Barnclown profile image
Barnclown in reply to eekt

HELP: canโ€™t get your link to work: please post again: i โค๏ธ your links, mo....

๐Ÿคท๐Ÿผโ€โ™€๏ธ Well, Badger has done it...iโ€™m just chief cheerleader + canteen operative + photographer...20k native trees + shrubs planted by himself in 5 consecutive phases in 5 years...๐ŸคฉMY HERO...a v methodical determined guy....all achieved right after his early onset crohns went into remission...after several major bowel resections + being advised he had Addisons (NOT). Birches in earliest plantings are now at least twice as tall as we aim is to postpone going to heaven until our offspring are at least 20 years old and strong enough to thrive on their own ๐Ÿ˜‰๐Ÿ˜†๐Ÿ˜˜

eekt profile image
eekt in reply to Barnclown

Just when I'd learnt to link members๐Ÿ™„ goes!

That is quite an achievement, especially major ad surgeries! ๐ŸŒŒ ๐ŸŒŽ ๐ŸŒ ๐ŸŒ Even in heaven, that 27g of electromagnetic energy we leave behind will be watching over your woodland! mo xxx ๐Ÿคฉ

Barnclown profile image
Barnclown in reply to eekt

๐Ÿ˜ณYIKES ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘

honeybug profile image
honeybug in reply to Barnclown


That is so rude, I have learnt to stand up for myself a lot more. If that happened to me now I would say Dr when you are able to get your mind back on my situation & problems let me know as I donโ€™t want either of us to have a wasted appointment! When you call them on it their attitude will change immediately & you should get a good appointment next time as well. If that doesnโ€™t happen you need to find a Rheumo who has a passion for lupus & good communication skills.

Sometimes they donโ€™t know what to say because there is still so much that is unknown in the Rheumatology field but if that is the case say to them Dr you look like you donโ€™t understand what I mean could you please say it back to me so that I know we are on the same page and time is not wasted. If they donโ€™t know the answer ask them if there may be a colleague who deals more with that aspect of things.

Good luck

Melbourne Girl ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘ Well Said! Thatโ€™s basically how i deal with this too! I โค๏ธ the way you explain it! ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ

eekt profile image
eekt in reply to Melbourne-Girl

Cheers Melbourne Girl! That's a very strong and positive attitude ๐Ÿ’ช! Unfortunately in this corner of Scotland, there is a choice of one for Rheumatologists, with no access to sub-specialists and only one GP practice within a 10 mile radius, so I have to walk on eggshells to avoid aggressive responses from big egos, and employ secret service style strategies for tactical engagement! ๐Ÿง

It's a completely different kettle of fish in Germany (I worked there in the nineties), where you can walk into an open surgery of the (sub)specialist of your choice any time of the day, and if you don't like their attitude, you can walk away. I only saw a doctor half a dozen times in ten years there, but they were all exceptionally person-orientated and remarkably one time I saw a generalist about sleeplessness: she sent me for a abdominal CT round the corner straight away and told me to come back with the results (imagine my confusion: 'when do I go?? when do I come back??)....I realise now she was looking for autoimmunity!!! (but before i had it - it was insomnia) ๐Ÿ‘ฉโ€โš•๏ธ ๐Ÿ‘จโ€โš•๏ธโญ๏ธโญ๏ธโญ๏ธโญ๏ธโญ๏ธ๐Ÿ˜Š๐Ÿ˜Š๐Ÿ˜Š

What's the healthcare system like where you are? mo xxx

honeybug profile image
honeybug in reply to Barnclown

You said it sooo right Bc

Way to go !!!! Yahoo!!โ€™


EJ ๐Ÿ’‹โ™ฅ๏ธ๐Ÿ™๐Ÿค—๐Ÿ˜Š๐ŸŒธ๐ŸŒฟ

I think I must be rather lucky with GPs - apart from the one 2 practices back who threw away the stool sample I had been asked to bring in and told me I was a hypochondriac and wrote this, spelt wrong, in my notes!!

Plus the one who offered me artificial insemination there and then when Iโ€™d gone to see him about some problems conceiving- and later wedged the door open to shout that the extremely painful huge viral blister later found in my eardrum was a figment of my โ€œartistโ€™s overactive imaginationโ€! But then I later learned that his wife had just left him for another man only the day before. I canโ€™t say I blamed her.

Oh yes and then there was the old chap who diagnosed me with pneumonia when I was a young student, having carefully examined my breasts and told me they were very lovely!!

And there is one woman I now avoid like the plague in my present practice. But otherwise I have faired well with GPs. Itโ€™s just neurologists I struggle with!

Your chap clearly needs to get himself a hearing aid - Iโ€™m sure he would have access to the most expensive and descreet kind. Perhaps you should take him in a brochure?! X

eekt profile image
eekt in reply to

Crikey Twitchytoes! I had an older Bermuda-tanned male GP when I was a student who would weigh my breasts whenever I went....warts on your fingers? I'll WAAAAAYHAAAAY your breasts! ๐Ÿ˜•๐Ÿ˜ ๐Ÿ˜ฌ mo xxx

Hi eekt you appear to have a real problem there (on top of your medical ones). The lack of choice for both G.P.s & Rheumos etc is almost non existent. Sometimes too Drs in such a situation can get a Napoleonic complex & think that they know more than they actually do. I actually get extra confidence in a Dr if they say

โ€œThis is something I donโ€™t have experience with, much knowledge of etc). The trust is there immediately & I have even had a Dr day letโ€™s look this up together to see if there is new information or further clarification on it nowโ€.

I really feel for you lack of choice in a very important disease in your body moving forward in a positive way so that the Dr you have is totally au fait with you and communication excellent where you could ring up when you are extremely unwell and get help immediately.

Are there other areas of Scotland where you may have a choice of Drs & it can be managed remotely in some cases with Skype etc and after finding that good Dr he/she would know when you have to have a face to face visit?

Do you have friends of family in any of these places? Something else that can happen here is that the larger hospitals have accomodation near the hospital which is funded by donations where you could stay for a small amount of money only or they may have in place systems where various patients can stay free of charge for a night or a few weeks if there are lots it tests etc that need doing but you may not quite be a candidate for hospital at that time.

Unfortunately our health systems appear to be very different but it would be good if you could do some research to find out about these sort of places that may exist in larger areas of Scotland. You definitely need to work on it so that you can get the โ€œright oneโ€ & are not stepping on egg shells any more. The other way people sometimes do it here is they offer to take a patient who is ambilant and charge a very small amount of money so thatโ€™s affordable for all people. Such places are usually close to the hospital as well.

The system is not perfect as are all systems and life but sound more in line with what you experienced in Germany.

Clearly you will need to deal with the egos to get the help you need as you need it but if at all possible try & work out a way where it is manageable for you and you have choices and feel you are โ€œin the drivers seatโ€ working cohesively with someone you like communicate well with and totally trust.

If the hospitals in larger centres are not yet set up with the type of accomodation I mentioned or are over loaded with people needing the same it also works to put an ad in the newspaper outlining what you are looking for re the area and no exorbitant costs etc. you may have to try a couple of places to get your โ€œhome away from homeโ€ when you need it.

I hope this has helped to give you some ideas that may work for you & help you get the right Dr for you. Itโ€™s difficult coming from different countries as I am not sure if what I have suggested would work in Scottland but if you have rules saying you have to be treated by a Dr within a certain radius I would try a& find the right Dr in another radius & say your current home is now just a holiday home. There must be a way around it. Good luck eekt and donโ€™t give up until you are in the drivers seat again. I will be thinking of you and look forward to hearing about any progress forward to where you want to be, Melbourne Girl


eekt profile image
eekt in reply to Melbourne-Girl

Thanks for the lengthy and very kind reply Melbourne Girl! Every little helps in keeping me sane! ๐Ÿคค

That's a very interesting idea about moving residency on paper, and it can be done in Germany very easily (or could, 20 years ago) for every resident has to be registered at an address and a lease document is all that is required to register. You've prompted me to look up German citizenship rules again, and there is brand new legislation working it's way through the Regierung to allow UK citizens EU rights of residency until the end of 2020, and to retain dual nationality post-Brexit, which is otherwise not allowed. ๐Ÿ˜€ If there is a Deal before next March...

But in the here and now, rules on main residency are even tighter since the Scottish Government introduced its own tax system in April ๐Ÿ’๐Ÿ’๐Ÿ’, which includes days spent living at each location in some cases, on top of the usual checklist of where you're registered to vote, where council tax is paid etc.

There are special units, like in the national sick children's hospital, where mums and dads have accommodation but that is very much the exception.

If lived 10 miles further the south, across the border, I could ask to be referred to the top multi-disciplinary centre in England (for NHS England allows a choice of consultants country-wide) to get to the bottom of my decades-long nose/sinus problems, instead of doctors in Scotland playing pass the parcel to avoid missing a vasculitis diagnosis (2 ENT's say ANCA-negative doesn't rule it out, one would biopsy, the other wouldn't and 2 Rheumys think ANCA rules it out and a biopsy would be conclusive (it wouldn't be, and could cause my nose to collapse further), GP has never heard of vasculitis ๐Ÿคก)

In short ๐Ÿคช I know I have to move, for other reasons too, and Germany would be a good place to go, but for now, I've reach the final stage on the pathway to have nasal reconstruction surgery three years after referral (just waiting on a timescale for a decision if it's to go ahead! ๐Ÿ˜ค) so I'm hanging on in while educating my GP..

I gave him the SLEDAI-2k form last week and he said 'you won't be surprised to know I've never seen this before'...๐Ÿ˜

Great to hear from you and it would be FABulous to hear more about how it works on the other side of the world, particularly in terms of getting a SLE diagnosis: here the average time from inset to diagnosis is 7.5 years!!! Because GPs in the main have little knowledge of autoimmunity and look at one problem at a time, so the random manifestations that come and go over years are dismissed without suspicion of a relapsing-remitting systemic illness, unless it's visible eg RA.

Thanks again! Be well! mo xxx ๐Ÿ˜š๐Ÿ’

Eekt thanks for your reply- no War & Peace!

Really pleased you are thinking of moving to get your health assessed & treated properly. You will feel so much better when you have choices and chose your own way forward,

Keep in touch & take care

Melbourne Girl

๐Ÿ˜ฌ I wrote all that before I was fully awake...but a helpful stream of sub-conciousness for me! ๐Ÿ˜‚ Be well! mo xxx

honeybug profile image
honeybug in reply to eekt


You may also like...