I just posted this as a response in another thread but as it has more 'general' application but as I am bothered enough I decided to post it again here as a 'new' thread. I would really like to know what others here think about what can be done to improve things:
There is FAR too much inappropriate, inadequate and/or downright incorrect and BAD treatment (or lack of it at all) discussed on this and the patient forum.
Surely 'specialists' are meant to be EXACTLY that - extremely well-informed in their areas - isn't that why GPs refer to them (in theory anyway) in the first place ? The fact is however if what is expressed here is true - and I most certainly 'believe' you all - that it often seems to be the GPs who seem more reasonable or at least prepared to become more informed and therefore ultimately respond in better if not necessarily always 'perfect' ways.
Pmrpro put it well somewhere on another post - because PMR/GCA inordinately affects women of a 'certain age' (more than men) - they/it is not a well-researched and understood disease(s) and not likely for this reason to attract a lot of funding in the near future at least - who STILL thinks biological sex/age are not compounding variables for discrimination ? So in the meantime we must be strong and ourselves well-informed advocates for our own health and 'evangelise' where we can to INFORM as many people as possible - especially where the info is sadly lacking. We just can't afford to be shrinking violets - it is also important to pass papers/research and references to those who are meant to be treating us and at the very least ask for their comments only if to ensure they actually READ them !
The other thing that irritates me is that specialists generally charge or are paid a LOT for their services and we should therefore EXPECT 'quality' - the same way we would expect that from any other professional - shouldn't we !!??
No apologies for this little rant - just NOT good enough !!!
Best wishes to all
Rimmy
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Rimmy
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We know there are some very good doctors out there, because people tell us so, or we may be lucky and have one caring for us. But there are also some pompous ones who look at the patient as being nothing but a problem to be solved and not as a person. That happens in all walks of life, but one wonders why go into the medical profession if that’s your attitude?
In their defence, as I’ve said before I think the Rheumatology field covers too wide a spectrum (certainly in UK that seems to be the case) and in the great scheme of things PMR, and even GCA with it's medical emergency tag is treated as a Cinderella illness. Not helped certainly by age and gender of patients. That’s no excuse however, everyone is entitled to a good quality of life irrespective of age, and certainly to be treated as a person, not medical statistic.
But compared to a oncologist or a brain surgeon maybe a Rheumatolgist has an inferiority complex, and attracts a different kind of mental attitude - after all most of the patients they deal with have do not have “sexy” nor “knife on the edge” illnesses. (Playing Devil’s Advocate there).
Just as an aside, I’m not having a “go” at Rheumies specifically, I’ve met a number of consultants with my husband’s illnesses over the years, and some have been brilliant surgeons but rubbish communicators!
After all, they are just mere humans- and have their off days at times!
Once you can forgive, but more than that...move on!
You make some interesting points DL and I agree some people are great 'technicians' - but not necessarily good communicators - and I wont go into the obvious 'gender' analysis which could be made of that - except to say good communication is vital - in fact essential in most circumstances relating to 'health'.
I am very bothered when some people on this forum who are already obviously very vulnerable and fragile say they have visited a specialist and leave after being terribly treated in a truly decimated state - Yeah THAT'S GREAT for PMR/GCA I'm thinking - ALL that extra 'stress' !! - hard to not conclude they'd have been better off staying home and just reading some of the great posts on this forum !
But to be fair there are of course 'good' Rheumies and it is certainly a broad - and becoming broader- area of expertise - as AI diseases/conditions seem to be rising exponentially. Still as women are more often affected by many of these we cannot necessarily expect lashings of $$$ will be spent on them any time soon and/or be reflected in the improved education of the medical profession.
Very possibly - but why did they choose to do rheumatology in the first place?
Surgeons have a reputation for poor communication - originally because they didn't have to communicate with anyone except other surgeons, the patients were asleep.They didn't "communicate" with theatre nurses, they barked out orders and expected it to be done they way they personally liked it! It was a hand-me-down attitude that we are only now beginning to escape. I went to medical school as a total exotic - working class background and no family history of medicine or family support was bad enough but I was also a WOMAN. Which shouldn't have made a lot of difference since almost half my class nearly 50 years ago (oh horror) were also women but all the factors put together did. I decided I didn't want to do medicine enough to starve for 6 years - and looking at my peers I made the right decision I think. So many have retired very early - but men too.
In rheumatology I wonder how many chose it thinking it was a field in which they could progress as science progressed with the discovery of new treatments. But they are expensive so not easy to get funding. And the real truth of rheumatology is that there is no cure - and when doctors cannot cure, they all too often feel they have failed. Add to that the current generation in their 40- late 50s who grew up with the expansion of laboratory and technological advances - who believe that the numbers or images getting better means the patient is also feeling better. They are used for the assessment of new treatments - but sometimes are meaningless. What patient cares if their ESR has fallen if they still can't move? And when the doctor doesn't believe them when they say so it is the beginning of a poor relationship.
The sad fact is things are to some extent going backwards - Uni fees will mean that a uni education becomes the province of the relatively rich again. And the relatively rich often do not connect with the relatively poor and sick. However - I am part of a group, OMERACT, Outcomes Measurement in rheumatoid disease, who realised that the only people who can tell whether a new treatment works are the patients - and patients form a significant proportion of the group with equal voting rights on what is important to be looked at. The rheumies there are mostly a different class act - and DO listen when a patient points out that the emperor has no clothes.
I wanted to also say (was interrupted) that I like your points about the focus on 'numbers' cf. the 'reality' of a patient's experience and the inability of some medicos to see they are not necessarily (always) interrelated. It is great then that there are groups like OMERACT which are 'patient-centric' (if there is such a term). This whole area of people/medicine/science/ human experience etc. etc. is very fascinating not only because we might find ourselves at the 'heart' of it but also because we now (as 'lay' people) have greater accessibility to medical information and research than in previous generations. This encroachment is gradually bound to change power relationships over time ... and it is clear this process has started.
Thanks PMRpro I really appreciate your insightful response
But what I find stunning is that anyone is actually surprised.
A woman can be simultaneously nice and assertive, appreciative of the help and advice she receives as well as critical.
I so often find when I read some of these posts that I get mad because some of the ladies are reluctant to question their medical staff and/or advocate for themselves. My bet is they wouldn't be so complacent if it was their kids disease they were dealing with. But that may just be my Yankee arrogance talking.
We have to be the change we want. No one is going to do it for us.
Oh, and by the way, this is why we need to ecnourage our daughters and granddaughters to become research scientists and doctors, to go for those high level business and finance degrees and law degrees.
Without more women in the seats of power in medicine, business and politics, they won't have the care they need in the future, either.
Yes I most certainly agree that we need more women 'everywhere' in all the professions - but I despair sometimes of our limited progress - despite several 'waves' of feminism. 'Politics' I know are not the focus of this forum but these - the politics of health cannot be avoided as we all confront them every time we have to negotiate health systems and institutions - which are STILL by and large implicitly and often even unapologetically and explicitly 'patriarchal'. I remain an optimist however as I see some incredibly brilliant young women on the radar determined to make a difference in areas of knowledge which were once denied to them. I think as a mature woman I can now best support their efforts by NOT accepting any condescending attitudes or behaviours from anybody at all - which would only reinforce more of the same into the future. Anyway advocating for our own BEST health treatments/services is perfectly reasonable - these are OUR bodies after all !!
Rant on Sister! I agree 100%
Although, I went at least two years with undiagnosed PMR (that morphed into GCA) because my GP (I saw the same GP each time I visited the surgery!) attributed my symptoms to the psychosomatic manifestations of a "woman of a certain age!."
It makes me angry when I think back on how easily he dismissed me and sent me on my way with a pill, a blood test, or the infamous, "It's just a virus," diagnosis!!! Grrrrrrrrrrr!
Yes, yes we do have the right to expect quality care... regardless of whether we are are seeing doctors in the NHS or privately.
I have mentioned this before on this forum - but in the 1970's my mother was treated pretty much the same way as you were (but she was sent home with Valium)- and as a consequence she lost much of her eyesight and had multiple small 'strokes' and she was never properly diagnosed with what was in retrospect almost certainly GCA. Perhaps I can 'accept' (although difficult) that was more likely to happen 'then' but it makes me VERY angry to think this could still possibly happen now !! I know these are sometimes difficult conditions to diagnose and there is such a thing as 'occult' GCA but when the worst happens as a consequence of incompetence & even 'discrimination' - then that is NOT 'good enough'.
Unbelievable.... I am so sorry that happened. Heartbreaking!
You know in that respect GCA has been a GODSEND to me really; this guy had me believing (because all the weird symptoms were so random and unrelated) that I was just obsessing about my health! If I didn't end up getting GCA... I could have lost my sight or worse! It is both incompetence and discrimination against "women of a certain age." And F*^@K Me, I'm not having it!
Yup - and it was someone with whom I THOUGHT I had a good relationship...
I thought I was badly treated until I read some of the experiences i read about on the forum. One think that has happened for me is that the forum has made me more confident about asking for things I need from them. I now think I have better techniques for asking for what i need and, as one starts to feel stronger and less fogged from pmr and pred, it becomes easier. Of course some drs will alwayalways be numpties.😜
I do think some people can`t speak up for themselves because we feel so damn ill that it knocks the stuffing out of us even further when come up against an arrogant rude dismissive rheumy....and we start to think, am I being ridiculous here expecting an answer to what`s happening to me, after all if they don`t help us who will.......yes, US on here.
My neighbour and sister couldn`t believe what I was telling them when I returned from a rheumy app, so they came to the next one with me...it takes a lot to render my neighbour speechless, and it almost did when she asked him if I could have RA, to which he replied maybe, maybe not.......he didn`t care either way......why would I bother to see him again??
I would tell anyone with possible PMR not to go near him.....
YES - vote with your 'feet' I wouldn't go back to him either - even some pretense he was 'interested' might have at least made you feel a wee bit better - this kind of insensitive dismissiveness (aside from the need for anything vaguely 'medical') makes my blood boil !
Dont you think that the system at I am sure most surgeries have an appointment policy of 10 minutes, for one condition. That is hardly enough time to get their attention let alone explain what your concerns are and a lot of that time is spent tapping away on their computer??
That was the gubmint's fault some years ago. They thought having specified appointment times would mean doctors could see more patients. But like almost everything else in healthcare, how long is a piece of string? And the result was that the 10mins was up and the patient hadn't been properly dealt with so they came back, and back - taking up 30 mins where if it had been done properly the first time maybe 15-20 mins would have done and the notes only had to be brought up once. Plus for some they had become more sick in the meantime - and that takes longer too. And that is why A&E and hospitals are struggling with a lot of acutely ill chronically sick who couldn't get proper care at their GP when they needed it but had to wait weeks for one appointment never mind 30 mins-worth.
Here I get what I need on the day I need it - even if that is 45mins. Everyone knows that and no-one complains, they'll will get the same in their turn. Now I can just phone or email and most prescriptions will be sent direct to my choice of pharmacy by email or be ready for me to pick up. I go to the doctor far less often.
Sounds like a good system in Italy book me a flight! ✈️. .. I have just set aside a couple of hours to watch the Winter Olympics and the figures skating on ice - absolutely wonderful. ⛸
The Italian woman figure skater is from just down the road! I do love watching her, she is so graceful, but the highly technical stuff is now essential. And while exciting may not have such beauty...
'Once you can forgive, but more than that , move on'. DL, I am seeing a Cardiologist, Thursday, who, on my last visit, was so abrupt and harsh, I vowed I'd never go back to him. However, he is the only 1 available, and if I turn down this appt, there's a 5 month waiting list.
I AM ARMED AND READY! DO NOT MESS WITH A SOUTH AFRICAN LADY!
Hi Karool, the important thing is, is your cardiologist a good cardiologist? A lot of surgeons have the most appalling bedside manner but are excellent at their jobs. The problem ones are those who think they are excellent and are not!
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what can I expect from this condition at to day? 
PMR or pain from other causes
call from doctor to increase steroids 
Report from the alternative treatments frontline
