Quoting here a post I found on a forum that felt very important.
" A patient who does not advocate for themself may end up with a fool for a doctor. My experience as I’ve gotten ill has been that a high percentage of doctors are very good at telling and not very good at listening. There’s a strange sort of arrogance on their part, a belief that you, the patient who did not go to medical school cannot possibly know what’s wrong with you. Well the beautiful thing about information is that it belongs to no one and it’s never been more accessible. As much as doc whoever would like to feel that they have exclusive rights to knowledge we can still acquire it. I can read a college textbook too. It’s true that doctors are specialists in the human body and that deserves a certain amount of respect but people, even educated people make mistakes. But only an individual can know they’re own body. A textbook offers a generalization but no two bodies are alike. No two brains are alike. No two souls are alike. Many of us have have been misdiagnosed. We’ve had delayed diagnoses because doc whoever wouldn’t listen to us when we requested the MRI, or the blood test, or the whatever test is necessary. The doctor patient relationship needs to be a partnership. So truthfully we should still listen to our doctors, but our doctors need to listen to us. That’s just my 2 cents. I’d throw an extra cent in there if I could but I’m out of change
ps: after I posted this I had a terrible experience with a condescending doctor. He actually took out a wipe board and explained the difference between “rare” and “common” when talking about ailments, like I was a child who didn’t know what the words meant. My wife sat in on the appointment(I had brought her intentionally to see if he would take me more seriously) She cried all the way home. It was incredibly insulting to our intelligence. So I’m carrying a bit more fire than when I first posted this.
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Simba1992
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I believe everyone has a story worth hearing, few give time to listen to it. I suspect its mainly a time issue rather than an arrogance issue in a Rheumatology Clinic. If someone isn't listening, you don't necessarily have the power to be your own advocate, unless you literally refuse to leave the room!
This I think is a very important point. Especially in the beginning it's quite hard to mobilize strength to be your own advocate. You know so little and you are so scared but as time goes by, since it's not a question of a curable disease, you adjust and you build up new courage and you can find out new things about your situation and illness. In a perfect world you would have the same doctor who would follow you through different phases of your illness, who would really get to know and build up a partner ship.
I'm old enough now to shut up a doctor who is trying to teach me to suck eggs.
I now say " Oh yes it was like that.....but now....." then launch into whatever I want to get across......my GP is not interested but does eventually listen.
One subject not to mention is definitely Dr Google....Red Rag & Bull come to mind!
If you've a strong challenge to advice & have evidence then provide it, that's important if you're challenging any medical professional's advice. No Dr Google, it has to be solid evidence. It shouldn't be necessary if you have a good doctor/patient relationship though. You also need to listen, most reliable information should come from the person providing it.
PS it's not clear if the final paragraph is your experience Simba, is all of the text copied or just the second paragraph?
I do not think it is a question of challenging the medical professionals rather making sure they listen to what you are saying and discuss it with you. You have valuable information about your illness that may not be evident through test results.
The thing with ‘Doctor google’ is that you can not dismiss information gained this way purely because google was the way you accessed it. Surely the method of acquiring information is of secondary importance to the quality, accuracy and relevance of the information? If the doctor disagrees with what you are saying they should do so with reasons - ‘you got it from google’ is NOT a reason.
Self advocacy, unfortunately, is hugely significant IMO. Whatever the reasons (time, arrogance etc) doctors are human and will tend to take the path of least resistance. If you don’t allow them to dismiss your concerns with a shrug, they don’t in my experience.
I’m not claiming to be an expert patient, but I have never really felt dismissed by my current GPs or Rheumatology department. When I first became chronically ill (at the age of 30) I had little experience of dealing with the medical profession (other than a familiarity of it by virtue of my mum being a nurse) and my then GP told me that my jaw pain was caused by me grinding my teeth in my sleep which he suggested was stress / depression related. His advice? ‘Go away and stop worrying young man’. I wouldn’t leave it there nowadays, but I did then.
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That’s a really good post simba: what rawarrior calls ‘eminence over evidence, lol; think we ve all had a bit of that at times. On plus side I had a lovely registrar last time who treated me like educated adult I am ( no really, folks 🤪), explained discussed everything. I came out really positive (god knows it’s a daunting disease at times). It made such a difference.
The trouble is it’s most vulnerable who suffer like my elderly dad who’s generation that think drs are God & question nothing. I’m not being critical but all human, overworked etc and it pays to clarify things at times for your peace of mind without being patronised x
I think change needs to happen at GP level as they are the gate keepers.. If your experience with the GP has been kindly, but of no earthly use ,until you go privately in desperation, you are not starting in a good place, even if seen in the NHS Rheum clinic the following day.
MY GP is great ( been with him for over 30 years and same practice sinch birth ) as is the RA consultant and his nurse. I must be lucky never had any problems but do think it can be sometimes not enough time is allowed for people to ask questions. It is really right about trust and respect being a two way issue.
Medway-lady I think you touched on an important point in that you have been with the same practice since birth....hence the GPs will know you and your family. Few of us have that nowawdays. The personal links are not there, and many of us are treated like 'numbers' to be put through the system and targets achieved. GPs ARE under enormous pressue, but whatever we are doing to our medical students, nursing students etc is not working, we seem to suck the empathy out of them during training. I believe the day of the GP as the gatekeeper is on a countdown, the role worked well in the past, but medicine is too specialised now to 'know' about all medical conditions. I believe my GPs ...plural... let me down badly. Eventually a letter from a (private) physio, made them act. Not good enough, nowhere near good enough, I had been questioning them for months, asking for a referral, scan all no avail. But being new to the practice they did not know me , nor took the time to find out about me.
I think your right this is a village and so the GP's do know everyone and their children etc. So it also helps that they know whom to trust. IE I have a packet of antibiotics on the kitchen shelf at all times for another disease and was advised to use them when needed I quote "you know when your lungs are crakling and coughing up stuff" and they do visit at home still too. I'll be honest at 65 thats only been once and it was then off to hospital Although I suppose we don't abuse them. My heart is really sad to read your post as you say GP's are the first line but if every time you go its a diffferent one how will they know anyone.Our practice is really quite innovative, they bring it physio's, hearing test people, counsellors, ultrasound and do have a patient group too. That helps as people can stay anoumous if they talk to a rep on that group who can talk to the doctor in question. I've heard moans and growns about the odd doctor via the group but to be honest it always seems to be the same few people. As you say they did not take the time to get to know you and that is so bad. My GP has a review of Rhumie patients every year (next month) and uses takes 20 min. appoitments to sit and talk. It is a good idea as its means he can just chat and ask how things are going.
There is nothing remotely offered by my GP practice that measures up to what you have. I was initially told I had tendonitis and migranes, that diagnosis stuck for 3 months, despite a deteriorating systemic condition and stiff joints etc etc etc. I never accpted or believed the diagnosis. I was offered antidepressents on numerous occassions (I'm not , nor wasn't depressed), was also told I had a mortons neuroma (I don't). Then we moved to my bunion needing corrected by surgery (it doesn't bother me and has been with me most of my life), that I was very lucky that it is my left hand that is deteriorating with a subluxating thumb as I'm right handed (she was challenged by my partner on that one, I'm now waiting for surgery). The incorrect diagnosis was written on my pension claim form and a charge for £130 levied. I could go on......
I've made amends with one GP in the practice, spoken with him about recent developments in RA, and feel I'm now being regarded as someone knowledgable, sensible and interested in managing my condition. But we shouldn't need to fight for this. I only see him now, which thankfully is a diminishing need as my condition seems to be brought under control. Rant over !
My first rheumatologist tried to kill me by prescribing daily chemo, refused to listen to my symptoms and pushed my photos away without a glance at my varios rashes. Thank God I knew this was wrong. I complained to my GP and the Malaga lupus association who forwarded my complaint to the head of rheumatology for the whole of Andalucia. I know have a brilliant one who gave me an hour and a half appointment and really listened to me. Wow how different like chalk and cheese!
Good luck with your next appointment and yes try and have a bit of fire. No one knows your body better than you! 💜
Oh my you really had to put up a fight and had the strength to do it. It must have felt good and enpowering afterwords. Sometimes really hard to be a patient😰
Having to do this in a second language was also difficult. I know the 1st rheumatologist is still practising as I was sent a follow up appointment to see him, the association of lupus and autoimmune diseases told me just to ignore it! My new rheumatologist, looked at all my photos and listened to my long list of symptoms and arranged bloods, urine testing, ECG, CAT scan of heart and lungs and a breathing test to be done, so still waiting for a couple of tests to be done. She said I definitely do have lupus where the first consultant said he had no idea what was wrong with me but because I have RA the treatment would be the same!! 2 rheumatologist at either end of the scale. So glad I fought to get a better consultant, one who listens and cares. 💜💜💜
this post irritated me because this gentleman is right. I don't know it works over in the UK, but here in the USA we get to choose our own doctors. I have had my regular doctor for the 12 years we have been in Florida, he's wonderful and both my husband and I go to him and he always asks about the the other. That being said I went to an orthopoedic guy that had great accolades and everybody throwing his name around. When I went, I only got to see his assistant. You don't see the man till surgery. So, I went to another dr, one who had many accolades to his credit as the other but much more pleasant. He sat down with me and my husband and explained thoroughly what he was going to do and what to expect and was open to questions. If you do not have a good relationship or not comfortable with your doctor you are not going to be thoroughly honest with him and you probably wont tell him everything. I would change doctors if someone were condescending and treated me like I had no education
Doctors are no different than other specialists that we turn to for help, some are good and some not so and if we are not getting the help we need we look for someone who we trust will give it to us.
Yes it should be a partnership, and I think more and more doctors believe that too as there's more and more evidence that you get better results when the patients are properly part of the treatment.
Apparently a big problem with RA is lack of compliance. But if patients aren't involved in the decisions about treatments and everything isn't explained fully then it's no surprise to me that they don't stick to the plan.
I've never had a problem at all - apart from one rheumy who was so dreadfully patronising that I refuse to go back to him ever again. And I don't think it needs loads of special knowledge or anything, but just being politely determined and asking questions until you completely understand. Or repeating things back in your own words. "So doctor, does that mean that this treatment will.......?"
(And the patronising rheumy....having started the appointment by telling him I'd been diagnosed 5 years and setting out for him my antibody status, drug progression and findings from latest x-rays, he then proceded to tell me what RA was in a way you'd explain to a child.")
The non compliance point is an interesting one, because how do you measure it? If you aren’t following your doctor’s recommendation it is fairly likely you may not be totally honest with them.
I wonder how many of us have not done exactly what we were ‘supposed’ to at some point in our history, whether through fear of the effects / side effects or for those from countries with self pay, simply because it was too expensive? Whatever the reasons I suspect that non-compliance is actually quite common.
Did read a study on it and it really is quite common. I believe, like HH says that much has to do with a patient doctor relationship that is really not good enough.
The research studies indicate it's 30-40% of people, which to me is amazingly high! Who knows how accurate the studies are, but generally done through questionnaires or electronic methods on an anonymous basis, not with your own doctor, and all seem to end up with a similar figure.
I think it's a big issue. After all if there's research into drug X, and only 70% of the people are using it properly then that research is not accurate at all. Plus some of these drugs cost a lot of money, so the NHS can't afford for us to chuck them in the bin.
Plus, as we know, it's a shit disease so if for whatever reason you are not taking what you've been prescribed that's not going to help you. So if you don't feel able to talk to your doc about it then how will they be able to help you?
Good question, a question that really should be put to the medical professionals.The behavior of patients who make their own decisions concerning prescribed meds is understandable if they feel they cannot trust their docs to listen to them. In my view it is the responsibility of the doc to earn the patients trust. This is in fact part of their training.
There was a programme on the BBC recently called the foreign doctors are coming. It was all about what non-UK trained doctors need to do to qualify to work in the UK. A massive part of it was about the people skills, empathy and understanding needed to work with UK patients, and exactly your point that the doctor needs to earn the a patient's trust. Made it sound as if the doctor:patient relationship in the UK was fantastic. I just wish that the reality was like that!
Yes and if you don’t trust your doctor or feel you can’t talk openly with them but disagree with the treatment regime (and whatever the reasons a patient’s concerns are absolutely valid, particularly given the nature of most drugs for autoimmune conditions) then non-compliance would seem to be the ‘easiest’ option.
Also if you know that you will only be given drug B after you’ve tried drug A, but you don’t want to take drug A for whatever reason, then again non-compliance is an easy option.
Problem being of course that in not taking the prescribed meds you are risking your health further potentially.
I also suspect that in that second scenario (where a doctor themselves wouldn’t prescribe in the order they are forced to by the rules) that the doctors themselves are sometimes aware / complicit with the non-compliance. I may be wrong.
Had a similar experience with my gastro guy last week. Asked the possibility of toxic bowel with methotrexate. He said no possibility. Only my liver could be affected. He opened his laptop and read a list of possibles and said no, no bowel problems listed. I’m going to print out two separate medical site reports that list bowel toxicity as possible side effects. I’m going to highlight the statements, mail it to him, and simply say “I knew I saw it somewhere.”
I left my former primary doc because she was getting snippy with me and all she wanted me to do was to take antidepressants. She didn’t believe my pain. When I complained about my knee pain, she laid me back and shoved my knee back really hard I guess she thought it was out of joint. Did not tell me what she was doing. I haven’t been able to bend my knee since. My oncologist referred me to a new primary who is lovely and she referred me to my rheumy who is also lovely and diagnosed the RA.
We all have to advocate for ourselves. My husband came with me to the last Rheumy appointment and was amazed... he said afterwards he’s very good at talking but he can’t listen can he!
I have to be on the ball as my GP services are a joke. When I was first diagnosed I had a fabulous GP and would get me an appointment if I needed it. On bios I did need him a few times... not dog related I might add. Infected insect bites and uti’s, but this lot are an absolute shower. You can never get an appointment unless you book being ill a month in advance and I’m afraid I wouldn’t trust them diagnosing my worst enemy. They play at being gods and I hate that. It should be a partnership. Read up on all you can and ask questions. Don’t let them belittle you.
Hi Simba1992, yes to a point I agree with you, but also I do find a lot of Doctors hands are tied as to sending one on for further assessment, it is then I have the trouble, the higher the ladder the dumber they tend to think one is. Recently I was sent to see a Consultant who was the "B" all and end all of sorting out my problems, I have Arthritis Osteoarthritis and Fibromyalgia. Three different NHS personnel said I needed to see this Consultant, firstly my G.P. then my physiotherapist as well as Para Medic. All had said the Consultant would sort out my problems and recommend what changes to medication, also check out what further help I could receive with my dissatisfactory pain relief. I received my appointment about six weeks, all built up that I would receive help to cope easier, I wrote down as requested all the areas that I thought needed consideration? The day arrive notes and prescriptions in hand, introduction over I sat down said I have notes and prescription, I don't need those now, sat there for what seemed ages, all of a sudden he said don't you have anything to ask me, I thought for a moment and said I thought it was you asking me what the problems were, cut a long story short he said here are some web sites you might look at, as if to say I had some sort of mental problem, never felt so crushed in all my life, a total waste of his time and mine. Hermes
So sorry to hear of your frustrating experience. Sounds very much like the one I had at the beginning of my RA. Had done a lot of work to find a knowledgeable rheumatologiste that could answer my questions and give me information I badly needed. Payed extra and waited for 3 months, made notes to structure our meeting. This great Prof. was not interested in my questions or notes, told me I had RA and gave me the standard treatment protocol. He was rude and really had no time for a patient with questions. I really felt quite crushed and helpless left on my own with the terrible scary diagnosis and so little knowledge.
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Lectins could be the main cause for RA pain
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In praise of being a good patient, not a great one 
Beacon of Light in a dark tunnel!
