I wish doctors would explain things fully to us instead of only giving us half the information
They will say oh you got this but will not go in to detail
It's about time they stopped pussy footing around and realised that we are not fools , so give us the imformation. Tell us
That's my rant
Have a lovely weekend my fellow sufferers 😘😘
Depends what information you want. Sometimes too much information either confuses or worries a patient. If you want to know answers about specific things take a written list and take notes of the answers. Or even a dictaphone so you can record it. Having said that, I know from personal experience, patients don't listen to most of what you tell them anyway and get even more confused.😜
I don't think the problem is with patients not listening but more:
a) the doctor doesn't explain things at a level the lay patient can understand and often doesn't even realise they have a 'superior attitude' which so often leads to 'white coat syndrome'.
b) the patient may be already 'foggy headed' either from their disease or their meds
I agree it's a good idea to write things down to ask your GP/consultant but if their answers aren't clear you need to ask them to explain in more detail or in a way to clarify meaning.
There's always the good old Internet. I don't know where I'd be without it. I've been tempted to tell various doctors that the Internet was far more useful than them! ToD xx
Good idea about specifics, taking notes and possibly a recording.
I agree with dobsey's post because from my own experience a patient will definitely get confused if a healthcare professional talks to them in too much medical speak. Better to use simple words spoken clearly and perhaps to ask them if they have understood what you've just said to them ..... Always put yourself in the other person's shoes .....
Nope. DCP😃
What's a DCP
Just thought what you said you were a doc LOL sorry
What's a DCP😊
Sorry if I gave that impression. DCP stands for dental care professional. So I do work with patients in dentistry, although I am not a dentist, I'm a dental technician. so part of the dental team
Sometimes I find that when I am in Surgery we forget to ask those questions we need to know. Sometimes there are papers with the medications or if we have to I go onto the NHS CHOICES pages and check there as explanations of our conditions are very fully explained there as are the drugs we push down our throat. So you can look in there. I would not try and diagnose any conditions I have.
I use that site when I need to refer for my voluntary work
BOB
I think that maybe you should ask for things to be explained as and when you need them to be. Then you may not feel so angry afterwards. Not all doctors are horrible people.....in fact most of them are great considering the pressure they are under. Basically if you don't understand or want to know more then speak up.
Educate yourself as much as you can about your illness......after all it is YOUR illness. Take control. Don't let it beat you or rule your life. Doctors can only do so much.
I take someone with me as inevitably I either A misunderstand B forget what I wanted to talk about or C forget what they said!!!
Sorry.....you came across as angry.....or frustrated maybe.
Just think people expect too much of doctors.
If you want to know everything then ask them to tell you...just don't be surprised if they can't.....or you can't deal with what you are told.
No one has ever explained RA to me , and now Fibromyalgia, again nothing
You are left to guess or find out for yourself if the symptoms you have are from that or is it something else
Fibro fog. My guys don't even think it exists I reckon , they don't want to discuss it
I learn most things from you guys or reading up on it
You see it all the time on here people wanting to know about their illness
Just saying 😁
I'm with you completely on this one, I have been very shocked at how I have been treated - GPs so relaxed about waiting weeks for results while I am in agony, Rheum appt (only 1) for an hour which was 55 mins of exams and questions and 5 mins of 'looks like PsA - il book you in with the nurse to start MTX' ... Not been given blood results no xray results no idea when I see a Dr again.... Saw the specialist nurse 3 weeks ago to start mtx and thought I would get some time to ask questions, nope waited 45 mins for a 10 min very rushed appt - still no results or xray reports,
I am not bashing doctors or specialist nurses - I am a specialist nurse. But these illnesses are massively life altering, career ending, relationship damaging, and fecking painful. Is it too much to ask that they sit down and explain what's happening with YOU? It isnt good enough just to chuck a leaflet at you when we all have different joints affected, different levels of damage, different levels of impairment... I know they can't predict the future but I need answers for occ health, I want to have some control back and knowing what's happening to my body would be a start.
I have yet to have a really intelligent conversation with an NHS consultant, and yet when I lived in another country I regularly had very involved discussions about my health and illness with doctors who treated me as an equal partner in my care. I don't believe there is such a thing as too much information - as long as the doctor takes the time to make sure it is explained in a way that you can understand it. Of course that is the big problem with the NHS - no time to really discuss health issues with patients.
I agree. I get the impression from doctors that they assume when they say what you are diagnosed with you know exactly what they are talking about. They forget that you havent been trained in their profession which leaves us to check the internet and get some conflicting info which doesnt help at all. Maybe they dont have the time to tell us everything but they could point us in the right direction for correct info. Perhaps they are worried we will learn how to treat ourselves and will no longer need them! My old GP used to print stuff off for me to read but unfortunately she is no longer in this area. Gentle hugs Joolz.x
Sorry Dobsey, I really do understand what you're saying. When i was told i have RA it was a massive shock and i was knocked sideways. I was seen by a really unsympathetic consultant, then when i started to have Fibromyalgia symptoms he didn't want to know. That was 2 yrs ago. If it hadn't of been for my GP i would have been totally lost.
I eventually managed to change consultant and was seen by her registrar last June, who told me that it was going to be a difficult journey as Fibro and RA overlap so much it's hard to know what's what. I had to educate myself and really get to know my body in a whole new way . Everybody is so different when it comes to these illnesses. My GP has helped so much.
Then the hospital 'lost' me on their lists, I haven't been seen since last June! With the help of GP I have now got app with consultant on Tuesday. I'm going in armed with all the info I've collected over the last year........maybe i know more than them!!
I think there is a difference in attitude between consultants and GP's and maybe that's what I was trying to say last night....after a very long day!
Sorry if my comments came across as arrogant in any way.
Educating yourself on your condition is the biggest help regarding what you have, especially with previously unknown words, though I admit some I had a smattering of some through my last position before moving abroad. Early into diagnosis I tried to navigate my way round new medical words & did struggle a bit so when I had my first consultation 3 months after diagnosis I asked for & was given lots informative & reliable sites to go to, actually already prepared for me though I got the impression I wasn't the first! I had limited information about RD but had a need to know what was going on which of course I found using the very words & terms my Consultant used as I take notes. If I came across something I couldn't work out (many sites were in Spanish) I searched the internet until I found out. Anything that came up in consultations that I was unfamiliar with I asked, noted & looked up when I got home if I still didn't fully get the gist.
Some Specialists & doctors don't seem to have an inbuilt detector to decide who should or shouldn't be told the nitty gritty or who is able to come to terms with knowing/understanding the extent of their disease/illness, so if you want to know ask for it to be explained, not in medical speak necessarily, in layman's terms. How are you to help yourself if you don't know what you're tackling? Speaking generally of course!
Fortunately for me there were no obvious time constraints at appointments in the years following diagnosis which helped greatly I've little doubt. In just over 6 years since diagnosis it's stood me in good stead through 4 Rheumys & countless Registrars. I'm convinced also being diagnosed in a second language spurred me on, I had to understand. I rarely needed to see my GP before returning to the UK so couldn't ask her either! Rheumy appointments are such I do now but I still use the sites & still learning. 
I really agree with those who say that doctors should assume we want to know unless we make it clear that we don't. I don't like reading what consultants have said about my appointments in their letters later wondering eh where did that spring from?
As they usually write to my GP but don't copy me in or write directly to me - I think it's probably the GP's job to try and explain things to us in lay man's terms. If they don't have time then they should suggest we make a double appointment at a later date for this purpose. Otherwise how can we not be drawn to researching things on the Internet?
Saying "something has come up that confirms that you have...." Is not enough for me personally. I want to be told "this has come up in your blood and spinal fluid - this shows ...x ... If you want to understand this better there is a good link I used myself here" (written down of printed off for me). Interested until found not to be!
That way I would go off and research myself using a reputable source and probably not doctor-bother again for far longer than if I'm greeted with a dismissive shrug and made to feel like it's beyond my ken!
If I'm treated like an intelligent person then I feel part of my healthcare, diagnosis and treatment rather than a victim of it. It's all about control and self management. Those who like to be fully informed are in the majority I think - especially where it comes to chronic illnesses.
My feelings are that there are some people that would rather not know much about their illness, others that wouldn't understand even if told in a simple way and finally those that want to know everything and would understand even if doctors spoke in medical terms. One of the first questions a doctor should ask having given their diagnosis is "Do you want to know all about this illness?" OK they might not have time to go into it in depth, but they could recommend websites to look things up thereby avoiding the non reliable websites. A doctor should be capable of working out whether someone would understand what they were told.
I go to see a renal specialist and he is brilliant tells me everything. The first time I saw him he actually told me that I had a lot of knowledge. I have a scientific background (not medical) and so can think the way they do. My husband was a Research Chemist and one of my friends was a Research Chemist at what was ICI pharmaceutical division so between us we probably know more about drugs than the doctors!
I had Cushing's Syndrome caused by a tumour on my adrenal gland and had it not been for this renal man (not his field) and the internet I am pretty sure I would never have found out what was wrong as the endocrine specialists kept saying it wasn't that. Eventually I had my adrenal gland removed after 2 years of fighting with them and the histology showed that both the renal man and I were correct. So, in this case if I hadn't been told everything by the renal man I wouldn't have been sorted out.
I agree with you to an extent. When I was diagnosed it wasn't a great shock as my GP had prepared me for RA.
My Consultant was very helpful and did all the relevant checks etc. He informed me that I would need to take medication for the rest of my life but did not give me any information or leaflets about PsA. Maybe this was not to overload me at the time or worry me but I find that it would have been useful to do so.
However, I was given a leaflet about the medications that I would be taking.
I do find that the Consultants appear rushed and the Rheumy Nurses more approachable. They freely give out more information and take their time to answer my questions.
Overall I have only had one frustrating experience with a different consultant in a year.
More Hospital visits
More information I get....
More questions....
No more nice guy?
Information evening in Harrow 25th March
