Due to my ongoing saga of trying to access decent rheumatological care and following promising recommendations received from some of you, I am now considering booking a private appointment and then asking to be transferred to said consultant's NHS list. If this works, it will inevitably involve being attached to a healthcare trust that is out-of-area and not local to me.
Before going ahead with this I'm trying to understand how this might work from a practical point of view. For instance:
What happens if referral to another 'ology' is required...is this done locally via GP referral following advice from the 'remote' consultant, or is this accessed from and within the remote healthcare trust?
What happens when blood tests and other out-patient investigations are required (I'm thinking here that a remote consultant can't simply order these things from another healthcare trust)?
If tests and investigations are done locally, how are these results made available to a consultant who is not attached to the healthcare trust where they were carried out?
What happens if hospitalisation is required? Are you admitted at the remote location so that care is given by the rheumatologist who knows you? Or are you admitted to a local hospital who, in theory, then liase with your usual (but remote) consultant? (I can see that there might be a whole host of issues with this).
Anything else I need to consider before going ahead with this?
I suspect that some here have gone down this route so would be interested to hear if there are any pitfalls I need to be aware of? And, more importantly, have you managed to make this kind of arrangment work?
An added complication is that my GP is not to good at...well...very much at all, so probably won't be up to coordinating and pulling all this together for me. So, if I go ahead with this, I'll have to be in the driving seat.
Any comments, tips or advice would be very welcome.
Thanks all 👍
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Foggyme
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Hi there, I only last week had a private consultation with a Consultant who also works at my main hospital. I went private solely because I was being gaslighted by his dept, and final straw was when GP referral back for worrying symptoms was declined.
I was upfront about why I wanted to see him, what was happening, and also said any diagnostics could they be arranged on NHS, he said yes, and is arranging for a Endoscopy for me. Now whether this actually happens remains to be seen.
If you are able to have tests done with any private consultant, great, but be sure to ask for costs upfront.
Thanks for this LupusKaren. How dreadful that the only way you can get action is to book a private appointment with the consultant from a team you're already (supposedly) being seen by.
Hope the endoscopy is forthcoming! Don't know if you've had one before but they're not to bad at all. Just a little disconcerting when the tube initially goes down but not so bad after that (I usually imagine I'm on a white sandy tropical beach with a large glass of something that I can no longer drink...and then it's over before you know it😉.
Good point about getting clarity about the costs of private tests. I think in my case I can afford the initial private consultation but then funding what can be very expensive tests may (will) be beyond me (or rather, my bank).
So...I think the best way forward for me will be to arrange the initial consultation...and then hope that I can transfer to the NHS for ongoing treatment and any subsequent investigations that may be needed.
Isn't it just dreadful the hoops we have to scramble through to get listened to and treated.
And so sorry about the gaslighting. Has been happening to me to, so I know just how awful that feels. It's not to strong a point to make when I say doctors (or at least some of them) are making us much more unwell and distraught than our actual medical conditions.
My healthcare journey started out through private healthcare supplied via my employment package. But as my condition became more involved I would have had to contribute quite large sums, so I was offered referral to the NHS. I selected to be referred to a centre of excellence in London which was not my local health trust.
When I have had emergency situations from home I am taken to a local hospital, a different trust. And one without the same level of expertise. Over time I have learnt that it's often beneficial or necessary to contact the specialist consultants team whilst in the local hospital.
You can ask the local hospital to do this but they often don't. Unknowing exuberant young doctors can often mess up treatment routines. The specialist centres teams sometimes are a bit reluctant to offer assistance if the local hospital does not show willingness to accept it. But certainly within London i have often managed to get a visit from somebody who has at least been in telephone contact with the specialists.
When I need regular bloods it is usually via a request from the specialist team to my gp and bloods are normally taken locally.
If I have a planned consultation with the specialist team they arrange bloods to be taken and these results are reported to the GP via clinic notes.
Away from emergencies, I usually opt for any extra investigations to be carried out within the same centre of excellence trust. I find that this helps the specialist team to have easier access to information of importance.
I am not sure how well this type of arrangement might work over a larger geographical area.
Thanks for this overnighthearingloss. Very useful indeed.
Yes...the distances will be greater but I think, based on what you say, I'll be able to make this approach work...even if it means doing extra travelling to get tests and investigations done at the most 'appropriate' locations. And then be prepared to chase results to make sure that they reach the right people 😀.
So hmmm...think I'll need a jolly big record keeping book or I'll just lose track of everything and never know quite where (or who) I am. So, no changes there! 🤷♀️🤦♀️.
It's a shame, that once again, everything seems to rest on how good (or not) doctors are at communicating with each other and accepting advice from those who are more expert in a particular area.
At least now I have a plot and am beginning to feel that I can move in a better direction, so thank you for your input to that. much appreciated 👏👏
I dont think your gp can prevent you opting for specialist care, but take note that specialist centres often have extremely long patient lists and there is a constant need for them to discharge patients to keep their list manageable. They may be more inclined to judge local patients more favourably than distant ones.
With constant changes to healthcare policy, if you were to be discharged back to your gp, it may be advisable for you to get a physical copy of your patient notes from the hospital. There is a charge for this. But it would be a potential safeguard and something to refer back to.
I don’t know the system over there but I would take overnighthesringloss’ words to heart. I have heard on these forums of several people discharged from the lupus/APS clinics. If they are stretched, they likely are finding ways to limit patient access. It sounds like they may be prioritizing patients according to severity. That could backfire on you. If they do not feel your symptoms would respond to additional medication, they could discharge you. You are similar to TT, I think, very affected but with no great options. I am holding to my original stance that you should wait to see what the neurologist recommends. They are the specialists in neuropathy.
Agree with what you say that clinics apparently clearing out people. Shocking.
But the real issue here is that people who need treatment (like myself, Hidden , and countless others) are not able to get it, because many doctors are so poorly trained in the multiple complexities of AI disease. So we 'atypicals' are the folks most likely to get the chop when clinics are full to overflowing.
It's not that they've made a careful and considered assessment of our medical conditions and feel that our symptoms would not respond to additional medication. They simply don't acknowledge that we have symptoms. Or that these are indeed autoimmune in origin (in my case, even through my neurologist, endocrinologist and opthomologist have all stated their belief that this is so).
Again KayHimm, you’re basing your assumptions on the concept that rheumatologists in the UK treat all their patients appropriately. We shouldn’t have to be crippled (neurologically or otherwise - though many of us are) in order to be taken seriously and treated. Making the assumption that only those who are in the 'worst' condition should benefit from treatment is both reductive and discriminatory...and depressingly common over here. We all deserve to be well. We all deserve to be treated.
And another issue is that no matter what my neurologist thinks or finds, the rheumatologist will be under no obligation to follow their recommendations. And as many don't, this can be devastating for the patient’s concerned (since in AI disease, the rheumatologist is the primary care giver). And yes, they should communicate and coordinate treatment - but only the best do that. And the best are few and far between.
Sorry if this sounds like a rant (it probably is) but goodness, I've read too much today about people who can't get appropriate treatment...and I feel a bit grouchy on their behalf. Not to mention my own 😉😀.
It isn’t a rant. You have every reason to be furious. I do think it must be harder and harder to get high level care where you are. I am just trying to strategize to figure out the best way to get good care. From what others have said, the rheumatologists have to stick to the lupus treatment guidelines. Could you take those guidelines with you and discuss if there are options? Are you sure the neurologist would not be helpful with advocating new medication? I am just worried the rheumatologists may keep saying the same thing. The neurologist may be willing to think out of the box. It is all hard. I know you must feel desperate at this point.
To be honest KayHimm...it's getting harder and harder to get care at any level. And not just for us AI people. Applies across the board and impacts many.
Guidelines - yes, great. But the trouble with guidelines is that they are just that. Guidelines. And doctors are not required to follow them (though of course, it’s best practice to do so). I suspect that many won't even have read them. Sadly.
And it's not that they have to stick to the guidelines. It's more a case of how those guidelines are used to...well...guide...treatment. The best rheumys use the guidelines as a guide to deliver the most appropriate and effective treatment for a particular individual...even if that means deviating from the guidelines to benefit an individual patient. The worst ones use them to 'guide' treatment but only in the sense of limiting and restricting treatment (they blindly stick to the guidelines even if this of no benefit and therefore detrimental to a particular individual).
And whilst there are guidelines for the treatment of Lupus, there are none for UCTD (my disgnosis). Any many of us with UCTD could potentially be suffering from undiagnosed Lupus (it's apparently quite common for two different rheumatologists to each diagnose the same patient with different conditions (UCTD or Lupus). So the concept of diagnosis and sliding neatly into a set of given guidelines is tricky indeed. And anyone with an undifferentiated connective disease runs the risk of remaining in a guideline free untreated wilderness. That’s me - Lupie incomplete. Atypical. Dumped.
And this is one of the problems for people like me. Although UCTD should theoretically be treated according to the same treatment pathways (because it's an AI disease), in reality not having a Lupus diagnosis severely restricts treatment options...and we end up getting tossed out of clinics (the walking not-deformed undeserving).
And I've gone off on one again and have completely forgotten what I'm replying to 🤣🤣🤣🤣🤣🤣🤣🤣.
So...hmmm...yes...try and include the neurologist. Got it. Tick.
Use the guidelines...oh yes, definitely. But unfortunately there aren't any for the UCTD collective. When there are. Yes. Use them to work for me. Tick.
Strategise to help get good care...appreciate that because grief...most days it's like trying to nail jelly to the wall! Or like knitting with fog. 😢😭😭😂😂😂😢
I hear you. You are in a very tough spot. Hoping you find someone to see the total picture and try to get you functioning. That is important too. Really wishing you get a break soon.
Sorry to read your having to be very proactive to get the care you need!. As you say we shouldn't have to jump thru such hoops to get it!. A few years ago now I had to go out of area to get Rheumy input as my local hospital then didn't have one. It worked well as any tests I had I had my local hospital and I made sure the results were sent to my Consultant and it worked very well. I also made sure any copies of letters were sent to the consultant which you can do too to keep both medics in the loop. If another ' ology referral is needed then the Consuktant can do it and it would be quicker , consultant to Consuktant. I have learnt that this is unusual as it's usually the GP that does them but I always had the out of area Consuktant doing it when required!.
It does require you to be more hands on and this is difficult when we feel so poorly but worth it if it improves your overall care!. I hope my experience is helpful and do ask me anything about it. I will just say this was all on the NHS. X
Thanks for this misty14 Good to know that it's possible to get consultant to consultant referrals.
It's looking like having an out of area consultant and having to be proactive about chasing and collating information and organising tests will be far far easier then having the stress and lack of treatment associated with a 'failing' (for want of a worse word) rheumatologist.
If you made it work for you, then this gives me the confidence that I can make it work for me too 😉😀
Thank you for the 'ask' offer...will take you up on that if I hit any stumbling blocks (or should I say stumbling bumbling docs). x
Although I mentioned you being able to opt for specialist care via your gp, this comes after a doctor already diagnosing a condition. Otherwise we could all pick our disease of choice and opt to see whatever specialist.
Obviously that wouldn't work. So firstly you need a consultant to agree that you do in fact qualify for a particular label.
There is no absolute guarantee that seeing a specialist consultant privately will result in such a diagnosis. But it will at least allow you to see a specialist in the field for their consideration.
Yes, get what you mean. Already have a diagnosis of UCTD but current rheumy is gaslighting and being quite hostile (for instance, despite having had consults with neurology, endocrinology and opthomology...who all say that my symptoms are related to systemic AI activity - he says that these symptoms are nothing to do with AI disease - because he's only looking for deformed joints!).
So...looking for a better rheumy and was just wondering how to manage when and if they want to refer to other 'oligies' - as they oft times do (can continue with current neurology and opthomology locally).
So...not looking for a new diagnosis, just looking for better management of the one I've got. And an appropriate treatment plan that might enable me to come off steroids.
If I could pick, my choice would be no disease...and certainly no specialist (private or otherwise) 😂😂🤣🤣🤣🤣.
And so, I expect, say all of us 😐😀😀
Okay I’m coming a bit late to this after a day in transit yesterday and a day trying to get my new glasses sorted out today.
I know that we have a great deal in common Foggy but I’m in Scotland and so would be most unlikely to endear myself to anyone at all on my healthcare team if I followed this idea of long distance consultations through - sorely tempted as I’ve been over the past 8 years.
When I was first referred to Rheumatology by my old island GP 8 years ago it was for likely RA. I knew absolutely nothing about this but spoke to an old London friend on the phone as I had been told there would be a four month wait. This went against the early diagnosis and treatment of RA guidelines so everyone kept warning me - including my old friend.
So she phoned up her brother in law - a consultant rheum - who told her to urge me to come to London and see one of his former colleagues privately ASAP before erosive damage occurred.
I’d already tried Sulfasalazine by then as my GP was sufficiently alarmed by my very frank synovitis and high ESR and CRP and weak positive RF. This gave me anaphylaxis and a photolight sensitive rash. I spoke to him about the private v nhs thing and he said I’d never be able to qualify for an NHS rheum list in England even if I wanted to go on one. He said by law he’d have to tie things together himself for me but he couldn’t recommend this even within Scotland.
His view was that RA was well served in Scotland (I didn’t know about Lupus or Sjögren’s then) and it would only be worth considering if it meant I could jump the queue back up in island home.
He went on to explain that if I turned out to have additional autoimmunity or other it would become increasingly impossible for him or me to get a decent NHS team as I’d be increasingly outside the loop and the Scottish NHS would dispense with me quicker if they possibly could.
So I’d be stuck travelling 900 miles each way and paying to see a consultant in London. Well obviously put like this it doesn’t sound very tenable does it?!
Since relocating twice and being rediagnosed my fortunes have remained erratic. My new GPs are a patchy lot and the main one I like to see is only very part time and she is terribly popular. But so far she does me as proud as she can and, despite some misgivings, I feel that my old island GP, rheum and neuro have been well replaced by the latest batch.
The main difference is that I’ve been rediagnosed with Sjögren’s which fares much worse than RA on all fronts and that I’ve acquired rare disease status by default.
Sometimes I’ve asked here whether I should just pay to see the excellent Dr P in Swindon once or twice a year as Sjögren’s is her specialism. But - as you yourself say - I’m already living between 2 neighbouring Scottish health boards and under too many specialists. To be honest, I doubt Dr P could do much to change or improve my fate anyway and the English drug protocol is quite different to the Scottish so she and I and my other specialists would be on the back foot often - as I’ve learned from experience of seeing her once. The joining of the dots really needs one hospital with one good consultant leading.
There is one lovely Sjögren’s specialist only abs she is in Glasgow. But she only sees NHS patients so I’d have to relocate to the other side of Scotland or convince my NHS board of the need to be seen out of area. I am keeping these options up my sleeve for a day where despair becomes too rank. But I already asked her as a guest speaker at a BSSA meeting what she would do with a patient like me and she said she’d hope I could try IViG and would refer me to one of two neurolgists. One would probably put me forward for it but the other certainly wouldn’t. She told me that officially they can’t turn us down on grounds of cost. But the reality means they sadly they (health board panels) find other ways to get out of using the big gun treatments.
She didn’t specify but this really was enough for me to know that there’s little leverage. It was this rheum in Glasgow who also explained to us that she increasingly struggles to get her patients accepted for lip biopsies now that the Scottish dental hospitals are so overwhelmed too so increasingly her referrals are turned down. Desperate times.
At least my neuro and CTD clinic have kept me on their lists for now so I’m seen 3-6 monthly at each. I guess if things change or worsen then this will be the time to make the big decisions - including further possible relocation - if I feel it, like you do, that the situation warrants this.
Meanwhile my advice would be to consider relocating yourself if only to get a better GP practice. Whatever you decide to do you are going to need your GP to be a good ‘un and frankly yours sounds rubbish! This is where I’d start as it sounds like a more realistic option to begin with perhaps? Xx
I don't think a London private consult would necessarily be the most useful option for someone in Scotland, Wales, or Nothern Ireland as they all operate on their own. I hadn't thought of that. But there surely are centres of excellence to refer to more locally. E.g. Glasgow or similar. If the same principle applies as in England you should be able to see a scottish consultant privately, hopefully for a diagnosis, and then with that diagnosis to request further treatment within the Scottish NHS.
Remember that despite the land mass - Scotland has a population of marginally less than the whole of London ONH. So we have no centre of excellence for rheumatic diseases here and rare rheumatic diseases each have only 1 or 2 experts at most. Otherwise we have a great scarcity of even general rheumatologists here. And next to none do private/ NHS practice. Very little choice indeed here.
Agree about needing to change GP's. My current surgery is the only one in my catchment area and although catchment areas are supposed to be a thing of the past, they’re not. I've tried five other surgeries and none of them are taking on 'out of catchment' patients. So I'm stumped on that one.
As for finding a rheumy...stuck between a rock and a hard place on that. First rheumy is dreadful (gaslighting, hostile, rude), from a health trust listed as failing, with a rheumy department that has appalling online reviews...plus they all support and protect each other, so trying to get a new rheumy from that team is not an appealing prospect, since I'm likely to fare no better than before.
Just new (second rheumy) inspires no confidence whatsoever. How could I entrust my healthcare to a consultant rheumatologist who stated categorically that Azathioprine (one of current meds) is not an immunosuppressant (plus lots of other issues too, not least - he reviewed my original rheumatologist - not me. Wouldn't even look at medical history, disgnosis, consider possibility of hypersensitive to AZA (if,you don't like it stop taking it). And was quite unpleasant too (you'll like this, despite neurologist confirming SNF with autonomic dysfunction, he uttered the 'functional' word). So, rock and a hard place again.
So really just exploring other possibilities. And yes, I agree with you, being registered with another consultant in an out-of-area healthcare trust is far from ideal. But help, I'm running out of options...🤷♀️
So thinking and pondering the best course of action...
Any possibility at all of relocating Foggy? Otherwise I’m all out of ideas. Our healthboard (or the one my nearby hospital is in) is in deep financial bog too. Hence me still being fobbed - or fob attempted at any rate but they soon learn with me that I won’t be easily fobbed. It’s always the fobbing that sends me off the rails more than the honest reality.
My CTD dr is more of an honest reality man at least. X
Relocation probably quite difficult Twitchy..grandchildren, family etc. And you relocate...and then, potentially, the doctor does too...so back to square one again 🤔.
I now have a plan forming...keep everything crossed for me and I'll let you know when I have anything to let you know. If you know what I mean 😉😀😀
Delighted your CTD doc is an honest reality man...if you weren't so far away I'd be tempted to borrow him 🙄😀😀
Yeah it’s true and I’m not at the grandchildren stage myself yet - still at the not knowing where our sons will end up living - although for first time all 3 have partners so it’s getting a bit more promising!
I honestly would relocate for a good medical team though if it was possible.
Exciting re your mysterious plan 🤞🏽🤞🏽🤞🏽. My honest reality chap plays everything down a little so can make me feel a little like the imposter of the syndrome of imposters. I think they only bother with me in case I suddenly sprout Scleroderma (bloods point there a bit) or even RA again. X
I think it will be a while as eldest (26) has only just hooked up via tinder with a bonnie lass who’s dead posh. He’s a swarthy Scottish red bearded hipster with Aspergers - which manifests as OCD and refusing to eat veggies. He may hide it behind a good job and a brain box mind but not sure it is sustainable when she learns about his foibles.
The youngest son of 21 is loved up for first time with an equally arty and beautiful young man.
Which really only leaves middle son of 23 who’s gf is a nurse and broody as anything. They have been sweethearts since school. But he’s very adamant that he wants to wait until he’s got a better job than the present dead end graduate one. Xx
Ah ha...but we all have our unique and special foibles, male couples have babies nowadays (yay)...and everything comes to those who wait (jobs and babies both).
Sweethearts since school sounds heartwarmingly sweet ❤️❤️.
So...it'll most likely happen when you least expect it 💡🧸🧸😉😀😀.
Get saving💰💶💸🏦 🤑🤑😀😀
P.s. no idea what tinder is or how it works 🤷♀️. Perhaps best not to tell me 🤔🤫🤭😮😮🥴🥴xx
Ha best you don’t know about tinder Foggy. Better I didn’t know either but my oldest son is very matter of fact about this kind of thing. I haven’t met her yet but they borrowed our little home for the weekend while we were up north and we returned yesterday to find our home immaculate and a beautiful card in her writing thanking us with some lovely edibles. And some fascinating stones collected during long beach walks.
Of course the edibles are totally inappropriate for my fatty liver and packed with dairy and gluten so I’m trying to eat them all today in anticipation of my Valentine’s Day gastroscopy tomorrow. Who says romance is dead as we age disgracefully?! X
It does sound bleak in some ways in the UK. We are hearing about exodus of EU doctors from the UK prior to Brexit — maybe it is not as bad as being portrayed — but you all are confirming a pretty dark picture. I would consider what TT and overnighthearingloss have said and make sure requesting another rheumatologist would not be counter-productive. Was your second rheumatologist known for something in particular?
Yes...he is known, by me, for being the first consultant rheumatologist - hopefully ever - to state, categorically, that Azathioprine (my current medication) is not an immunosuppressant drug. Go figure 🤷♀️🤦♀️
Counter productive only applies if you have a rheumy who is - even in the least bit - productive.
Do you think he was maybe making a finer point about the drug? Could he have been saying that at the level used by rheumatologists, he would call it immune-regulatory instead of immunosuppressant? I know you are upset, but is it really helpful to conclude a doctor is an idiot on that basis when you haven’t given him a chance to clarify. It is literally impossible that a rheumatologist anywhere would not know what a common rheumatologic drug is. I feel for you, honestly, but I also hear that you are not helping yourself in certain ways.
KayHimm. No, I don't think so. There was much more about that consultation that was inappropriate and distressing (and I don't distress easily). I really don't want to have to explain those to you so that you a) believe my reaction is appropriate and b) accept that I have very good reason not to want to see this consultant again.
I'm an ex-nursing professional and I well understand what is appropriate behaviour in the area of medical consultation...and what is not. And I'm well able to understand what is said to me...and what's not.
As to me not giving him a chance to clarify himself...within context, his comment was made when I asked if it was possible to try an alternative immunosuppressant because I had a history of adverse drug reactions (some of them severe) and believed (with good evidence) that I might be hypersensitive to the Azathioprine. His response was to state that Azathioprine is not an immunosuppressant drug. Followed by advice to just stop taking it if I didn't like it. Believe me, there was no finer point here...and if you had been there, as I was, you would know that too.
Within the context of the rest of the consultation (which I don't want to discuss right now) this was a 'splitting-hairs put down' comment (since we all know, presumably him included, that Azathioprine is indeed within the drug classifation: immunosuppressant).
And, incidentally, my mild mannered, astute and well-balanced husband was equally upset by that consultation. In thirty five years or marriage I've only ever seen him lose his temper once - and three days later he still wanted to rage and shout - were there anyone to direct it at.
Sorry if this sounds blunt but I'm running out of diplomacy - and as one who has been gaslighted for many years, having to justify and defend myself feels a tad uncomfortable - especially in a place that I come to for support (though I'm sure that's not what you intended).
I'm really not adverse to hearing that I'm not helping myself...but in this instance, sorry, but I don't think that's the case.
If you had been a fly on the wall you'd most certainly understand that 😐😉
You have every right to find a doctor you trust and can establish a better relationship with. I do think your conclusion that this rheumatologist is incompetent because of his statement about azathioprine not being an immunosuppressant is inaccurate. As I suggested in an earlier post and echoing yet another article, the mechanism of action of these drugs is complicated and controversial. I would like to recommend that you and others here read — mainly so that you can maintain some confidence that your doctors are speaking out of some scientific basis — to read « An Approach to the use of Immunosuppressive drugs in no malignant diseases » in J. Allergy Clin. Immunol. Not only does the article describe how the immuno-suppressive versus anti-inflammatory properties of the drug is unclear but describes the difficulty doctors face when trying to relieve suffering but not causing more harm. The U.K. medical system seems to be struggling right now. Rheumatologists are becoming a scarce commodity throughout the world. Some are kinder and smarter than others. But most are trying to do the best to help their patients.
KayHimm. Sorry but you have completely missed the point here.
This has nothing to do with the various actions of immunosuppressant drugs and everything to do with the way many patients in the UK, particularly those with complex autoimmune conditions, are gaslighted by their medics.
Because you have a very different medical system in the USA it's probably quite difficult for you to imagine or understand why or how this happens. But it does. To many people. As you will know from reading posts in this forum.
And whilst we all like to think, and should be able to think, that medics always have the welfare of their patients at heart, where gaslighting occurs, this is clearly not the case. (There is evidence to support the fact medical gaslighting does exist).
I did not, and do not, suggest that this medic was an idiot or incompetent. They are your words. Not mine.
What I do say is that gaslighting did occur during this consultation. And that's much worse than idiocy or incompetentcy, since medics use their positions of power to belittle, undermine, diminish and dismiss: the outcome, at best, is that patients fail to receive appropriate treatment and care. At worst, patients are left distressed and sometimes damaged by this sort of behaviour on the part of (some) of the medical profession. I suggest you look up Medical PTSD if you would like to understand this further.
I think it's probably much harder for medics to get away with this kind of behaviour in the USA medical system, so perhaps this is why you seem to be unable to grasp what I have been saying.
As to my statements being inaccurate..well...you were not there, do not know the whole story, and so can't possible make informed comments about this.
I know you're trying to help. But you’re really not.
I'd would therefore appreciate if we could drop this topic now.
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How do you manage taking care of your children or grandchildren?
Starting cellcept (mycophenolate mofetil) , I would love to hear your experience with this. 
