Confused/Concerned..Your thoughts pls.

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Confused/Concerned..Your thoughts pls.

Postby GillSimo » Tue Oct 08, 2013 8:41 pm

Hi folks, I'm fresh back from a hospital visit so surreal that I'm struggling to make any sense of it.
I'm Male/59, suffer bad from Fibro. Separately, my GP's referred me for camera's from both directions, fast tracked due to symptoms & blood tests.
I've had the tail end version twice before over the past 10 years.
Over some 4 months I've received three appointments, each through my letter box on the day of the appointment, all after the time.
Finally, today, I was gonna get it over with.
Not going to patronize you's with examples of the obstacles to overcome in order to get it over'll know the effort involved.
I arrive & I'm led off, expecting to be introduced to a gown and an enema drink but instead I'm introduced to Prof X, head consultant.
I'm kinda chuffed, usually lucky to get a fully qualified nurse. I shake his outstretched hand, though I know it's going to hurt a bit & thank him for seeing me.
I take a seat.

So, why have you asked to see me?
Err, my GP referred me, I didn't ask.
Your GP's in Glastonbury yes, is that where you live?
I live just outside of G'Bury
And what do you do `just outside of G'Bury` do you live?
I'm disabled & live on benefits.
In what way do you consider yourself disabled, I wouldn't say you're disabled?
Well, that's your opinion, look, can we get to the point of my being here please?
Yes, we are....and I need to know your disabilities as part of your being here.
I have FM.
And who told you that you have FM, your GP?
And why did your GP diagnose FM, what reasons did they have?
Errr, look, errr.....are you asking me to now give you a history of my symptoms, so's to satisfy you a correct diagnosis for FM?
What the hell has my FM got to do with all this please?
Ok, never what did you do, just outside of G'bury, before you considered yourself......dis-abled?
Errm, music production, sound engineering.
I see.....perhaps I'm wrong & you'd know better than I but that conjures up mainly seated at a console & moving a few knobs &'re no longer able to do even that, no?
No......look, have I got my dates mixed up or something, 'cos I thought I was here for an A.R.S.E. assessment not an A.T.O.S. one?
Have you been treated here before?
Twice, for tail end camera.
You see, you say that but there's is no record here in your notes, look, there's barely anything in your notes.
Have you had any other treatments related to this, at any other hospitals?
Yes, camera down throat in G'bury & Barium Swallow in Taunton.
So....why have you now chosen to come here, you like to create confusion perhaps?
I was sent an appointment for here, same as I was sent appointments for those choose/book was ever offered.
Ok, I'm prepared to have you come in for camera's both ends........but I'm not prepared to waste precious time. I've thus far arranged three appointments, three times I've fast tracked you & three times you've failed to appear. So...WILL you appear is the question?
I explain the three missed appointments.
So, it's the hospitals fault you're saying?
I'm saying it's not mine.
If I make you an appointment here & now, will you attend?
Yes, of course, so long as I'm able.
Oh....Yes, of course, you might suffer a bout of dis-abled mightn't you?
Yes indeed, I might......& may I ask please, whilst on that subject; those previous three appointments were for 7.30/8.00/8.15am. Do you only do early mornings because it takes me a good three hours before I'm ready to attempt much, so afternoon would be much easier for me?
So.....being forced into making an that also the hospitals fault?
We're all forced into facing things that require extra effort on our part....& we get on with it.
We're here to help with what might be a very serious & life threatening condition....but that's here, Ok? ....the rest is down to you I'm afraid.
Sorry? I'm very confused? Whatever, I was only asking for God's sake.
You know.....I'm starting to be of the opinion that I might just pass you over to someone else....because quite frankly this is a mess, an utter nonsense & well...let's just say that from where I'm sitting it's no straight forward case....& you're looking most suspicious.
What??..........Has one of us dropped a tab of acid or something? First Atos, now we're in a Court of Law are we....& what crime exactly do you suspect?
Ok, consultation over, I do not wish to handle this case so I will be referring you on.
I won't be allowing you to handle this case....& for sure, I'll be referring you on.

Stand up/leave.

The dynamics of this dialog are simply put. This consultant positively gushed with a superior, gloating, arrogance for himself & a dismissive contempt for myself. Consult he couldn't possibly. Only insult, in which he excelled & most clearly enjoyed.
I shall be complaining you bet 'cos this fella is in charge of a unit dealing basically with men with suspected, possible, prostate cancer....& he is NOT the kinda consultant that anyone is going to want to face, from my experience.
But what bothers me the most is the apparent nonsense of the whole episode because devoid of anything sane/logical I'm starting to get a wee bit paranoid.
I've yet to come face to face with Atos & it's taking an unusually long time for them to respond to my ESA submission.
This guy however was the epitome of Atos, so Atos he was like an exaggerated caricature.
And I'm left fearing that I've been set up in some way.....that I haven't heard the last of todays experience?

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Re: Confused/Concerned..Your thoughts pls.

Postby fibro-lu » Tue Oct 08, 2013 9:43 pm

hi Steve and welcome back,

I am not surprised that you are confused
sounds like a right nightmare

ATOS is nothing like that, so don't worry
it usually takes a few week before they get in contact (up to 13 weeks)
for peace of mind you could give them a call (number on head of letter) and ask because "you haven't heard anything yet"

don't know where and how but would find out and complain about
- the consultant
- the consultation
- how your case is handled
- the sloppyness of your medical records going walkies etc

why was he your consultant in the first place?
what has FMS to do with prostrate cancer?
where have your previous medical records gone?

hope you will recover quickly from that episode
all the best :cow-wave: Lu
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Re: Confused/Concerned..Your thoughts pls.

Postby Florence » Wed Oct 09, 2013 4:25 pm


I'm not at al surprised you're dazed & confused. Anyone would be. I can't really offer any insight, except that in my universe at least this is becoming more frequent. I don't know why, perhaps they just don't get paid enough to LISTEN. My advice is to go back to your GP, ask him what was in the referral letter, to whom, and ask him to sort it out. That's what I do, insist they make a call or write a letter to get to the bottom of this total miscommunication.

My most recent - a couple of month ago - was surreal too. Before going any further, I would like to say I have pan-colitis, which is a combination of crohns disease and ulcerative colitis. I got what's called enteric arthritis, ie the disease attacks other parts beyond the gut, in my case joints & tendons. This was all many years ago (so last century). Since 2000 I have been treated for sero negative arthritis, as it took on a life of it's own after my colitis was in remission. Most recently it was recognised as Psoriatic Arthritis by my current Rheumy, who wrote to my GP saying I was "very poorly" (no kidding?).

So, fast forward to 2011. The rheumy puts me on Sulfasalazine for the joints. I get worse. I'm told it take time (oh yes, that old chestnut). After a year, I'm getting much worse, now in a wheel chair, so put on methotrexate along with the sulfasalazine, despite carrying heavy warnings against this combo. I get worse, etc. I hurt all over, can't stand, can't walk. Seek urgent consult with rheumy, Doesn't arrive. I feel close to death at this point (not kidding), so stop taking the sulfasalazine. Within 2 days much better, but still no appt. I call again, as I now have severe colitis symptoms - worst for years. Still no appointment, So I stop taking the methotrexate. Next appointment to see Gastroenterologist. He can barely speak English (not racist etc, just think it's an important detail for a consultation). He doesn't know the names of the most common meds. He claims I haven't got ulcerative colitis, or crohns, just a medication reaction. Two weeks later, off to the Rheumy. The consult was as surreal as yours'. It started off with the why did you stop the MTX without a consult - explained ringing many times etc. Then he said I should go on injectable MTX, so I say OK but if the colitis (a known side effect) comes back I will have to stop as it makes me unable to walk, bed-ridden, not just a bit of a gippy tum. Then (and here's how I'm on this board) he says, actually you haven't got arthritis, you have FIBROMYALGIA. I can't treat you for that. I gawp - not often I'm lost for words. But my joints, I stutter, he says (drum roll, loud voice) YOU HAVE CROHNS DISEASE. GET IT TREATED AND YOUR JOINTS WILL GET BETTER. Goodbye.

So you see, I'm dazed & confused too. I heard that fibro and RA (or PsA, which was my last diagnosis) can go together, but has anyone else made the slog through the cheap drugs, to no relief, and then been re-assigned to fibro, because there aren't any expensive drugs for that?

Any way, it's been good to know that there are others out there in this weird place called alternative reality medicine. Not good as in GOOD, but at least we're not alone.

As a final aside, my GP tried 3 times to get me to make a formal complaint, but I insisted he got it sorted out. Still waiting for outcome. But yo could also try that route if you don't get anywhere with the other options.
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Re: Confused/Concerned..Your thoughts pls.

Postby FluppyPuffy » Wed Oct 09, 2013 8:24 pm

You could contact your local PALS office. The linky explains how they may be able to help you with this.
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Re: Confused/Concerned..Your thoughts pls.

Postby Florence » Thu Oct 10, 2013 12:47 pm

Thanks for the tip, but PALS doesn't cover this area.

I'm trawling though the local NHS site, but it's a nightmare - so badly designed, one might almost say to deter anyone without the tenacity of a terrier.
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