Expletives Deleted!

[Lupiknits]

Just had a call about my rheumy appt on 22 Dec. Yes, to cancel. Why? Because registrar "doesn't know what to do with me". I was asked if I had requested this appt, and said, no, it came in the post after my GP had sent a blistering letter to the world and his wife to get a move on and "do something". I've passed on my compliments to registrar, with five quick questions, then got quavery and tearful. Apparently I was discharged in September. Managed to keep my temper - not the caller's fault, but am now in limbo. Told them to get back to my GP (who is good)

I was feeling that today is a good day. Changed my mind. Well, it was good enough to fire out 5 questions off the top of my head (thanks to reading this forum)

Plan B may be to turn up, lie down, and wait to see what "they can do".

[Crusee]

Lupiknits this is ridiculous they can't just "shelve" you like that .Youre a patient you require treatment,and if the registrar doesn't know what to do with you then who on earth does?

I think plan b is the only step you can take,if you go there,lie down and just wait and see what they can do.Just hope you're not forgotten and lying on a gurney in a cupboard over Xmas,or been arrested for squatting!

Sorry didn't mean to sound facetious or belittle your plight but if they have nobody at that hospital who feels they can treat you, then they should be looking to get you into some place else that CAN treat you.

Sounds like you have good support from your GP,perhaps he/she can lend a helping hand in getting the help you need.

Good luck with all if this.

Crusee

XX

[PMRpro in reply to Crusee]

There's a shortage of gurneys in the NHS - they have to borrow the ambulance service's...

And I'm not entirely surprised a registrar doesn't know what to do - they won't have passed their lupus driving test yet.

If you didn't laugh you'd have to cry at times.

[Crusee in reply to PMRpro]

Just as well you can see the humour in it because sometimes it's very hard to see out the other side of these problems.

Trouble is nobody sees it as a problem it's just business as usual but it's just not acceptable Im afraid.

I hope something can be done for your situation and soon.

Registrar probably hasn't started shaving yet!

Take care.

Crusee

XX

[Paul_Howard Partner LUPUS UK]

Sorry to hear about this Lupiknits . Could you try contacting the department's PALS team and raising the issue with them? They may be able to help resolve it for you.

[Barnclown]

GRRRR....but, you have done really truly well to handle this spontaneously 👍👍👍👍

Hope you hear back SOON about this Flip Flop...this is Not Good Enough...time for them all to Try Harder 😠

🍀🍀🍀🍀 coco

[PMRpro]

I suppose one should be grateful that a doctor realises the limits of their abilities and it was preferable that you got told by phone rather than having gone to the effort of making it to a pre-Christmas appointment to be told it.

The consultant (who might know what to do with you) is probably skiing next week with the children. If it is any consolation - there is a decided shortage of snow...

[Lupiknits in reply to PMRpro]

Yes, most definitely no snow! Interesting though, number one son was recently talking to a junior doc who is convinced it's possible to replace consultants by robots in a decade. Some of them seem to be robots already - or think we are.

[Hidden in reply to Lupiknits]

Yes the registrar I have seen twice was defo impersonating a human being but I can spot a robot a mile off -something about spending most his time staring at computer screen and then making comments that suggest he snuck in through back door having read a ladybird book on Rheumatology?

Seriously though -what kind of a rheumy unit is this that treats you this way? X

[Freckle1000 in reply to PMRpro]

Big one with you PRMpro - I wish to god Doctors would learn to acknowledge the limits of their autoimmune knowledge and refer you on.

I'd have more missing bits left on me if they'd just done this one simple thing.

I've found the more insecure they are about their abilities, the more they take it out on you as a patient.

I've gutted quite a few medical records and have noticed a pattern.

[Lupiknits]

I'll try PALS, Paul.

I have no problems with facetious answers chaps . The whole thing is a pantomine. Always on a Friday, isn't it? No "joy" soon and I'll turn up with my survival blanket, together with a pan of brussel sprouts I'll have had on the boil for a couple of days ....

[PMRpro in reply to Lupiknits]

Someone apparently saved Ferrero Rocher papers and wrapped cooked sprouts they had dipped in chocolate in them for Halloween. Thought it was probably an ideal gift for someone you dislike intensely...

[Lupiknits in reply to PMRpro]

Hmmmm, one of my special hand knitted pair of socks (well worn) carefully rubbed over the dog when he has rolled in fox poo, and beautifully wrapped (cling filmed first for fear of moths) Big smiley face and thank you note.

Now, you lot, stop it 😷

[PMRpro in reply to Lupiknits]

You make my level of evilness look positively kind...

[Mifford]

I'd be looking for an appointment with the CAB to help make a complaint if I were you ... totally. Flipping. Unacceptable. If you are behind his level of competence then he needs to be making an appointment for you with somebody who does know what they're doing. Maybe today is a good day in a roundabout way - you'll now be referred to somebody competent to do the job.

I have just realised that whenever I think of incompetent doctors they are invariably male in my head ... I'm guessing it's from experience but only just noticed.

I have a dog who likes rolling in various forms of poo wherever he finds it if you need any help with the socks though 😊

[Hidden in reply to Mifford]

No I met and lodged a formal complaint against a first class 🐮 of a GP earlier this year - definitely female!

[Lupiknits in reply to Hidden]

I'm drawing up every avenue of complaint possible. When I was a grown up I was a man from the Ministry. My GPs know this. The numpties don't.

Phew, high fever, malar rash, and yet my hands are colder than ever since that call. Great how medics can give you a flare by stressing you out.

Texted friend who has my key to pl check on me tomorrow, and have promised to text her any time before then if I get worse.

And so to bed x

[Mifford in reply to Hidden]

Oooo that's a point .. I try not to think about my GP if I can help it. She definitely deserves the socks!

[Lupiknits]

Mifford - I may need to take you up on that offer. My dog has such a horror of baths that after 6 years he's made the connection between fox poo and the bath. He has a big heart but few brain cells.

[Mifford in reply to Lupiknits]

8 month old lab puppy ... offer him a biscuit and he'all do anything you want lol

[JanW]

My sympathies, sadly I know exactly what you mean. After having 3 unpleasant biopsies only one with a diagnosis I was then told I had to have another under the arm where they would take a larger amount of skin! After much thought and feeling unable to go through it all again I refused. Since then I have heard nothing from rhumology, or dermatology. My very reluctant new year's resolution is to talk to my doctor and get referred back, as I have been so unwell for months now.

Perhaps you too need to have a word with your doctor again and press the point. Just do what is best for you and be determined like me to win the fight for you health.

Good luck.

[Lupiknits]

Thank you janW. Please may I ask you to stick to your resolution? Yes, I'm really annoyed at the moment about continuing care, and I have been through some very unpleasant procedures, which I wouldn't care to undergo again. All in all, it has been better than not in terms of worry by myself, family, and friends for the general feeling that I may be on the way to better things. I hope you don't mind my suggestion xx

[Penelope-Mary]

Oh lupiknits...all has been said and the humour a great tonic, but yuk...what a horrid feeling to be cast off.

And yes, a flare, that is exactly what happens...and how infuriatingly wrong.

Hope now a day or so after..you have plan b or c or d in action.

Hugs 🤗

PM

🐇

[pixiewixie]

Lupiknits just catching up. Absolutely ridiculous. Tell that register to deregister! Get someone else to see you. I agree with Crusee in all aspects of this response. You may need your doctor to send you to a more specialised hospital. I am so sorry to hear of this hassle & I do hope you & your GP can resolve it immediately! I got an emergency appointment on Thursday for tomorrow morning. I do hope that you will be writing to us very soon to let us that you are now all sorted!!

Thinking of you Pixiewixie xx