I am magic: The scene: my hallway, this morning. I... - LUPUS UK


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I am magic


The scene: my hallway, this morning. I am on the phone to my GP, discussing the results of my recent synacthen test.

Me: Thank you for sending me the copy of the endo's report to Dr Rheumy. He recommends that my thyroid markers should be re-tested in 3 months. Does he organise that then?

GP: No. He's discharged you from his care.

Me: So Dr Rheumy will organise it?

GP: No, not usually.

Me: *waits*

*crickets chirping*

......ok, so you will?

GP: ......er.....would you like me to?

Me: Is there anyone else?

GP: Well...you could....um.....

Me: I only know that the endo wanted that to happen at all because I asked you to give me a copy of the letter.....but now it's come up, yes, I would like you to schedule that for me please.

GP: Righto then, I will put a reminder in your notes

Me: Thank you. That reminds me of the neurologist report sent to you last November. I had raised CK levels then. Did he suggest a repeat CK level?

GP: Er...let me see.....ah, yes.

Me: Soon?

GP: ...um...no, no. It's not urgent. It just says to repeat it.

Me: I see. So when is that scheduled for?

GP: When would be convenient for you?


GP: You're welcome.

31 Replies

Absolutely ABSURD


I’m speechless but not surprised...

The cherry on the top is that after agreeing to renew my pred prescription, I picked it up just now to find that he omitted to specify gastro-resistant tabs - which is all I have had for the last 2 years.

I would be better off if instead of seeing a GP, I simply held my own notes, a sheaf of request forms and a prescription pad.

ursi in reply to whisperit

I often said that! And I’ll even do it for half the salary😊

Omg what a load of utter bs. Why these doctors can't communicate better between themselves and their patients is beyond me. Sadly though it doesnt surprise me. Bet you felt like strangling her down the phone.

I've hardly started. I asked if they'd got the results of last week's bloods and he asked "was it done in the hospital or here?" "Hospital" "Then you'll have to ring them for the results" They STILL haven't worked out a way to get access to results of bloods done in the hospital less than half a mile away....

Omg. Sounds like your doctors surgery is still in the stone age. Having said that, you'd probably get more help from Fred Flintstone. 😘

MsAndyIvy in reply to whisperit

But I can track a 99p packet of seeds across the country from despatch to delivery with Amazon.

Surely a central database or even a local one wouldn’t be that hard or expensive.

AgedCrone in reply to MsAndyIvy

Naughty,naughty....you are thinking outside the box again.

Remember- this is the NHS...perfect in every way, except when

It isn't!!

Fennella02 in reply to whisperit

I was told by my practice for many years that they couldn’t access the hospital test results and quoted this to my rheumy nurse at one appt. ‘Utter tosh’ or ‘pack of lies’ was the gist of her answer and she was right.

Now I have a superb GP for whom nothing is too much trouble so that issue is no longer there. It angers me when I hear GP stories such as yours but, up until 4 years ago, I was on the receiving end of the same and I know how very vulnerable it made me feel.

Continue to pursue your sloppy, lazy, uncaring GP with a foot up his a***e. Xxx

Saying to repeat a CK doesn't mean it isn't urgent - it means it need to to be done to establish whether it was a spurious reading. What a plonker...

whisperit in reply to PMRpro

Later in the PM, a phone call from the surgery -

Nurse; "I've been asked to arrange an appointment for a thyroid blood test this Friday"

Me: "Er, that's not due for another 3 months. What I need this week is a CK level"

Nurse: "I see. OK, I'll change the form. This Friday, then"

Me: "For the CK, yes, thanks. And a thyroid check in 3 months"

Nurse: *obviously typing* ".... thyroids in 3 months...I'll ring you nearer the time for that then."

It has not been a day for building trust.

PMRpro in reply to whisperit


Maybe all of them need to be sent away to a "Trust and Communication Skills Building Conference" and the patients who have experienced their lack of proficiency (for lack of a better term) can take over and run the place and prove our efficiency and good safety standards while they are away 😉. Do I have any volunteers?


Not surprised in the slightest.. I’ve had nothing but “magical” bs from my gp’s and plenty of lost referrals 4 now in the space of 2 years.. and no repeat appointments with cardiologist who I was recommended to see to check my heart every 6 months or top neurologist from headache clinic who was to see me again last summer. Im convinced the whole system is fd, not to mention the medicine they suggested I take with common side effects showing internal bleeding and cancer.

I have no words. OK then, I'm gumswizzled by this.

Is there any value in changing your GP Practice? Then, at least in my experience, they have a close read of your notes so that the first time they see you they may actually be more ready to get something in place.


Sounds par for the course with GP's these days. Don't know if it 's budgets or just lack of interest, but we sure have to be much more proactive these days.

whisperit in reply to AgedCrone

Prior to having to take retirement, I had a base office in the same Trust, and also moved between a bunch of GP practices nearby to see patients. Access to the Trust data via GP IT terminals and vice-versa was actually nightmare-ish. Every surgery is an independent business, a lot were single-handed, and every GP seemed to believe that his (rarely her) pet system was the best one, and that everyone else in the area ought to use it. Suggestions that everyone should adopt the same one were meant with the response - "I'm not switching to use your system, mine is best!"

We then had IT businesses constantly trying to sell new systems and "upgrades" to each individual practice, and to the Trust, with absolutely no regard to whether they were mutually compatible or whether the latest upgrade would completely ruin any tenuous work-rounds to increase connectivity that we had managed to establish.

I ended up having to make entries for each single patient on three separate database systems i.e. I would see patient X in surgery S, and have to enter information from that appointment on all three databases separately to ensure I could then access it from my base office (or from surgery T)

On top of that, "cutting bureaucracy" meant that I lost the admin support who might have done this for me, so that I - a clinician - was being paid twice as much as an admin assistant to spend my time doing this data-entry. Crazy! x

PS Oh, and the social services database was completely inaccessible from NHS computers, regardless of the fact that I was on the joint safeguarding panel and working with their families. To check on the latest info on a child at risk I was working with, I had to ring up the SSD office and ask someone there to access the database and send me it via an encrypted email...three hours later....oh well....let it go, let it go.....!

AgedCrone in reply to whisperit

And they are just a few of the zillion problems in the NHS. Nobody will listen to anybody else &they all think they know it all!

Whilst Politicians are scrabbling to get their pet project on line .....patients & staff suffer.....but who could we trust to objectively sort it out?

I too am retired & now have time to try to get to the bottom of some of the messes I get involved in- but A blames B & nobody understands how to fix it except by throwing money at it...& even then 90% of the time they throw the money in the wrong direction.

I have just cancelled a blood test because a procedure I was due to have needed it.....but that was cancelled....so test not needed.

I have so far had two acknowledgements of the cancellation & a third asking if I want to make another appointment. I know they were electronically generated but why so many? Do they suppose I.m so dozy I need informing twice ...then need reminding I might need another appointment? ( Don't answer that!)

Next thing they will electronically be asking me how I feel! Although I guess not as I might tell them twice!

Melba1 in reply to whisperit

Totally crazy but sadly not a surprise 🙄 Sorry you’re going through this and not getting the right support or follow up. I suppose it’s no comfort but at least you’re knowledgable, confident and proactive enough to chase them. I really worry about the old, the young, the naive (who trust in the system 😬) and those who are just so worn down by it they can chase no longer 🙁 I must admit I had times last year during the peak of my neurolupus flare where I just wasn’t competent enough and lacked the physical and mental energy to keep chasing for appointments/ tests etc and my GPs certainly weren’t going to do it without me pushing, not that they didn’t care just that they have to deal with the patients who are well enough to present to them. They did say when I went recently how worried they’d been but that worry didn’t translate to checking if I was quietly dying at home! If I hadn’t had a very good rheumy who stepped in and took over everything for me and saw me every few weeks I don’t think I’d have survived and it makes me sad that not everyone has a rheumy who looks after them so well 🙁. I hope you find one


whisperit in reply to Melba1

You're so right. It's been too much for me too at times. How more vulnerable people fare hardly bears thinking about.

I rang the rheumy nurses this morning to get my blood results. As she went through them, she realised that my rheumy had failed to request CK levels. Luckliy, I had spotted that last week, and arranged to get them done separately at the GPs tomorrow. Good job someone is on the ball! x

Melba1 in reply to whisperit

Good job indeed! Anything turn up that helps provide answers?


whisperit in reply to Melba1

So far, it's looking OK on the bloods thanks. Just the ESR marginally out of normal range at 16 (top end of normal is 15). Fingers crossed that means the MCTD is quiet atm. After some very helpful advice from the Addison's Disease self-help support group, I am feeling very hopeful that my main symptoms are indeed down to adrenal insufficiency, and may be treatable with some changes in corticosteroid regime. x

That’s great it’s looking like you’re finding a cause. As we all know that’s most of the battle. I know adrenal insufficiency can still be a long hard battle but think most people get back to normal in the end? I’m just reducing my steroids now and had a chat with my rheumy about being concerned that after a year on mostly high steroids my body would struggle with steroid withdrawal and adrenal insufficiency. He said it can take time (and side effects can be very unpleasant) but if managed well almost everyone’s body recalibrates in time so fingers crossed yours will too.

Imagine being back to the old you?? It’s looking like it might happen 🙂 and great to keep that hope alive for all of us (even if you do have to work full time to chase it all up 🙄)


whisperit in reply to Melba1

As PMRpro pointed out to me, everyone is different. Some people are more prone to developing adrenal insufficiency than others, and sometimes there is no way to predict who will and who will not. It does appear that my adrenal function won't recover now, but at least that might provide a clear explanation for symptoms that have so far been unexplained, as well as ways of compensating for it.

Good to hear that you are ready to taper down now. Please do keep posting on how it goes - and good luck!


So you go to the same GP surgery as me then ? Ha ha

I am still waiting for my GP to refer me to the memory clinic something my renal consultant requested in a letter 2 years ago . I haven't reminded them because I was admitted to hospital last year following a vasovagal episode and they did a memory test there as they thought I had had a mini stroke , gp doesn't know that though so maybe his memory is worse than mine and he's just forgot .

My surgery NEVER read the consultants letters .

Following the vasovagal attack admission the discharge letter to my GP asked him to refer me to a heart doctor for checks to make sure that my heart wasn't causing the fainting episodes .

I heard nothing from gp so I rang and asked receptionist had they received a copy of the discharge letter

She came back and said cheerfully yes we received it

After a couple of minutes silence I said well are you going to act on it then the letter has suggested the gp arranges some tests ?

Oh I will pass it onto a doctor now and get back to you , she rang back with a time the gp was going to ring me .

Gp rings and says I don't really think the referral is necessary .

Renal consultant asked me at next appointment if I had been referred to the heart doctor by gp , when I said the gp said he didn't think it was necessary he said " are you sure that's what he said " , that comment really annoyed me so I rang gp surgery and asked them to explain why they thought the test was unnecessary as renal consultant didn't believe he had said that .

Gp rings and I said my renal consultant didn't seem to believe me when I told him you said the test wasn't necessary . He said well does he think it is necessary ? So I said well as he asked you to do it he must do . Did he say why says gp , I then said no but maybe it's because I have lupus which is attacking my kidneys and they want to make sure it isn't attacking my heart aswell .

When I said that his attitude completely changed and he started appologing saying I'm sorry , you have a complex medical history I should have realised , he made the referral on his computer whilst I was still on the phone to him , still saying sorry .

Those are just a couple of examples I've had and so I am not surprised by your story at all , they need a kick up the backside all the time , we basically have to be our own doctors .

whisperit in reply to Buffy14

Appalling. That expectation that you will do the negotiating between them is just the end. Perhaps we need our own PAs, and to go into each appointment with a couple of attack dogs to keep reminding them to DO YOUR WORK AND READ THE %^&* LETTERS! x

Buffy14 in reply to whisperit

Good plan , I might take my crazy Lakeland terrier with me next time I go ha ha , it is true though I always have to ring and ask why they have not done what consultant has asked , if I didn't receive copies of the letters they send what would happen then I wonder x


Somehow I missed this post of yours Mike. Words don’t begin....? X

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