Nothing’s Easy With Me! 🤬: I had a 2nd letter for my... - NRAS

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Nothing’s Easy With Me! 🤬

Blackwitch profile image
9 Replies

I had a 2nd letter for my appointment on 22/3/23, received yesterday evening. This time, the letter says I’m in for an infusion. As far as I was concerned, I was going to discuss which biologic I was going to take and how to self inject - Etanercept (Enbrel) or Adalimumab (Humira).

Again, I’ve left a message on the Rheumatology Helpline for confirmation of what I’m actually going in for.

UPDATE - Rheumy nurse just phoned. He said to ignore the 2nd letter. He didn’t know why that had been sent. Normally, I would have deleted this message but it really worried me that suddenly (seemingly) they were just going to whack me with an infusion, which I would have declined. It just made me wonder how many people are receiving incorrect letters from outsourced companies? This was Dr.Doctor but connected to the NHS App.

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Blackwitch profile image
Blackwitch
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9 Replies
Neonkittie17 profile image
Neonkittie17

Just-goes-to-show-you-need-to-confirm/query-these-things!Good-luck-with-your-new-med.🙏🏻

Blackwitch profile image
Blackwitch in reply toNeonkittie17

You certainly do! Especially if you live round here! Nic xx

Neonkittie17 profile image
Neonkittie17 in reply toBlackwitch

Yes-we-need-to-always-chase-things-up.Ever-proactive.xx

AgedCrone profile image
AgedCrone

I honestly think they are so short of clerical/admin staff letters are typed but the typist has no idea what they mean,& can’t check with anybody, especially if the nurses are involved in any of the strikes.

I think you saved yourself a wasted journey by questioning the instructions in the letter.

But don’t worry…you don’t just ‘go in ‘ for Biologic infusions..there are blood. tests, sometimes Xrays , & explanations of the drug you will be given,before you get anywhere near having treatment.

Maybe the next letter will have the right information?

Bookworm55 profile image
Bookworm55 in reply toAgedCrone

Yes I think you may be right about the admin/clerical letters! I received 2 appointments to see the nurse- one day apart . (28/2 and 1/3). Took a lot of phoning round to sort out but in the end the Rheum appointments line got back to me, admitted that it was an admin error - and then cancelled both appointments as I ‘m due to see the consultant a week later! Luckily it was just a clerical rather than a clinical slip up, unlike Blackwitch’s.

AgedCrone profile image
AgedCrone in reply toBookworm55

I am trying to arrange an infusion…but the department “Secretary” doesn’t have the faintest idea….she asked my name so many times& just kept telling me I wasn’t booked in…..I gave up..phoned back & left a message for a rheumy nurse to call me..but there are only two nurses left so I’m not holding my breath.

Blackwitch profile image
Blackwitch in reply toAgedCrone

I know the NHS is overwhelmed at the moment and not helped by the strikes. I do agree with the strikes though. However, I don’t think the NHS was working before Covid and looking through my medical records, once they all were visible online, just showed how many mistakes had been made when inputting information. Eg. ‘Constipation’ was emergency colorectal surgery to remove a mass and 8cm of colon, ‘Pulled Muscle’ was prolapsed disc which required surgery, ‘Sprained Ankle’ was broken foot, etc.

I think I have got most of the recent errors put right but who knows what rubbish appears further back. It’s a good idea to check. I think if so many errors appear on one person’s medical records, how many errors must there be in the population as a whole? Millions?

Oh! My husband went for his shingles jab this morning only to be told he’d had it last year! 😂😂 Memory Clinic next stop. Nic xx

AgedCrone profile image
AgedCrone in reply toBlackwitch

Yes…..I’m constantly surprised by medical procedures, I have absolutely no knowledge of, but apparently some GP in the dim and distant past thinks I received.One hospital even credited me with having a hysterectomy, which I think I might have noticed ……in fact I did managed to get that changed.But as long as we can see the records to correct serious discrepancies I’m not too worried worried

Blackwitch profile image
Blackwitch

I had a complete hysterectomy in 2021 and went straight onto HRT. The best time of my life by far. I felt great for about 4 years. Then the joint pain started and it’s been downhill ever since. ☹️ xx

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