Well, I'm sure that this has happened to at least one other person on here...got to my appt nice and early. Grabbed a cuppa and lo and behold, called straight in. Thought, wow, this bodes well 😊 it didn't. The rheumy was very pleasant asked for referral letter from GP. This was the beginning of an entirely wasted appt. - not the Dr's fault but my insurance and my GP as per usual...the GP hadn't faxed over my referral letter or my blood work so I have my insurance blaming my GP and my GP blaming my insurance. Piggy in the ruddy middle!
After a brief consultation the Dr said that he really needed my bloods and he tried to get my GP to fax them over but to no avail. He asked me to go to my GP and get hard copies of my bloods this year so far and a copy of referral. So I went straight to my GP and requested this - this was like pulling teeth. B got so irate as they kept us waiting for an hour!!! They then said they'd fax a 'copy' of the referral to the rheumatologist as this is their policy so we asked for a sent receipt. You'd have thought we'd asked for an appointment (please note sarcasm 🤔) now?? You want us to send it now?? B went mad and said yes - NOW!! After much grumbling, waiting and coming and going in the office, we got the receipt. We know what the wait was by reading the copy - they'd only just typed the referral! I felt like giving up. I was exhausted, disappointed and just wanted to crawl into a hole. But I didn't and won't!
Had a look at some of my bloods and I can't understand most of them! But the some 'highlights' are:
Haemolysis positive
Low vit D and low calcium
My antiphospholipid is double
A few borderline others but at least when I go on Thursday for my second 'first' appointment, I have what he needs and go from there!
Thank you for listening to me rant!! 😚😚
I vvvtired Charlie xx
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Charliebear68
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I wouldn't have had the courage to have done it before! I'm still disappointed but also empowered! With all the wonderful friends with excellent advice that j have found here and of course, my darling B.
I get the 'bonkers' bit! You do start to question yourself with the myriad of symptoms you can get. Hopefully the rheumatologist will find some objective signs that will explain what's wrong. I'm sure you're not bonkers.
Name changed for a few reasons, but still me! Great song and I wear a ruby, 'cos I love them!
I do hope Rheumi can help you feel a bit better soon. X
So sorry to read of your wasted first Rheumy appt!. No excuses by your GP surgery, well done you for sticking to your guns and getting it sorted!. Do hope Thursday goes well now specially as some of your bloods need action taken!. Fingers tightly crossed for you. How's MIL?. Happy EasterX
Who in the world still uses a fax? Did they get the memo the internet is a thing?! Oy vey, sometimes the backwards system utterly boggles me here...but it's good you managed to get it sorted. Fingers cross the next trip will be more fruitful for you.
It does seem very old fashioned but I remember when I had my private respiratory appointment at the Nuffield - all he had was a very crumpled fax from my Rheumy. The link between private and NHS needs to be improved - this is the 21st century!
I have had my eyes opened over the past few months. Finding this forum has given me he strength to know when I'm being fobbed off and the kahoonis to do something about it!!
Data protection act restricts what can be sent by email if patient personal data is on it. Even faxes (which are the norm in NHS) require a fax to be sent to confirm recipient will be at the delivery port and details have to be split into divided portions to protect data. If the NHS had been allowed to operate with one universal electronic patient management operating system, like it was intended, then these sorts of issues would be a thing of the past. You certainly need a proactive and motivated surgery team to make sure information is transferred in a timely manner. Maybe a letter of enquiry to the practice manager?!
that's mindbogglingly absurd. I suppose since I've spent most of son's life communicating with the DWP and am regularly astounded at how little information they seem capable of finding on their own systems, I shouldn't be surprised, but good grief, that needs to change. As it stands, the companies that bought medical info off the NHS have easier access to records than the NHS itself. Yikes.
It's very out dated isn't it. I was organising a private appt with Neurosurgeon before xmas and the insurance company didn't get the original fax from GP. So I went in and asked them to re-send it immediately whilst I stood there and waited. I thought then, how odd. Typing it and sending it via email as attachment would surely be better? If it's a security thing, a consultant sent me notes once and it was encrypted with password which he text me separately. Much more efficient. I don't think smaller GP's surgeries have the funds to stay up to date with tech any more.
Oh my goodness you poor thing! That kind of cock up (no better words for it!) is inexcusable. I've had my share of terrible appointments but to not type and send the referral letter in time for an appointment is appalling. Thank goodness B stood up the GP's staff and got it done immediately. I bet you were exhausted by all of this. I have taken to getting copies of everything now. My monthly bloods, referral letters, Consultants letter to GPs' following appts. etc. I have actually written to my Rheumy and Dermy's secretaries and asked that in future all correspondence is CC'ed to me as a matter of course (and that my written request is noted on my file permanently) and luckily they have stuck to this. I ask for my monthly bloods to be printed at GP's reception when booking next month appt, they charge £1 a sheet but the GP will do it at an appointment for nothing. After all we are entitled to see these documents, they relate to us and our health. So I think after learning the hard way, I have a copy of all of my most recent stuff. It's time consuming being so on top of it all this way, but you are kept in the loop. I have my fingers crossed that Thursday's appointment is much more positive and successful! It can't get worse can it. Best wishes. Wendy x
You should be able to access your GP file online by now. I know I can but haven't yet registered for this option yet as my GP is better than superb at keeping me in the loop. She phones after every blood test to update/advise me. Amazingly, she phoned me two weeks ago, WHILST ON ANNUAL LEAVE, purely to ask me how I was feeling as she had spotted a sudden leap in my ESR ( she keeps tabs on her patients from home when she isn't at work). She's fab.
My GP does offer this online but you can only access certain things. You're unable to see blood results, your file, appointments...the only thing I've managed to access is repeat prescriptions and what you have on prescription. I've requested to be able to gain access to everything but not heard back. This was about 2 months ago. It could be me being a bit of technophobe...
You can via emishealth.com but you need special passwords when you have shown your ID again to the surgery. It's a legal entitlement but only in the past 6 months or so.
Grrrrr this makes me mad.... on top of already feeling exhausted and poorly you then have to deal with this incompetence, it's so how infuriating! Poor you I really feel for you, I know how you feel as do many others on here.
Well Charlie here's hoping your next appointment is productive and you get the help and answers you need, I have everything crossed for you and wishing you well.
I agree, it's infuriating and unfortunately, the norm at my doctors 🙄 I'm much more positive about the next appointment with rheumy - I think I'll be better prepared myself 😆
I really don't know how I'd cope without this forum - just knowing that when someone says that they know how you feel they actually do is amazing.
Happy Easter Monday to you too chick, thanks for your support 😘
Same here Charlie it's a great having this forum to turn to and knowing that others 'get it' goes a long way to staying sane or saneish..🙃!
I guess it's given you a bit more time to prepare too. It's taken me a few years to sus it all out , I was drifting until I found this forum and with advice and support from others here about being prepared I'm in a better place and I'm not afraid to ask questions and challenge Dr's. I now get copies of everything for my own file too.
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Horrendous second appointment at rheumy!!!
Saga Rheumy appointment dead end!
Rheumy telephone appointment tomorrow 🥺😲😟
