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Thread: going round in circles

  1. #1
    Senior Member deebee's Avatar
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    going round in circles

    In 2006 I was diagnosed with APS. In February this year I was discharged from lupus unit by a consultant who says I don,t have APS. have been chasing the discharge letter ever since with the plan of asking gp for re-referall to see Prof D,Cruz.
    eventually gave up on the letter and at the advise of local hospital(have recently had to go to A&E) and lupus online nurse went to gp and asked, was relieved that she agreed straight away.Anyway, discharge letter arrived today and it is quite damaging,was scared gp would not refer after seeing this so rang surgery to see if its gone out yet and it hasnt but ball is rolling..phew i said and explained to receptionist,who said that even if it goes out first gp might read letter and decide to "pull" the referall.I am exhausted,worried and fed up of it all.somewhere I have letters from Dr D,Cruz and if I could find them I could show them and say look, it says here... and this one says..etc but what with feeling poorly,letting things slide in the home and trying to catch up,caring for son with aspergers,wading through years of paperwork trying to find proof of stuff that,s all ready been proven before, its just all too much

  2. #2
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    Hi Sorry to hear of what you are going through, I've been under hospitals since i was born 45yrs now, every few years i get copies of my medical records so i always have them. You seem to have been under the same doc through out if i was you you need to ring the hospital where you were under ask to be put through to medical records then tell them you want copies of all your records and want to know how to get them they will either send you a form or tell you to write in for them they then send you an invoice and once paid everything comes to you. If you don't have exact dates just say the year you started going there upto your discharge date, the name of the doc and department and say you want all letters and notes. Most i've paid as been £50 but sometimes if you've last been there within 40days you don't pay. The records are usually in date order so since you want the original diagnoses i would think that would be at the start then the final report at the back. Aside from that you could ask your gp for copies of all med records they have downside to that from my experience is that a lot of stuff is missing or incorrect and you still have to pay about the same amount, good luck with it

  3. #3
    Senior Member acheron's Avatar
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    Hi deebee so sorry that your having a bad time of it the op advice sounds to me like the best solution get on to medical records and I think some one had posted before that they went to the hospital and photo copied the information they wanted at a smaller cost, not totally sure though but I'm sure I read that somewhere on this forum good luck with it all xx

  4. #4
    Senior Member deebee's Avatar
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    thank you,didn,t think of asking hospital but will do

  5. #5
    Senior Member deebee's Avatar
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    Quote Originally Posted by davewhit View Post
    Regardless of what's been said your allowed a second opinion, I would also guess that the Dr you saw on the follow up at St Thomas was not a consultant just a team member and IMO its not up to them to say one way or another if you have APS.

    That said you did say in the past you had a pos then negative,test you can get false positive but not false negative aps test
    they are now being told at tommies not to put too much weight on those blood tests as there are a lot of "seronegative" APS patients,there was a big talk about it at the annual meeting which I was unable to attend but if am able another year will try to get there , they have put a link to an audio tape of the meeting on that site that you gave me the link to, a lot of the advise I have been given there has been invaluable.I was having quite a wobble yesteday as I had been amazed at how readily my GP agreed to send me back and then when the receptionist said that I pannicked as I have been quite poorly lately and the receptionist also upset me by saying "isn,t it good that the letter says you dont have it, and are you not pleased,anyway my wobble is over as I have thought about it and also taken on board the advise given here and on aps website and although my gp seems to have absolutely not a jot of knowledge about aps, she is at least quite nice and a patient lady who from other things in the past I believe that if she were considering "pulling the referral, she would at least ring me first and discuss it with me,so I have decided not to panic and just to wait and see

  6. #6
    Senior Member andypandy's Avatar
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    Glad things seem a little calmer for you deebee.

    Did you manage to ring the medical records department today ?

  7. #7
    Senior Member deebee's Avatar
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    Quote Originally Posted by andypandy View Post
    Glad things seem a little calmer for you deebee.

    Did you manage to ring the medical records department today ?
    havn,t made call busy day ,appt with council re bedroom tax,but did email consultants secretary

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