I have pernicious anaemia which is controlled by injections every 2 months but now the bloody doctors have lost my notes about it, and they're disputing why I'm having the b12 jabs (as if I'd make it up or something - I didn't even know what it was until the doctor did extensive blood tests and told me I had it 18 months ago)
I'm pregnant at the moment and they've said they want me to stop having the jabs when the baby gets here. Which means I'll be weak, exhausted, depressed, confused and unable to think or cope (PA symptoms) ON TOP OF the normal exhaustion and sleep deprivation of having a newborn.
Absolutely ridiculous and irresponsible decision. Any nerve damage etc you get from untreated pernicious anaemia is permanent, and they're talking about leaving me for months until they can do a blood test and check if I have it.
I don't see why me and my family should suffer because the doctor has lost my notes on it - does anybody know where I stand on this?
Can I get a second opinion from a doctor at the same practise or would they all be singing from the same hymn sheet, d'you think?
The notes were apparently lost when I moved from one surgery in another town to this one in december last year - he said there's no mention of it on the transfer notes. I've tried to contact my old doctors but the nurse who was dealing with me there has since retired and moved away!!! fgs.
If they persist in refusing to investigate AND refusing to treat you, then yes I would write to your MP. As you say, the side effects of going untreated can be serious.
You should be able to get a second opinion from another doc at the same surgery (I think?); I would write everything down, in a calm dispassionate tone, go in, explain, make them read it, and if they also fob you off tell them you will be making a formal complaint as well as writing to your MP. Then follow these threats through. Your health is too precious to be taken for granted, by anyone.
Make another appointment to see another doctor at the same surgery - explain how angry and worried you are. You'll be surprised how many GPs are prepared to give a second opinion and question a colleagues diagnosis. I second what the last poster said. Write it all down - emphasise how angry you are and your concerns for your health.
As an aside, I don't understand why you should be waiting months for blood tests? Can they not redo the tests?
This beggars belief. Why would anyone make something like this up. You aren't getting an illegal high from the B12, nor are you asking out of the blue for heroin substitute. I imagine that the hospital that processed your blood tests has a copy of the results.
Still confused about waiting months for blood tests but then not a doctor or a patient with this problem. Are you having any treatment at all especially as you are pregnant? Surely a blood test now would show that you are anaemic? Or after giving birth? As soon as you begin to feel ill, you should be re-tested?
As Kreecher and other OP says - it is perfectly possible for the GP surgery to locate copies of test results from the hospital that took bloods.
Don't accept that your notes have been lost so treatment is to be withdrawn. This is unacceptable. The lost notes are not your problem but theirs and something they need to rectify. The burden of proof is not on you. If seeing another GP doesn't work - complain to the Practice Manager at the surgery. Tell them to locate results from the haemotology dept you attended for blood tests as they will have copies. Finally, threaten to complain to the Primary Care Trust about the GP, the practice and their shocking negligence. If necessary, follow this through.
Your notes may have been transferred electronically and some GP sytems do not talk very well to each other, so the new practice still has to refer back to the computer printouts from the old surgery.
Your old surgery was surely computerised and can access your records? Every consultaion and every injection MUST have been recorded. Some surgeries forget to print out all hospital letters etc as well when transferring notes (we are forever chasing them at work). Ask your old surgery to print out & re-send ALL computerised records. They will only send them to the Health Authority who will forward them to your registered GP only.
Others are right though - your blood tests will still be on the hospital system and the hospital should be able to re-send them to a new surgery (if asked by a GP)
I asked the doctor if they could just test me now, he said they were testing for b12 in the blood - so if they took a blood sample now it'd be full of the stuff because I've been having these jabs. So basically the only way they can check is to leave me for months until the stuff is entirely out of my system, THEN do a blood test.
Yet the Pernicious Anaemia society says on its website:
"Pernicious means "invariably fatal", which, if PA is untreated, it still can be. It is a type of anaemia which affects many parts of the body. It can result in permanent damage if not treated properly, and in good time. Six months is far too long a time to delay treatment of injections."
I'll definitely try to get another opinion. I know his argument is that he thinks most of PA symptoms are in your head - I must also be imagining the sore red tongue I get too, obviously.
The first thing I did when the doctor told me this was phone my old surgery to try and speak to the nurse who was dealing with me wrt the pernicious anaemia. As I said, se'd left, but the receptionist assured me all my notes had been sent over. My current doctor says he can see when I started having the jabs, but has no reason for them noted.
If as you say he can apply for the details of original blood tests at the pathology lab they were taken to, I'll ask him to do that. Thanks for all your advice!
You shouldn't need to tell him to get details of original blood tests - he should be doing that himself really!
Definitely see him again and tell him to get hold of results as you are not prepared to risk your health due to an administrative error on his part. If he doesn't - then as said before, see another GP, complain to practice manager etc.