As I’ve said previously, it is rare that a day passes without us taking a telephone call from a member whose injections have been stopped.  We had one such call yesterday from a very distraught patient who had been diagnosed as having Pernicious Anaemia 18 years ago.  On Monday of this week she was told, by telephone, that because her levels were now 230 she no longer needed her three-monthly injections.  She was so upset, confused, frightened that at one point I had to speak to her husband as she was in no state to speak to me.  It was the usual story I’m afraid.  She went back to the doctor and asked for more frequent injections.  The doctor told her that he would check her serum B12 levels and make a decision based on the results of the test.  The test came back at 230 and that’s when she received the telephone call.  Bad eh?  It gets worse.  When I resumed talking to the member she told me that her peripheral neuropathy was getting worse and she now had real balance problems and had to use a stick to get around otherwise she kept falling over.  She had been told several years ago that the pins and needles and slight numbness in her feet were probably due to her getting older.  Since then her feet are completely numb and this is spreading to just past her knees.

I did what I always do, write her a letter that she can show her GP – the one that states that if the patient has Pernicious Anaemia then the injections are for life (as per the Guidelines) and that if there is neurological involvement then the patient should receive injections every other day until ‘there is no further improvement’.

Oh! And the ’80’ in the headline?  That’s how many candles will be on her cake to celebrate her birthday – today.

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Comments

3 Comments

3 Comments

  1. jill

    oh poor poor lady – its a disgrace that she is left to suffer in this way. why oh why are gp’s so unable to grasp the need of us with a PA diagnosis.

    Reply
  2. Paddie

    That is a terrible story.I wonder where she lives? My neuro symptoms sound similar to hers and are progressing although I am on monthly jabs. Now feeling return of symptoms after 3 weeks. Going for jab tomorrow and will discuss feelings. So far my GP and practice nurses have been brilliant. I am supposedly waiting for a neurology assessment requested by physio over 12 months ago. Nothing on my practice records so far and I have not chased it up–particularly because of the ongoing waiting time debacle in BCUHB!!

    Reply
  3. ellizajoe

    I feel very angry towards these doctors who are making people suffer over a vitamin that’s life saving. So can you tell me please why ALL doctors dont follow the actual guidelines you state above. And why aren’t they stopped from getting away with it. Because this is just the same old story over and over.

    I self inject, I won’t take a slow death anymore on the national death list.

    P.A suffer 18 years. I’m 51 and in control.

    Reply

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