I have now asked members to put down on paper their stories of wrong or mis diagnosis and poor treatment. Hopefully this will prove to be more evidence that there is an urgent need for the way in which Pernicious Anaemia is diagnosed and treated to be reviewed.
Below is a selection of the stories in condensed form and with the original names having been changed to protect patient’s identities:
The Lorry Driver’s Christmas. “My son is 36 yrs old and he might as well be 80. He is struggling to keep his job as a heavy goods vehicle driver. He is constantly tired, comes home from his work and usually goes straight to bed without even bothering to eat anything. He has absolutely no social life. Last Christmas he finished work at 4pm on Christmas eve, went to bed and didn’t get up until 4pm on Boxing Day. He struggles to find words, is irritable, cannot concentrate and yet his GP just tells him that he is slightly depressed and that he needs to ‘get a life’. I am watching my son die a slow horrible death. His grandmother had Pernicious Anaemia and I suspect he has it too. He has had blood tests and they show that his B12 level is 152mcg/ml. The doctor has told him that he cannot have any B12 until his levels fall below 150. He will be next tested in September”.
Bill’s Ruined Holiday.“They offered me Anti-Depressants when I asked for an injection at ten weeks instead of twelve” says Bill, 72 yrs old from Birmingham. “I have been fighting this for fifteen years. A few days after the injection I feel fine, then after about a month I start going downhill again. When the nurse took blood after ten weeks she was horrified to see that it was over 500 and so refused to give me another injection until another three months and two weeks had passed. So I had to go begging the doctor to at least re-instate the three month regime. Three weeks ago, just before I went on my two week holiday I went to him and asked if I could have the injection before I went on holiday – the three months was up the day after I got back from Spain. I even offered to pay him anything he wanted just to give it to me now and then. He refused and I had a horrible time away. I even took the little glass bottle with the injection in it in case I collapsed. The doctor told me he couldn’t possibly give it to me at ten weeks because ‘it will thicken your blood and you could easily die'”
The Inmate. I received a letter from a patient who is currently in custody serving a prison sentance. The letter was the usual stuff about not being able to access more frequent injections and the prison doctor suggesting that he might be depressed. I had to send him the information pack that we send to new members with the usual information on the different supplements that he could be taking – although I know well enough that any sub-lingual lozenges, or oral sprays will probably not be allowed by the prison authorities. From news stories about prison life it is probable that he would be able to access heroin much easier than getting hold of an injection of Vitamin B12. What does that tell you?