Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

“He’s worried sick”

by | Jun 22, 2017 | 5 comments

“He’s worried sick”

Jun 22, 2017 | Patient Stories & Support | 5 comments

From the very first day that we started our helpline I’ve been aware that there is a serious problem with the way in which patients with Pernicious Anaemia are treated. Very few patients are able to receive an individually tailored treatment regimen based on their own personal need. I say very few because there is ‘good practice’ out there where members tell us of their physician allowing them to have their replacement therapy injections whenever they need them; but these lucky patients are, unfortunately, in the small minority of patients.

And there is another problem that has made itself known to us. It causes upset, anxiety and confusion not only with the patient but with the patient’s family as well. It’s when the patient is told that he or she no longer needs the injections because a recent blood test shows that the serum B12 is high or very high.
It’s hard to imagine (from my point of view because I’ve never experienced it personally), just how worrying this must be for patients. They are told, when they are, (eventually), diagnosed, that they will need B12 injections for life; and that without the injections the patient would die. Happy days indeed; the patient can be kept alive and will hopefully lead a normal life – although we know that that isn’t always the case.
Then, suddenly, the patient is told that he or she will no longer be able to have the injections that has been keeping them alive for so long. It leaves the patient feeling stunned, confused, worried and anxious. And it should never happen.

I took a call yesterday firstly from the patient himself, a 83-year-old man who had been receiving his injections every two months for over thirty years.
“They’ve told me I no longer need them because my levels are fine” he told me with a discernible level of anxiety in his voice; “but my old doctor told me I would need them for life”.
I reassured the gentleman that he will need them for life and that he needed to go back to his doctor, tell him or her that he has spoken to the PA Society and that we’ve told him that his injections must not be stopped and must be reinstated as soon as possible.

An hour later I took another call, this time it was from the elderly gentleman’s daughter.
“I’m confused” she said, “he has Pernicious Anaemia and I thought the injections were for life”.
I assured her that that was the case and told her to print out the ‘Treatment is for Life’ leaflet from the online library, take it to her father’s doctor and tell her we, as a society, had given it to her. She thanked me and then, before she hung up, “my father’s been sick with worry for the last seven weeks and he has all the symptoms back”.
It shouldn’t happen, but it does, and, as is often the case, those who are vulnerable – the elderly and the infirm, often suffer the most.

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  1. Karin Hewer

    This happened to my father ,sadly at the time he believed that the medical profession knew what they were talking about better and only recently 4 years after his death have I learnt it should never have happened.I will never know if the cancer he got was as a result of the lack of this essential vitamin.My grandmother had pernicious anemia.My aunt is classified as having a rare disease and I have argued for her to have B12 injections which she is now having.I do wonder if her disabilities have all been caused by a problem absorbing b12 .I am having symptoms which have been diagnosed as fibromyalgia even though I did question if it could possibly be pernicious anemia but because I am not anemic and my B12 was actually high this was discounted.

  2. Mar Elle harvey

    I was diagnosed in 2001. I am 45years old. My go stopped my b12 injections every three months, three years ago. I now can hardly walk the pain is terrible. I’m depressed numb feet and hands. Short of breath with chest pains . The hospital have twice wrote to my go insisting to restart the injection. Only know are they starting to listen . I had one injection last week. But I am v worried I know have perminant damage. Plus how do I go about getting tests to see if I have? Worried is an understatement. I’m a single parent with three young children.

    • Martyn

      Please telephone the office between 8:30 and 12:30 Tuesday, Wednesday, Thursday & Saturday. 01656 769717

      • Kay Webb

        Hi Martyn
        I am a member of the PA Society and whilst I have the luxury of being able to get supplies whilst on holiday, others I am sure cannot. I am sick of reading how helpless people feel and it’s at a stage now where I am wondering what would it take to buy from Germany and start a subscription service supplying needles and B12. I am in Crete at the moment having just purchased my supplies and am feeling there must be more I can do. I would appreciate some feedback.
        Kind Regards

      • Martyn Hooper MBE

        If we did that we would be breaking the law. The British Medicines Act of 1967 states quite clearly that any medicine that is injected has to be prescribed by a doctor. We are not doctors and so cannot prescribe injections.

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