Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

The Double Incontinent

by | Nov 17, 2017 | 3 comments

The Double Incontinent

Nov 17, 2017 | Pernicious Anaemia, Personal

So, here I am, presenting myself at my surgery to receive my flu jab (I know that there are people who are completely against this practice but I have consulted widely with healthcare professionals including pharmacists and nurses and have been convinced it is a good precaution). Anyway, my name is called and I go into the nurse’s office.
“You’re the Pernicious Anaemia Society man aren’t you?”
My fame continues to spread eh?
“I am”
“I’m so lucky to be in a surgery where we have some leeway with how we treat patients and we don’t always follow a one rule for all protocol.”

I am hearing of this all the time, that nurses and doctors are being restricted in how they treat patients. Indeed, this lunchtime I met with a number of doctors who have told me that their NHS Trust has instructed this particular practice to stop deviating from the BNF guidelines and treat patient with Pernicious Anaemia only every three months in order to meet prescription targets. The frustration of the doctors was evident – someone with a spreadsheet is telling them how to respond to and best treat their patient.
I digress. Back to the Flu Jab nurse.

“A District Nurse in another surgery has an elderly patient who is being cared for by her daughter. One month after having her B12 injection she becomes urinary incontinent and a month later she loses control of her bowels. This means the daughter is dealing with a double incontinent patient for a month before her mother receives her injection.
“She has begged the nurse for monthly injections and of course the nurse is sympathetic, but the GP refuses to depart from the BNF because of prescription targets.
“Our doctors are much more flexible but they are being monitored from above”.

I don’t think I need to say any more. The story speaks for itself. But what I will say is that the report requested by the BNF on the treatment of patients was submitted in early July. We are still waiting for a face to face meeting with the editorial team which doesn’t mean that we are being ignored; rather, it means that the BNF have to follow a strict set of protocols before any wording is changed. We will keep up our campaign to get treatment based on individual need.
In the meantime, just think how that elderly lady feels being cared for by her loving daughter when she knows that, with better treatment, both her and her daughter’s quality of life would be significantly improved with individually tailored treatment. Oh! And remember – it’s a vitamin, not an expensive drug.

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  1. Rosemarie Shortell

    Hi Martyn
    There are some counties where proven B12 sufferers are not even given the BNF Guideline treatment. Gloucestershire is one.

    • Jane Keevill

      I am one of those in Gloucetershire. Today at a diabetic appointment the nurse said to me that they have strict protocols to follow and if they were to increase the injections they wouldn’t be able to deal with it all, there would be too many. My treatment 2 years ago was 5 injections over 2 weeks and then nothing for 6 months. I was so ill at 140ng/L I began to inject myself and now I get no help at all from my GP. I was diagnosed 40 years ago in Germany with PA but had no idea I needed to keep up with the injections I had while living there. Now my GP is saying blood tests show no PA.

  2. Bernita Quoss

    Surely the iincontinences are symptoms of neurological damage!


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