Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

Recent Guidelines

by | Aug 28, 2017 | 3 comments

Recent Guidelines

Aug 28, 2017 | 3 comments

I’ve been busy reading new Guidelines for the National Institute for Care and Health Excellence (NICE).
I am a Registered Stakeholder of NICE as Chairman of the Pernicious Anaemia Society. And as a Registered Stakeholder I am often asked to comment on new or existing Guidelines that are produced by NICE that summarise the characteristics of a disease or condition; these Guidelines are the result of a consultation process that takes around three years to complete at a cost of around £750,000 though the process can take longer and cost more. In effect these Guidelines are the result of senior clinicians and other scientists conducting a thorough review of how the particular disease is diagnosed and treated.

Raising Awareness

I have been busy over the past ten years in trying to get NICE to thoroughly review the way in which Pernicious Anaemia is diagnosed and treated which is, after all, the prime long-term objective of the society. We know that there are serious problems with the way in which PA is diagnosed and treated; and, following our continual efforts to raise awareness among medical professionals about these issues it is now generally acknowledged among senior health professionals that there is a need to conduct a thorough review of the diagnosis and treatment of PA, even if there is no such acknowledgement among most, though not all, primary and secondary healthcare professionals.

Guideline on Neurological Conditions

I continue to ‘raise awareness’ of these problems and one of the ways in which I can do this is by having an input into the NICE Guidelines process as the representative of a reputable patient support group. In the last three weeks I have commented on the latest Guideline on Neurological Conditions where I noted that in the whole document there was only one mention of B12 being a cause of peripheral neuropathy. I commented on the fact that left undiagnosed and untreated PA leads to Sub-Acute Combined Degeneration of the Cord and Peripheral Neuropathy. And I took the opportunity to raise awareness of the limitations of the current serum B12 test and the almost useless test for the Intrinsic Factor Antibody. I don’t know how my comments were received, or whether it will have a positive effect on any amended guideline, but I had the opportunity to give my opinion which has been acknowledged and hopefully will stimulate further discussion.

Guidelines on Psychosis and Schizophrenia

This morning, I made further comments on the new Guidelines on Psychosis and Schizophrenia where I pointed out that left undiagnosed and untreated B12 Deficiency leads to patients experiencing Psychotic Episodes (as highlighted in my latest book). And I once again pointed out that even if every patient suspected of suffering from Psychosis and/or Schizophrenia had their B12 level assessed there are serious problems with the serum B12 test and that there is no consensus on what constitutes a deficiency or sub-clinical deficiency. Can you see what I’m doing? I’m simply raising awareness of the problems with the diagnosis and treatment of Pernicious Anaemia and, at the same time, possibly, no, hopefully contributing in a small but significant way to the way in which Psychosis and Schizophrenia are diagnosed and possible treated.
Again, I don’t know if my feedback will have a profound effect on the new Guidelines, that will only be known when the final versions are produced; but I’m keeping my fingers crossed.

Pernicious Anaemia

I will keep pressing for a new Guideline on Pernicious Anaemia to be produced, but, as is always the case, we are fighting our corner against some major, influential and rich (in terms of resources) patient support groups. We’re punching above our weight, and I know, from recent telephone conversations that NICE are listening to us, but it is a continual fight that I’m sure we will one day succeed in winning – we have to stay optimistic otherwise there is no hope. I’ll keep you informed of any developments I hear of.

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  1. Mrs Kay Norcott

    Thank you for all your hard work on our behalf. It is very much appreciated.

    • Amanda Griss

      Thank you for all you do. I am a new member. I have Ehlers-Danlos syndrome and
      postural tachycardia syndrome and a whole host of B12 deficiency symptoms with B12 in the indeterminate range -208. I cannot get treatment because I don’t have macrocytosis.

      Since 2012 I’ve been to many hospitals including UCLH & RNOH Stanmore and never had B12 checked. They exclude RA and lupus and then diagnose EDS. My concern is many with EDS may be worse due to undiagnosed B12 deficiency. I believe these patient groups – EDS and PoTS should have B12 blood tests. My plan was to write to the consultants but wondering if you have any influence?


        I was diagnosed with B12 by a dermatologist.
        My Dr’s over the 20 years before just told me “your dying and we dont know why”.
        I have a long history of illnesses back into my primary age starting with not growing properly.. by the time i was 35 i had a medical history that needed its own room for storage. Yet everything i had was a condition not in my mind. I have read news reports of young people in their 30’s dying of dementia. What !. These people all had by symptons.
        Now on 2.weekleyB12 injections all of my ills have stopped appare from the ones that where permanently damaged by B12 deficiencie. Like my hearing . Eyesight. Thyroid. Skin. Overies. Taste. Smell. Thats about it.
        Now i only see my dr if my children are ill or to have B12 injection. .i am awair this B12 condition could be my sons health issues too. But i am also aware that the NHS are drawing the curtains on this deficiency too. I have explained in writing to my sons how this condition can now kill under the guidelines of BMG. Or the Dr hand book guide lines..

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