Opportunity to raise awareness: new NICE guidelines

28 Aug, 2017 | Other News, Pernicious Anaemia | 3 comments

Guidelines on Psychosis and Schizophrenia

We have been busy responding to requests from NICE to give our view on Guidelines being produced by them. Today we were pleased to be able to comment on the Guidelines on Psychosis and Schizophrenia. These Guidelines are not new, but the old set has been reviewed thoroughly and it wasn’t felt necessary to produce any new guideline. However, we have suggested that there does need to be a new set produced because the existing document doesn’t address the fact that some patients who have been diagnosed as having Psychosis may very well be suffering from lack of B12. Hopefully our input will lead to NICE reconsidering their decision not to produce new guidelines.

Guidelines on Neurological Conditions

Two weeks ago, NICE asked us to comment on their new Guidelines on Neurological Conditions where we able to point out that any patient with neurological issues could have low or very low B12. And we also took that opportunity to raise awareness that there are serious problems with the current tests used to determine the B12 status of patients and that there was no consensus on what constituted a deficiency or sub-clinical deficiency.

Pernicious Anaemia

We continue to lobby NICE to conduct a thorough Review of the way in which Pernicious Anaemia is Diagnosed and Treated which will hopefully lead to a new set of Guidelines for the disease. There are some signs that this is now being considered at the highest level though we still have a long way to go. We will, of course, keep you informed of any developments.

Read the full account on the Chair’s blog

3 Comments

  1. Beew

    As my daughter aged 31 has PA for last few years I have taken a lot of interest in the subject (more than she does!!). With my persistence she asked her GP for 8 weekly B12 as she originally presented with neurological symptoms at 28. She referred her GP to the NICE recommendation and am pleased to say GP did her research and agreed.This is a good GP who did this .
    However I think NICE guild lines are a bit ambiguous and should be clearer -that would be helpful.
    You do great work and I am pleased to have become a member a few years ago.

    Reply
  2. Anne Christie

    It is unbelievable that there is no definitive low level in the Nice guidelines. I know that medical science is a very slow moving field but patient/sufferers of this condition are being badly let down and in the meantime many are deteriorating.

    Reply
  3. John Granville

    John Granville on September 17, 2017 at 9:09 pm
    Your comment is awaiting moderation.

    I am in the fortunate position of having a very understanding GP who has done his homework on PA and that sometimes it is necessary to step outside the recommended periods between B12 Injections. I believe no one is more informed of their state of health than the patient. Especially once they know they have and understand PA and the effects on their body. I originally started on a three monthly cycle of injections approximately 15 years ago, I then progressed to Bi- Monthly injections and then to a six weekly interval. I have recently consulted my doctor because my symtoms were becoming progresssively worse after four weeks. My GP listened to me, ordered new blood tests and consulted a friendly Haematologist who agreed a four weekly course of injections would be suitable. My GP wrote up a new presciption and following two courses of monthly injections I now find I no longer experience the fatigue and associated problems brought on by the condition.

    Reply

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