The Meeting with NICE

We recently let you know that we would be having a meeting with the Director of Guidelines at the National Institute of Health and Care Excellence.

The meeting lasted 45 minutes and it was reassuring to know that the Institute in general, and the Director and his colleagues in particular, are fully aware of the problems with the way in which the B12 status of patients is assessed and the severe limitations of the assay used to diagnose any deficiency as being caused by Pernicious Anaemia.

Members of this society can be assured that these issues are now firmly on the agenda for possible future investigation by NICE. But don’t expect anything soon; any set of guidelines will take at least three years to develop (at a cost of around £750,000).

NICE Guidelines take many forms; NICE guidelines (clinical, social care, public health, medicines practice), technology appraisals, Interventional procedures, Medical Technologies, Diagnostics and Highly Specialised Technologies. And we, as a patient support group, are competing with many other groups requesting that the Institute investigates the problems faced by patients.

We want NICE to investigate the problems associated with the diagnosis and treatment of Pernicious Anaemia with a view to them producing a set of guidelines that will tackle the problems faced by patients.

The society’s offer of help in any way was warmly received and so we fully hope to be involved in any Guideline developments in the future. We will keep you posted of course of any developments!

5 Comments

  1. Marilyn

    This is wonderful news that finally patients will have a better chance of being diagnosed & treated accurately to prevent further deterioration.Hopefully this will also increase a medical awareness of this vital nerve destroying vitamin as there is a worldwide knowledge deficit of recognising vitamin deficiencies & their life threatening consequences.

    Reply
    • Amanda

      I am pleased to hear that you were listened too. While it may take some time, ( which is a shame for all of us suffering now ) it at least has been acknowledged and in time hopefully changes will be made in accordance to the suffering that is needlessly occurring amoungst those who are misdiagnosed, due to lack of knowledge, and flaws in current Assays, also treatment of PA, and B12 deficiency which is currently by far inadequate. Leaving sufferers very ill, and very symptomatic. It will be a happy day when the level of suffering is alleviated by better treatment based on the patients symptoms, which in reality is far more regular injections, with co factors in place, to get vitamin and minerals that work in combination with B12 to optimum levels, for healing to take place, and regular monitoring in the form of blood tests, ( not for B12 but co- factors. ) personally I find I need B12 on a weekly basis, sometimes more often sometimes less. If it takes 3 years, then at least it will help future generations, and those already suffering, and of a young enough age to see the changes and benefit from them. This has to be a good thing with more and more people being aware of B12, with good work being done by charities and groups highlighting signs and symptoms, and the problems, more people aren’t in the dark so much, and who are pushing for testing and being finally diagnosed, instead of being told it’s all in their head! Much work needs doing, however I am very hopeful for the future. Well done. Thank you. X

      Reply
  2. Aileen

    Even though it’s going to many years to get there, without the PAS it wouldn’t be happening. The many changes proposed it’s going to help the people trying to get diagnosed and those of us trying to keep there injections. I would like to thank the PAS for all the work that they do behind the scenes for us all.

    Reply
  3. Mary

    Wonderful news ! Yes it’s going to take a long time intil we see improvements in the diagnosis and treatment of P. A. But the ball is rolling thanks to the PAS in general and Martyn Hooper in particular ! A massive thank you to all .

    Reply
  4. Barbara

    So glad this major problem of diagnosis/treatment is finally being taken seriously – Thank You for all the effort you put in on our behalf!

    Reply

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  1. Recent NICE Guidelines | Martyn Hooper - Chair of the PAS - […] will keep pressing for a new Guideline on Pernicious Anaemia to be produced, but, as is always the case,…

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