NICE Guideline

Important Step Closer to New Guideline

27 May, 2017

After nearly four years of lobbying we have received an invitation to meet with Prof. Mark Baker, the Director of the Centre for Guidelines (CfG) at the National Institute for Health and Care Excellence (NICE).
This invitation follows on from a request for NICE to thoroughly review the way in which Pernicious Anaemia is diagnosed and treated and is the first step towards the production of Guidelines that will hopefully recognise the inadequacy of the current assay for determining any B12 Deficiency and the inaccuracy of the Intrinsic Factor Antibody Test that is used to determine whether any deficiency is caused by Pernicious Anaemia.

According to the NICE website the CfG ‘is responsible for designing and operating methods and systems to produce clinical guidelines for the NHS. CfG is also responsible for the work of the Medicines and Prescribing Centre including summaries of evidence on new medicines and unlicensed and off-label medicines and the management of the contract for the British National Formulary’.

NICE have always been willing to listen to what we have to say” says Martyn Hooper, the current Chairman of the PA Society. “We have had several informal meetings over the past few years, but it was only after attending a NICE Training Event just before Christmas last year that the procedure for requesting Guidelines were identified” he says.

The meeting will be arranged on Monday and will probably take place in Manchester.
The main purpose of the meeting will be to raise awareness of how the diagnostic failings are affecting patients. The evidence of the inadequacy of the tests is now universally recognised by experts in the field, and we will be providing NICE with a list of Medical and Scientific experts who are friends of this society and can be consulted for their advice”, says Martyn.

11 Comments

  1. Frank Hollis

    Well done Martyn.

    I’m so glad the PAS is actively working with the authorities to change things for the better. So much more effective than some alternative strategies.

    Reply
  2. Dermot

    I welcome this important step to improve testing and diagnosis. I hope it will be followed up by further meetings focusing on the inadequate ‘one size fits all’ treatment guidelines too. Thank you PAS for constantly fighting to improve the quality of life of PA sufferers.

    Reply
  3. Teresa Wooldridge

    Well done Martyn for all your hard work

    Reply
  4. susan childs

    Please can you raise the need for them to allow more frequent jabs as well especially as the disease progresses. Many of us need monthly or more often but grow weary of the endless fight. Alternately get them to allow us to buy off prescription in uk and self inject. Treatment as well as diagnosis needs to be better . Many of us DO NOT find oral or sublinguals effective.

    Reply
    • Martyn Hooper

      We are now ready to submit our evidence to the BNF re. frequency of injections. There are two issues we are dealing with – Firstly the problems with diagnosis and secondly the problems with treatment. New papers from the conference in Denmark address the problems with the one size fits all treatment. It is a step by step approach. Please recognise that there are two separate issues – diagnosis and treatment. We are doing our best in very difficult circumstances.

      Reply
  5. Celia Bowhay

    An amazing amount of hard work has at last been acknowledged. Well done Martyn and thank you for all your efforts in bringing this matter to the stage it is at.

    Reply
  6. Jocelyne Hollingworth

    Thank you so much Martyn for all the hard work you have done and carry on doing so that B12 deficiency and PA are recognised as the serious health problems they are as well as the ineffective tests used to diagnose both.. Let us hope there will be a change in attitude in medical professionals soon and that patients finally get the treatment and support they need. Much luck fr Monday.

    Reply
  7. Barbara

    The best thing I ever did was join this amazing organization !
    Thank you, Martyn, for all that you do on behalf of us all!

    Reply
  8. Susan McMillan

    The best thing I ever did was join this amazing organisation too !
    It’s all a lot to absorb but I’m a keen student and very proactive.
    Conversely Med Pros tend to be reactive !!! Not my style !!!
    Thank you Martyn (I’m addressing you like I know you?)

    Reply
  9. Anonymous

    Can’t wait to hear how the meeting went with Prof. Mark Baker. Blog it as soon as you can! Be patient all…the two main issues (diagnosis and treatment) have been heard but they will now be considered 🙂

    Reply
  10. Mary Epke

    Thank you Martyn yet again . I do realise how difficult it is dealing with the medical profession on the subject of Pernicious Anaemia , it’s diagnosis and treatment . You are doing a marvellous job for us and all the people out there who are suffering . I wish you all the strength you need to promote our cause .Thanks a million !

    Reply

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