NICE Guideline

We’ve done it!

17 Oct, 2018

NICE Guideline on the Diagnosis and Management of Pernicious Anaemia

Today (17th October) we received an email from the Director of Guidelines at the National Institute for Health and Care Excellence (NICE). They have been formally requested by NHS England to produce a Guideline on the Diagnosis and Management of Pernicious Anaemia.
This decision fulfills the main aim of the society which was to get the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed. The NICE Guideline will hopefully achieve this aim.

Mission

“When we embarked on our mission to get the problems with the diagnosis and treatment of Pernicious Anaemia thoroughly reviewed it was obvious that we would have to work with Health decision makers to achieve our aim” says Martyn Hooper, Chairman of the society.
“Thankfully there is an organisation in the UK which would provide the means to bring about that review”
“It has been twelve years since the society was registered as a charity and in those twelve years we have provided information, advice and support to our members on a day-to-day basis. But always in the background was the work to get the problems with the diagnosis and treatment thoroughly investigated. We have worked with the team of professionals at NICE to ensure that our request was taken seriously, established relationships with decision-makers and provided evidence and other information when asked” he says.

Patient-Centred

It will take NICE more than three years to produce the Guideline, and, because NICE is patient-centred the society will play an active role in the formation of the new Standard. As well as involving patients in the process, academics, medical professionals and clinicians will all be invited to contribute.
“We have an enviable list of contacts who are experts in their fields and who form our ‘round table’ of professionals” says Martyn. “These contacts will be passed to NICE who will invite them to take part in the formation of the Guideline.”

This is a serious development which will hopefully reduce the time taken for patients to be diagnosed and ensure adequate treatment. We would like to thank all of those who have supported us over the past years. We’ll keep you updated on the development process.

23 Comments

  1. Katherine Cotter

    What a fantastic achievement. I believe I’ve had this for over 17 years but only recent been diagnosed. This has made my day!! Well done to all.

    Reply
  2. Claire cummins

    Fantastic work mate!

    About time this happened. Xx

    Reply
    • Claire Jones

      Well done you put in a lot of long hours and hard work

      Reply
  3. Michael

    A huge step ……….well done persistence paying off ……..

    Reply
  4. Jayne homer

    Well done, we can all try and improve our health and those yet to be diagnosed. We are all different and should not be pidgeon holed the way the NHS treat us.

    Reply
  5. Marie Scott

    I feel very emotional reading this.Amazing.Well done ❤️

    Reply
  6. Jane

    Absolutely fantastic, I can’t wait to show my Doctor !

    Reply
  7. Jennifer

    This is wonderful news

    Reply
  8. Susan

    Thank you Martyn for all your hard work and support, without you I do know where I would be – I certainly would not be well enough to work but why do we work to pay taxes for the incorrect diagnosis and treatments? It has taken a long time but I hope they can make the changes quickly after all George Bernard Shaw had pernicious anaemia so it has been known since 1920s.

    Reply
  9. Barbara

    This is such a fantastic step forward for everyone suffering from this destructive condition. Thanks to you amazing dedication ,
    Well Done! Martyn

    Reply
  10. Lesley

    Great work Martyn, volunteers and supporters. Huge victory for PA sufferers. Let’s hope for a tidal wave of further success.

    Reply
  11. Leanne

    Incredible! Wonderful news and so relieved. I do hope there will be far better awareness of more helpful treatment as a result and…. swiftly.

    Reply
  12. Paulein Newton

    Fabulous news and we are so grateful to you for your hard work and all your endeavours to achieve this.

    Reply
  13. Debbie

    As a newbie to all this I am so pleased that Martyn and the team’s dedication and unswerving tenacity has provided this terrific outcome. There can be no greater legacy in life than to provide the groundswell of life changing advancement in knowledge to better the lives of so many. Wonderful news, and very well done!

    Reply
  14. Fiona Sloane

    I emailed my MP about this but as health matters are devolved to Scotland it’s not her area. Are you planning to speak at the Scottish Parliament?

    Reply
    • Martyn Hooper

      We’ve made presentations to the Scottish Parliament in the past. As this is not a policy area but an awareness raising exercise Westminster MPs from Scotland should attend. This is calling for a thorough re-evaluation of how PA is Diagnosed and Treated which is beyond the remit of any of the devolved governments

      Reply
  15. Debbie

    Fantastic news, thank you so much for all your hard work.. future generations will have a chance at being diagnosed and subsequently receive the correct treatment.. 😊

    Reply
  16. Carole Brown

    A wonderful achievement PAS. Thank you for your hard work.

    Reply
  17. Mary Arthur

    well done, persistence has worked, your hard work has ensured the proper treatment for everyone in the BRITISH ISLES.

    Reply
  18. Cheryl Mattey

    Massive amount of hard work finally paying off. Well done, Martyn and co. Now all I need is a diagnosis of PA…… which is a whole other thing.
    I met up with my cousin, who also has B12 deficiency, but who is coping (more often than not) on a regime of 1 injection every 2 months. She said to me: “Did you think you were going mad?” – Yes, absolutely! Now I’m injecting every other day, I’m getting better. It’s taken over a year so far, but slowly over this period, I feel a little bit more like me (with occasional blips). Not there yet, not giving up either !

    Reply
  19. Eve Davies

    First of all, it is a wonderful achievement, all down to your perseverance Martyn. Sadly, it just shows how long it takes to “get anywhere” and highlights the way in which the “Healthcare System” has ignored our pleas for help.
    It IS no doubt progress but I cannot help thinking – 3 years ! How many more sufferers have to deteriorate before they admit they have “got it wrong!”

    Reply
  20. G J

    Well done, Martin, and others at the PAS. I have been suffering from many PA symptoms for years, my mother had PA and I have low thyroid but my B12 blood tests are always returned as ‘high’, so the GPs won’t treat me.

    I have just had a neurology appointment (4 years since reporting problems with my feet) and have been told that yes, I do have peripheral neuropathy, but no, it can’t be due to PA, because my B12 test results are high.

    For 6 months I have used a B12 spray, which has helped, and two weeks ago I paid privately for a B12 injection. Two weeks in which the fog has started to lift…but how to present that to my doctor?

    Reply
  21. Susan Evans

    I have a B12 deficiency 140 -165 and have been told to take iron tablets and vitamin d tablets I feel extremely tired all the time have pins and needles and burning in my foot and legs struggle to walk and often stumble I’m depressed have mood swings but my Dr was quite short with me! What can I do?

    Reply

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