meeting with NICE

Meeting with NICE on the Guideline

10 Aug, 2019

This week we met with a representative from the National Institute for Health and Care Excellence (NICE).
The meeting was very productive and positive as we made the case for NICE to produce a Guideline on the Diagnosis and Maintenance of Pernicious Anaemia.
Although NICE have accepted that there is a need for a Guideline they haven’t yet commissioned it into their workstream. This meeting was about what we can do to get the guideline commissioned and there were several suggestions that we will be following up on.

Getting NICE to produce a Guideline will mean that over a three to four year period NICE will consult with stakeholder groups, including ourselves, and thoroughly review the way in which Pernicious Anaemia is diagnosed and treated. This will mean that they will address the problems of poor tests not only for B12 Deficiency but also the serious problem with the test for true Pernicious Anaemia – the Intrinsic Factor Antibody Test.

We know that NICE consulted with the British Committee for Standards in Haematology (BCSH) when we first requested a Guideline but the BCSH presumably replied that it was beyond their remit and they could add nothing to their own Guideline issued in 2014.
The meeting has given us some hope that the Guideline will be produced in the near future. Our thanks to NICE for engaging with us and listening to what we had to say.

22 Comments

  1. Michelle Cheatley

    Do they recognise that too many patients have false negative results. ? so are then denied injections

    Reply
    • alishia powell

      Exactly! Too many doctors treat people who have hereditary PA (which is INCURABLE) give them b12 shots, test their levels and tell them they are cured, or don’t need shots, yet b12 only remains in the human body for 48 hours, and our bodies do not produce it, nor can we ingest it. I have Bermer’s, my grandmother had PA, they took her off her b12 shots, said it was her kidneys and she was fine, she died a year later of dementia and heart problems. She was so out of it. Yes, she was 94, but her mother was nearly 100 when she died, and had 3 different types of cancer. I think the doctors shortened her life, or at the very least caused her dementia to progress rapidly by telling her she no longer needed shots.

      Reply
    • Ali BESWICK

      I was diagnosed with PA in 2005, I lack the IF so therefore cannot take b12 from dietary means, I also have RA. My Gp was quick to act but I had already suffered neurological damage and also damage to my heart. He did the loading doses then I had b12 injections every 3 months. I was still symptomatic even with 3 monthly injections. It was decided by my then gp that I should have b12 injection every 4wks for life. I became less symptomatic but at week 3 I was more than ready for my b12 injection. Sadly my Gp retired, my nurse also left the practice. I now have another Gp who is not my appointed Gp making decisions on my medication. I went for my monthly b12 yesterday only to be told by the new nurse that the other gp had said it is dangerous to my liver (re:- NICE guidelines apparently!) To have monthly b12 injection and I was to have it every 3 months from here on in. I am at a complete loss as to where to turn, who I ask for help and I’m in a total state of anxiety not to mention worried for my health. Please can anyone offer advice?
      Thank you in advance.
      Ali. X

      Reply
      • Christopher Monk

        The NICE guidelines state that injections should be once every 2 months where neurological symptoms are present, so this GP is not up to date. Also, he’s plainly wrong about B12 damaging your liver. He has likely misinterpreted info about certain liver conditions (e.g. cirrhosis) which produce elevated B12 serum levels; he seems to have it ‘arse for elbow’. My GP has just agreed for me to have injections once a fortnight. I have PA with neuro symptoms and can’t get past about 2 weeks before symptoms resurface. My GP surgery takes the attitude that if you need it, you need it. My suggestion is you make an urgent appointment with the GP and ask for written evidence to support his decision to change your treatment. You may wish to take someone with you for support. And you may also wish to send a letter to your practice outlining your disagreement with the GP’s arbitrary decision. Good luck.

        Reply
        • Ali BESWICK

          Christopher,
          Thank you so very much for all your time and such important information. I really do appreciate it. I’m feeling very poorly now. My b12 would normally have been due 2days ago.
          I shall do what you have kindly said and keep you updated.
          Many, many thanks.

      • Aimee

        Hi Ali, it sounds awful what you’ve been through. I went through the same thing my doctor left the practice and new doc would only give me 3 monthly which was not enough. I have started self injecting it has improved my quality of life tremendously, if you want to read up just Google self injecting b12 subcutaneous, health unlocked have some great info on the site

        Reply
        • Ali BESWICK

          Aimee.
          Bless you, I’m sorry you’ve been through the same. Self injection seems to be the only way forward for us. It’s the principle of the withholding/changing timescale of treatment that frustrates me. There seems to be a widespread lack of understanding within the medical profession, where Pernicious anemia is concerned. The surgery have telephoned me today and are adamant they will not allow me to continue with monthly injections. (Ironically, it would have been due two days ago) I tried quoting the NICE guidelines and although the receptionist was empathic, she kept repeating the fact that the particular gp who caused the scenario has stressed that because my serum b12 18months ago was slightly over the higher level(I’d had a b12 injection a few days before the blood test) that I am at risk of permanent nerve damage. I have permanent nerve and heart damage anyway, because my PA wasnt picked up sooner. I’m totally confused now and at my wits end with it all.
          I’ve no idea who I can contact for help to reinstate my 4wkly b12 injections. They just about kept me going. I have managed to order all I need to SI though so that’s a positive.
          Thank you again for your kindness.
          Best wishes
          Ali. X

      • Jobeth

        For all the work the PA Society does I am grateful. However despite your work all the GPS and haematologists I’ve seen in my 25 years of suffering with Pernicious anaemia not one has helped me adequately. Finally I had the realisation after many years of ill health
        that the medical profession would not help and that I’d die if I didn’t self inject b12. I’ve no hope no faith in anyone except myself after all this time it’s actually worse. It’s all too slow no one is helping us.

        Reply
  2. Avis Hannon

    At least they listened, so a big thank you for your efforts on behalf of all sufferers.

    Reply
  3. Anne

    Thank you for all your efforts on our behalf

    Reply
  4. EILEEN SMYTHE

    At last …. but ‘a three to four year period’!!!!

    Reply
    • San

      Even if we could purchase over the counter like in other countries would help. Monitoring self injectors. I really don’t understand why they keep holding back on this! I have PA and I give up 🙁

      Reply
  5. Max147

    Thank you for flying the flag. Such a serious condition but such a long wait & needless suffering.

    Reply
  6. Anke

    Thank you for the work you all do on our behalf. Very much appreciated even though it will take some time to see / experience any results.

    Reply
  7. Jill curtis

    Grateful for the work you do to put our case. Oh my, but how slow it seems when we know what we need… and when do we need it…. NOW! It makes me so angry that I can buy B12 in so many different countries – and so cheaply too.

    Reply
    • Cat E

      I’m at a loss. I had biatric surgery around 2003. And was told I would need to take supliments for life. I have been having bit D. Iron D3 etc but still had issues with absorbing. I had an iron infusion a bout a year after but then my Dr at Hope Hospital left and instead of dealing with my issues he wrote to my GP. I was feeling ill for years constant fatigue joint problems. Bladder trouble. Forgetting what I was doing. I went to the GP for years and because I have absorbing issues I was put on extra Vit D. And folic acid. I then was taken off my multivitamins as you can buy them over the counter. I couldn’t afford so went without until Hope hospital picked it up and sent a letter to my GP. I was referred to rumertology and told I had fibromyalgia. I already knew I have osteoarthritis. 2 knee replacements. Arthritis in my hands back neck n feet. The memory issues and falling asleep at work was put down to fibro fog and fibro fatigue. A couple of years ago my GP after further blood tests I was told I had B12 deficancy and in fact it was pernicious Anemia and I needed a course of B12 injections then every 3 months for life. I told my dieticion at Hope who printed me a procedure following my gastric bypass and B 12 was supposed to be given to me as well as calcium Vit D etc. I now feel that the memory issues and balance falling over fatigue are related to going 8 years without B12 and it not being picked up. I am looking at retiring due to all this. I struggle at work and a shell of who I was. Im constantly exhausted and my sleep is non exist ant. Restless legs having to self cathitise as my bladder doesn’t empty. I cannot keep up with conversations and I’m watching films thinking I’ve never seen them although my husband looks at me like I’m mad. I have no sense of smell and walk with crutches I’ve had 2 bones removed due to arthritis in my thumbs and tennis elbow. Burtitis in feet. And last month told I have arthritis in my spine. My GP will only let me have B12 jabs every 3 months. This doesn’t seem enough. When I have it in the first week I seem to glow. I also have IBS and no control over my temperature. Is this all B 12 related?

      Reply
  8. Amanda Closier

    Thank you for representing us. I’m struggling right now with another round of anaemia and finally think I’m getting through to my GP that this is not just bad nutrition.

    Reply
  9. Laura John

    I’m writing on behalf of an 88 yr old friend who is on B12 every 3 months since being diagnosed with osteoporosis. (No idea why) At least 4weeks before due she becomes good for nothing, pain and irritable legs, foggy mind and sleeping+++ for starters. Just wondered if it would be safe to take oral B12 for this last month. Asked about having her injection sooner and told NICE guidlines say it’s only licensed for every 3month. Although we’ve been told there is one person in our surgery having it more often!!

    Reply
  10. henok

    I live in Ethiopia I been victim of this for 5 years now it come and go sometimes i researched about my case even tho my case was pa no one knows what it is no one was helping me couldn’t find a help or someone who can understand me and help me with its so difficult living in a world where your self is trapped somewhere couldn’t access my brain 100% always confused having anxiety

    Reply
  11. Shayne

    All too often I hear people being taken off of their B12 injections, and then being referred because they are so fatigued.and feeling ask ill….What evidence do people need to ask for as a reason for their B12 to be either reduced or in some cases stopped by their Gp…?..as they are refusing to give the injection on a 3 monthly basis even with the diagnosis of PA……

    Reply
  12. Lynn Panton

    Both My father and I have PA , dad also has dementia and Parkinson , surgery called to say that they were going to stop dads injections , his been having them for 10 years all because his current levels are just over the threshold … seriously that because his having the jabs , without them his dementia and sleeping would be even worse . I myself have had to fight to get my increased to every 10 weeks instead of 12 as the mental confusion and fatigue and vision issues starts to impair my work at 8 weeks , but I really had to fight for it . There is no allowance for how people are feeling at all . I would like to know why The rest of Europe guidelines saying that below 500 is when they would suggest B12 jabs but in the UK its 300 .

    Reply
  13. Kathryn Glynn

    I have only just joined PAS today, because my daughter does not have an official PA diagnosis and I’m unsure how to get one. (hopefully when I read the whole website I will have a clearer idea). However she has parietal cell antibodies and the NICE guidelines state that 90% of people with parietal cell antibodies will have pernicious anaemia.

    Her GP refused to give her B12 injections. Her endocrinologist asked the GP to trial them for a year at monthly intervals. GP tried to measure levels after loading doses until I argued they would inevitably be high. He insisted on measuring after the second monthly dose and because way over their reference range has refused to continue any B12 injections and persuaded the endocrinologist to do the same.

    My daughter is in her final year at college (hoping to go to University), and she and we noticed that she was able to study better and her cognition was much improved. Who is authorised to give a full pernicious aenemia diagnosis, so that the GP has to give 2 monthly injections at least under the current NICE guidelines?

    How do I argue better: I wrote an email to GP and endocrinologist with everything I could find eg falsely high B12 readings due to unuseable B12 in form of spirulina and other B12 supplementation she had taken for years, no known toxicity levels etc, even NICE guidelines say to not keep testing as they will be high, but then contradict and say can test to see if working!).

    Can NICE guidelines be asked to drop the upper limit if people have already been supplementing (or make it 2,000, which understand we are born with??)

    Apologies for length, but we have a possibly last appointment with endocrinologist early next week, and I need to persuade him to ‘right’ the GP and get her back on injections (which worked much better than supplementation).

    Thank you for any help. I’ve not done this before….as you can tell.

    Reply

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