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.
Do they recognise that too many patients have false negative results. ? so are then denied injections
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.
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
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.
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.
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
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
At least they listened, so a big thank you for your efforts on behalf of all sufferers.
Thank you for all your efforts on our behalf
At last …. but ‘a three to four year period’!!!!
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 🙁
Thank you for flying the flag. Such a serious condition but such a long wait & needless suffering.
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.
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.
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.
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!!
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
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……