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.
From the latest PAS newsletter pernicious-anaemia-society....
Have posted (briefly) over on Thyroid UK.
Hope very much that works out well.
We are waiting to see what NICE does in creating guidelines for thyroid disorders. However, we are rather concerned that they might ignore the science of the last thirty years and produce same-old same-old unsatisfactory stuff. But at least it is one target for all our fire rather than documents and guidelines all over the place.
Helvella...here's hoping that NICE really will be...and dispense with the 'same old same old' for all our thyroid pals.
From we deficients to all you 'hypos' and 'hypers'...fingers crossed on your behalf 🤞
This has the potential to be really good news. How can we be effective at making sure it is?
Do we have any way of knowing if it will encompasses all B12d? There are lots of us, without the full diagnosis, for whom the title "PA" is just a significant hindrance to getting treatment under the current rules.
I'm usually over optimistic but in this case I wonder, along with others, if it is going to give the guideline-setters another opportunity to emphasise the use of tablets rather than injections as that is a route they are increasingly looking at.
Do we have any way of influencing who is going to be invited to provide them with the information? My concern is that there is an abundance of "academics, medical professionals and clinicians" who are exactly the people who do not understand this problem and are the ones actively standing in the way of people getting the treatment they need.
Is there any way that we can do something positive to make the people who are affected, and represent the thousands of others who are, heard in this opportunity?
Will it be possible to get an address of a NICE coordinator or similar that we can give everyone with the problem an opportunity to send a letter to, or a petition, or something like a form to fill in with their experiences and difficulties, to show an idea of the current problems affecting people?
If it is being driven by the PAS does it mean that non members won't be represented? I know there are thousands who haven't even heard of it and many who haven't joined. Do they get a opportunity to be heard?
I'd be really interested in your views.
I haven't checked but would be amazed if the PAS had not registered themselves as interested parties (or whatever the term is!).
Go to NICE and see if they are calling for any more?
Thank you!
I got the impression that the PAS was supplying names of people who NICE should contact and so had some influence in that respect.
I was wondering if it was possible to go directly to NICE as well - I'll look into it.
Many thanks!
Fantastic news fbirder .
Long awaited and from what Martyn writes in the newsletter, the PAS and those from the 'research round-table' facilitated by the PAS (together with the fruits of their research) and other appropriately qualified and knowledgable research professionals will be involved in informing and developing these new PA diagnosis / treatment guidelines.
So...a great start...sounds like they're all going to very busy...and hurrah for that.
A glimmer of hope on the horizon...and perhaps an eventual end to the terrible sad tales we hear here on a daily basis...😳.
Thanks for posting 👍
Simply marvellous news . 1,000 cheers for Martyn ( 3 are certainly not enough , but are 1,000 ? ) Thanks for posting fbirder.
Really good news! Well done PAS!
But does anyone know how this might affect those with ‘just’ B12 deficiency who don’t have a diagnosis of Pernicious Anaemia? And if the revised Guidelines will cover the diagnosis and management of B12D as a whole, or if it will be restricted to just those with a confirmed PA diagnosis?
As I understand it PA is just one of a number of causes/symptoms/outcomes of B12D. Also that the IF test is notoriously unreliable so PA can’t be ruled out in those with B12D anyway (but apparently frequently are by under-educated Drs). Those with ‘just’ B12D (but with the same symptoms and problems) do seem have a harder time from Drs in: getting a diagnosis, getting treatment, getting enough treatment and ensuring treatment is ongoing.
I’m concerned that the focus appears to be only on PA and am worried that revised guidelines might give under-educated Drs yet more excuses to treat those with ‘just’ B12D badly – it’s hard enough as it is to get Drs to take B12D seriously! Please can we guard against that possibility.
The new guidelines will be for the diagnosis of PA, as well as it's management. As 'the society will play an active role in the formation of the new Standard.' I think we can be reasonably confident that the new diagnosis guidelines will emphasise the importance of not relying on a single factor - be that the IF antibody test, macrocytic anaemia or grey-area serum B12.
I would like a preliminary diagnosis to be based on several factors. ANy three positives from - antibody tests (both IF and GPC), serum B12, Active B12, MMA, endoscopic examination and red cell size - for those doctors who like rule-based diagnoses by numbers. Based on symptoms for those doctors who practice patient-based medicine.
But, for the final diagnosis, a response to B12 injections for anybody who they suspect might have a non-dietary deficiency. It'll be like nuking them from orbit - it's the only way to be sure.
Yep...agree with what you say fbirder . In addition, there should be guidelines for diagnosing AbNegPA (for those that 'fail' the IF, macrocytic anaemia criteria 'test).
Guidelines should also cover ruling out other causes for B12 deficiency...and therefore enable a further oportunity for a diagnosis of AbNegPA (something rarely, if ever, used now). So those who cannot current get a PA diagnosis should benefit.
My understanding is that the current one-size-fits-all treatment option will also be addressed and this should mean that it will be easier for we deficients to have a frequency of injections that make and keep us well.
Likewise, the need for intensive treatment for those with neurogical symptoms, together with the potential for subacute degeneration of the spinal cord due to lack of treatment or under-treatment will also be addressed.
Not sure how the potential for oral treatment will figure in this...the PAS position is that patients should be given a choice and that treatment should be 'results' driven...with injections freely available immediately (and ongoing) for those with neurogical symtpoms and those who do not respond to oral treatment (as many don't).
For those who may be worried that those without a firm PA diagnosis will 'miss-out' - not the case ( deniseinmilden , glinks , Cherylclaire ) these new guidelines will (should) improve diagnosis and treatment since the diagnosis of PA or AbNegPA will be improved. And for those who fall-in-the-gap and don't have or and still can't 'get' a PA diagnosis...
As the treatment for PA is treatment for the B12 deficiency it causes...these new PA guidelines will inform the treatment of B12 deficiency, across the board.
Also - the NICE guidelines for the diagnosis and treatment of B12 and folate deficiencies are also up for review - so hopefully those will improve too (in the ways outlined above - PAS involvement here too).
So, all-in-all...this is a good thing that will (should) benefit all with B12 deficiency...whatever the cause.
Moving the NHS England/NICE mountain is no quick or easy feat...but these are all steps in the right direction and will benefit anyone who suffers with B12 deficiency, whatever the cause.
As to educating doctorsand healthcare professionals...well hmm...that's a tale for a other day...😉😀.
Personally, I really can't see much point in differentiating between PA and ABnegPA. If a pass or fail on the IF antibody test isn't going to make any difference to how they treat the patient (and it shouldn't) then why bother with the test at all? It will only change the label they get.
In an ideal PA world yes...but as IF Testing is a first line investigation, a positive result may negate the need for many more further investigations to identify a cause of deficiency...cause they all have to be ruled out before AbNegPA can be diagnosed...and in the less than ideal world of medical professional knowledge about PA it will take some time (too long) before many will be prepared to accept that AbNegPA is 'real' (even thought currently guidelines and the new guidelines 'say it is so').
So... I suspect that there will still be 'security' to be had from having a positive IF test result...and a inarguabe diagnosis that no one can take away for any peculiar misguided whim in the future.
And yes, this is a nonsense to anyone who understands PA...😳
Roll on the ideal PA world....hmm
Thank you so much for your replies - they have heartened me greatly.
My Dr hadn't even heard of any of the other tests and just said that I "wasn't anaemic so I therefore couldn't have Pernicious Anaemia" - and he was the one who was supportive and supplied me with the kit to SI I initially.
Because of my previous ME/CFS diagnosis I only managed to get the initial tests through my dentist and I was too ill to worry about anything other than some treatment.
I feel that fbirder's suggested regime is more focused on trying to find excuses for not treating people, as the current system promotes (and more people sharing limited resources will only encourage this further) and this is what concerns me.
Your reply has gone a long way to reassure me that this is an opportunity to use a simple and cheap treatment to promote the well-being of many people who would otherwise need many more resources in time because of the effects of the deficiency.
I obviously didn’t make myself clear.
I’m not suggesting they should not bother testing for IF antibodies so that they can not bother to treat anybody. I’m suggesting they should treat everybody with a B12 deficiency the same, regardless of an antibody test.
If they do that then the antibody test is pointless.
Patient A has a B12 deficiency and a positive antibody test. They are labelled as having PA and are given treatment.
Patient B has a B12 deficiency and a negative antibody test. They are labelled as having AbNegPA and are given the same treatment.
Do we really need to do the test just to apply a different label if the treatment is the same?
Thanks for your reply. I'm sorry - it sounds like it was me that was unclear as I would like all treatment to be started on symptoms backed up by a low serum B12 result (which must be done to rule out other reasons for the symptoms) and with the other tests being carried out if the Dr and patient wants further information on it.
Time can be lost unnecessarily before treatment is started and the NHS and hematology guidelines suggest that treatment ASAP is essential.
Also a firm B12 deficiency diagnosis must be made as opposed to having P.A.
When I last saw my gastroenterologist a few months ago I asked him if he would confirm in writing in my medical notes I have B12 deficiency. He looked quite shocked saying he couldn’t possibly do that because my B12 levels (yes, GP had requested a B12 rest although explained it was pointless doing so post on-going treatment via injections) were abnormally high... try to explain but in his obtuse way he refused to listen... Yet he was the person who wrote to my GP over a year ago I should keep up with my B12 injections.
So this is a problem as I would like a formal confirmation of B12 deficiency... How does one achieve this?
Indeed I tried to stop weekly injections for quite a few weeks and I was getting seriously unwell again.. so back on weekly injections.
Help please...
Thanks for posting fbird
Martin Hooper, thank you, I am really very, very grateful for all your hard work on behalf of all of us. ❤️ Let’s hope it now will lead to better understanding and better treatment, not just for all with a firm PA diagnosis but also for people like me who were started on injections straightaway as a result of neurological symptoms and only a low B12 serum test. Our situation has been made worse by cutting back the amount of NHS allowed injections, 3 monthly in stead of monthly in my case. I am one of those who now self inject to keep functioning adequately to be able to work and run a household.
Indeed a most grateful thank you to Martyn Hooper! Brilliant.
