PAS, NICE and guidelines for PA.

[fbirder]

The PAS have had a meeting with NICE about getting proper guidelines for the diagnosis and treatment for Pernicious Anaemia.

Unfortunately, it looks like it’ll be a few years yet.

pernicious-anaemia-society....

[wedgewood]

Thanks for that . The wheels turn so slowly — but at least they turn .

[glinks]

Great to see something happening!

But I'm confused and very worried – what's the difference between the existing NICE Guidelines: "Anaemia - B12 and folate deficiency" – cks.nice.org.uk/anaemia-b12... – and what they're now discussing?

Are they intending to produce some different guidelines, only for those who have a positive IF test and can be positively diagnosed as having PA (even though we all now how inconclusive that test can be)?

The fact they're calling it a "Guideline on the Diagnosis and Maintenance of Pernicious Anaemia" seems to suggest it is. What will be the difference between the two guidelines? Will they also retain the existing "Anaemia - B12 and folate deficiency" Guidelines?

Surely it should all come under B12 Deficiency?

And where will that leave those of us who "just" have a B12 deficiency?

How will that help the people who are now being refused treatment on the basis that they haven't got a positive PA diagnosis? (Seems to be an increasing trend among GPs judging by the increasing number of reports in various patient groups.)

[fbirder in reply to glinks]

The new guidelines will include guidelines on the diagnosis of PA. This is almost certainly going to include bits that say something along the lines of -

"The IF antibody test is useless for ruling out PA"

"If there are no other obvious causes for a B12 deficiency (such as vegetarian/vegan diet, abuse of nitrous oxide, long term use of certain medications, fish tapeworm, GI tract surgery) then a diagnosis of PA should be given.

[glinks in reply to fbirder]

Thanks fbirder, but I'm still confused as the purpose of a new, 'purely PA' focused, guideline when we already have the current NICE "Anaemia - B12 and folate deficiency" guidelines.

Will the current guidelines still be retained?

If not, where will guidelines for B12d for those who are not PA (vegetarian/vegan diet, nitrous oxide affected, long term users of certain medications, have fish tapeworm, GI tract surgery go etc.) go?

I thought some of those (e.g. GI tract surgery) needed lifetime B12 treatment too? Perhaps I've got that wrong?

You say the PA focused guideline is likely say the IF test is useless – will it also say that those testing neg for IF antibodies should be considered to have 'Antibody Neg PA' (as the BSH guidelines currently do?) and be treated as PA accordingly – I thought the current NICE guidelines also already said this anyway?

I'm just worried that this is not going to bode well for those of us with "just" a B12d. It seems to be hard enough for Drs to understand at the moment and I'm worried that two lots of guidelines are going to confuse them even more.

What we really need are not new separate guidelines, but instructions to Drs to actually read the current guidelines and actually act on them (fully)! The existing Guidelines do need updating to reflect actual patient experience, but I'm not sure what separating off PA into it's own guideline is intended to achieve.

[fbirder in reply to glinks]

I don't know what the outcome will be. All I can do is make reasoned guesses.

I find it extremely unlikely that the new guidelines will only be for people with PA - no matter how the diagnosis is made.

The current NICE guidelines don't mention AbNegPA - that's the BCSH guidelines. Nice are very likely to incorporate the BCSG 2014 guidelines.

Don't forget that NICE will be consulting patient groups.

[Midnight_Voice in reply to fbirder]

The NICE Guidelines do not mention PA. Paradoxically perhaps, I think it would be a backward step if they did.

Because there are two questions here - (i) What is PA, if there is such a thing as being IFab -ve, as distinct from testing IFab -ve? And (ii) if there is any useful distinction between PA and any other form of B12 deficiency caused by absorption issues rather than a lack of B12 in the diet, does this have any bearing on how the condition should be managed, at least as far as the administration of B12 goes?

The current NICE guidelines couldn’t be clearer -

How should I treat a person with vitamin B12 deficiency anaemia?

For people with neurological involvement

Seek urgent specialist advice from a

haematologist.

For my wife, this has never happened. She has the deficiency, she has neurological involvement, but she has tested IFab -ve which has caused our doctor to erroneously rule out PA.

But the guidelines don’t mention PA, and they don’t mention IFab -ve. And here it would only muddy the waters if they did. Yet she has never seen a haematologist, and as far as we know, one has never been consulted.

However, in this neck of the woods, more weight is already placed on the BCSH guidelines, which you are hoping the NICE guidelines will move towards. But the four outcomes on their flowchart cover IFab -ve as well as IFab +ve, and emphasise the point, made in the NICE guidelines but rather less prominently, that remeasuring B12 levels is not helpful.

But our practice retests, and discontinues B12 injections if the levels are normal again. Which both sets of guidelines specifically rule out, asserting firmly that injections should be every two months for life without retesting.

So what price the guidelines, any guidelines, if, as glinks says, doctors don’t read them and act on them as they are now?

What will change in the future that will make it impossible for practices to ignore the new guidelines, just like they ignore the existing ones? Will new guidelines have greater force? Will it suddenly become malpractice to ignore them?

Or what?

[fbirder in reply to Midnight_Voice]

NICE would be loathe to give doctors regulations to restrict doctor's ability to use their judgement. They think that the doctor is the best person to judge what treatment the person in front of them requires.

The problem is - sometimes that assumption is wrong.

We have a situation now where doctors can take one course of action (e.g., refusing to give B12 more than every 8 weeks) by wrongly claiming that they are forced to do so by the rules (or, sometimes, the law). Then the same doctor can choose to totally ignore the guidelines laid out for some treatments.

If we force doctors to follow the guidelines then I, and many others, wouldn't get the treatment we get currently - because we are lucky enough to have doctors that ignore the guidelines about injection frequency. So forcing them into rigid prescribed behaviour isn't an option.

We need some official process whereby patients can challenge the decision of their doctors. Currently, the closest we get is if a patient writes to a doctor, or a practice, asking them to justify their decisions. But some doctors don't respond appropriately.

[glinks in reply to fbirder]

I know my logic wouldn’t be respected by the Drs, but – the BSH guidelines for B12d with neuro involvement say every other day until symptoms cease to improve – my logic says that, if symptoms start showing themselves before a next maintenance jab is due, then not only have we *not reached* the point that 'symptoms have ceased to improve', we are in fact going backwards. I’d argue that, at that point, it’s logical that treatment should revert to the first step of the process (i.e. every other day*) and that the wording of the existing BSH guidelines therefore allows for this – but the wording needs to be made clearer in new guidelines as prescribing Drs do not (and don’t want to) read it that way!

*Better still, and more logical, would be update the wording so that it reflects actual patient experience and allows treatment at the frequency that causes symptoms to not only 'cease to improve’ but also 'to stay away' – for each individual. We need something that officially recognises that it’s not one-size-fits-all and officially allows a Dr to adjust according to their judgement and patient need – cloud cuckoo land?

[helvella in reply to glinks]

The letters "cks"!

Those are the Clinical Knowledge Summaries that used to be somewhere on the NHS website(s). A while back they were adopted by NICE but they are NOT proper NICE Guidelines.

When someone refers to NICE Guidelines, they usually mean the ones which are formulated after a specified process with invitations to contribute from interested parties. They have a certaing standing because of that.

CKS were, pretty much, writing up what is standard practice and there is no formal review mechanism.

The same issue applies to most thyroid disease, with there being CKS but not (yet) any formal NICE Guidelines.

[glinks in reply to helvella]

Thanks for the info on "Clinical Knowledge Summaries” – so the current NICE "Anaemia - B12 and folate deficiency” guidelines are in fact “only” Clinical Knowledge Summaries?

So this move to create "Guidelines on the Diagnosis and Maintenance of Pernicious Anaemia” is an effort to make an “official/proper” full-blown Guideline? All well and good – but why only for those with PA (& just "perhaps" also those AB-neg PA)?

It still doesn’t make sense to me that B12d (of which PA is a part, PA being only one cause of B12 malabsorption) has been excluded; and why the focus has been put on the sub-set (those dx with PA), rather than B12d as a whole. I really fear that this will encourage our, already confused and under-educated, Drs to focus treatment only on those with confirmed PA – something that is already happening to the detriment of large numbers of ppl, without the help of new guidelines.

Surely what is needed is an update of the current NICE "Anaemia - B12 and folate deficiency” guidelines to make them into official guidelines rather than a CKS. And within that to also update the treatment of PA specifically. The guidelines should be for *everyone* with a B12d!

[helvella in reply to glinks]

Most especially because of the difficulty of definitive diagnosis, anything which focuses on Pernicious Anaemia separately to B12 deficiency from other causes is madness.

I do see that dietary deficiency as a sole cause might need different management but even then, you cannot prove that is the cause before starting treatment of some sort.

[glinks in reply to helvella]

But will our views get heard by those influencing the guidelines?

fbirder says: "Don't forget that NICE will be consulting patient groups." – but I'm not aware of any other B12d group that's involved in the discussions, are you?

There are Facebook groups with thousands of members, but I'm pretty sure these are not recognised by the NHS/NICE as 'official' groups – their views are not going to be heard ...

[fbirder in reply to glinks]

I would think that Tracey Witty's group would be part of the consultation. And I believe that individuals would be able to contribute.

The big differences between the PAS and the FaceBook groups is that the PAS is only interested in real science and the PAS thinks that solutions can be found by working with the medical profession and not lambasting them at every opportunity.

[glinks in reply to fbirder]

Apologies! I didn't realise this was a sensitive issue – I'm fairly new to the scene.

All I really want is the best for *everyone* affected by B12d and to get that it seems sensible to talk to all affected and make sure that all voices are heard by NICE. There is so much real life experience out there (incl this group) that the medics don't seem to be seeing – that experience should be helping to inform NICE/BSH etc when drawing up their guidelines.

The PAS does an excellent job, I'm just concerned that the focus is so tightly on PA. I haven't joined the Society myself because I don't have a PA diagnosis & so wasn't sure how welcome I would be ...

Presumably you are a rep for PAS, are you able to pass on comments from this forum and help ensure all views are represented? Thank you.

[fbirder in reply to glinks]

I didn't have a diagnosis of PA either, when I joined.

When NICE are looking for individual contributions then I'm certain there will be announcements on this forum.

[Midnight_Voice in reply to glinks]

I don’t know about sensitive particularly, but there are those who are out on the wilder shores of every ailment, with talk of ‘medical conspiracies’ and Lord knows what besides.

Better to regard the GPs who won’t treat us as we should be treated as misinformed but basically of good will (even when that’s hard to do) and stick firmly to pointing out the gap between what they say and what the medically recognised guidelines say.

Getting into it with a doctor, even at that level can lead to you being blindsided with medical terms and facts (“it’s not PA, it’s autoimmune atrophic gastritis”) which when you look it up, is what kills the IF, i.e. it *is* PA, or as near as makes no difference.

And if you go much deeper, you are in the realms of graduate, or even post-graduate biochemistry; you aren’t going to discover anything, and even if you did, you wouldn’t be listened to. Especially if you didn’t have the relevant letters after your name, and quite possibly even if you did.

The only thing that I’d like to see pushed, and isn’t being, is taking injectable B12 off prescription. There must be statistics from Germany as to how dangerous (or rather, safe) this is.

And I was absolutely aghast to find you can get omeprazole off the shelf in our local Boots - omeprazole, a PPI implicated in exacerbating problems with B12 oral uptake.

So you can freely buy this, potentially giving yourself all sorts of nasty side effects, never mind perhaps tipping you over into PA.

But the almost unbelievably safe remedy for this requires you to brush up your German, and gain a familiarity with medical supplies companies that you might never have thought you would need.

[Hidden in reply to Midnight_Voice]

I couldn’t agree more.

[fbirder in reply to Midnight_Voice]

What really gets my goat is that we aren't allowed to buy B12 for injection across the counter. But 'beauty therapists' and woo-woo 'health' centres can quite happily inject people with no prescription - as long as they don't claim it's going to offer any medical benefit whatsoever. And charge them upwards of fifty quid for the privilege!

[glinks in reply to Midnight_Voice]

Midnight_Voice, I agree with much you’ve said there. As someone who’s come into this all relatively recently, I don’t actually see a lot of unscientific info coming from mod/admins on various other groups, most are pretty hot about ensuring any info is supported by research/guidelines etc. (yes, occasionally individual ‘lay’ members come out with rubbish it’s true, happens in any forum, but that’s generally put right fairly sharpish!). ‘Conspiracies' don’t seem to come into it much (actual experiences seem to be bad enough without that!) but, as you say, there will always be a few who take it to the next level!

Unfortunately what I *do* see is a lot of unscientific nonsense (and sometimes misleading untruths) coming from the medics (often when arguing against self-treating, when they want to switch someone to tablets, or when refusing to increase frequency etc. etc.).

What I also see are huge amounts of very real distress and suffering from people left untreated, under-treated and sometimes misdiagnosed – it’s pretty understandable that some will have a go at their Drs in such circumstances – the groups listen, they understand, they sympathise, they reassure – things that are frequently not happening on a Drs visit – that human element is one of the areas where these groups can be so helpful.

Undoubtedly we need more research into all aspects of B12d (and PA), but in the current absence of that surely it’s even more important that the real life experiences of sufferers is taken into account and learned from.

I agree with you that taking taking injectable B12 off prescription would be a very helpful move, but I’d not put it right at the top of the list, I think educating and re-training Drs (both GPs and specialists) should be the top. So that, at the very least, their knowledge is in line with the current BSH/NICE Guidelines/CKS. Along side ensuring that local Commissioning Groups (?) recognise the importance of B12d (and PA) and stop seeing it as an easy target for cuts to prescribing. Sadly neither of these we patients are in any position to influence, as far as I can see.

[fbirder in reply to glinks]

Education of frontline medical staff is one of the aims of the PAS. As well as organising and speaking at conferences they have helped produce an app where doctors can get tested on their knowledge.

The conferences, and successful completion of the app, earn doctors Continuous Professional Development points - which helps their pay.

[glinks in reply to fbirder]

Fbirder, those conferences and app sound really good!

Any idea of uptake? How it being promoted to Drs?

Do they have to do both a conference and use the app, or can they just use the app alone?

Is there a list of upcoming conferences available?

I’d love to give that info to my own GP – a while back I did give him info on a B12 Deficiency training prog I happened to spot (also gave CPD points), but he ignored that entirely (just as he has, very pointedly, ignored any of the research articles and guidelines I’ve progressively pointed him to! Hey ho! He simply doesn’t want to have his mind changed it seems.)

Do you know if anything is being done about getting B12d (& PA) into the curriculum right at the *start* of medical training, so that new Drs get it right from the beginning?

[fbirder in reply to glinks]

Conferences and the app will be separate for CPD points. Here is the PAS announcement about the eCPD app, which has one module for B12 pernicious-anaemia-society.... Why not give it a try? I seem to recall it was quite challenging.

I've just discovered that there's an indpeendant company running B12 training courses that qualify for CPD points - eventbrite.co.uk/e/b12-and-...

Doctors can also get CPD points for on the job learning and for sharing that learning with colleagues. When I gave my GP a copy of Martyn Hooper's book (a signed one at that) he would have read that and talked about it a one of the regular practice meetings, then made the book available for his colleagues to read. That would have made him eligible for some more CPD points.

The problem with doctor's training is that they have a hell of a lot to learn. Vitamin deficiencies are studied over one afternoon. And PA is lumped in with all the others - that have much more exciting names (scurvy, pellagra, Xerophthalmia).

And things change a lot. I use Google Alerts to keep track of some topics, but there's still too much for me too keep up with it all. And that's just looking at one small section of medicine. Most doctors might have the time to read the Lancet, the BMJ and a couple of specialist journals just to keep up with big changes.

[Ronsville2 in reply to fbirder]

I would like to see a training session that included producing a Practice Protocol for the care and treatment of B12 deficiency patients.

[fbirder in reply to Ronsville2]

Did you check the app?

Most doctors would say that they do not have the time for a dedicated few hours for a simple vitamin deficiency. But they might decide they can get a few CPD points by playing on their phone. Once they start they realise just how much they don't know about it.

[fbirder in reply to glinks]

As for unscientific info -

There is one FaceBook group where many people insist that everybody injecting B12 needs to take 5000 mcg of folic acid every day - forever. When I questioned this, and provided links to scientific articles saying it was potentially harmful, I got told to check their 'files'.

This turned out to be a random list of articles, ranging from scientific papers to dodgy websites. So I asked which particular file contained the scientific evidence for the 5000 mcg claim and was told it was in Sally Pacholok's book. Luckily, I have a copy so I read through every single page where folic acid or folate was listed in the index - nothing. So I asked just which page it was on. And got banned from the group.

[helvella in reply to glinks]

For the Thyroid NICE guidelines, currently in development, there was recently the opportunity to provide comments. This took two forms, sending comments to the groups which had registered as interested parties - "stakeholders" - (ITT and Thyroid UK, for example), and direct personal comments.

I submitted by both routes.

Took a lot of effort as I simply found so many issues that required comment!

[glinks in reply to helvella]

Good for you, I understand Thyroid is another very tricky area!

The ‘stakeholders' seem to be official groups then? Thus the various Facebook groups wouldn't fit as none have any 'official' status.

I hope there will be an opportunity for direct personal comments (though doubt that much note is taken of comments from individuals). From your experience do you have any idea if there is any sort of alert system to ensure the opportunity isn’t missed?

[helvella in reply to glinks]

See this NICE link:

nice.org.uk/get-involved/re...