Poignant letter on B12 Deficiency Info blog

[Sleepybunny]

Hi,

Thought this letter from an 81 year old woman on B12 Deficiency Info blog was worth reading.

b12deficiency.info/blog/202...

[waveylines]

Thanks Sleepybunny. Totally agree with all of that! I too like so many had to self inject off my own back and once on nhs treatment have to supplement with my own b12 vials. I dont understand why there is such a blindness over b12 treatment, after all prompt effective treatment can prevent permenant damage......permenant damage leads to more need to see doctors...... I too after three years of intense treatment continue to improve, combined with going gluten free it has been a live changer. The NHS failed me on both counts......infact Im still waiting for the NHS to contact me re my gluten intolerance 7 months on.....needless to say havent waited for them! It seems very clear to me we have to be very proactive on all health matters these dayd.......definately dont rely on your GP!

[wedgewood in reply to waveylines]

I second that !

[doityourself]

Thank you for that letter.I ll happily join her at the railings if it highlights the issue!

[deniseinmilden]

Wow: excellent - thank you!

Well worth opening and reading it.

[Nackapan]

Thank you.Very powerful letter

With numbes doctors love!

[Midnight_Voice in reply to Nackapan]

One of the numbers contains the fallacy that 96,000 signatures must equate to at least 96,000 doctors, whereas there may be less than that number, each knocking back multiple patients.

And it’s quite possible that many of the signatories don’t themselves have PA, but care for someone who does (in one or both meanings of the word).

But certainly, 96,000 instances of people who have found the treatment of PA, for themselves or a loved one, to be inexplicably lacking.

We are trying again on Monday - new county, new practice, new doctor - with the consultant’s letter from before recommending treatment, our reply to the doctor who actively refused it, and the County flowchart for treatment.

With Sleepybunny’s immensely valuable cornucopia of backup references if the doctor shows more interest, but we don’t want to overload her at first and get a tldr….

We are looking, again, for two-monthly injections; monthly if possible, but that is a bigger ask. So we are prepared to come in from the all-SI ‘cold’, at least 50% of the time, which should be enough to regularise the folate, and other good things.

But will they let us? Wish us luck!

[Nackapan in reply to Midnight_Voice]

That is just asking fir what is the recommended treatment.All Gps should be comfortable with that.

I pushed and pushed only one saying g caduskky I'd read the bnf guidi lines

Bur of course it's down to the individual needs of the patient .

One Gp out of 6 listened as nothing else found wrong with me.

Alot if opposition fton peer colleagues.

Nurses were a bigger obstacle always querying it and never give a day early unless a BH!

Continuity so important

Record helping vital as nurses need clear instructions otherwise cannot give it.

A few times ive sat there waiting for them to sort out the admn. Never leaving.

At present I have a prescription for 2 weekly. Settled on that 2 yesrs ago. Also buy it.

G.p surgery in the process of going under new management .

We all nervous if the doctor leaves or a change when they 'review'

I'm trying g to access my notes via sn nhs app ti see in writing anywhere the frequency prescribed sbd why to keep a Copy.

You are very wises not to overload the new G.p.

It's a real art to be assertive low key tenacious without a hint of anything that csn be interpreted as aggression.

I walk a fine line at times.

I react to bring talked over and rudeness quickly.

Takes so much energy to nurture 'fragile egos' at times.

Or getting them to think it's their idea . Always good to show appreciation when due. Sometimes I think simple courtesies lost under to busy or covud.

I find bring talked at the most difficult.

Usually when the medic fatigued and can't think out of the box.

I really hope the new practice is a fresh start for you with positive better open minded care.

I always hope a new fresh look csn bring more answers.

[Cherylclaire Forum Support in reply to Midnight_Voice]

Well there you go, Midnight_Voice :

Nackapan alone has seen 6 GPs .....

I'm thinking it is likely that more rather than less than 96,000 doctors involved !

[Midnight_Voice in reply to Cherylclaire]

Cherylclaire

There aren’t many more:-

gov.uk/government/news/reco...

122,500 in the NHS, according to that.

So if that 96,000 rose by just 20%, that would be pretty much all of them, and our chances of finding an understanding one about zero😢

There are about 300,000 overall in the UK, so presumably the rest are private, or qualified and not working in the health arena. And our experience is that the private ones will readily give B12 injections.

[Cherylclaire Forum Support in reply to Midnight_Voice]

Interesting and surprising. I had assumed there were more NHS doctors than that. Assuming this includes doctors working in NHS hospitals. Currently over 56 million people in the UK.Really hope you find your needle in the haystack.

[eclilley]

A great letter! If every single one of us wrote our own letter like that and flooded MP's, GP's, "This Morning " (or similar!), etc all at the same time, maybe - just maybe - it might have some kind of impact & effect.

It makes me SO angry, the way we are ignored, treated like an inconvenience, hypochondriacs, neurotic, wrong, and impertinent even, for wanting to feel better! Why are there so many barriers & refusals? And if they recognised PA/B12D as the issue it is and if they actively considered it, looked for it and treated it properly, HOW much money could the NHS have saved on all of our repeat appointments, unnecessary investigations for other things, medications not needed etc?!?!? Quite aside from our suffering and frustration.

[Sleepybunny in reply to eclilley]

I thought about writing to Womans Hour on Radio 4.

Maybe at some point you could start a separate thread on this.

[PointOfReference]

This condition, and the reaction from doctors, drives one to desperation. And I would join her at the railings to protest against ridiculous restrictions on treatment, but we have many many obstacles to climb to make any protest effective:

1) Covid is the highest priority. Anything else isn't as important now. Hence reducing injection frequencies or suggesting oral because resources are low.

2) Medics don't want to accept that a vitamin could have such a devastating effect on the body. Especially when symptoms are varied.

3) B12 is now sold as a 'life enhacer' in cosmetic clinics and endorsed by celebrities. This is potentially diminishing the validity of B12 as an essential, vital treatment for serious symptoms.

4) Doctors dont know what Pernicious Anaemia is. They think it's simple anaemia. They dont understand the 'essential nature' of treatment and think loading doses 'effectively treat the Pernicious Anaemia'

baymedicalgroup.co.uk/news/...

5) The western world hasn't seen much B12d, since most of us are raised on a diet of meat at most intervals. Although veganism is fashionable, the majority eat meat everyday. So, doctors have never had to think much about B12d. So the only 'specialist' in b12 (Dr Chandy) originates from India where B12d is rife due to vegetarianism.

6) Testing for B12d and PA is known to be seriously flawed. Simply checking how much B12 is in the blood is not effective. But again, its the best the NHS has when generally most people arent getting B12d.

7) Self injections carry a degree of risk that the NHS dont want to take.

8) Doctors are not trained in B12d. 'its a placebo', 'you don't want to overdose'. 'Blood levels are normal and so you should be too'.

It pains me to say but the only hope for better treatment is more cases of B12d. And with kore vegans around this is likely. If that also means more awareness of PA then great, but I still think Drs don't get what Pernicious Aneamia really is.

There's a long way to go. But we must continue to fight for appropriate treatment.

[wedgewood in reply to PointOfReference]

Excellently put PointOfReference 👍

[Narwhal10]

Thank you Sleepybunny.

[jaybirdxNHM]

Thankyou, similar story to myself.I was lucky and found the one GP new to the surgery who understood the deficiency. So from an haematologist say give lifelong injections to teaching me to give EOD jabs took 19 yrs. But, only 'feet' and balance now giving probs so

Yippee

Which railings are we going to occupy??