Early onset Dementia or Bad Care?

[GGourmet]

Some 12 months ago, after memory problems, my father was diagnosed with B12 deficiency (he’s 81 now). He was given loading doses but no maintenance regime of 2 or 3 month injections.

His GP has just diagnosed early onset dementia. I’m fuming!

What he has been experiencing is almost the same as I have from my B12 deficiency.

I went online with him yesterday and we ordered 250 sublingual B12 from Solgar 1000pg.

I need to get my dad back in front of the GP to get him on maintenance doses per NICE.

The sublinguals are a start and I hope I am right and the GP wrong.

Sadly, from my experience and now my dads, GP knowledge and ability to go off piste rather than follow the guidance is alarming.

[fbirder]

Write to GP demanding proper treatment as described in the British National Formulary.

[GGourmet in reply to fbirder]

Thanks.

[Nackapan]

Yes get his b12 Injections back. They stopped my mums . Shes 91. They put her on tablets!! That she coukdnr hi and buy !!!

Wanted to do a blood test.

I've sorted it and she is back on 3 monthly. B12 injections.

Shes much more 'with it' again.

Never did have the blood test.

Yes I hope you are right.

Will help him whatever

[Sleepybunny]

Hi,

A few links that might be useful

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion. Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Might be worth talking to his local MP/devolved representative if struggling to get adequate treatment.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

Power of Attorney

gov.uk/power-of-attorney

Have you considered joining and talking to PAS on his behalf?

They should be able to pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

The chair of PAS, Martyn Hooper may be interested in his story.

The person who runs B12 Deficiency info website may also be interested in his story.

B12 Deficiency Info website

b12deficiency.info/

Going to the press

If polite attempts to get B12 injections reinstated are unsuccessful, some people have gone to the press.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

See links below to a couple of them. I've written others as well which you might want to search for.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Sleepybunny]

Hi,

Articles that mention B12 deficiency and dementia

pubmed.ncbi.nlm.nih.gov/156...

Article above suggests that B12 deficiency may lead a reversible dementia in elderly patients.

ncbi.nlm.nih.gov/pmc/articl...