Spreading info about B12 deficiency

[Sleepybunny]

Hi All,

Think I've posted about this before but wondered if any of you had ideas on how to spread the word about B12 deficiency.

One way is to put up one of the following posters

pernicious-anaemia-society....

b12deficiency.info/posters/

Any other suggestions?

[Nackapan]

I plan to write to our monthly.

Pointing out the lack of forethought about not even having g b12 to tick on a blood form. Not done on health reviews. Missed too many times. Pointing out the extra cost to nhs to 'treat ' mri cT scans specialist appts gp time ect ect.

Lack of any training for gp and nurses.

I've already 'educated ' my surgery in a small way. Lots of opposition and defensive attitudes from some gPs. Nurses mostly receptive. I've done it slowly slowly as simply haven't yet energy at present to spare. I've akso written to big local hospital through PALS. about a and e missing classice b12 symptoms when I went. Being told I was having a panic attack!!

Will try and get posters for surgery to agree to put up.

Presently need to get in better health.

Vital this is done.

Yes keeping posting

[wedgewood]

I do agree . I have a little PAS poster on my car windscreen . I hope it has helped somebody .

[Sleepybunny]

Hi,

Every time I go in a church where there is a place to leave prayers, I leave one about the Pernicious Anaemia Society in the hope that others with B12 deficiency /PA will spot it.

Places for posters about PA/B12

Local libraries

MPs office

Colleges/Universities

[Sleepybunny]

I met someone who joined the PPG (Patient Participation Group) at their GP surgery and found this helpful as a way of educating health professionals.

Info about PPGs will be found on GP surgery websites in UK.

[Sleepybunny]

Perhaps people could donate a copy of Martyn Hooper's book " What You Need to Know About Pernicious Anaemia and B12 Deficiency" to GP surgery ?

[Nackapan]

That was meant to say "write to M.P😅

[deniseinmilden in reply to Nackapan]

And I thought writing an article for your local community magazine was a great idea as they are usually looking for editorial!!

It would be good to do both and all the above.

Not only does it help others get the treatment they need but the greater the knowledge out there the better the chances we have of getting a degree of understanding.

If everyone had heard of this as much as diabetes or similar then we would have less resistance to getting jabs when we need them.

In time it could lead to greater funding for research too.

Great idea Sleepybunny

[Nackapan in reply to deniseinmilden]

Yes and also earlier diagnosis !

[Janma123]

At the moment I just talk to people about it! That tends to be 1-1 unfortunately but if any of them are helped or saved from the more serious effects then it’s worth it.

I am also a member on the BHF forum and regularly mention it on there as may of the members also take metformin for T2 diabetes and a PPI to protect their stomach from aspirin etc.

The nurse at our GP practice did say that NHS Grampian have a very good information leaflet on B12 d - shame they don’t give it out to patients!! It’s probably out of date now!

More awareness of B12d would probably save the NHS a fortune in expensive misdiagnosis!

I like the posters in public places idea. I will get some and try to get them out there.

[mountainice]

Thanks for that. I hadn't seen this on the PAS website. I've printed two - one for the doctor's surgery and one for my front window as I live straight onto a pavement where people are constantly walking by.

[Nackapan]

I've got some printed off too. Will get them up when able in the sugery if they let me also library.

[Leils]

There is a Twitter movement if you want to follow b12 deficiency, Sally Pacholok and myself Leila Griffiths-Law and tweet to NHS and health secretaries..

I have also started a blog thecobaltblues.wordpress.com please feel free to share.

I have been writing to journalists with articles featuring some scientifically referenced papers. This is going to come out and it will be big but these things sadly take time.