So sorry to hear that B12.org can no longer supply B12 ampoules to folk who cannot afford them .

[wedgewood]

If there is any way to help these people I would love to know , as I’m sure would many others on this forum . They can be supplied as slimming aids without prescription can’t they ? Or as energy aids . It upsets me to hear that news .t

[Katherine123]

I have just received some B12 from them a few weeks ago, when did this happen?

[wedgewood in reply to Katherine123]

Very recently it seems . I read about it in Gambit62’s posting of yesterday .

[Katherine123 in reply to wedgewood]

How do I find Gambit's post darling?

[wedgewood in reply to Katherine123]

It’s 7 posts and 15 hours ago .

[Foggyme Administrator in reply to Katherine123]

Hi Katherine123. Here's an extract from the B12d newsletter (received this week), which discusses the issue:

Please don’t request B12 for injection

If you are on the New Beginnings Facebook group then you will already know this. The medicines and healthcare products regulatory authority (MHRA) has advised that B12d charity cannot supply B12 without a prescription.

Can I remind you that the charity is NOT able to definitively diagnose or give prescriptions. Therefore we are stopping sending out B12 immediately and won’t be able send any out unless it stops being a Prescription-Only Medicine (POM) (which typically takes years).

If you want to get B12 without a prescription, then you need to ask for it as a Nutritional Supplement or “pick-me-up” (not a medicine), from someone licensed to supply. Because B12d charity discusses symptoms, and potential solutions, we are considered to be discussing a medicine, and medicines are only available on prescription and only if they are licensed for those symptoms. B12d charity can’t supply a nutritional supplement for this reason.

You can buy B12 for injection from intravita.com in UK, and from versandapo.de or mycare.de in Germany. Products from any country outside of EU will most likely be impounded and destroyed by customs. I’m advised that you can buy for personal use or immediate family, but you should not buy for friends or acquaintances.

Please see a note in “Donations” below about this....[…]…

...We’re still doing what we can to help people, but of course we have to work within the law. Please don’t go racing off to sign lots of petitions, the decisions about B12 aren’t made by parliament or elected politicians, and the people who do make these decisions don’t like publicity and will probably refuse to change anything whilst there’s a fuss being made in public.

Sincerely

Susan Peacock, Ann Peel, Dr Joe Chandy, Hugo Minney and the Trustees

B12 Deficiency Support Group (registered as charity 1146432)

Horden, Co Durham, UK

b12d.org

email Dr Chandy [e-mail]

👍

[Katherine123 in reply to Foggyme]

This is very bad!!! they are trying to shut him down whichever way and denying our right to B12 to make us well, something needs to be done about this :0(

[Foggyme Administrator in reply to Katherine123]

Hi Katherine123. Here's what Hugo Minney from B12d.org says about the situation as it pertains to their current situation (as per above):

We’re still doing what we can to help people, but of course we have to work within the law. Please don’t go racing off to sign lots of petitions, the decisions about B12 aren’t made by parliament or elected politicians, and the people who do make these decisions don’t like publicity and will probably refuse to change anything whilst there’s a fuss being made in public.

And unfortunately, I think he's right. Petitions or protests about the decision made in relation to B12d.org handing out vitamin B12 injections may further compromise the work that they're trying to do.

The larger aim is to lobby for change in the way that PA (and B12 deficiency in general) is diagnosed and treated, lobby for changes to the treatment protocols which dictate a 'one-size-fits-all' treatment regime (which we all know is not appropriate), and engage in research to produce the evidence that is required to support the drive for change. All activities that the Pernicious Anaemia Society is engaged in. So...supporting the PAS will enable them to push forward with this work.

Some write to their MPs to highlight the issues...and that helps too.

Protocols for treatment a currently being 'looked at' by NICE and it’s hoped that new protocols will (eventually) enable treatment with injections at a frequency that suits each individual.

The PAS are also engaged in two separate research projects. The first to try and identity why some need more frequent injections and the second to investigate the efficacy of SC B12 injections - if research evidence can be produced to show that SC is as effective as IM injections, then that's a step towards pushing for we deficients to be 'allowed' to SI - in the same way as diabetics currently do.

But as for getting doctors to even follow the current guidelines for diagnosis and treatment...well, that's another story... Sadly.

👍