Giving You Back YOUR Life

What does the Charity do? - Minutes of B12 Defiociency Patient Support Group

We are an open and transparent society, and after minutes have been checked for accuracy, we like to make them public.  This is especially important for people who can't make the meetings and want to know what's going on.


B12d Support Group Meeting 3 Dec 2013

Come for a chat and Coffee Tuesday 3 Dec. 10:30am – 12, East Durham Trust, Community House, Yoden Road, Peterlee, SR8 5DP

 

We all enjoyed the last coffee morning when Dr Chandy explained his latest findings on adrenal insufficiency and the BBC Camera Crew turned up.

We’re meeting in East Durham Trust (Community House) this time, in Peterlee, and we look forward to seeing you there.  It will be a lot of fun and a chance to catch up with people who understand your problems

We look forward to seeing you on Tuesday.  And bring your friends with an interest

Hugo Minney (PhD)



MEETING 7 April 10am - Horden Welfare Hall (2013)

Horden Social Welfare Hall

 

Complete change of plan for this meeting - we're going to try having a morning Committee Meeting, and the emphasis will be on chatting rather than business.

Please feel free to come along.  Horden Welfare Hall on seventh street http://www.icountydurham.co.uk/profile/102310/Peterlee/Horden-Social-Welfare-Centre/ - i should have posted the front door as there are two buildings close to each other both on the left going up, one with a green front, and one later on with a blue front.  It's the blue front and parking is just past the hall at the end of Seventh Street.  Just phone if you get stuck!

Hugo


 MEETING Tuesday 12 March 2013

Dear friends

The next meeting of the B12d Patient Support Group in Horden, County Durham, England UK, is on Tuesday 12 March at 4pm, at Horden Welfare Hall.

The Committee has a small amount of business to discuss but you shouldn't get bored and we're really there to talk to each other and catch up on what needs to be done to help people with B12 deficiency.

Can I just add that if anyone wants to start B12d Patient Support Group meetings in your area, just go ahead!  We'd be happy to promote your meetings on this web site.

Hugo


Click here to go to the minutes archive

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B12d Charity Support Group Blog

  • 02
    FEB

    Talk to Dr Chandy

    Dr Chandy has 50 year's experience as a doctor, and 36 ...

    Read More

  • 15
    JAN

    My Health Checks and Symptoms Diary

    We've asked everyone to keep your symptoms diary up to ...

    Read More

  • 03
    JAN

    New Process for Requesting B12

    New Process for putting in requests for B12 As you know...

    Read More

  • 20
    NOV

    Where do I put my requests and my enquiries?

    As everyone knows, the charity is run entirely by volun...

    Read More

Dr Chandy was nominated for the North East Local Heroes award. The interviewer was at first surprised - people don't get awards for doing what they are paid to do - but she persisted.
Susan gets very tired, which isn't much fun especially as she has so much to do. Here she tells her story.
The definitive and original guide to B12 deficiency, Dr Chandy interviewed by Chris Jackson of UK BBC Inside Out Team broadcast 31 Oct 2008.
Dr Joseph Chandy explains symptoms and shows the restorative effect on one patient (other patients' families have asked that we edit out their stories unfortunately)
June describes her suffering when doctors didn't follow the standard protocol after any stomach or intestinal operation - to offer B12 replacement therapy
Julia found her eyesight going as her eyes refused to focus on the same things as each other. She's been for all sorts of tests and treatment, but now that she's on B12 replacement therapy she's starting to see an improvement.
New documentary out from Elissa Leonard in North America, featuring Sally Pacholok and many other internationally renowned experts.
The Scottish Parliament discusses Pernicious Anaemia and vitamin B12 deficiency on Wednesday 7 March 2012.
This video is over 1 hour long and represents real political change - we are at last on our way.
Frankie tells of how she suffered, the tests she had to endure until doctors worked out what was wrong, and what a difference it has made.
The local MP (Grahame Morris MP for Easington - who was a BMS (BioMedical Scientist) in the labs at Sunderland Royal Infirmary) interviews people with B12 deficiency to hear their story (August 27 2010). Here Jane describes the symptoms, and how she can't wait for her next B12 injection (in fact, she knows that she needs injections every 2 weeks because she's keeping a diary of the symptoms). We're restricted how often the GP can give injections, which is why we want to raise awareness.
Janette first appeared in the BBC InsideOut documentary in October 2006. Since then the NHS has forced her doctor to withdraw B12 replacement therapy on a number of occasions, and she tells of her struggles with having B12 and then having it taken away.
She has bravely agreed to be filmed without her usual wig, but her memory is playing up because it is so long since her last injection.