B12 & Thyroid Conference – Wilful blindness, apathy or a case of short arms, deep pockets?

I am sorry I haven’t been here for a while, I have been arranging a conference on B12 deficiency, thyroid disease, genetics and data. (www.b12deficiency.info/conference)

Anyone who reads this blog knows how difficult it can be to access correct treatment and understanding of their condition.

I hoped (and still hope) that the 16th of May would go a little way towards helping to change this, however it seems I may be wrong!

The fact is, I have hand delivered personal invitations to nearly 200 GP’s local to the area. Others have emailed invitations, asked their own GP’s to attend and tweeted the event too, thank you all. I have sent hundreds of invitations via email to NHS organisations, health educators and healthcare professionals and the response has been DISMAL.

Amongst those who have booked are psychiatrists, pharmacists, acupuncturists and nurses, so all is not lost and there is still time for those who have been invited to stump up and turn up to what promises to be an excellent day. (I still have faith!)

I was warned that GP’s wouldn’t attend – that they are just not interested, that they only go to free events, usually free thanks to pharmaceutical sponsorship.  Who knows the real reason, perhaps they are all at weddings?

I do know there are some GP’s who are up to speed on both these conditions, however the vast majority are not. These petitions are testament to this fact –

Lorraine Cleaver – Effective thyroid and adrenal testing, diagnosis and treatment.
www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463

Andrea MacArthur – Updating of Pernicious Anaemia-VitaminB12 Deficiency understanding & treatment.
www.scottish.parliament.uk/GettingInvolved/Petitions/petitionPDF/PE01408.pdf

Tracey Witty
www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?

Here’s what GP Margaret McCartney has to say on this subject –

Margaret McCartney: Forever indebted to pharma—doctors must take control of our own education

http://www.bmj.com/content/350/bmj.h1965 

“A colleague told me that attendance plummeted when she decided to end the pharma sponsorship of an annual educational event and to charge doctors £40 each instead. Are we so culturally attached to free education that we don’t care about the price? A £40 fee is hardly robbery, and free education is not worth the unwritten debt to sponsors.

At these events it’s also often unclear what vested interests speakers have until they flash a slide at the start of their talks. We should insist on seeing a full declaration of potential conflicts and sponsors before we sign up.

By deciding what we need and what we would like to learn, we can set our own agenda rather than be the recipients of someone else’s…..”

I wish I could shoulder the cost of this event and offer it for free but I can’t, however there are NO SPONSORS and NO AFFILIATION with anyone selling a drug or a supplement, it is not for profit.

Everything I do to raise awareness of B12 deficiency is personally funded by me and my husband Damian, because this condition has affected us so profoundly and because we care about those in the same boat (and indeed in the ‘connected boat’ of thyroid disease). There are many of us spending countless hours voluntarily, working to raise awareness and support sufferers of both conditions.

The £62 ticket price covers the cost of the event; food, refreshments, technical staff, technical equipment, building hire, printing, promoting, and the minimal expenses of four excellent speakers on interesting and vitally important topics.

  • Sally Pacholok RN BSN – The effect of B12 deficiency on all body systems. Symptoms, causes, those at risk and common misdiagnoses.
  • Lorraine Cleaver Expert Patient – Diagnosis and treatment of thyroid disease from a patient’s perspective.
  • Umahro Cadogan Adjunct Professor of Nutrition – Genetic polymorphisms and the role of B12 and folate in methylation.
  • Dr. Malcolm Kendrick MbChB, MRCGP GP – Doctoring data – how data are manipulated to present information in wildly inaccurate ways.

People who have an interest in the subjects, who are not health care professionals, do want to come and were previously excluded – I’m sorry this was a BIG MISTAKE.

Those of us with these conditions may be aware of the effects they have on mental health, fertility, children, cardiovascular health (etc,etc) but it seems that the vast majority of our GP’s and medical educators prefer to stay in the dark.

The aim was obviously to educate the people who in turn can help us. The polypharmacy we are subjected to thanks to this knowledge gap, is out of control. Patients are taking more and more drugs to modify symptoms while the root cause is ignored.

It is very clear that we, the patient, have to continue to learn as much as we can about our conditions in order that we can then try to teach those who ‘care’ for us.

I am saddened that this is the way it has to be and that even though we didn’t choose medicine as a career, we continue to be forced to study it.

Lest make this event a catalyst for change. If you can come we’d love to see you there.

Where: Loughborough University
When: Saturday May 16th (9am – 6pm)
Cost: £62
Inc: Lunch, free on-site parking, post conference webinar and attendance certificate (upon request)

For further information and booking please visit www.b12deficiency.info/conference

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Acknowledgements: Margaret McCartney, BMJ

2 thoughts on “B12 & Thyroid Conference – Wilful blindness, apathy or a case of short arms, deep pockets?

  1. Hi Tracey,

    So sorry to hear that the GPs response has been dismal but not surprised.
    Personally I would love to come but don’t think I can manage the journey.

    I hope that now the conference is open to people who are not health care professionals it will be full of people ready to listen to inspiring speakers.

    Your attempts to educate the medical profession give sufferers hope that things will improve.

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