Awareness

[stumpnme1]

Hi. I am so very grateful to have the support and understanding from this community. Having a poor relationship with my GP surgery, caused by years of misdiagnosis and consequences from that which have ruined my previously active life, I am loathe to ring them for advice. In the UK there is a very good week-day programme, the Victoria Derbyshire programme, which deals with diverse topics and raises awareness of problems currently not widely recognised in medical circles. I have emailed the show, asking if they could look into covering the huge difficulties caused by b12d and P.A.S. which are so wide-spread and unacceptable for thousands of us. I wonder if anyone would support me in my attempt to raise awareness in this way, or is it a bad idea?!

[clivealive Forum Support]

Having had P.A. for over 45 years and "lived in ignorance" of what it was all about for most of them I'm all for "spreading the word" which I do on Facebook and Patient U.K. etc.

As long as the research is authoritative (i.e. consulting PAsoc - Dr Chris Steele etc) it sounds like a good idea to me and I wish you well.

[Lisahelen]

As the quote goes," All publicity is good publicity". Especially when it is to the benefit.

[wedgewood]

Really think that's marvellous ! Yes I would support you in any way possible

[stumpnme1 in reply to wedgewood]

Good. I will see if I get a reply from the programme, here's hoping!

[stumpnme1 in reply to wedgewood]

Good. I will see if I get a response from the programme, if not I'll text as well!

[stumpnme1]

Whoops!

[Polaris]

A great idea Stumpnme - I definitely wiil too.

I've written to my MP at various times re. B12 and T3 (Thyroid medication) and he was very supportive. He passed the letters on to Jeremy Hunt, who did not address the issues - just wrote five pages of gobbledegook and referred me back to NHS. I have pages and pages of legitimate research, as well as questions that were brought up in the House of Lords re. neurological damage suffered by patients being deprived of B12.

Dr John Midgley, scientist and advisor on TUK forum (Diogenes). together with Lorraine Cleaver, have taken on Scottish Parliament and their thoughts on why the medical establishment don't listen makes interesting reading as, in many ways, it appears to apply equally to B12 deficiency: (Sorry such a long post bu it was difficult to access the link so lucky I'd already copied this - have tried to shorten it !

...............

John Midgley:

"There is a rather stern answer to that. The alleged gaps in knowledge are in fact refusals to acknowledge that there is evidence that flies in the face of current actions. That is because the medical profession is by definition a conservative one and, having diagnosed and treated people in a particular way for 35 years, it does not take kindly to being told that it has been doing the wrong thing all that time.

It will take an enormous amount of pressure to bring the medical profession around to reading and understanding the papers—which I have to say are rather complicated—that show that what has been done over the past 35 years or so is suboptimal and has actually caused harm to patients. That is a very big thing."

Rona Mackay:

" Iwant to ask about the importance of the doctor-patient relationship in identifying suitable treatment and implementing patient-centred care. Are patients sufficiently supported when they do not agree with the treatment plan that is proposed by their general practitioner or endocrinologist? Do you have any recommendations for what steps NHS Scotland could take to support patients who find themselves in such circumstances?

John Midgley:

Gosh, have we got a day? From what I read about people’s experiences, my belief is that, in general, GPs are woefully ignorant about how to treat patients who have thyroid dysfunction. GPs seem to have become used to what I call computer thinking—they look into a blue screen where advice is given to them and they simply follow that advice in a rigid and mechanical fashion.

That means that, as I said, the biochemical numbers, which are displayed on that screen from the pathology laboratory, seem to become paramount over the appearance of the person in front of the GP. In my opinion, that is the great error that is being made—the patient is now subordinate to the chemistry, which is not right. It cannot be right, because the chemistry is the guide and not the dictator. However, I cannot lay the fault at the door of the general practitioners, because they only behave in the way that they are instructed to behave.

"The individual patient is an anecdote—they are in front of the GP and they have their unique parameters, which are within or without the normal range, depending on how they are. That is one thing. The normal ranges for health are obtained statistically. There is a tension between statistics and individuality. The individual is a place within those statistics, but to use the statistics backwards and say that an individual is within a range and is therefore okay, wherever they are, is a complete error.

I am saying that general practitioners are not given the proper method of discriminating the individual from the ranges that they are given within which to place that individual. The individuality is lost, and therefore misjudgments as to the success of the treatment are continually made."

Rona Mackay:

Does that go back to clinical training?

John Midgley:

Yes—clinical training has to change very much. There are an awful lot of misapprehensions about how to treat numbers and how to relate them to patient presentation.

Lorraine Cleaver:

In the 21st century NHS, medicine is going forwards, but for this patient group we are going backwards. We used to have desiccated pig thyroid, which had everything in it, but we cannot get that now. We are actually going backwards."

[stumpnme1 in reply to Polaris]

Brilliant post, well worth reading! I will keep nagging the programme (politely, of course!) and hope we get somewhere.xx

[Polaris in reply to stumpnme1]

Good luck xxx

Just had a thought - it might also be worth writing to Michael Moseley - he featured the T3 problem in one of his programmes.

Wondering whether someone could do a rough template so that all us foggy headed people have something to start organising our thoughts ?

[kmalbasich]

Yes I too have been in touch with my cousin who has nine lives documentary company in Manchester because i feel so angry how hard it is for you all in UK and here for understanding off our sufferings and poor diagnosis ect

At least here in Australia we can get b12 over the counter!

[stumpnme1 in reply to kmalbasich]

That sounds good! I hope your cousin will consider looking into the whole mess that is b12d mis- and under- diagnosis.

[Annnon58]

Best of luck , also would it be worth getting "good morning ' on ITV involved as Dr Chris Steele is on the prog sometimes and he helped with Martin Hoopers book and he's very knowledgable about PA . I wish you the best of luck and hopefully soon 😀💉💉💉🌟

[stumpnme1 in reply to Annnon58]

Good idea! I shall use my (very) limited energy in the next few days thinking about awareness of PA and b12d on tv. (Having spent the whole of today wishing I could curl up and disappear in between dozing, it will hopefully be better tomorrow.) Dr Chris Steele is definitely worth contacting. I don't want to annoy anyone in the community, though.

[Bengie in reply to stumpnme1]

Stumpnme1, I am 'following' you on this site. I live in Ireland so if you do get something on TV could you please let us know here as I would be interested in watching what anyone has to say about PA. I do get ITV and BBC TV. I'm lucky with my GP in that it's left up to myself how many injections I need and last week started self injecting, but I now don't know how often I should SI and doctor and nurses don't seep to know either??

[stumpnme1 in reply to Bengie]

I'll keep posting on here if (when!) we get a response from any of the people/companies contacted. I met Dr Chris Steele a few years ago, would be good if he remembered but I don't think for a second he will.

[Bengie in reply to stumpnme1]

Thank you.

[Annnon58]

I think dr Chris Steel is an ambassador for PAS 😀 So I doubt you'll upset anyone . Sorry your feeling unwell , . Thank you in advance for tying to raise awareness , your a star 🌟