Re: On line forum censorship

[Guest guest]

Sheila,

I would love to meet you! The way you tackle everything head-on, with such

courage, is an inspiration! I imagine you like a Valkyrie, with your shield and

your armour (no pun intended!) and your hair flying out behind you in the wind.

Love,

McGowan

>

> Hope the message I have just posted helps explain some of the problems

> encountered and what actions are now being taken.

>

> Luv - Sheila

>

>

>

> Can anyone work out who we should complain to, if we want to complain about

> the whole fiasco of the Online Forum?

> http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScompla

> ints.aspx

>

>

>

> _____

>

> No virus found in this message.

> Checked by AVG - www.avg.com

> Version: 2012.0.1901 / Virus Database: 2109/4778 - Release Date: 01/31/12

>

[Guest guest]

No..

Sheila is more like a Terrier, little and fiesty and doesn't let go easily.....

She is also right - and there is no real argueing with that!

x

> >

> > Hope the message I have just posted helps explain some of the problems

> > encountered and what actions are now being taken.

> >

> > Luv - Sheila

> >

> >

> >

> > Can anyone work out who we should complain to, if we want to complain about

> > the whole fiasco of the Online Forum?

> > http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScompla

> > ints.aspx

> >

> >

> >

> > _____

> >

> > No virus found in this message.

> > Checked by AVG - www.avg.com

> > Version: 2012.0.1901 / Virus Database: 2109/4778 - Release Date: 01/31/12

> >

>

[Guest guest]

That must have been when they closed the group down. That

password is given only to selected people so they can log on, and these people

are the BTA experts for them to carry on answering those questions that haven't

been answered over the course of the next few days

Luv - Sheila

HI SHEILA

I have got a large ammount of questions and answers. I have located the

question about urine tests and there is only a question by Jane123, but it

states that there were 7 posts, but only one post was there so they removed

them by the time I captured.

I was capturing some more, and a message came up that asks me to log in, but

all I could do was to log out. I will try again to see if I have been blocked

like you.

Kathleen

>

>

> Has anybody managed to capture all the questions and responses please?

>

>

>

> Luv - Sheila

>

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1901 / Virus Database: 2109/4777 - Release Date: 01/30/12

[Guest guest]

I rang talkhealth yesterday and expressed my disgust at their forum on thyroid

disorders and the lack of help for the hundreds of posts that were going

unanswered or answered in an unhelpful way by the so called experts and asked

for my feedback to be passed on.

I also rang the Parliamentary and Health Service Ombudsman and had a nice chat

with a man there regarding how to go about complaining about lack of NDT etc and

he said that it is difficult as they can only point out policy issues, not

clinical decisions on treatment. We have to complain to the DofH, but they

simply refer to the guidelines issued by the RCP etc as they are deemed to be

the experts. He did say the only way that this sort of thing has been resolved

in the past is in the courts eg lack of cancer drugs available on the NHS.

Not particularly helpful but it shows how difficult it is to get past the

dogmatic backwards 'experts' and their ridiculous ideas of what warrants

effective treatment.

Cat.

>

> Can anyone work out who we should complain to, if we want to complain about

the whole fiasco of the Online Forum?

>

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints\

..aspx

>

[Guest guest]

Thanks for this Catriona - you have been a tremendous worker in

trying to get across our outrageous neglect by those in the field of

endocrinology, who should know better, but don't, and who appear to have no

desire to improve their education. What really angers me more than anything is

that they are so damned ignorant and arrogant that they don't do any research

themselves, but rely solely on the RCP Statement on the diagnosis and

management of PRIMARY hypothyroidism, which is just their 'opinion' because it

is not backed up with the science, and they use this statement to treat all 'types'

of hypothyroidism, when, in fact, they should be treating using T3 and not the

mainly inactive T4. They never question the BTA or RCP statements.

Luv - Sheila

I rang talkhealth yesterday and expressed my

disgust at their forum on thyroid disorders and the lack of help for the

hundreds of posts that were going unanswered or answered in an unhelpful way by

the so called experts and asked for my feedback to be passed on.

I also rang the Parliamentary and Health Service Ombudsman and had a nice chat

with a man there regarding how to go about complaining about lack of NDT etc

and he said that it is difficult as they can only point out policy issues, not

clinical decisions on treatment. We have to complain to the DofH, but they

simply refer to the guidelines issued by the RCP etc as they are deemed to be

the experts. He did say the only way that this sort of thing has been resolved

in the past is in the courts eg lack of cancer drugs available on the NHS.

Not particularly helpful but it shows how difficult it is to get past the

dogmatic backwards 'experts' and their ridiculous ideas of what warrants

effective treatment.

Cat.

>

> Can anyone work out who we should complain to, if we want to complain

about the whole fiasco of the Online Forum?

> http://www.nhs.uk/choiceintheNHS/Rightsandpledges/complaints/Pages/NHScomplaints.aspx

>

No

virus found in this message.

Checked by AVG - www.avg.com

Version: 2012.0.1913 / Virus Database: 2109/4778 - Release Date: 01/31/12

[Guest guest]

A bit late in the day, but anyway you know they said the forum was only to

answer individual patients personal queries (so that was the reason for removing

and not answering some TPA members posts)

The poster for the forum says

Our panel of leading experts specialising in thyroid disorders will be in the

forum to answer your questions about issues surrounding thyroid disorders

So that excuse doesn't hold true.

The poster is on

http://www.talkhealthpartnership.com/nhs_choices/documents/ThyroidDisordersposte\

r.pdf

Steve

[Guest guest]

Steve why did they remove their own posting and answer though. If we all wanted

to put something under the same heading were we supposed to have a whole lot of

posts with the same heading.

Were yo also able to locate the disclaimer, as it was tucked away where anybody

with bad sight could not see it, and on their main site, not where the online

clinic was. FOOLS

Kathleen

>

>

>

> A bit late in the day, but anyway you know they said the forum was only to

answer individual patients personal queries (so that was the reason for removing

and not answering some TPA members posts)

>

> Steve

>

[Guest guest]

Ha! If diagnosis and treatment protocols aren't 'issues around' thyroid

disorders, then I don't know what they are! Well spotted.

>

> A bit late in the day, but anyway you know they said the forum was only to

answer individual patients personal queries (so that was the reason for removing

and not answering some TPA members posts)

>

> The poster for the forum says

> Our panel of leading experts specialising in thyroid disorders will be in the

forum to answer your questions about issues surrounding thyroid disorders