Freedom of Information Act

[Guest guest]

I will first try to find some info in regards to this (one of the

requirements of a response for FOIA is that the information must not have

already been released - which I think that it probably hasn't, but want to

check) and then I will draw up a basic FOIA that requests information about

these items and send them back.

When we get responses, I think it would be a good idea to post them in the

files on the website as well.

I was just telling a friend at work about some of the things I've read about

lately and I'm all fired up! I'm disgusted and appalled that pharma

disregards human life to this extent! SICKENING!!!!

Well...if I'm going to start looking at this I better quit talking about it

and do something!!

Blessings,

Nicki

Freedom of Information Act

Well, from personal experience I would like information on loss of speech/

speech disorders and vaccines as well as auditory oversensitivities/

auditory processing disorders and vaccines -- since the former is what my

son experienced and he is being evaluated for the latter. These are

characteristics also seen in children with autism. Now there are all these

kids with apraxia that cannot speak and when I was growing up I don't think

there was such a thing as apraxia? Is this a new diagnosis which should

really be called mercury poisoning?

This e-mail and any attachments may contain confidential and privileged

information. If you are not the intended recipient, please notify the

sender immediately by return e-mail, delete this e-mail and destroy any

copies. Any dissemination or use of this information by a person other

than the intended recipient is unauthorized and may be illegal.

[Guest guest]

As you all know, I am always

trying to get the RCP and the BTA to back up their statements with references

to scientific evidence, but they never do. Somebody has asked me if I have

considered requesting this information through the Freedom of Information Act -

but the BTA/RCP are exempt from the FOI Act- so no joy there. Seems the BTA and

RCP have every avenue covered so they can carry on with their

guidelines/guidance/statements which frankly, can be put down to nothing other

than " opinion(s) " without the science. It seems wrong that the

BTA (as experts) appear as witnesses before the GMC when a doctor is brought

before them, and the GMC accepts whatever these 'expert' witnesses say without

question, without ever being requested to support their evidence. Is there no

way I can get the information that we need?

Surely, as a Charity, both of

these organisations are publicly funded organisations that work for the welfare

of the whole population….or am I living in ga ga land! I am aware they

are not public authorities, but even the Department of Health relies solely on

them as the 'experts'. Something just isn't right here. If we, the public, are entitled

to such information, how on earth can we make them give it to us?

http://www.ico.gov.uk/for_the_public/official_information/authorities.aspx

" The

Freedom of Information Act and Environmental Information Regulations apply to

public authorities and companies wholly owned by public authorities in England,

Wales and Northern Ireland. This broadly means publicly funded organisations

that work for the welfare of the whole population, including:

·

government

departments;

·

local

authorities;

·

educational

establishments;

·

NHS,

GPs and dentists;

·

police

forces; and

·

health

authorities.

Luv - Sheila

[Guest guest]

Hi Sheila

Wouldn't it be wise to ask why the Freedom of Information Act does not apply to

the BTA and RCP in the Letter to MPs as well?

Love

Jacquie

[Guest guest]

That's a whole separate matter Jacquie and it is too big to

include in this already lengthy tome. However, this does need investigation as

it means they can get away with murder and are responsible to nobody.

Luv - Sheila

Hi Sheila

Wouldn't it be wise to ask why the Freedom of Information Act does not apply to

the BTA and RCP in the Letter to MPs as well?

Love

Jacquie

[Guest guest]

The short answer is that the Freedom of Information Act applies to public authorities. The BTA and the RCP are not a public authorities. However PCTs are and if necessary we could ask then for any correspondence from the BTA (charges apply). From: thyroid treatment [mailto:thyroid treatment ] On Behalf Of SheilaSent: 29 June 2011 11:18thyroid treatment Subject: RE: Re: Freedom of Information Act That's a whole separate matter Jacquie and it is too big to include in this already lengthy tome.

[Ed]

[Guest guest]

Sheila

I don't know whether you are aware that there are proposals afoot to extend the

application of the FOIA, to quote from one web source:

" The Ministry of Justice is consulting with public and private entities and the

general public on whether to extend the application of the Freedom of

Information Act 2000 (FOIA), using its powers under section 5 of the FOIA, to

organisations that are not currently subject to the FOIA but which:

carry out functions of a public nature; "

Maybe TPA should make submissions to the Ministry of Justice with the aim of

bringing BTA and RCP into the net.

TonyC

[Guest guest]

Hi Val,

How are you and are you any closer to getting your hip

operation(s)?

Can you go into more detail regarding the Primary Care Trusts

and their ability to get any correspondence we need from the BTA please.

Luv - Sheila

The short answer is that the Freedom of

Information Act applies to public authorities. The BTA and the RCP are not a

public authorities. However PCTs are and if necessary we could ask then for any

correspondence from the BTA (charges apply).

That's a whole separate matter Jacquie

and it is too big to include in this already lengthy tome.

[Ed]

[Guest guest]

Oh my, thanks so much for this information Tony. Can you

please send me a link to the web site source you found this so I can contact

the right people please.

Luv - Sheila

Sheila

I don't know whether you are aware that there are proposals afoot to extend the

application of the FOIA, to quote from one web source:

" The Ministry of Justice is consulting with public and private entities

and the general public on whether to extend the application of the Freedom of

Information Act 2000 (FOIA), using its powers under section 5 of the FOIA, to

organisations that are not currently subject to the FOIA but which:

carry out functions of a public nature; "

Maybe TPA should make submissions to the Ministry of Justice with the aim of

bringing BTA and RCP into the net.

TonyC

[Guest guest]

Sheila

Try this for info on the proposed extensions to the FOIA:

http://webarchive.nationalarchives.gov.uk/+/http://www.justice.gov.uk/news/newsr\

elease070111a.htm

TonyC

[Guest guest]

Hello

Tony, we have a particular problem with this, in fact, we have several problems.

The main problem is that the British Thyroid Association and the Royal College

of Physicians (the two organisations that are causing us so many problem for

those suffering symptoms of hypothyroidism) after publishing their 'joint'

statement on The Diagnosis and Management of Primary Hypothyroidism'. Neither

of these organisations are PUBLIC BODIES so do not have to comply with the

Freedom of Information Act, yet the biggest public body of all, i.e., the

Department of Health - ONLY accepts information given to them by these non-public

bodies who can make whatever statements they wish without any accountability to

anybody. Neither can be made to back up their statements with any scientific

research or studies.

Yet

both the BTA ad RCP act in the same way as any other public body.

Perhaps

our particular situation should be discussed and explained to Justice Minister

Lord McNally so he can see the full picture and find a way around this terrible

'loophole' which, as far as I can see, is being exploited by both the RCP and

the BTA to meet their own agenda.

Do

we have any professional here who would be happy to look into this for us and

put something together in a letter we can send to the Justice Minister to try

to get this situation rectified with immediate effect?http://webarchive.nationalarchives.gov.uk/+/http:/www.justice.gov.uk/news/newsrelease070111a.htm

Although

the RCP and BTA do not have to comply with the FoIA, is there anybody willing

and able to check out the following organisations/associations to see if they

are classed as 'public bodies' and therefore open to public scrutiny under the

FoIA?

·

Association of Clinical Biochemists

·

The Society for Endocrinology

·

The British Thyroid Foundation Patient Support Group

·

The Royal College of General Practitioners

·

The British Society of Paediatric Endocrinology and Diabetes

There

is a contradiction between the publication of the JOINT Statement on The

Diagnosis and Management of Primary Hypothyroidism where they write this statement

was produced " on behalf of the Royal College of Physicians "

- yet in their Press Release , http://www.tpa-uk.org.uk/rcp1.pdf, they wrote

" The guidelines were produced by…. " and go on to

list all of the above organisations - subtle, but nevertheless…and at

that time, the RCP, BTA et al., had published a new 'Guideline' which

they soon changed to read 'Statement'

The

Press Release at that time shows the following quotes by Professor

, Chairman of the Guideline Development Group, who said: " I am

delighted that the statement provides real clarity for patients and health

professionals in this important clinical area. "

…and

Professor Jayne lin, President of the British Thyroid Association, said…

" This

statement, supported by a large number of patient and professional groups,

gives a clear indication to patients and their doctors how their thyroid

condition may be best diagnosed and treated. The British Thyroid Association

welcomes it as a way of ensuring that patients are provided with the highest

standard of care. "

To

date, we have been refused access by the RCP to the names of those individuals who

were members of this particular 'Working Party'. It is interesting to read

their choice of words

I believe when a guideline/guidance/statement is published by

such organisations where it is affecting the lives of tens of thousands of

sufferers, all the authors should be accountable and their names and status should

be accessible to everybody.

It does appear that all of the above organisations are being

allowed to " hide " under the umbrella of the RCP and BTA status of

'non-scrutiny', but as organisations in their own right, IF they

are subject to the Freedom of Information Act, then couldn't we demand that THEY

disclose the information that we need.

The publication of " Statement on the Diagnosis and

Management of Primary Hypothyroidism” by the above organisations presents

very serious healthcare problems for those patients with the peripheral thyroid

hormone deficiencies and perhaps if the above organisations are accountable under

the Freedom of Information Act, they should be made to respond to our questions

without delay.

Luv - Sheila

Sheila

Try this for info on the proposed extensions to the FOIA:

TonyC

[Guest guest]

I did post this the other day, but received no positive

feedback.

Do we have anybody on the forum who can help me with the

following particular problem.

The

main problem is that the British Thyroid Association and the Royal College of

Physicians (the two organisations that are causing us so many problem for those

suffering symptoms of hypothyroidism) after publishing their 'joint' statement

on 'The Diagnosis and

Management of Primary Hypothyroidism'. Neither of these organisations are

PUBLIC BODIES so do not have to comply with the FoIA, yet the biggest

public body, the Department of Health - ONLY accepts information given by these 'non-public' bodies who can make

whatever statements they wish without any accountability. Neither can be made

to back up their statements with any scientific research or studies.

Perhaps

our particular situation should be discussed and explained to Justice Minister

Lord McNally so he can see the full picture and find a way around what I believe is a terrible 'loophole' that, as far as I can make out, is being exploited by

both the RCP and the BTA to meet their own agenda - and five more other

thyroid/endocrine/medical.

Do

we have any professional here who would be happy to look into this for us and

put something together in a letter we can send to the Justice Minister to try

to get this situation rectified with immediate effect?http://webarchive.nationalarchives.gov.uk/+/http:/www.justice.gov.uk/news/newsrelease070111a.htm

Although

the RCP and BTA do not have to comply with the FoIA, is there anybody willing

and able to check out the following organisations/associations to see if they

are classed as 'public bodies' and therefore - open to public scrutiny under the FoIA?

·

Association of Clinical Biochemists

·

The Society for Endocrinology

·

The British Thyroid Foundation Patient Support Group

·

The Royal College of General Practitioners

·

The British Society of Paediatric Endocrinology and Diabetes

There

is a contradiction between the publication of the JOINT Statement on The

Diagnosis and Management of Primary Hypothyroidism where they write this

statement was produced " on behalf of the Royal College of

Physicians " - yet in their Press Release , http://www.tpa-uk.org.uk/rcp1.pdf,

they wrote " The guidelines were produced by…. " and

go on to list all of the above organisations - subtle, but

nevertheless…and at that time, the RCP, BTA et al., had published a new 'Guideline'

which they soon changed to read 'Statement'

The

Press Release at that time shows the following quotes by Professor

, Chairman of the Guideline Development Group, who said:

" I am delighted that the statement provides real clarity for

patients and health professionals in this important clinical area. "

…and

Professor Jayne lin, President of the British Thyroid Association,

said…

" This

statement, supported by a large number of patient and professional

groups, gives a clear indication to patients and their doctors how their

thyroid condition may be best diagnosed and treated. The British Thyroid

Association welcomes it as a way of ensuring that patients are provided with

the highest standard of care. "

To

date, we have been refused access by the RCP to the names of those individuals

who were members of this particular 'Working Party'.

I believe when a guideline/guidance/statement is

published by such organisations where it is affecting the lives of tens of

thousands (probasbly

millions) of

sufferers, all the authors should be accountable and their names and status

should be accessible to everybody.

It does appear that all of the above

organisations are being allowed to " hide " under the umbrella of the

RCP and BTA status of 'non-scrutiny', but as organisations in their own right - IF they are

subject to the Freedom of Information Act, then couldn't we demand that THEY

disclose the information we need.

The publication of " Statement on the Diagnosis and

Management of Primary Hypothyroidism” by the above organisations presents

very serious healthcare problems for those patients with the peripheral thyroid

hormone deficiencies and perhaps if the above organisations are accountable

under the Freedom of Information Act, they should be made to respond to our

questions without delay.

Any help anybody can give me

about this possible loophole, I would be really grateful. I need somebody with

a legal mind if possible.

Luv - Sheila

[Guest guest]

Strange - I did reply but my reply apparently didn't get past the moderators!

From what I can recall, what I said was that I had already filed a FOI request

with RCP and they said they would reply by 14 July. So I suggested we hang fire

until the RCP reply. I suspect the reply will be to the effect that they are

exempt but I have pointed out that that exemption may be removed in due course

in view of the extensions planned by the government so they should follow

recommended practices in the meantime.

I would be happy to take things on with a view to trying to get the exemption

for bodies like RCP, BTA removed. Although now retired, I do have a legal

background as I spent most of my working life in intellectual property law.

TonyC

>

> I did post this the other day, but received no positive feedback.

>

[Guest guest]

BUMP

> >

> > I did post this the other day, but received no positive feedback.

> >

>

[Guest guest]

Hi

Tony

Such

a message would not have been stopped by the Moderators so I can only think

that the letter never got to us at all. Seems I never posted this message to

you as I have just found it in my 'Drafts Box' for some reason - so sincere

apologies if you think your message had been ignored. Well, probably the reason

it never got sent is because I have received over 600 emails (probably more

because I lost count) since the Mail on Sunday article, and been working flat

out from 6.30a.m. to almost 10.00p.m. most days. It is now calming down, but there

is a lot I never got around to doing. I am going to Dr Skinner's Hearing on

Thursday and will be there each day until 3rd August, so will use that as a

good rest away from the computer.

Anyway,

back to our present problem. Can we force a Royal College to comply? I am not

particularly worried about the BTA, because I am sure under the present

circumstances, they can be made to comply, and we should check out also all the

other thyroid/endocrine associations/organisations that authored the terrible

'Statement' re diagnosis and treatment.

" From what I can recall, what I said was that I had

already filed a FOI request with RCP and they said they would reply by 14 July "

Have

you had a reply from them yet?

The

RCP and BTA ARE exempt from the FOIA because they are not Public Bodies

apparently (or that's the excuse they make), yet other Royal Colleges have to

comply with the FOIA - and other endocrine/thyroid associations also have to

comply, and the BTA and RCP also ACT as Public Bodies. Another question that

should be asked is - if the RCP and BTA are a non-public body, WHY is the Secretary

of State for Health taking ONLY the recommendations made by THEM and from no other

source when asked questions about the diagnosis and management of thyroid

disease. There are other thyroid guidelines that have been written that are

freely available (legally) to any doctor who wishes to use them, yet these

doctors are too terrified to go outside of the RCP and BTA et al. 'Statement on

the Diagnosis and Management of Primary Hypothyroidism' knowing, that like

other doctors who have dared to do so, they will be arraigned before the GMC in

the same way as Dr Skinner is this week. No doctor wants to put his career and

livelihood at risk - so doctors feel it is mandatory that they MUST comply with

their statements/guidelines. There is something very, very, very wrong here. It

appears the DoH is complicit with everything the BTA, RCP state, without ever

asking for this to be checked or ask for the scientific evidence to back up

what they say be made available. As far as the DoH is concerned, if the RCP,

BTA et al told them that we are all suffering from a functional somatoform

disorder (meaning, it's all in our head' then the DoH would take their word for

it).

Are

you still up to having a go in trying to find out if it is possible to

include the RCP and BTA. They have the health of millions of lives in their

hands and both are writing guidelines/statements that affect these lives, that

are NOT backed up with any science. TPA has written to them on numerous

occasions citing hundreds of references to the research/studies that has been

available for over 40 years asking them to amend many of their misleading (and

sometimes, downright incorrect information) without them even acknowledging

receipt, never mind amending any of these statements. They are causing real

harm to those suffering the symptoms of hypothyroidism.

Again,

sincere apologies that this has been stuck in my Drafts box. I need to go through

that and do a bit of raking.

Luv

- Sheila

Strange - I did reply but my reply apparently

didn't get past the moderators!

From what I can recall, what I said was that I had already filed a FOI request

with RCP and they said they would reply by 14 July. So I suggested we hang fire

until the RCP reply. I suspect the reply will be to the effect that they are

exempt but I have pointed out that that exemption may be removed in due course

in view of the extensions planned by the government so they should follow

recommended practices in the meantime.

I would be happy to take things on with a view to trying to get the exemption

for bodies like RCP, BTA removed. Although now retired, I do have a legal background

as I spent most of my working life in intellectual property law.

TonyC

>

> I did post this the other day, but received no positive feedback.

>

[Guest guest]

Hi Sheila

Sheila

No problem. I fully appreciate the pressure you must have come under since the

Mail on Sunday article.

As yet, I haven't received a reply from the RCP - they said my request has been

routed to the appropriate department (the trash bin probably?).

While the RCP is not a public body, they are on the record as saying:

" We have looked into this legislation and think we are not a body that comes

under the act, but we are trying to comply with the spirit of the act so if

there was a specific inquiry we would do our best to comply " .

That was in 2005 so it will be interesting to see whether they are true to their

word, see

http://www.bmj.com/content/330/7487/328.1.full

I'll press on with this and also see what I can do about getting the Ministry of

Justice to treat the RCP as a candidate for extension of the Freedom of

Information Act since the RCP, while not a public body, does make pronouncements

of great relevance to the public. For that reason, their decision making

processes need to be made transparent.

TonyC

>

> Hi Tony

>

> Such a message would not have been stopped by the Moderators so I can only

> think that the letter never got to us at all.

[Guest guest]

Hi Tony, I am just (if not more) concerned that the British

Thyroid Association should have to comply with the FOIA. I think what they are

getting away with is nothing short of criminal. They should be made to account

for every statement they make

in their guidelines/statements and their statements in their web

site i.e. http://www.british-thyroid-association.org/news/Docs/thyroid_statement.pdf

Statement on

the appropriate management of thyroid disease

The Clinical Committee of the

Society for Endocrinology and the British Thyroid Association recommend the use of sensitive

and specific blood tests as the only method for the precise diagnosis of

thyroid dysfunction and for the monitoring of treatment with approved

medications. Patients with normal thyroid function tests should not be

exposed to inappropriate treatment or medications of unproven value or

potentially harmful consequences.

…And herein lies the

rub! They state " for the monitoring of treatment with approved medications " yet in their

Statement on the Diagnosis and Management of Primary Hypothyroidism they go on

to state " Overwhelming

evidence supports the use of Thyroxine (T4) alone in the treatment of hypothyroidism.

Thyroxine is usually prescribed as levothyroxine. We do not recommend the

prescribing of additional Tri-iodothyronine (T3) in any presently available

formulation, including Armour thyroid, as it is inconsistent with normal

physiology, has not been

scientifically

proven to be of any benefit to patients, and may be harmful " - yet T3 is a fully legal licensed thyroid hormone

replacement that is in The British National Formulary for the treatment of

hypothyroidism, which, as they state in the other statement above…. " for

the monitoring of treatment with approved medications " . Do they mean another thyroid

hormone replacement, or do we take it they are referring to T3?? On the one hand,

doctors must not treat with any other thyroid hormone but T4, then they talk " other

approved thyroid medications " . Is it any wonder doctors are

confused. We need to make them back up such statements by people's

lives are dependant on such statements, which every UK doctor is following, yet

they never show the science - they tell us that this is a consensus decision.

As far as the RCP is concerned, there were loads of us who asked

the RCP to give a list of the names and the qualifications of the 'authors' of

the Hypothyroid Statement, and every single one of us were refused. They were

actually breaking their own guidelines, but there was not a thing we could do

to make them, because of their protection under the FOI. Whoever wrote those

guidelines could have been uncle tom Cobley and all, but I have my suspicions.

Such information is VERY important.

Sorry Tony, I bet you wish you hadn't started this. Me getting

tired and going downstairs to relax.

Luv - Sheila

No problem. I fully appreciate the pressure you must have come under since the

Mail on Sunday article.

As yet, I haven't received a reply from the RCP - they said my request has been

routed to the appropriate department (the trash bin probably?).

While the RCP is not a public body, they are on the record as saying:

" We have looked into this legislation and think we are not a body that

comes under the act, but we are trying to comply with the spirit of the act so

if there was a specific inquiry we would do our best to comply " .

That was in 2005 so it will be interesting to see whether they are true to

their word, see

http://www.bmj.com/content/330/7487/328.1.full

I'll press on with this and also see what I can do about getting the Ministry

of Justice to treat the RCP as a candidate for extension of the Freedom of

Information Act since the RCP, while not a public body, does make

pronouncements of great relevance to the public. For that reason, their

decision making processes need to be made transparent.

TonyC

>

> Hi Tony

>

> Such a message would not have been stopped by the Moderators so I can only

> think that the letter never got to us at all.

[Guest guest]

>

> Hi Sheila

> Sheila

>

> No problem. I fully appreciate the pressure you must have come under since the

Mail on Sunday article.

>

> As yet, I haven't received a reply from the RCP - they said my request has

been routed to the appropriate department (the trash bin probably?).

>

> While the RCP is not a public body, they are on the record as saying:

>

> " We have looked into this legislation and think we are not a body that comes

under the act, but we are trying to comply with the spirit of the act so if

there was a specific inquiry we would do our best to comply " .

>

> That was in 2005 so it will be interesting to see whether they are true to

their word, see

>

> http://www.bmj.com/content/330/7487/328.1.full

>

> I'll press on with this and also see what I can do about getting the Ministry

of Justice to treat the RCP as a candidate for extension of the Freedom of

Information Act since the RCP, while not a public body, does make pronouncements

of great relevance to the public. For that reason, their decision making

processes need to be made transparent.

>