This website is dedicated to the millions of thyroid patients who are being ignored and left to suffer unnecessarily, and to healthcare practitioners, who want to better serve those patients.

TOO CLOSE FOR COMFORT

Thyroid Patient Advocacy (TPA) believes the relationship between the various UK Thyroid and Endocrinology Charities and the Royal College of Physicians is both inward looking and incestuous and should be investigated as a matter of urgency.
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CONCERNING: THE RESPONSE FROM THE SCOTTISH GOVERMENT TO THE THYROID PETITION ‘PE01463’ SUBMITTED TO THE SCOTTISH PARLIAMENT http://www.scottish.parliament.uk/S4_PublicPetitionsCommittee/General Documents/PE1463_II_Scottish_Government_05.02.14.pdf and the RCP Policy Statement on Primary Hypothyroidism.

One MUST questions WHY the Scottish Government have taken account of ONLY those submissions from the British Thyroid Association (BTA) the Scottish Clinical Biochemistry Managed Diagnostics Network (SCBMDN) and the Scottish Health Technologies Group (SHTG) in reaching their decision NOT to set up a Short Term Working Group to investigate this matter. WHY has the Scottish Government NOT taken into consideration ANY of the evidence submitted by others? This runs counter to the statement made by Michael Matheson that “ALL AVAILABLE CLINICAL EVIDENCE should be considered. These three organisations, along with many others, have a close affiliation with the Royal College of Physicians (RCP).

NOTE: In the responses received to Petition PE01463, I cannot see one from the BTA even though Macheal Matheson points out that he has taken their response into consideration. Why has the response from the BTA not been published?

Charities involved as authors in the policy statement on The Diagnosis and Management of Primary Hypothyroidism.

o The Royal College of Physicians in particular its Patient and Carer Network and the Joint Specialty Committee for Endocrinology & Diabetes (RCP) (Reg. Charity 210508)
o The Association for Clinical Biochemistry (ACB) (No.863235)
o The Society for Endocrinology (SFE) (Reg. Charity 266813)
o The British Thyroid Association (BTA) (Reg. Charity 1119631)
o The British Thyroid Foundation (BTF) (Reg. Charity 1006391)
o The British Thyroid Foundation Patient Support Group (BTF) (Reg.Charity 1006391)
o The British Society of Paediatric Endocrinology and Diabetes. (BSPED) (Reg. Charity 283986)

At first glance, you might think all the above associations must know what they are doing and have the medical evidence to back up their statements. Don’t allow yourself to be drawn into this web. The RCP policy statement
was written on behalf of the above UK thyroid/endocrinology charities that appear to be 7 separate organisations. But take a closer examination and you will find each of these charities are working closely together for their mutual benefit.

The British Thyroid Association (BTA), The British Thyroid Foundation (BTF) and the Association of Clinical Biochemists (ACB) were the authors of the 2006 UK Thyroid Function Test Guidelines so they worked as one organisation. As the BTF Patient Support Group is run by the BTF there is still only one organisation. The BTA, BTF, and the ACB, are all close affiliates to the RCP.
On the website of The British Society of Paediatric Endocrinology and Diabetes (BSPED) they have a statement saying they are affiliated with RCP and the Society for Endocrinology (SFE) (see below for the above organisations connections to SFE) so, one could say there is only ONE organisation involved in the authorship of the policy statement on the diagnosis and management of primary hypothyroidism.

The Scottish Clinical Biochemistry Managed Diagnostics Network (SCBMDN) and the Scottish Health Technologies Group (SHTG) that the Scottish Government also have a close affiliation with the RCP
Then, we have Professor Richard Williams, who is the President of the BTA and Trustee of the Society for Endocrinology (SFE). Professor Richard Williams is also a Trustee of the British Thyroid Foundation (BTF).

The BTFs Director is also Membership Secretary of Thyroid Federation International (TFI) and also a Trustee of Thyroid Eye Disease Charitable Trust (TED).
All have joint meetings at The British Endocrinology Society (BES). Both BTA and BTF have a trustee in common and seem to keep abreast of BES meetings. However one could argue that this could be because it is all the endocrinology field of research. We cant find that BES is a Registered Charity, but there are similarities in their list of meetings and the way they are ordered ‘Associates’. When we Google BES, and then click on BES2009 – it takes us direct to the Society for Endocrinology (SFE) – http://www.endocrinology.org/meetings/2009/sfebes2009/ .

You can also see a list of the SFEs Corporate Members: ALMIRALL LTD – ASTRAZENECA PLC – BAYER SCHERING PHARMA – BIOSCIENTIFICA LTD – ELI LILLY AND COMPANY – FERRING PHARMACEUTICALS LTD – GENZYME THERAPEUTICS LTD – IPSEN LTD – MERCK SERONO LTD – NOVARTIS PHARMACEUTICALS UK LTD – NOVO NORDISK LTD – NYCOMED UK LTD – PFIZER LTD – PROSTRAKAN – SANDOZ LTD
And when you go back to the BTA site sponsors, you get a little more BESand the BTA show gratitude to the Clinical Endocrinology Trust (CET) who have generously sponsored the Pitt Rivers Lectures at the BES Annual Meeting.

We also see on the BTA web site http://www.british-thyroid-association.org/info-for-patients/Docs/thyroid_statement2.pdf there is a link to the Society for Endocrinology, showing the UK SFE President is Professor Julia Buckingham.
• http://uk.linkedin.com/pub/julia-buckingham/11/459/43b shows Julia Buckingham’s involvement with Big Pharma and the SFE –
• British Pharmacological Society: President, 2004 to date
• The Journal of Neuroendocrinology: Editor-in-Chief, 2004 to date
• BioScientifica Ltd, Society for Endocrinology: Chairman 2002 to date
• British Society for Neuroendocrinology: Member of Council, 2004 to date
• Member of the Board of Governors, St Mary’s School, Calne, Wiltshire, 2003 to date
• We see that BioScientifca Ltd – of which Julia Buckingham is Chairman is the ‘company’ section of the SFE.

Then there is the ‘Clinical Endocrinology Trust’ (CET) – are they connected too?

Yes!

The Clinical Endocrinology Trust. (CET) – Registered Charity 288679

Trustees:
Mrs Elizabeth Whelan
Dr J S Bevan
Prof. A P Weetman (Ex President BTA)
Prof J R E Davis
Prof. Jayne Agnete Franklyn (Ex President BTA)
There are no other charities displayed on the CET details for Professor Jayne Agnete Franklyn MD PHD FRCP. Yet she IS a Trustee of the BTA Charity 1119631 and also a Trustee of the BTF Charity 1006391. Why has she not declared these?

All those Big Pharma are on the corporate members list of the SFE – and at the bottom of the BTA site also.

ALL the above organisations/associations are close affiliates to the Royal College of Physicians.

We believe that the above organisations are involved in every meeting where guidelines and recommendations with the RCP are involved. See http://www.british-thyroid-association.org/info-for-patients/Docs/TFT_guideline_final_version_July_2006.pdf

No patient organisations or medical practitioners who are diametrically opposed to the RCP policy statement have been approached for their views.

If there are laws regarding transparency of charitable organisations, then surely such laws will apply to the RCP.In the RCP Annual Report and Accounts 2007 it reads:
We need to know the transparency requirements of a charity to give out the names of those sitting in on committees such as those for the guidelines.

Yet the RCP have refused to publish the names of those who were on the working party involved in the policy statement on The Diagnosis and Management of Primary Hypothyroidism.
Is the BES an umbrella organisation for ALL endocrine societies? That might make sense. But, if you Google British Endocrine Society BES – it always takes you to the SFE website – so why a separate name? The BES has also the same address as the SFE.

The BTA is the member organisation for the professional Endocrinologists. The BTF is the BTAs patient organisation. How many Endocrinologist are members of BTA? If their members are composed of Endocrinologists, that means they will be all members of the SFE– which is sponsored by Big Pharma. Who accredits them?

There’s a statement from an old newsletter from the BTA to their members.

Numerous Web sites are devoted to this issue, some of which seem to be most convincing but are misleading. These need to be monitored, and action taken if and when appropriate. Look around for them on the Web, and you will see what your patients are reading!

The BTA also has an important role in the development of evidence-based national guidelines. There are currently two active groups. A multidisciplinary group has been working on national guidelines for the management of thyroid cancer. Following good progress, the guidelines should soon be available.

However in the same letter, it states…
“The second group is addressing guidelines for the use of thyroid tests. These are also important for many reasons, not least of which is the current (ill-advised) practice of using TSH alone as the first-line test for thyroid dysfunction”. Written by Pat Kendall-Taylor (BTA) The same lady’s profile on a networking site where there are some familiar names here ?
http://www.biomedexperts.com/Profile.bme/690663/Pat_Kendall-Taylor

The British Society for Paediatric Endocrinology and Diabetes. (BSPED) have a statement on their website as follows
The charity works closely with national agencies for paediatrics and is affiliated with the RCPCH, BES, Royal College of Physicians and the Society of Endocrinology

FROM THE RCP GUIDE TO CONFLICTS OF INTEREST
http://www.charitycommission.gov.uk/detailed-guidance/trustees-staff-and-volunteers/conflicts-of-interest-in-charities/

4. How do I identify a conflict of interest?

Conflicts of interest may come in a number of different form :
o direct financial gain or benefit to the trustee, such as:
o payment to a trustee for services provided to the charity;
o the award of a contract to another organisation in which a trustee has an interest and from which a trustee willreceive a financial benefit; or
o the employment of a trustee in a separate post within the charity, even when the trustee has resigned in order to take up the employment.
o indirect financial gain, such as employment by the charity of a spouse or partner of a trustee, where their finances are interdependent;
o non-financial gain, such as when a user of the charitys services is also a trustee; and
o conflict of loyalties, such as where a trustee is appointed by the local authority or by one of the charitys funders, or where a friend of a trustee is employed by the charity.

Further information about the most frequent situations where conflicts of interest arise can be found in section 8.
So…it appears that (for the moment, until further investigation takes place) we have the BTA, BTF, BES, SFE, RCP, BSPED, CET, SCBMDN and SHTG – ALL, apparently working together to serve their common interests but they are failing to serve the interests of the patient

………AND THE RCP DARE TO DECLARE TO THE WORLD THAT THEIR POLICY STATEMENT IS A RESULT OF A CONSENSUS BETWEEN THE VARIOUS UK THYROID AND ENDOCRINOLOGY CHARITIES/ORGANISATIONS!

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Who dares ~ wins?
Who enjoys royal patronage ~ may invoke the hostility of the denizens of that place
Who dares ~ may invoke a lawsuit for Breach of Trust ?

Bobm9uk,