A response from my Letter to my MP !!!

[Guest guest]

Have just received a response and he has offered to meet up and discuss the matter with me :)Jackie xDear Mrs KayThank you for taking the time to email me with your concerns and if you would like to meet me to discuss this in person Margaret of my office would be happy to make the arrangements. She can be contacted on xxxxx until Friday or email xxxxxxx@... .I look forward to hearing from you.Kind regards

[Guest guest]

Brilliant News,

Keep it smple and don't baffle the poor man when you get to meet....

.

>

> Have just received a response and he has offered to meet up and discuss

> the matter with me

>

> Jackie x

[Guest guest]

thats hopeful, . Well done.

xx

>

> Have just received a response and he has offered to meet up and discuss

> the matter with me

>

> Jackie x

>

> Dear Mrs Kay

>

> Thank you for taking the time to email me with your concerns and if you

> would like to meet me to discuss this in person Margaret of my office

> would be happy to make the arrangements. She can be contacted on xxxxx

> until Friday or email xxxxxxx@... .

>

> I look forward to hearing from you.

>

> Kind regards

>

[Guest guest]

My response says he is giving it full attention and has written to the DoH on my

behalf and will be in touch when theres anything to report.

Carole

>

> Have just received a response and he has offered to meet up and discuss

> the matter with me

>

> Jackie x

>

>

[Guest guest]

It appears that MP's are now starting to write back to their constituents.

Please see the response that one of our members received from her MP that was

written by Fluck, Customer Service Centre, DoH. - and my response that

could be used to respond to some of his comments. These may help if you get a

similar response from your own MP. My response in blue.

Sheila

Our

ref: DE00000623028

Dear Ms ********

Thank you for your further correspondence of 8 June to Lansley about the

care of thyroid patients. I have been asked to reply.

I was sorry to read that you were not satisfied with the Department’s

previous response (our ref: DE00000615813).

I should explain that the reference to the need for GPs to recognise National

Institute for Health and Clinical Excellence (NICE) guidelines in that email

referred to the approach that GPs should take to the provision of medicines in

general. Where there are such guidelines, GPs should take them into

account. As you rightly point out in your email, there are no such

guidelines regarding hypothyroidism. I apologise if this was not made

clear in the Department’s email. However, as explained, GPs are

still required to exercise their clinical judgement in this case.

But, for GP’s,  the problem is that should they dare use

their clinical judgement when the serum thyroid function test results are

anywhere within the reference range, some have been arraigned before the GMC

and therefore, doctors feel the BTA,RCP Statement on the Diagnosing and

Treatment of Hypothyroidism is MANDATORY. They are NOT taking into account any

of the symptoms and signs, results of a thorough clinical examination (which

rarely takes place), past medical history or even ask whether there are members

of their family who have a thyroid or autoimmune condition. They are not carrying

out ALL the serum thyroid function tests, which are essential to get a full

picture, because they have not been taught about the workings of the greater

thyroid system at medical school, or – more likely, are too afraid to go

outside of the RCP, BTA statements.  The tests that should be done are TSH,

free T4, free T3, and tests to see whether they have antibodies to their

thyroid, which are TPO and TgAb. Whatever the BTA/RCP statements – they

do not back up their statements with scientific evidence.

You also refer to guidelines offered by the British Thyroid Association (BTA)

and the Royal College of Physicians (RCP). Regarding armour thyroid

extract (desiccated pig thyroid extract) the BTA states that " there is no

evidence of a beneficial effect … compared to unitary therapy with

thyroxine, and we believe that the findings so far do not offer any

advantage " . Several other leading organisations, including the RCP,

endorse this advice.

The " several other organisations” are JOINT authors of

the Statement on the Diagnosis and Management of Primary Hypothyroidism”,

but TPA have never been given any proof of this. TPA and several other

organisations, researchers, doctors, patients asked the RCP to list the names

of the individual authors in the Working Party who created this Statement on

the Diagnosis and Management of Primary Hypothyroidism, but this list has been

refused.

I recognise that the RCP and BTA are not ‘Public

Bodies’ and therefore, do not have to comply with the Freedom of

Information Act, but that as far as I am aware, the Association of Clinical

Biochemists, The Society for Endocrinology, The British Thyroid Foundation

Patient Support Group, The British Society of Paediatric Endocrinology and

Diabetes and the Royal College of Physicians,  should comply with the FoIA, and

therefore, these organisations should comply and make available a list of the

names of all the co-authors and their qualifications.

Please read the Thyroid Patient Advocacy Rebuttal to the both the

BTA’s Statements on Treatment using Synthetic T4.T3 Combination  versus

levothyroxine(T4)-only therapy and the Statement on the Treatment using Armour

Thyroid versus T4-only Therapy http://www.tpa-uk.org.uk/tpa_responds1.php

, where TPA found the majority of statements made by the BTA to be misleading

and, in parts, incorrect. TPA sent the rebuttals to all members of the

Executive Committed (both rebuttals backed by citing approximately 240

references to the medical/scientific evidence and available studies, asking the

BTA to amend their statements accordingly. Not one member of the Executive

Committee nor the President responded to our requests and not one misleading

and incorrect statement was corrected, and these statements are on their web

site under the incorrect heading of ‘Guidelines’ today. Should the

DoH wish to continue to disseminate the information given to them by the RCP

and BTA, please ask the BTA and RCP to clarify all of their statements to the

satisfaction of all interested parties, i.e.  researchers, doctors, patients,

and other thyroid charities.

The lack of references to any scientific evidence and studies is

causing real harm to those suffering symptoms of hypothyroidism. Why is the

Department of Health accepting what the BTA write without checking the content?

Using such information without having adduced any evidence to support their

assertions makes the DoH complicit with the BTA. This is appalling and this

alone should be investigated. Without scientific evidence, doctors are unable

to reach a correct diagnosis and treat their patients with the correct form of

thyroid hormone replacement.

In addition, the Medicines and Healthcare products Regulatory Agency has not

issued a marketing authorisation for this product.

This again is downright INCORRECT information. TPA received a

letter from the MHRA and 3 Emails stating that doctors CAN prescribe Armour

Thyroid, Erfa Thyroid, Westhroid and Nature Throid. Here is a quotation from

the letter from the MHRA regarding issuing a marketing authorisation for these

products.

·

“The MHRA can object to importation of

an unlicensed medicine if there are concerns about the safety or quality of the

product. The MHRA cannot object to importation of an unlicensed medicine solely

on the grounds of efficacy. In the case of these thyroid

preparations, the MHRA has not objected to their importation provided that they

are authorised prescription only medicines, standardised to the USP, and that

they are for the treatment of patients with thyroid diseases, for whom the UK

licensed synthetic thyroid hormones are not suitable.

However,

I should add that the BTA and RCP are independent of the Government.

So why does the Department of Health INSIST on ONLY taking

statements made by the RCP and BTA into account whenever it comes to all things

thyroid. Thyroid Patient Advocacy – also a Charity (Charity No 1138608)

and all such other thyroid charities should be given equal consideration. 

It

remains the case that GPs are encouraged to use their clinical knowledge and an

assessment of the symptoms experienced by individual patients in making a

diagnosis for thyroid treatment. Doctors are free to use whatever

guidance they feel is appropriate when making a diagnosis. Subject to

certain conditions, GPs are allowed to prescribe any product, including any

unlicensed product or product not licensed for a particular indication that

they consider to be a medicine necessary for the treatment of their patients.

MP’s quote this to their constituents on a regular basis, but

the FACT is that doctors in the UK are NOT free to use whatever guidelines they

wish. Guidelines should be advisory, and as you state, doctors can choose which

guideline to follow, but the BTA. RCP have not created a

‘guideline’ neither have they created a ‘guidance’ they

have, instead, created a ‘statement’ which is only their OPINION.

Guidelines/guidance/statements are not advisory when there is guideline/guidance/statement

enforcement in the picture.  They are mandatory, in spite of the disclaiming

statement on the BTA, ACB, BTF UK Guidelines on Thyroid Function Tests and  the

RCP Clinical Guideline Standards.  Doctors have been, and are being, prosecuted

for not adhering to “voluntary” and incomplete guidelines.

Thyroid Patient Advocacy has over 2300 members. Many of these

members write that when asking for a diagnosis or treatment outside of the

RCP/BTA et al statement on the diagnosis and management of primary

hypothyroidism, they tell their patients they dare not. They tell their

patients that should the do so, they would be put at risk of losing their

career and livelihood. Why would a doctor tell his patients this if they were

‘allowed’ to prescribe any product, including any unlicensed

product or product not licensed for a particular indication, and that they

consider to be a medicine necessary for the treatment of their patients. This

is illogical, and the cause for doctors reacting in such a way should be

investigated. Ask any doctor what they think about prescribing the active

thyroid hormone for their patients who cannot regain their health on the mainly

INACTIVE thyroid hormone levothyroxine and you are likely now to be told that

T3 is either dangerous, or doesn’t work and that all patients need is

T4-only – because they parrot the BTA statements without any

consideration as to their correctness.  This needs investigation.

Because the RCP, BTA et al statement on the diagnosing and

management of hypothyroidism insist that patients should be treated with

T4-only therapy and that doctors should not prescribe any form of the active

thyroid hormone T3, either synthetic or natural,  Thyroid Patient Advocacy is

at present in the process of creating a Register of those patients who are counterexamples

to levothyroxine-only (T4) therapy. This survey is applicable only to those who

continued to suffer symptoms on T4-only therapy, and who found those symptoms

were mitigated or disappeared once they were started on a T3 hormone containing

product.

(A counterexample is a situation which fits the concept or premise

of an idea but produces a different result. To be responsible, a

scientist who finds a counterexample to his idea, must limit or abandon his

idea as unworkable or not reliable. The T4-therapy does not work for all.

Some need T3 instead or with T4. Once they regain normal health with T3,

they are counterexamples to T4-only therapy.)

The objective of this Register is to draw to the attention of those

responsible authorities around the world (including the DoH), the dire need for

an urgent re-examination of the existing protocol for the diagnosis and

management of the symptoms of hypothyroidism.

Regarding

your dissatisfaction with the approach to hypothyroidism more generally, I hope

it will reassure you to learn that the Department of Health is committed to

improving services for people with long-term conditions. The Government

recently introduced the Health and Social Care Bill, which sets out its plans

for NHS reform and its commitment to deliver excellence and to tackle

inequalities. This vision for health and social care will necessitate a

fresh approach to developing clinical strategies, which will focus on improving

outcomes whilst giving maximum freedom to local services to innovate and

improve.

Yes, we are aware of this. In every letter sent to the DoH about

the problems surrounding those patients in trying to get a diagnosis or a

choice of treatment, the letter from the MP comes back quoting this exact

paragraph. It tells us nothing and does NOT address or the particular points we

keep making.

Your email suggests that there is a shortage of doctors with specialist

knowledge of endocrinology. Local NHS organisations are responsible for the

skill mix of their workforce. They are best placed to assess the health

needs of their local community and must have the freedom to deploy staff in

ways appropriate for local conditions.

There IS a shortage of doctors with the specialist knowledge of the

greater thyroid system. Type in the name of any (or EVERY) endocrinologist into

Google or other search engine and check out their speciality. In almost every

case it will show that their specialty is diabetes. Many specialists in

diabetes know little to nothing about hypothyroidism and this is why they

follow the statements made by the BTA and RCP blindly, probably believing, like

the DoH, that these two organisations know what they are talking about because

they are considered ‘experts’ in the field, and like the DoH, they

too do not do the required research to find whether the statements being made

are correct. THIS IS ONE REASON WHY IT IS ESSENTIAL THAT THE SECRETARY OF STATE

FOR HEALTH IS URGED TO CALL FOR AN IMMEDIATE PUBLIC ENQUIRY.

The

Centre for Workforce Intelligence has already been commissioned to provide an

assessment of medical supply and demand by specialty, region and care pathway

to inform education and training commissions for 2011 and beyond. The

recommendations for the medical speciality of endocrinology, which were

published on 18 August 2010, suggested that national supply is broadly in line

with predicted demand, but that further work is needed to address geographic

variations in supply and to improve the take-up rate of training places.

May

I suggest that the Secretary of State looks into the correct definition of

‘Hypothyroidism’ to put an end once and for all to the confusion

this word causes for both doctors and patients. Perhaps a Question should be

asked in The House regarding this.

There

are two ‘types’ of ‘hypothyroidism’ – but both

types are physiologically different and both ‘types’ require a

different thyroid hormone replacement therapy – but only one

‘type’ is being recognised.

For want of a better description ‘Type 1’

hypothyroidism, is defined as primary, secondary or tertiary.  Primary

hypothyroidism, means the thyroid gland doesn't produce an adequate amount

of thyroxine (T4). Secondary hypothyroidism develops when the pituitary

gland does not release enough of the thyroid-stimulating hormone (TSH) that

prompts the thyroid to manufacture more thyroid hormone T3 and T3. Tertiary

hypothyroidism results from a malfunction of the hypothalamus, the part of

the brain that controls the endocrine system.

‘Type 1’ hypothyroidism is associated with insufficient

secretion by the thyroid, the pituitary or the hypothalamus gland, thereby

reducing the mainly inactive T4 available for conversion, to the active

hormone T3 that is needed by ever cell in the body and brain to make them

function. In the majority of cases, ‘Type 1’ Hypothyroidism may be

corrected by using levothyroxine (T4-only) replacement.

‘Type 2’ hypothyroidism is defined as

deficiencies in the peripheral conversion of T4 to T3, the subsequent reception

of T3, and the use of T3 by the body's cells. ‘Type 2’ reduces

the amount of the active thyroid hormone T3 in the body, producing the same

sort of symptoms that ‘Type 1’ does. Environmental toxins may

also cause or exacerbate the problem. The pervasiveness of ‘Type 2’

hypothyroidism has yet to be recognised by the RCP, BTA and mainstream

medicine, but already is in epidemic proportions. ‘Type 2’

hypothyroidism can be corrected by T3 hormone replacement therapy - and not

by T4-only therapy. ‘Type 2’ hypothyroidism should correctly be

called  Euthyroid Hypometabolism.

This question has been asked of the Secretary of State for Health

before, but it continues to be ignored, and because it is getting ignored,

there are over 250,000 citizens in the UK alone who are being treated with the

wrong thyroid hormone replacement therapy and this is causing them great harm.

Please will you do what you can to address this problem can be brought to a

satisfactory conclusion.

The Government is committed to publishing a consultation on education and

training, based on the principle that the system should be driven by healthcare

providers and underpinned by strong clinical leadership.

Then please contact and consult

with other relevant organisations such as Thyroid Patient Advocacy www.tpa-uk.org.uk whose objects are

“The relief of sickness and preservation of health of persons suffering

from thyroid-related disease and related conditions in the UK and worldwide,

particularly but not exclusively by:

a) Educating

and promoting good practice in the treatment of thyroid-related disease and

related conditions amongst health professionals, service provides and the

public.

Promoting

high standards and professional competence in the provision of patient care in

England and Wales as the Directors shall determine from time to time.

NHS

employers will have greater autonomy and accountability for planning and

developing their workforce, in consultation with patients. Intervention

at national level will be minimal, leaving the maximum possible opportunities

for flexible local implementation and innovation by providers, commissioners

and local government.

Then again, please contact and consult other thyroid Charities such

as Thyroid Patient Advocacy, and Thyroid UK. In the RCP, BTA et al .Statement

on the Diagnosing and Management of Primary Hypothyroidism’, the RCP has

failed to consult those patients in diametric opposition to their statement in

the UK. TPA and TUK represent thousands of sufferers of thyroid disease. The

RCP did NOT approach either TPA or TUK for our views.  The RCP has, in fact,

tried to discredit and denigrate those very people who oppose them, first, by

silence, then by riding roughshod over their desperate need for a cure, and to

use their 'collective' power to terrorise doctors into submission, even when

these doctors know that the suggested protocol is wrong.

This will help to balance what can be achieved between commissioning a

workforce to meet the specific healthcare needs of local populations and the

regional and national delivery of specialist services, such as diabetes

services.

…and you should add here

…and hypothyroidism services.

Regarding

the issue of GPs’ pay, the majority of GPs are independent contractors

who hold contracts with the NHS for providing services. They do not

receive a fixed salary from the NHS. The income earned by practices from

their contractual arrangements covers both the expenses involved in running the

practice (including, for example, pay for salaried GPs, nurses and

receptionists) and the net income for the contractor GP.

The intention of the GP contract agreement was to allocate resources according

to the relative workload associated with each practice’s patient

population and give GP practices greater flexibility and autonomy in the

delivery of services.

This was designed to provide practices with funding to cover their

infrastructure (information management and technology, premises and workforce)

and improved GP remuneration whilst also focussing on delivering better quality

of services to patients.

GP contract remuneration prices are currently determined through a negotiated

agreement reached between the British Medical Association and NHS Employers or

determined by the Doctors and Dentists Review Body responsible for considering

any issues around GP remuneration.

The latest figures published by the Information Centre for health and social

care for 2008/09 show the average net income for GP contractors in England is

£109,600.

Whilst there has been an overall decrease in GP earnings for the third year

running, the Government is looking to ensure better value for money from the

overall investment in the GP contract and will make sure resources are being

used to the greatest benefits of patients and the taxpayer.

The Government is taking immediate steps to address public sector pay. In

the 2010 Emergency Budget a two-year public sector pay freeze from April 2011

was announced that will affect GPs. Only staff earning less than the full

time equivalent of £21,000 would receive a flat rate increase of £250 per

annum.

I hope this reply is helpful.

Yes, it is helpful on various points and many thanks for this.

However, on other points, it is not helpful because it repeats the incorrect

and misleading information that MP’s keep reiterating – all of

which come from either the Royal College of Physicians or the British Thyroid

Association. Again, this is why the Secretary of State must be urged to call

for an immediate public enquiry.

Please will you be kind enough to address (with the correct information)

the specific points that I have raised.

Yours sincerely,

Fluck

Customer Service Centre

Department of Health

Customer Service Centre

Department of Health

From: thyroid treatment

[mailto:thyroid treatment ] On Behalf Of daring_to_win

Sent: 07 July 2011 16:59

thyroid treatment

Subject: Re: A response from my Letter to my MP

!!!

My response says he is giving it full attention

and has written to the DoH on my behalf and will be in touch when theres

anything to report.

Carole

>

> Have just received a response and he has offered to meet up and discuss

> the matter with me

>

> Jackie x

>

>

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Response to MP's.doc