Thyroid UK News

Peter Warmingham, BSc (Hons), MIET, one of Thyroid UK's Trustees has had an article accepted for Dr John C Lowe's journal, Thyroid Science.

The article discusses the hypothesis that if a clinician denies a patient more exogenous (levothyroxine etc) thyroid hormone because his or her TSH level is suppressed, the patient will not have enough thyroid hormone for maintaining normal thyroid hormone-driven cellular metabolic processes.

It's an extremely well written article and one that endocrinologists should take heed of.

The article is available here:

http://www.thyroidscience.com/hypotheses/warmingham.2010/warmingham.7.18.10.pdf

The NHS White Paper, Equity and excellence: Liberating the NHS sets out how they will put patients at the heart of everything the NHS does; focus on continuously improving those things that really matter to patients - the outcome of their healthcare; and empower and liberate clinicians to innovate, with the freedom to focus on improving healthcare services.

There are a number of statements relate to health information which Thyroid UK hope will change things in respect of how doctors deal with thyroid disease:

· The Government's ambition is to achieve healthcare outcomes that are among the best in the world. This can only be realised by involving patients fully in their own care, with decisions made in partnership with clinicians, rather than by clinicians alone.

· Healthcare outcomes are personal to each of us. The outcomes we experience reflect the quality of our interaction with the professionals that serve us.15 But compared to other sectors, healthcare systems are in their infancy in putting the experience of the user first, and have barely started to realise the potential of patients as joint providers of their own care and recovery. Progress has been limited in making the NHS truly patient led.16 We intend to put that right.

· We want the principle of "shared decision-making" to become the norm: no decision about me without me. International evidence shows that involving patients in their care and treatment improves their health outcomes,17 boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment.18 It can also bring significant reductions in cost, as highlighted in the Wanless Report,19 and in evidence from various programmes to improve the management of long-term conditions.20 This is equally true of the partnership between patients and clinicians in research, where those institutions with strong participation in clinical trials tend to have better outcomes.

· Information generated by patients themselves will be critical to this process, and will include much wider use of effective tools like Patient-Reported Outcome Measures (PROMS), patient experience data, and real-time feedback. At present, PROMs, other outcome measures, patient experience surveys and national clinical audit are not used widely enough. We will expand their validity, collection and use. The Department will extend national clinical audit to support clinicians across a much wider range of treatments and conditions, and it will extend PROMs across the NHS wherever practicable.

· Our aim is that people should be able to share their records with third parties, such as support groups for patients, who can help patients understand their records and manage their condition better. We will make it simple for a patient to download their record and pass it, in a standard format, to any organisation of their choice

· In future, patients and carers will have far more clout and choice in the system; and as a result, the NHS will become more responsive to their needs and wishes. People want choice,22 and evidence at home and abroad shows that it improves quality.23 We are also clear that increasing patient choice is not a one-way street. In return for greater choice and control, patients should accept responsibility for the choices they make, concordance with treatment programmes and the implications for their lifestyle.

The whole paper is available to download from here (PDF format opens in new window)

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/
@dh/@en/@ps/documents/digitalasset/dh_117794.pdf

www.endobible.com

Dr Frankie Swords, a consultant endocrinologist at the Norfolk and Norwich University Hospitals NHS Foundation Trust has been working with Ruby Media to develop a new on-line guide containing a lot of useful information on all kinds of endocrine disease, including thyroid and adrenal.

The site provides additional insight into how endocrine conditions are investigated, diagnosed and managed and is designed to help junior doctors to take very full histories, and make very thorough assessments and to unify and clarify patient pathways.

Endobible also includes links to latest guidelines such as NICE. Its free to access site, and should be relevant for consultants, trainees, GPs and specialist nurses and patients who want to be more informed.

I found it a very interesting site and is worth a visit to see the kinds of questions doctors should be asking you.

Thyroid UK's support site at https://thyroiduk.healthunlocked.com has just finished it's first Big Question poll, entitled, "At what age were you diagnosed (on the NHS)."

16% of the respondents say they were diagnosed between the ages of 20-30 and 22% between the ages of 30-40. The highest result (34%) was between the ages of 40-50. Only 25% said they were over 50 at diagnosis.

There is a new Big Question every month and this month's question is, "Which hypothyroid symptom affects/affected your life the most?"

Just click the Purple Big Question tab on the right of this page to take part.

Dr Gordon Skinner is concerned about firstly, patients who are hypothyroid but who are not diagnosed, and secondly, patients who are being managed with an inadequate level of thyroid replacement.

The World Thyroid Register has been launched, to record contact details for anyone who is in support of the cause. People who register may be asked to help raise funds in the future, if action is necessary that requires funding.

The target number of signatures is 50,000. Anyone can sign the register, so please tell your friends, family, colleagues etc.

To read more, and to add your name to the register simply go to
www.worldthyroidregister.com

NHS Confederation Produce a PCT Factsheet

The NHS Confederation has produced a new fact sheet which outlines the role and responsibilities of Primary Care Trusts (PCTs).

The Factsheet describes the system and includes topics such as:

Commissioning for local health services.
PCT funding
PCTs decisions on which services to fund and what changes to make
Region variations on funding
To read the Factsheet click here (PDF format opens in new window)

Save Natural Thyroid Coalition Changes Its Name and Mission

Mary Shomon, Founder of Save Natural Thyroid Coalition, has written to me with some great news. To read her email click here (PDF format opens in new window)

Thyroid UK Responds to Article in Pulse Magazine

Thyroid UK disagrees with parts of the article written by Dr Anthony Toft.

For our response click here (PDF format opens in new window)

The Rt Hon Andrew Lansley spoke to members of patient organisations – National Voices, LINks and the Patient Association about the coalition plans to improve the NHS.

He stated, "First, that patients must be at the heart of everything we do, not just as beneficiaries of care, but as participants, in shared decision-making. As patients, there should be no decision about us, without us. Second, that if we are to seek to achieve continuously improving outcomes, then that is what we must focus on. Not politically-motivated process targets, not simply measuring inputs or constant changes to structures, but a consistent, rigorous focus on outcomes – achieving results for patients."

He made other excellent statements that Thyroid UK hope means that things will change and that patients will, in the future, have a definite say in their treatment plans.

To read his whole speech go to
http://www.dh.gov.uk/en/MediaCentre/Speeches/DH_116643

We were very sorry to hear that Dr Brian McDonogh was struck off at a GMC Fitness to Practise hearing on 19th May 2010.

The charges include the use of a screening tool known as live blood analysis, a test known as electrodermal test; the use of Armour thyroid which was, a) an Unlicensed medication, (b) Not supported by the British Thyroid Association, (c) Not supported by the Society for Endocrinology, and d) not clinically indicated in the patient's care because her measurements were normal and there was no evidence to support a diagnosis of underactive thyroid. There were also charges in respect of medical records.

These charges date back to 2002 and we have been informed that someone at the GMC acted very unethically in respect of this case.

From what Dr McDonogh has told us, we believe that he did not get a fair hearing. When you compare the recent hearing of Dr Sarah Myhill and the recent hearings of doctors who had actually killed patients, Thyroid UK believes that the GMC itself is not fit for practise.

Dr McDonogh is now practising as Nutritionist which means he can still do most things except prescribe pharmaceuticals.

GP incomes 'to be published by government'

GP's incomes may be one of the first to be disclosed in the Government's drive for transparancy. Read more

GP incomes may be published by government

The Government are hoping to win back people's trust and one of the ways they are going to do it is by disclosing the salaries of pertinant professions.

In the Coalition document, The Coaliton: our programme for government, it is stated, "The Government believes that we need to throw open the doors of public bodies, to enable the public to hold politicians and public bodies to account." The document also states, "We will require public bodies to publish online the job titles of every member of staff and the salaries and expenses of senior officials paid more than the lowest salary permissible in Pay Band 1 of the Senior Civil Service pay scale, and organograms that include all positions in those bodies."

Thyroid UK wonders whether Endocrinologists' pay and the salaries of the GMC will be part of this transparancy?

To read more information on this go here:

http://www.healthcarerepublic.com/news/1007027/
GP-incomes-to-published-government/

Summary Care Records – Online vote

You may remember that we have kept you informed of how the Government project, Summary Care Records, has been progressing. You are now able to take part in an on-line vote.

The public is now able to take part in an on-line vote in regard to the Summary Care Records. The vote is being run by Who Sees What?, a collaboration between the New Economics Foundation and the Centre for Science Education at Sheffield Hallam University. It is funded by the Wellcome Trust.

The project is part of the work of the New Economics Foundation's Democracy and Participation Team. The team is committed to developing new and engaging ways for the public to get involved in making and changing government policy.

Who Sees What? produced a Democs conversation game which is designed to help people with no prior knowledge talk about the plans. Thyroid UK board members played the game. The outcome of the game we played showed that patients need to be completely educated about the reasons for Summary Care Records and that complete security was vital.

To find out more about Who Sees What? And to take part in the vote:

1) You can visit their website at http://whoseeswhat.org.uk/2010/06/bigvote/ or

2) You can download a voting form from http://whoseeswhat.org.uk/wp-content/uploads/2010/06/Who-Sees-What-Voting-form.doc and return it to them.

You can also send an email to stephen.whitehead@neweconomics.org

The vote will close at midday on Monday 21 June.

It's really important that you take part: the results of this vote will be a key part of the recommendations to the government about how Electronic Patient Records should be used by the NHS.

Revalidation of doctors was due to be rolled out in 2011, after the pilots had finished but now Health Secretary, Andrew Lansley has announced that more time is needed to "develop a clearer understanding of the costs, benefits and practicalities of implementation".

He wants to make sure that the implementation is "affordable, supports high quality care and makes effective use of doctors' time."

Professor Peter Rubin, GMC Chairman, has stated that, "The decision to extend piloting of revalidation in England will ensure that these systems are sufficiently robust without being burdensome or bureaucratic for doctors and employers."

Let's hope that revalidation does still go ahead and that patients are still allowed to be involved in the annual appraisal.

The report is available here:

http://www.healthcarerepublic.com/news/bulletin/DAILY_NEWS/article/1007038/
?DCMP=EMC-BreakingnewsfromHealthcareRepublic

Prescription Charges Review

In 2008 Professor Ian Gilmore, President of the Royal College of Physicians, was asked to lead an independent review on how a prescription charge exemption for people with long term conditions should be implemented, including how it would be phased in. The Government is now publishing the review, which was submitted to previous ministers in November 2009

These are his recommendations:

• There should be a broad definition of a long term health condition
• Patients' eligibility should be determined, against this definition, by their doctor
• The Government will need to develop detailed plans for implementation, working in particular with primary care and patient group stakeholders
• People who receive incapacity benefit without income support, or contribution based employment and support allowance, or disability living allowance should gain an automatic exemption from prescription charges
• As now, exemption should be for the person rather than restricted to the treatment of the condition for which he/she is exempt
• Disagreement on whether a patient's condition is a long term condition should be resolved using existing processes
• Exemption should last for three years
• Phasing should be achieved by stepwise reductions in the price of the prescription pre"'payment certificate
• Patients who are exempt under the current medical exemption categories should retain their exemption throughout the phasing period.Patients who are newly diagnosed with these conditions during phasing should also continue to be exempted from prescription charges.
• The Government should consider bringing in the changes as soon as possible
  

The whole 40 page report is available here

If you are tweeting about your thyroid health and are interested in letting others know about it, why not consider showing your tweets on the new, soon to be launched, Thyroid UK Support website? The Twitter section of the website changes throughout the day with tweets from various sites and people.

If you are interested in seeing your thyroid tweets on our new site, contact us and put Thyroid Tweeter in the subject heading!

Dr Sarah Myhill on the Theo Chalmers Show

Dr Myhill talked about her approach to medicine, various different reasons why people are ill and her GMC hearing on Theo Chalmer's show "On theEdge". People were also able to text in questions for Sarah to answer.

The interview was excellent - there should be more of them!

The whole show can be watched at:
http://picasaweb.google.com/supportdrmyhill/videos#5473706453049169202

Gaia-health.com discuss Dr Myhill's case and also discuss the cases of doctors who have actually killed patients but who have been allowed to continue practising. It's about time things changed. Many patients now have no faith in the GMC system.

You can read the article at:
http://gaia-health.com/articles201/000243-doc-who-harms-no-one-is-punished-by-gmc-doc-who-killed-can-practice.shtml

Having suspended the roll out of the Summary Care Records stating, "SCRs would not be created in the regions identified for accelerated implementation until appropriate professional and public awareness has been raised.", the Department of Health have changed their minds.

The Department of Health and the British Medical Association (BMA) have now agreed that the Summary Care Records can be created by Primary Care Trusts so long as GP practices agree. PCT's have to have agreement from GPs that patients have been adequately informed about the process and are able to opt out if they wish.

The BMA have not been happy with the roll out up until now but as long as they feel patients understand exactly what their consent means, they are happy to go ahead.

To read more information on this go to http://www.ehiprimarycare.com/news/5883/dh_and_bma_say_as_you_were_on_scr

The ATA held their Spring Meeting in Minnesota on 13th to 16th May. The meeting was entitled, Thyroid Disorders in the Era of Personalized Medicine, and the ATA invited "The community of endocrinologists, surgeons, scientists, other physicians and health care professionals who wish to broaden and update their knowledge of the thyroid gland and its disorders." The meeting included meet-the professor" style workshops, interactive sessions and state of the art information.

The ATA feel that new approaches to thyroid disease are necessary to confront the rise in thyroid diseases. Yaron Tomer, M.D., F.A.C.P., Director of Autoimmune Genetics at Mount Sinai Institute for Personalized Medicine, states in an article on Medical News Today, "Traditionally, medicine has tried to group diseases and their treatments into unified categories. However, the same disease will have different manifestations, complications and response to therapy in different individuals and, therefore, there is a need to individualize therapy for patients."

To read the Medical News Today article and to read more information on this fascinating and hopeful subject go to:

http://www.medicalnewstoday.com/articles/188231.php

http://www.thyroid.org/ann_mtg/2010_spring/index.html

A new website has been set up for supporters of Dr Sarah Myhill. It includes her diary, advice for her patients, information on the GMC IOP, how to help in the campaign and media reports.

To visit the website go to www.supportdrmyhill.co.uk

CODHy: Testosterone Improves Metabolic Syndrome

Farid Saad, PhD, of Bayer Schering in Berlin reported at the World Congress on Controversies to Consensus in Diabetes, Obesity, and Hypertension that that men receiving testosterone injections lost more than 4 kg (9 lb) in the first 30 weeks of a planned three-year study versus almost no change with placebo.

You can read more about this interesting study by clicking here

This Mail Online article is extremely sad and makes me extremely angry.

Sophia Mirza was only 32. She was beautiful. She had ME and no-one listened to her. She was forcibly sectioned against her will. She is the first person to have ME on her death certificate and the coroner has stated "her spinal cord was inflamed, with three quarters of her sensory cells displaying significant abnormalities."

Her mother is now telling the story of her beautiful daughter. Perhaps NOW the medical authorities will listen.

You can read the article by clicking here
http://www.dailymail.co.uk/home/you/article-1277519/Criona-Wilson-recalls-daughters-losing-battle-ME-She-went-hellhole.html

You can now access Information Prescriptions for a number of conditions although Information Prescriptions for thyroid disease are not yet available.

The Information Prescription Service (IPS) allows users, both professional and public, to create information prescriptions(IPs) for long-term health needs.

They are a quick and easy way to provide information about your condition and local services.

You don't need to register but if you register, you can save your information so that you don't have to do it all over again.

Once you type in the condition you are looking for it will take you to a page where you can choose an option – basic information, specialist information, local charity information and local health service and directory information.

Once you click on one of these it will bring up further options such as introduction, symptoms, causes, diagnosis, etc. You can also access personal case studies.

For more information about the Information Prescriptions go to http://www.nhs.uk/ipg/Pages/AboutThisService.aspx

If you would like to design your own Information Prescription go to http://www.nhs.uk/ipg/Pages/HealthAZ.aspx

General Medical Council and Revalidation of Doctors

The GMC has launched a major consultation on proposals for a new process of medical regulation to assure patients, employers and other healthcare practitioners that licensed doctors are up to date and fit to practise. They have called this process revalidation.

You will, no doubt, be shocked to hear (or perhaps not so) that doctors are not always appraised to check that they are up to scratch. Revalidation will mean that they will be appraised annually and only if they are found to be fit to practise will they get their licence. As part of the appraisal the doctor’s colleagues and patients will be completing questionnaires about what they thought of the doctor.

The consultation – “Revalidation: The way ahead” - is open to everyone and this is a good time to make your views known.

For more information on the consultation go to
http://www.gmc-uk.org/doctors/licensing/5786.asp

The consultation document is fairly long document but we believe this is very important and if you can make the time, do read the document and answer the questions.

There is also a podcast that you can either listen to or download the transcript: http://www.gmc-uk.org/doctors/licensing/6750.asp

Dr Myhill attended the IOP Hearing on Thursday 29th April.
To read our report and to see the result click here

Do you Know who is Treating You?

A new guide developed by the Postgraduate Medical Education and Training Board (merged with the General Medical Council in April 2010) and the Academy of Medical Royal Colleges and its Patient Liaison Group is now available to explain doctor’s roles and training. This guide was published because some patients have difficulty understanding the training path for doctors or what doctors' new job titles mean when you have a hospital appointment.

Click here to read the guide (PDF format opens in new window)

New Research Shows It’s Safe to Have Low TSH levels

Researchers have found that it is safe for patients on levothyroxine to have lower levels of TSH than previously thought.
Click here for the full article (PDF format opens in a new window)

Roll Out of Summary Care Records Suspended

The Department of Health have suspended the roll out of the Summary Care Records stating, “SCRs would not be created in the regions identified for accelerated implementation “until appropriate professional and public awareness has been raised."

The British Medical Association have never been very happy about how quickly the SCR’s were being rolled out and had written to the Health Minister, Mike O’Brien calling for a suspension.

For more information go to
http://www.ehiprimarycare.com/news/5833/scr_roll-out_suspended

NICE Guidance for Patients and the Public

The National Institute for Health and Clinical Excellence (NICE) have now produced a new page on their website that allows patients and the public to access plain English versions of guidance in respect of many health conditions.

There is no guidance on thyroid disorders but you or someone you know may be interested in seeing guidance in respect of other health issues.

To go to this section of the NICE website click the link below:

http://www.nice.org.uk/patientsandpublic/

Thyroid UK has been working, along with other patient groups, with the Patients Association on their Joint Manifesto for Trust. A letter was published in The Telegraph on 18th April, “Parties must be more specific about health-care funding”

The manifesto can be found at the links below:

Patients Association Network for Patients Manifesto for Trust
Short Version (PDF opens in new window)

Patients Association Network for Patients Manifesto for Trust
Final Full Version (PDF opens in new window)

Letter in The Telepgraph:
http://www.telegraph.co.uk/comment/letters/7599337/Parties-must-be-more-specific-about-health-care-funding.html

We have been informed by some of you that you are having problems with the credit card facilities of International Pharmacy. Here is a message from Afshin:

I have had complaints from customers that their credit card's fraud department contacted them about an unusual charge from a Jewelry (sic) store in Singapore or a Pet store in Thailand! Since I am using a third party processor at this time, I share the same Merchant ID as many other businesses that are being serviced by this company. I think that is why the merchant ID registers as different businesses with the credit card companies. I bet someone's credit card company is contacting them right now about a strange charge from an on line pharmacy where they had simply bought a piece of jewelry (sic) in Singapore.

I am switching to a new credit card processor soon and the approval will be done on line with my own merchant ID.

Please rest assure that my current processor is a legitimate company in Australia. My site has not been compromised and there has been no report of any fraudulent charges. One person had two charge attempts on their card however both were probably us trying to get approval on separate occasions.

I am really sorry about all of the problems I have had.
afshin

Dr Sarah Myhill Update

Dr Myhill has updated her blog with a section entitled, “The GMC are taking patients' notes without their knowledge or consent”. It’s very interesting and very worrying.

You can read her update here: http://www.drmyhill.co.uk/wiki/Category:My_GMC_Hearing

Dr Wakefield is interviewed by Dr Mercola about exactly what happened in respect of vaccines, autism his paper and his GMC hearing. It’s a long video but extremly interesting!

The video can be found at the link below
http://articles.mercola.com/sites/articles/archive/2010/04/10/wakefield-interview.aspx

The Payments Council Board want to stop the use of cheques in the UK.

The Payments Council Board expect to phase out cheques as legal tender by the end of 2018. This is worrying for charities as most donations and payments come via cheques. Many charities complained. The Board say that they will be very transparent in the “extensive work” that they need to do to ensure that everyone has a viable alternative.

Many elderly, disabled and housebound people, rely on cheque payments and if payments are accepted only by card, they will need to hand their card to a third person, which is open to abuse.

If you disagree with this proposal, please sign the petition and pass on the information to anyone else you think would be interested:

http://petitions.number10.gov.uk/SaveOurCheques/

Some Dosages of Natural Desiccated Thyroid Brands Now Available

Afshin from International Pharmacy has updated us in respect of availability of natural desiccated thyroid.

Nature-Throid is now available in 1/2 grain strength as well as 1 grain.

Westhroid is available in 1 grain strength.

Armour Thyroid is also available in limited quantity in 1/2 grain and 1 grain strength.

RLC Labs give Release Dates for Nature-Throid and Westhroid

Rick L Cox, CEO and President of RLC Labs, Inc. has sent Thyroid UK a list of release dates for the various dosages of Nature-Throid and Westhroid.

To see the details of the release dates click here (PDF format opens in new window)

Your Choice of GP Practice’ GP Practice Boundaries Consultation

The Healthy Secretary, Andy Burnham, has launched a public consultation which will look at how to give patients a greater choice over which GP practice they can register with. The consultation wants your views on the various options for allowing patients to register with a GP that best meets their needs.

If you want to make your views known about this various documents can be downloaded at
http://www.gpchoice.dh.gov.uk

The Consultation will run until the 28th May 2010

Breakthrough Discovery: Need For T3 Could Be Genetic

Gary Pepper MD discusses whether the addition of T3 could be useful in light of the research article by Panicker, V. et al.

To read Dr Pepper’s articles click here (PDF format opens in new window)

High Anti-Thyroid Antibodies and Adverse Pregnancy Outcomes

Dr. John C. Lowe, Editor-in-Chief of the Thyroid Science journal has written an article on adverse pregnancy outcomes among euthyroid women who have high anti-thyroid antibodies. It is a must read, especially if you are planning to have children.

Click here to read the article (PDF format opens in new window)