23/05/2013
Scottish TV interview Scottish Parliament Petitioners
 Two of the Scottish Parliament petitioners, Lorraine Cleaver and Sandra Whyte, were filmed today by Scottish TV about how ill they were before they were put onto the correct thyroid medications.
These lovely ladies explained exactly how ill they were and the reason for this.
Scottish TV also filmed Lyn Mynott at the ITN studios in London today. Among other things, I told them how doctors aren't doing all the tests available to diagnose thyroid disease and that thyroid medications other than levothyroxine are better for some patients.
I also told them that doctors are not testing for vitamin and mineral deficiencies - 77% of respondents to our poll asking whether their doctor has tested them for vitamin and mineral deficiencies said they were never tested - and that this impacts on thyroid health.
Lorraine and Sandra, along with MSP Elaine Smith, will be filmed again after the Scottish Parliament meeting on Tuesday.
We believe that part of the film will be shown on Friday 23rd May or over the weekend and the rest on Tuesday 28th May. As soon as I have the timings confirmed, I'll let everyone know.
Hopefully, this filming will raise awareness in regard to the problems of diagnosis and treatment of thyroid disease. Let's hope they don't edit it too much!
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17/05/2013
Scottish Parliament Receive Response from Scottish Government
The Scottish Parliament have now received a response from the Scottish Government in regard to whether it will establish a short life working group (SLWG) to examine all of the available clinical evidence on the treatment of patients suffering from thyroid and adrenal disorders.
This is an ongoing situation brought about by three women who petitioned the Scottish Parliament on 19th December 2012:
"Calling on the Scottish Parliament to urge the Scottish Government to take action to ensure GPs and endocrinologists are able to accurately diagnose thyroid and adrenal disorders and provide the most appropriate treatment."
The Scottish Parliament Petitions Committee will reconvene on 28th May where their petition will be discussed. As soon as we hear more from the petitioners, we will place the news onto our website.
To read the letter from the Scottish Government go to:
scottish.parliament.uk/S4_PublicPetitionsCommittee/General%20Documents/
PE1463_M_Scottish_Government_15.05.13.pdf
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16/05/2013
AllTrials Needs your Help
 Thyroid UK believes in total transparency from pharmaceutical companies in respect of the clinical trials that they do. Without complete transparency doctors may be prescribing meds that do not suit a particular group of people without realising it.
AllTrials are campaigning about this and asking people to write to their MEP:
Today the new head of pharmaceutical company Lilly UK Jean-Michel Cosséry said that patients don't want companies like his to spend their money sharing "old data." These "old data" are, of course, the results on which all treatments in current use are based! Perhaps he is hoping that AllTrials can be headed off into a siding, like all previous attempts to establish transparency.
A committee of MEPs will soon vote on proposals that would increase transparency of clinical trials. However, there are 350 lobbyists for the pharmaceutical industry at the European Parliament. MEPs are hearing Cosséry's arguments against transparency (and others) every day. We have until 29th May to make sure they hear our arguments.
The trust of patients who have volunteered for clinical trials is betrayed when findings generated by their participation are locked away.
Incomplete information means doctors could make bad treatment decisions and miss opportunities for good medicine.
Researchers don't know what was found in previous trials, or even that some trials happened, so trials are repeated unnecessarily.
If you are in Europe:
The committee looking at the clinical trial regulation has 67 MEPs from 22 different European countries. Their names, the countries they represent and their email addresses can be found:
www.europarl.europa.eu/committees/en/envi/members.html#menuzone
Please write to the MEP(s) from your country telling them why you want increased transparency. Please put your address on the letter so they know where you are from. Let us know if you have written to them and if you get a response.
If you are not in Europe:
We know these kinds of discussions are going on with every regulator around the world. Please talk to us about how AllTrials can take off in every country.
Please do spare a few minutes to write a letter to your MEP. It's outrageous that the pharmaceutical companies don't want transparency and by writing to your MEP you could allow transparency to become the norm.
For more information about AllTrials and their campaigns go to: www.alltrials.net
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8/05/2013
Availability of T3 from Amdipharm-Mercury (formerly MercuryPharma)
There is a shortage of MercuryPharma liothyronine at the moment. Lyn Mynott has been in touch with Amdipharm-Mercury to find out what the problem is.
They told her that there is a shortage of the active pharmaceutical ingredient (API) which is used to make the tablets. This has caused the shortage of the liothyronine tablets. She was told they hope to have stocks by the end of June.
When asked what they could do to help thyroid patients who need this medication right now, they couldn't answer the question other than to say go to their GP.
Lyn Mynott then telephoned the MHRA to see if they were aware of this problem and they asked her to write to them, which she did:
Dear Sirs,
I am writing in respect of the stock problems in relation to the MercuryPharma product, liothyronine.
I have spoken to them today and they inform me that there are problems with the API for this product and that although they don't have a date for stock to be available, they are hoping that it will be available by the end of June.
Patients are starting to be very concerned because MercuryPharma are the only manufacturer in the UK of this product and their prescriptions are due. If patients cannot access their medication they can become very ill very quickly because this hormone has a half life of approx 8 hours.
Generics are available outside of the UK but this would mean that pharmacies would have to possibly find new suppliers and the cost to the NHS may increase.
Kind regards, Lyn Mynott
This was their response:
Dear Ms Mynott,
Thank you for your email and for bringing this to our attention.
We are currently working with colleagues at the Department of Health and with Mercury Pharma regarding this matter. Our intention is to come back to you shortly once we have an update on the position moving forward with regards to Liothyronine supplies.
If you have any further questions in the interim please do come back to us.
Kind Regards,
Customer Services
External Relations
MHRA
A member of our HealthUnlocked forum has now heard from Amdipharm-Mercury and they have stated,
"....the product is available in other European countries and we are trying to source some unlicensed supply which can be sold in UK in the interim.
The process to source this unlicensed supply is on-going and it will take us at least a week or two to complete it."
Lyn Mynott states, "Let's hope that T3 becomes available for everyone soon. I was surprised to receive my prescription of T3 this week without any problem at all so perhaps the problem is already being solved."
We will keep you updated.
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7/05/2013
Pulse Magazine Article on Vitamin B12 Deficiency
 Thyroid UK always suggests getting your B12 tested because the symptoms of B12 deficiency are very similar to those of hypothyroidism.
Now Dr Andrew McCaddon, a principal GP in Wrexham and honorary senior research fellow in the School of Medicine, Cardiff University, who has a research interest in vitamin B12 deficiency and dementia has written an article for Pulse Magazine, a magazine aimed at health professionals.
The article explains about the fact that the blood tests done on the NHS only capture total B12 rather than just active B12 and also that current assays can often give false normal results.
If you think you may have vitamin B12 deficiency or have already been diagnosed, this article may well help encourage a discussion with your doctor on how he can help you.
To read the Pulse article, you will need to be registered on their site but it's free, doesn't take long and this online magazine often has some excellent articles.
Here's the link for the article:
http://www.pulsetoday.co.uk/clinical/ten-top-tips-vitamin-b12-deficiency/20002753.article
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7/05/2013
Update on Dr Skinner's IOP on 26th April 2013
Dr Skinner's IOP took place on 26th April 2013. Julie Cameron has written the following brief report.
Hi Everyone
Just to let you know that the IOP determined that conditions and supervision should remain, so in due course [about 6 months from now] there is likely to be a Fitness to Practise hearing.
The GMC again received a large number of testimonials in support of Dr Skinner and 25 patients and supporters also attended Manchester for the hearing.
Dr Skinner was unable to attend this hearing as he was seeing a patient who had flown in from abroad on that day [ticket non-refundable], however, the number of people who had turned up to support him, together with so many testimonials received was acknowledged by Dr Skinner's defence Barrister and the Chairman of the panel, so it was good to know that this was given recognition for once.
So thanks and thanks again for your continued support which is vital and which will be very much needed again, probably before the end of the year!
In the meantime, it is worth keeping tabs on the Fitness to Practise page of the WTR website[scroll to the bottom for most recent info]. www.worldthyroidregister.com
Warm wishes to you all
Julie
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2/05/2013
GMC Guide for Patients on what to Expect from their Doctor
 The GMC have now published their first guide for patients on what to expect from their doctor.
The new guide is based on the GMC's core guidance for doctors – Good medical practice. It explains the key duties of a doctor and how patients can help to create a good create a good relationship with their doctor and get the most out of their consultations and treatments.
One of the suggestions the guide suggests is, "It is important to be as frank and open as you can. You may find it helpful to make some notes beforehand to take with you, so you do not leave out some information that will help the doctor understand your situation."
It also explains, "If you feel your doctor has not made the right diagnosis or is not offering the right treatment, you can ask for a second opinion from another doctor."
Thyroid UK suggests that you read this guide as it may well be very helpful to remember when you next have an appointment with your doctor or endocrinologist.
To read the guide go here:
http://www.gmc-uk.org/guidance/patients.asp
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25/04/2013
Thyroid UK Supports the Alltrials Campaign
Thyroid UK has now been added to the over 250 organisations supporting the Alltrials campaign. This campaign is a petition calling on governments, regulators and research bodies to implement measures to make it obligatory to report all clinical trial results. At present, many trials are not published. One of the reasons for this is because the outcome of the trial is not the outcome that was hoped for. Negative outcomes for some medications are not reported and therefore doctors are not aware of any possible harms that may be caused to patients.
The Alltrials campaign calls for all trials past and present to be registered and the full methods and results reported.
Thyroid UK strongly agrees with this and is therefore asking people to sign this petition. Alltrials have a target of 1 million signatures and they have a long way to go. Unreported trials may mean that a friend or family member may be taking a medication that will harm them rather than benefit them so please sign up and spread the word!
To sign the petition please click here.
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23/04/2013
Report on the Suspension of the Teva Marketing Authorisation
for Levothyroxine 100 mcg Tablets
 You may be aware that the marketing authorisation for the 100mcg tablet manufactured by Teva was suspended on 16th February 2012.
A recall of the remaining Teva levothyroxine tablets was performed on 09 May 2012 as soon as the MHRA were confident that there was a sufficient supply of alternative products available to patients.
The MHRA have now published a report on the suspension of this product. The report gives a chronological list of events leading up to the suspension along with detailed information on the reasons for the suspension.
Very interesting report which also shows why patients should be using the Yellow Card Scheme more often.
For more information on the Yellow Card Scheme go to: yellowcard.mhra.gov.uk/
To read the MHRA report on Teva go to: www.mhra.gov.uk/NewsCentre/CON263957
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16/04/2013
Twins Publish Powerpoint Presentations about their Thyroid History
 Twins Coralie Phillips and Donna Roach have prepared two brief PowerPoint presentations about their thyroid life which can be viewed via their website.
The first is entitled Thyroid Threats Part 1 and the second is entitled Thyroid Threats Part 2.
They both take no more than a couple of minutes to watch. Anyone with thyroid problems will find these of great interest. The first presentation is illustrated with photographs which clearly demonstrate the effect that hypothyroidism can have on childhood development, plus it outlines the effects if adults are undertreated for hypothyroidism.
The second presentation provides an overview of both Donna and Coralie's recent Master of Science projects.
Well worth taking a look!
For more information go to: www.thyroidbooks.co.uk/
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16/04/2013
Doctors and Patients want Different Language in Health Records
 A survey by the Medical Protection Society (MPS) reveals that 84% of doctors think that online records will mean spending more time explaining the contents of records to patients. Although doctors and the public agree the most important use of medical records is to give the doctor an overview of all the medical treatments a patient has received, there is a mismatch in expectations about how records should be written.
Dr Nick Clements, Head of Medical Services at MPS says:
"Online medical records have the potential to transform patient care and making these available electronically will undoubtedly increase patient access. It‟s good to see that 68% of doctors and 63% of the public agree that the most important purpose of medical records is to give the doctor an overview of all medical treatments a patient has received and to help the doctor manage their healthcare.
"However our survey also showed differing expectations on how records should be written. If this issue isn‟t reconciled before online records are introduced, this could lead to tension and confusion between doctors and patients."
For example, the findings from a survey of the public showed that three in four (75%) agree that medical records should be written in simple language so that patients can understand them without assistance or explanation, but only one in five doctors (21%) think that medical records should be written this way.
In response to this finding Dr Clements notes:
"This suggests that doctors strongly believe medical records are principally for health professionals and should be administered by themselves. This could be problematic as it is at odds with what it appears patients expect – that medical records are about them and should be written with them in mind. Doctors may have to be prepared to simplify and adjust how they write their notes, or spend more time explaining the record to the patient, which was a major concern for 84% of doctors surveyed."
Dr Clements also said:
"It's important that the patient understands their records so that they can share in the decision-making process, but there are risks in asking doctors to write medical records using plain language. A GP will need to consider whether a clinical term will be understood or whether an entry could cause distress or anxiety for the patient. If doctors avoid using clinical terms, medical jargon, acronyms, and even shorthand, to make it more 'readable' for the patient, this could compromise the usefulness of the record for other healthcare professionals and add considerably to their length without increasing their contribution to patient care. Doctors adopting such an approach will also have to be mindful of their professional and contractual obligations, including the GMC's Good Medical Practice guidelines to keep clear, accurate and legible records, reporting the relevant clinical findings, the decisions made, the information given to patients, and any drugs prescribed or other investigation or treatment‟.
"The introduction of online medical records may represent a significant shift in how patients engage in their healthcare, but without comprehensive educational support for both doctors and patients, frustration, confusion and complaints will arise from what should be a positive step forward in healthcare."
A research report by MPS on 'Online medical records and the doctor-patient partnership' will be launched in Parliament on 30 April 2013.
Press Release – Medical Protection Society – 8th April 2014
http://www.medicalprotection.org/uk/press-releases/
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12/04/2013
Update on Dr Skinner's IOP
As of Wednesday 10th April, Lucy Galbraith has taken over from Elisa Summerfield as Investigation Officer. Any e-mails sent to Elisa Summerfield before 10th April will have been dealt with.
The contact for Dr Skinner's case is now:-
Lucy Galbraith,
General Medical Council,
3 Hardman Street,
Manchester M3 3AW.
0161 923 6592
Email lgalbraith@gmc-uk.org
Please quote: Case number ES/C1-462487326.
Please also send a copy to Dr Skinner at 22 Alcester Road, Moseley, Birmingham, B13 8BE or to afshan@vri.org.uk
If you sent an e-mail to Elisa Summerfield after Tuesday 9th April please copy it to Lucy Galbraith.
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10/04/2013
Date changed for Dr Skinner's next IOP
Dr Skinner's IOP that was to have taken place on 18th April has now be rescheduled for Friday 26th April at 9.30a.m. due to Dr Skinner's request for a postponement.
The address for the hearing is:
Medical Practitioners Tribunal Service, 7th Floor,St James's Buildings, 79 Oxford Street, in Manchester M1 6FQ
As before, your previous testimonials for Dr. Skinner can't be used for this hearing, so it would be really helpful if everyone could write letters of support for Dr Skinner to:
IOP Panel,
c/o Mrs Elisa Summerfield,
General Medical Council,
3 Hardman Street,
Manchester M3 3AW.
Email esummerfield@gmc-uk.org
Please quote: Case number ES/C1-462487326.
Please also send a copy to Dr Skinner at 22 Alcester Road, Moseley, Birmingham, B13 8BE or to afshan@vri.org.uk
The hearing is public so anyone can attend. If you can attend, it will be helpful to Dr Skinner.
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5/04/2013
Strengthened NHS Constitution Published
 An updated version of the NHS Constitution has now been published after a consultation on strengthening it. The NHS now has strengthened wording on patient involvement, self management, health literacy, coordinated care, duty of candour and complaints among others.
It also clarifies that local authorities are required by law to take account of the Constitution.
For a copy of the Government Response to the Consultation click here
For a copy of the revised NHS Constitution click here
For a copy of the updated NHS Constitution Handbook click here
For a copy of the Public Health Supplement click here
For more information go to:
www.gov.uk/government/news/updated-nhs-constitution-published
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5/04/2013
Launch of Whistleblowing Commission consultation
 Public Concern at Work, a charity that advises individuals and organisations about whistleblowing, has launched a consultation.
Public Concern at Work set up the Whistleblowing Commission to examine the existing arrangements for workplace whistleblowing and make recommendations for change.
They are seeking evidence through a public consultation process which will gather evidence on various areas such as attitudes to whistleblowing.
To find more information about Public Concern at Work and to contribute to the consultation go to: pcaw.org.uk/whistleblowing-commission-public-consultation
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4/04/2013
Draft Report on Screening for Thyroid Disease Published
 A draft report on Screening for Thyroid Disease has now been published for the UK National Screening Committee.
The report has been compiled by Dr Gail Pittam, Snr Researcher; Dr Martin Allaby, Consultant in Public Health Medicine and Dr Suzi Coles, Specialty Registrar in Public Health.
This draft report discusses the conditions of overt hypothyroidism and overt hyperthyroidism as well as subclinical hypothyroidism and subclinical hyperthyroidism. It looks at many different research studies done on these conditions and on different age groups and looks at the various thyroid tests and their ranges.
The authors conclude that:
It is not appropriate to start a screening programme for thyroid disease because:
- There is a lack of consensus about the TSH cut-off value or values for defining which patients should receive treatment, and what constitutes a normal TSH level is still a matter of debate (British Thyroid Association and the British Thyroid Foundation 2011).
- Two systematic reviews on RCTs on treatment of subclinical thyroid disease have concluded that there is insufficient evidence of benefit and that the potential adverse effects from treatment have not been adequately studied.
- It is unclear what proportion of people with screen-detected subclinical hypothyroidism would revert to normal without treatment, but it could be a substantial minority.
- The apparent short-term (four month) benefits of treating screen-detected subclinical hypothyroidism that were demonstrated in 15 subjects by Abu-Helalah et al (2010) need to be confirmed in a larger study with longer follow-up.
- There have been no RCTs of screening for thyroid disease.
They write under "Implications for research":
An investigation of UK iodine status may be needed to help determine whether a policy of iodine prophylaxis should be implemented (Vanderpump et al 2011).
A population-based study of screening for thyroid disease could generate patient populations for an RCT that should provide better answers to the following questions:
- What is the natural history of screen-detected subclinical hypothyroidism? In particular, what proportion of people with screen-detected subclinical hypothyroidism will revert to normal if observed over a period of years?
- Do the apparent short-term (4 month) benefits of treating subclinical hypothyroidism with thyroxine persist when treatment is continued for years?
To download the full Draft Report on Screening for Thyroid Disease, click here
Thyroid UK's new medical advisers Rudolf Hoërmann & John Midgley submitted a comment in response to this draft report. Click here to read their comment
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3/04/2013
ATA Spring 2013 Symposium
 The American Thyroid Association are holding a Spring Symposium in Washington DC entitled, "Treatment of Hypothyroidism: Possibilities on the Horizon".
The invitation to this symposium explains that thyroid hormone therapy is still subject to debate amongst doctors and that synthetic levothyroxine providing a complete resolution of symptoms was perhaps an overly optimistic hope.
It also discusses other reasons why patients are not getting completely well on levothyroxine and that more research needs to be done in various areas of thyroid disease.
One thing that really excites me is the fact that it mentions that there is a preparation of T3 with a physiologic extended-release profile under development i.e. a slow release option.
There will be a half day of basic science at the beginning of this symposium, to review key aspects of thyroid homeostasis and action i.e. self regulation.
Let's hope that the doctors/endocrinologists that attend this meeting will be as open-minded as the authors of this invite.
To see the invitation go to this shortened link: http://goo.gl/q12X4
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2/04/2013
Paris Marathon - 2013
Lindsay and Giles are
running 26.2 miles through Paris
on 7th April 2013!
YOU can Sponsor them Now through their MyDonate Page
mydonate.bt.com/fundraisers/lindsayandgiles
 This is the first marathon either of us has taken part in and we decided we would like to raise money for Thyroid UK to keep us going round those 26.2 miles.
Thyroid UK does vital work by raising awareness of thyroid disease, by helping people to work through the steps needed to find out if they have thyroid disease, and helping them in their quest to improve their thyroid related health.
I was diagnosed with Hypothyroidism a couple of years ago and at that point I felt so unwell I could barely get out of bed and through a normal day, let alone train for a marathon.
Treatment for Hypothyroidism is a long process of trial and error to get your medication right. There seems to be limited support and understanding from the GP's so this is where the great work of Thyroid UK comes in.
I was lucky enough to have the support from my family and friends but there are many that don't. So we want to raise money to help others who are still struggling through everyday life.
Please Sponsor Lindsay and Giles Now to keep them running the 26.2 miles through Paris!
mydonate.bt.com/fundraisers/lindsayandgiles
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28/03/2013
New Medical Advisers for Thyroid UK
 We are so pleased to let you know that Professor Dr Rudolf Hoërmann, MD PhD and Dr John Midgley B.Sc (Leeds) D Phil (Oxford), have consented to become Medical Advisers for Thyroid UK.
Dr Midgley is also going to be one of the speakers at our next conference in October 2014.
You may be aware that Prof D Hoërmann and Dr Midgley have co-written some very important research very recently which may change the way that thyroid disease is diagnosed and treated:
TSH Measurement and Its Implications for Personalised Clinical Decision-Making
December 2012. Full article available here:
www.ncbi.nlm.nih.gov/pmc/articles/PMC3529417
Physiological states and functional relation between thyrotropin and free thyroxine in thyroid health and disease: in vivo and in silico data suggest a hierarchical model.
February 2013 Abstract available here:
www.ncbi.nlm.nih.gov/pubmed/23423518
Is pituitary TSH an adequate measure of thyroid hormone-controlled homoeostasis during thyroxine treatment?
January 2013 Abstract available here:
www.ncbi.nlm.nih.gov/pubmed/23184912
Prof Dr Hoërmann and Dr Midgley have also supported the Scottish Parliament Petition lodged by Sandra Whyte, Marian Dyer and Lorraine Cleaver - www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463
We are very grateful to Prof D Hoërmann and Dr Midgley for supporting Thyroid UK and look forward to working with them in the future.
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25/03/2013
New Edition of Good Medical Practice Published
The GMC have just published the new edition of their core guidance for doctors, Good Medical Practice which sets out the standards expected of every doctor on their register.
Under the new revalidation rules, every licensed doctor must have an annual appraisal based on Good medical practice. This new guidance has been tailored to reflect this.
There are new duties including the need to ensure continuity of care and making it explicit that doctors must take prompt action if a patient is not receiving basic care to meet their needs.
Under the new guidance doctors new to practice or in new roles should be willing to find and take part in structured support, such as mentoring. More experienced doctors should be willing to mentor others. There is also new guidance on the use of social media.
This updated edition is shorter than the last edition with more detailed advice on specific issues being moved to separate explanatory guidance.
This new guidance will come into force from 22 April which should give doctors time to read the document and apply the new principles in their practice.
To read the new Good Medical Practice, and the separate explanatory guidance go to:
www.gmc-uk.org/guidance/news_consultation/20477.asp
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25/03/2013
Scottish Patients Can Be Part of Patient Opinion
 Patients are now able to share their experience of using Scotland's health services online. They can be part of Patient Opinion following a £160,000 roll out across health boards including the Scottish Ambulance Service (SAS).
Patient Opinion provides a confidential way for patients to share their healthcare experiences, good or bad, online. Comments are then passed to relevant staff who can respond or use the feedback to help change services.
The Scottish Ambulance Service participated in an initial pilot of Patient Opinion and have already used patient feedback to help shape improvements to the Patient Transport Service. This involved enhancing the response to patients with mental health care needs and highlighting positive feedback with staff across the service to share and learn from best practice examples.
Health Secretary Alex Neil said:
"We want to hear patient's stories first hand in their own words, whether it's good or bad, because it helps us to make our health services better.
"Now patients, carers and their families will be able to let health boards know, openly and publicly, how a service was for them and where it can improve. And if our health professionals are doing a great job we want them to know about it.
"The best thing is, staff will receive this feedback in real-time rather than having to wait months for the results of our traditional paper surveys.
"Many of these stories can be inspirational and where our health professionals are doing a great job we want them to know about it.
"I hope it will be a more accessible way for patients and families to give their views, and will add to the tools that NHS boards already have in place to get feedback from patients.
"Every organisation takes feedback from customers very seriously and the NHS should be no different. The NHS belongs to everyone and they should have a say in how its run and what they want."
For more information go to:
www.scotland.gov.uk/News/Releases/2013/03/patient-stories19032013
To tell your story if you live in the UK go to: www.patientopinion.org.uk/
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20/03/2013
Thyroid UK Submits Response to the Scottish Parliament
Lyn Mynott, Chair/Chief Executive has now submitted Thyroid UK's response to the Scottish Parliaments questions. Lyn also sent the comments she received from people to the Scottish Parliament.
Thyroid UK sincerely hopes that the Scottish Parliament looks closely at the research that we have sent and sees that things need to change in respect of thyroid disease diagnosis and treatment.
All the submissions will be sent to the petitioners for their comments and then the Scottish Parliament will make a decision on the way forward.
We'll keep you informed of progress.
To see Thyroid UK's response click here
For more information about the Petition and to see all the responses go to:
www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463
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20/03/2013
Review of NHS complaints system
 A review aimed at ensuring that all hospitals listen to and act upon the concerns of patients has been launched.
It will be led by Ann Clwyd, MP for Cynon Valley, and Professor Tricia Hart, Chief Executive of South Tees Hospitals NHS Foundation Trust and advisor to Robert Francis during his two inquiries into the Mid Staffordshire NHS Trust.
The review of NHS complaints handling was first announced by the Prime Minister in his response to Robert Francis's report into failings at Mid Staffordshire NHS Foundation Trust.
Proposed terms of reference
The review will engage with patients and their carers and representatives, staff and managers to hear and understand their experience of the way trusts manage and act on concerns and complaints.
The review will consider the handling of concerns and complaints in NHS hospital care in England and, in doing so, will:
- consider how to align more closely the handling of concerns and complaints about patient care
- identify where good practice exists, and how good practice for delivering to those standards is shared and what helps or hinders its adoption
- consider what standards might best be applied to the handling of complaints
- consider how intelligence from concerns and complaints can be used to improve service delivery, and how this information might best be made more widely available to service users and commissioners
- consider the role of the Trust Board and senior managers in developing a culture that takes the concerns of individuals seriously and acts on them
- identify the skills and behaviours that staff, including clinical staff, need to ensure that the concerns of individuals are at the heart of their work
- consider how complainants might more appropriately be supported during the complaints process through, for example, advice, mediation and advocacy
- include the handling of concerns raised by staff, including the support of whistleblowers
It will be encouraged to make recommendations about:
- any aspect of the NHS complaints arrangements and other means by which patients make concerns known
- the way that organisations receive and act on concerns and complaints
- how Boards and managers carry out their functions
- the process by which individual organisations are held to account for the way that they handle concerns and complaints
The review team will report to the Secretary of State for Health by the Parliamentary summer recess.
Contacting the review team
Anyone wishing to submit evidence to the review is welcome to do so.
email: ComplaintsReview@dh.gsi.gov.uk
Write to:
Review of NHS Complaints Handling
Department of Health
Room 5E43, Quarry House
Quarry Hill
Leeds
LS2 7UE
Taken from the Department of Health website: www.dh.gov.uk/health/2013/03/nhs-complaints
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11/03/2013
Eltroxin Tablet Shortage
 A few patients have told us that they have received a letter from their GP to say that Eltroxin is being discontinued.
We contacted MercuryPharma about this today, and they confirmed that the Eltroxin brand of levothyroxine tablets are NOT being discontinued.
However, there is currently a supply issue with the Eltroxin branded tablets, and MercuryPharma could give no estimation of how long it will be before this is resolved.
MercuryPharma also again confirmed that the Eltroxin levothyroxine tablets are the same as those available under the generic MercuryPharma label, which are still obtainable.
So if your pharmacy are unable to obtain your usual supply of Eltroxin branded tablets, you can ask them to substitute with the MercuryPharma generic tablets instead.
More information about various thyroid hormone medications (including lists of ingredients) can be found on the Thyroid Hormone Replacements page
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28/02/2013
Teva Levothyroxine Oral Solution Launched
 Teva have now launched an oral solution levothyhroxine. This solution is free from many items such as wheat, oats, rye, barley, spelt, casein and aspartame as well as many other ingredients.
If you feel that you cannot tolerate some of the fillers and binders that is usually in the levothyroxine tablets, then this solution may suit you.
However, this product seems to be the same product produced by Eltroxin and is manufactured by the same company so if you don't get on well with the Eltroxin brand of solution, then this may not be for you.
For more information you can see the Summary of Product Characteristics here and the Patient Information leaflet here.
Lyn Mynott, Chair/Chief Executive
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14/02/2013
Scottish Parliament - Questions/Issues
Lyn Mynott, Chair/Chief Executive of Thyroid UK, has now received a letter from the Scottish Parliament asking relevant questions about the problem of thyroid diagnosis and treatment.
Scottish Parliament has also written to various organisations asking specific questions.
Lyn Mynott will be responding to this letter stating the views of Thyroid UK on the problems of diagnosis and treatment and on the discussions that took place at the Committee meeting on 5th February. She will also be sending evidence to ensure that Parliament is up to date on all recent research as well as other relevant information.
Click the link below to download a PDF of the questions/issues that the Scottish Parliament is asking the different organisations.
scottish.parliament.uk/
S4_PublicPetitionsCommittee/General%20Documents/PE1463_Written_Questions.pdf
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13/02/2013
AllTrials Campaign
Thyroid UK is always interested in research and especially about patient and public involvement in research. However, we know that not all research is open and transparent. Many trials are never registered or published, especially if the outcome shows that the drug causes problems for patients.
AllTrials Campaign is an is an initiative of Bad Science, Sense About Science, BMJ, James Lind Initiative and the Centre for Evidence -based Medicine. It is an excellent campaign calling for all clinical trial results to be reported.
The AllTrials Campaign are running a petition:
"It's time all clinical trial results are reported. Patients, researchers, doctors and regulators everywhere in the world will benefit from publication of clinical trial results. Thousands of clinical trials have not reported their results; some have not even been registered. Information on what was done and what was found in these trials could be lost forever to doctors and researchers, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated unnecessarily on people and animals. All trials past and present should be registered, and the full methods and the results reported. We call on governments, regulators and research bodies to implement measures to achieve this."
Thyroid UK strongly suggests that you sign this petition. Changing the law on this topic may very well help your family should they need to take a drug in the future.
To sign the petition go to: www.alltrials.net
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7/02/2013
My Health – Our new section on Thyroid UK's Online Community
 We are very pleased to inform you that with sponsorship from Erfa and Actavis, we now have an exciting addition to the Thyroid UK HealthUnlocked community. It’s called My Health and it is a tool that lets you build and track your health profile over time and see how it compares with everyone else (anonymously of course!)
You can enter your symptoms and medications and day by day and week by week you can track the intensity of these symptoms and over time build a comprehensive graph of your condition.
You can enter your data from any date you wish so that you can get an overall picture of your health from when your symptoms started.
Tracking your symptoms not only helps you understand the impact your condition has on your life but also gives you the data you need to have a “shared decision-making” conversation your clinician. In addition to these personal benefits, you can anonymously share your data which can help transform the lives of others.
Relevant questions and blogs from other people based on your own condition(s), symptoms and/or treatments will also be put onto your page.
To start using My Health you need to go to http://thyroiduk.healthunlocked.com/ and join the community, if you are not already a member. You will then be able to access My Health from the green bar along the top of the screen.
Once you enter My Health, you will need to complete a short survey of your conditions, symptoms and treatments. Once this is completed, you will be able to add more information such as intensity of symptoms, the addition of more conditions, symptoms and treatments and how these change over time.
To guide you through the process, there is a yellow "Explain this page" button on every page. Alternatively, you can click the green feedback tab to send HealthUnlocked any questions you may have.
We hope that you find My Health a useful addition to your community and we look forward to receiving your feedback.
We would like to thank Erfa and Actavis very much for their sponsorship of this new innovative piece of software which, we are sure, will help thyroid patients enormously.
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6/02/2013
Scottish Parliament Petition - Tuesday 5th February 2013
We are delighted to be bringing you the news that a petition entitled "Effective Thyroid and Adrenal Testing, Diagnosis and Treatment", was discussed in the Scottish Parliament yesterday.
The petition was submitted by Sandra Whyte, Marian Dyer and Lorraine Cleaver, who are resident in Scotland. These ladies all have a heart-rending story to tell which led them to filing the petition on behalf of all thyroid patients.
Unfortunately, Marian was not too well on the day of the meeting but Sandra and Lorraine attended and gave a very real picture of what is happening in a clear and concise way, showing no signs of how nervous they were feeling.
The MSP's were very interested in what they had to say and agreed to write to various people about the problem, including Thyroid UK. We will, of course, give them all relevant information to aid them in this matter.
On behalf of all thyroid patients who are not doing well on levothyroxine only therapy, we would like to thank Sandra, Lorraine and Marian for submitting this petition and for all the work they have done on this for thyroid patients.
Thyroid UK will help them in any way they think is necessary to move this forward.
To see the paperwork regarding this petition go to:
www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463
The meeting was filmed and will be available for one month only by going here:
www.scottish.parliament.uk/newsandmediacentre/41424.aspx
The petition is not open for comments, but interested people can write to Thyroid UK with their comments/evidence. See update below for details.
Important Update 22/02/2013
Parliament have now informed us that the most effective and helpful way for a lot of individual members to input into the process is for you to write to Thyroid UK. We will summarise the comments and include the information with our evidence submission.
If anyone would like to submit something, please send us an email to enquiries@thyroiduk.org by Sunday 3rd March 2013.
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17/01/2013
MHRA Report on Levothyroxine Tablet Products
 The MHRA has published a report on levothyroxine tablet products: A review of the clinical and quality considerations. This was brought about because of concerns of patients and doctors about suspected quality and effectiveness issues of levothyroxine.
The MHRA have published the review alongside some FAQ's which explain the reasons behind the review and the organisations involved in it.
The FAQ's have been reproduced below.
You can download the full review here:
http://www.mhra.gov.uk/home/groups/pl-p/documents/drugsafetymessage/con222566.pdf
Questions and answers
General
1. Why is the MHRA publishing this report?
Over recent years, the MHRA has received reports from prescribers and patients of problems with levothyroxine tablets, mostly concerning the quality or effectiveness of the product. The numbers of reports were very small in relation to the number of patients taking this medicine, nevertheless they were persistently received. In January 2011 the MHRA decided to undertake a detailed investigation into possible underlying reasons for these reports that might be connected to the known sensitivity of the drug substance, levothyroxine. The findings were presented to the Commission of Human Medicines for their consideration.
2. Who are the Commission on Human Medicines (CHM) and in what situations does it make recommendations to the MHRA?
The Commission on Human Medicines is an independent panel of experts with whom the licensing authority (MHRA) consults to obtain advice on the safety, quality and efficacy of medicines. The CHM may make recommendations to the licensing authority on particular medicines under consideration. Further information about the CHM is published on the MHRA's website:
Commission on Human Medicines
3. What recommendations did the CHM make for levothyroxine products?
The CHM made several recommendations aimed at improving the quality and consistency of levothyroxine products. A key recommendation was the introduction of a new discriminatory dissolution test that all products will have to meet when tested.
4. Why is the levothyroxine dissolution test important?
Dissolution is a way of testing that the levothyroxine drug is able to adequately dissolve out of the tablet and be available in solution for absorption from the gut. If the drug doesn't completely dissolve, then it may not be fully absorbed by the body to give an optimal clinical effect. A dissolution test was developed by the MHRA. Although we cannot be certain that this test is predictive of what will happen in the body, all levothyroxine tablets on the UK market were shown by this test to have satisfactory dissolution apart from one make (Teva levothyroxine 100 microgram tablets). Teva levothyroxine 100 microgram tablets have since been withdrawn from the UK market.
5. Where can I get more information about the Teva levothyroxine 100 microgram tablet?
The MHRA consulted with the CHM over the Teva levothyroxine 100 microgram tablet on 9 February 2012 and this led to the suspension of the marketing authorisation of this product on 19 February 2012. The MHRA expects to publish a report on this CHM review by end February 2012.
6. When will the new dissolution test be applied to levothyroxine products?
The dissolution test will shortly be included in the BP monograph for Levothyroxine Tablets. This will become a legal requirement once published by the BP. The timescale for this is expected to be about January 2014. More information about the revised monograph for levothyroxine tablets is available on the BP website:
Revised Monographs (external link)
Prescribers
7. In the recommendations it states: '…brand or named supplier prescribing is not considered necessary at this stage, but should be kept under review.' Will the CHM be keeping this under review and issuing further guidance? And if so when is this likely to be?
All the recommendations made by the CHM to improve the quality of levothyroxine tablets have been taken forward by the MHRA and the BP Commission. Earlier this year, the MHRA met with each manufacturer of levothyroxine tablets to give them notice of these recommendations to ensure they are implemented. CHM did not recommend named or brand prescribing because the recommendations were considered to be adequate measures to ensure the quality and consistency of levothyroxine tablets that remain on the UK market. The MHRA are closely monitoring all reports of adverse events following suspension of the Teva Levothyroxine 100 microgram Tablet. Since removal of this product from the market, there are no clear signals suggesting that the levothyroxine products that remain on the UK market are inequivalent.
The MHRA will continue to review reports and consult with the CHM when necessary.
Patients
8. What should patients on levothyroxine do now?
If you are taking levothyroxine you do not need to take any action. Most patients on levothyroxine will have regular blood test to inform their GP that their hypothyroidism is controlled and whether any adjustment is needed to their treatment.
However, if you have any concerns over your treatment you should discuss these with your GP, practice nurse or pharmacist.
9. Where can I get more advice on this subject?
If you have any other questions regarding this review you should discuss them with your GP, practice nurse or pharmacist.
Please also continue to visit the MHRA website.
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