"let's take some action": follow up - letter to MP for onward transmission to Jane Ellison

This is what I have now sent to my MP for onward transmission to the Minister, Jane Ellison. The formatting has gone to hell when I copy/pasted. If you'd like to send a similar letter to your MP and would like this as a template, message me and I'll send you a version that doesn't look so naff. :0)

Do, please, consider writing to your MP. If you've had particular problems, do include them. I don't know about you, but I don't often find a use for a politician. Here is one! They are supposed to be our representatives. If we don't ask we are unlikely to get ...

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In December 2013 Mrs Caroline Spelman, Conservative MP for Meriden, raised the subject of hypothyroidism in Parliament. Here is a link to the Hansard debate, for your convenience: publications.parliament.uk/...

There is a large number of people in this country with thyroidism (not just hypothyroid) who find that the limited treatment options available to them do not help them. Many have difficulty getting diagnosed at all. I belong to an online community where such people congregate to share their woes and successes: Health Unlocked - Thyroid.

Mrs Spelman raised the subject as a result of one of HU-Thyroid's Trustees contacting her. The Parliamentary Under-Secretary of State for Health (Jane Ellison) was present. Her response to Mrs Spelman is at 11.13 on the Hansard report linked above. This was knowledgeable, as far as it went. However, that there are so many people still so unwell with thyroid problems points to some kind of failure in the current diagnosing and treatment of thyroid malfunctions (there are a number of different - sometimes very subtle - ways in which thyroids can malfunction).

I wrote to Mrs Spelman, setting out some of the more important changes the HU-Thyroid website members would like to see to the way the NHS treats thyroid patients. She advised that I write to Jane Ellison, via your goodself, with our concerns. This is that letter. Below is the list of things we would very much like to see improved.

More research into what is causing the epidemic of thyroid disease across the world.

Better training for Endocrinologists and GPs.

investigation into a broader panel of treatments for thyroid malfunction. Most hypothyroid patients do well on Levothyroxine, the only drug offered by the NHS. However, a significant minority do not (I am one such).

a regular, broad, panel of blood tests being done for thyroid patients who still exhibit symptoms, to assist in diagnosis and treatment

Investigation into why the NHS is paying higher prices for T3 the rest of Europe.

A ban on the practice of drug companies paying commission etc to surgeries and GPs to use their drugs.

putting Thyroid issues on the occupational health agenda so as to help safeguard individual employees, and potential employees, ensuring that the symptoms and impairments experienced are acknowledged by NHS and employers; the current failure to do this is ethically wrong and discriminatory .

And, perhaps most importantly, we need an acknowledgement that current diagnosis and care is inadequate for a significant minority of sufferers from thyroid disease. The thyroid affects the body in many subtle ways (too many to go into here). The experience of unwellness expresses itself differently in almost every sufferer. There are commonalities, of course. But the differences are legion. Currently only a few symptoms are acknowledged as being a legitimate part of a diagnosis.

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  • A great letter Humphrey. Thank you for starting the ball rolling and outlining a framework for expressing our views. I will definitely be e-mailing my MP now and, it would be so good if we all made a concerted effort in the next week or so.

    Just wondering if it is worth adding that one of the difficulties is often sole reliance on the flawed TSH test and its variation throughout the world.

  • Absolutely it would, Polaris. Unfortunately I don't feel I understand that side of things well enough to put it in writing! That was the purpose of my bit about a broad panel of blood tests. I didn't feel I could list everything out (and as I've said don't feel competent to do so) - but it's about vitamins and mineral levels (it being difficult to maintain levels without much of a thyroid, as I understand it?) as well as tests on thyroid functions. And currently most of us don't get any of that done as a matter of routine.

    If you would like to refer to my letter and expand upon that when you write, I would be delighted.

  • Have done so and e-mail sent. Hope others will be encouraged as it was easy to copy, paste and adapt your template rather than start from scratch on such a complex subject.

    I did add that thyroid disease affects every cell and organ in the body and adequate treatment could save the NHS enormous sums on prescriptions for heart disease, high cholesterol, etc.

    I have a good feeling that something might be done if everyone also writes to their MP.

  • afaghclark@hotmail.com

  • Hi Humphrey

    I am delighted with your action.

    Yesterday on the "pulse" I made a small comment which inbrief high lights your comments.

    I invited Pulse to look at the thyroid Web for comments of patients in need of help.

    We should all send your copy to our MP. Please le me have it.

  • If there are now three replies to your post, Afaghieh, my apologies. This is certainly my 3rd attempt at posting one ...

    Thank you for your encouragement!

    Having promised a formatted copy of the above letter to anyone who wants it, I now find that putting it in a personal message strips out the formatting and the end result looks exactly like the version above. :0(

    So, if you'd like the formatted version I'm afraid you'll need to let me have a proper email address.

    Same for anyone else who'd like to send it to their MP.

    What is 'Pulse'?

  • On the government website, there is a facility for starting e-petitions, also change.org is another one that does this. I have taken part in many on-line campaigns petitioning the government initiated on sites including these and they can be very effective. Just a thought.

  • E-petitions need 100,000 signatures before they will even consider discussing the issue.

    Thyroid UK ran a petition in 2011, it reached just over 5,000.

    Louise

    x

  • True. Although I was contacted regarding the 'No Margaret thatcher Day' petition when it reached 45K, for some reason. There are other e-petition organisations (Change, 38 Degrees) we could use. But someone has to be the driving force. I don't have the contacts to be the sole pusher, although I'm very happy to be closely involved. It is odd that if HU Thyroid has 100K visitors, as is the site's proud boast, our petitions don't do better. I never enter the site through the home page, where they are advertised. Perhaps lots of HU people, like me, don't know they're there?

  • If you find an explanation - let us know! :(

    We know that many people do not realise that we are Thyroid UK the charity! *sigh*

    We are constantly trying to some up with ways to make it more obvious! lol!

    L

    x

  • Hi Louise

    This is your chance to put a flyer awareness re thyroid problems faced by the public. We can print and display it where ever possible, where we live.

  • well, I have a digest of the Questions section sent to my email inbox daily. I tried to do it with Posts too, but got overwhelmed! Speaking for myself, I'd like a Question like 'do you know a new petition has been started? See homepage' ;-)

  • Another good point. There are petitions on matters in our area listed on the home page of HU-Thyroid. I've recently signed three. And shared one on FB, which got several of my friends to sign, which surprised me (in a good way!). I confess I don't keep up with all the traffic on this very busy site. And don't usually enter the site via the home page. Do you? I am a big fan of e-petitions - it seems like the last vestige of democracy, IMHO: a potential way of making a difference.

    If I get any kind of response from either my MP or Jane Ellison, and they want something done (like a petition) - then I'll let you know.

  • Hi Humphery.

    I've sent an email to Jane Ellison too, and I am seeing my MP this Friday. I'd be interested in what reply you get, so keep us informed!

  • Will do. Let's all keep sharing whatever information comes back.

  • In future, I will ensure that I visit the home page at least once a week. Every signature counts, after all!

  • I don't like to bombard my Facebook friends with epetitions - but that's a good place to share at least A thyroid petition, once in a while - if you do FB. Or Twitter.

  • Hi Humphrey

    Just thought I'd let you know that I've just received a very positive reply to the email to my MP as follows:

    "...regarding your concerns about existing diagnosis and care for hypothyroidism, I understand that this is a matter close to your heart and I have today written to the Secretary of State for Health, Rt Hon Jeremy Hunt MP, to draw his attention to the concerns you have raised. I will be in touch again as soon as I receive a response."

  • That's brill! Did you mention Jane Ellison - who is in Jeremy Hunt's department and has already got her foot on the thyroid ladder, as it were?

  • Yes, I asked him to send the letter for onward transmission to Jane Ellis, Parliamentary Under-Secretary of State for Health, but it seems he has decided to send it to Jeremy Hunt !

    I have to say that my particular MP has always been very conscientious and responsive towards his constituents.

  • Just thought I'd let you know that I've just received a very positive reply to the email to my MP as follows:

    "...regarding your concerns about existing diagnosis and care for hypothyroidism, I understand that this is a matter close to your heart and I have today written to the Secretary of State for Health, Rt Hon Jeremy Hunt MP, to draw his attention to the concerns you have raised. I will be in touch again as soon as I receive a response."

  • Hi Humphrey

    Just thought I'd let you know that I've just received a very positive reply to the email to my MP:

    "...regarding your concerns about existing diagnosis and care for hypothyroidism, I understand that this is a matter close to your heart and I have today written to the Secretary of State for Health, Rt Hon Jeremy Hunt MP, to draw his attention to the concerns you have raised. I will be in touch again as soon as I receive a response."

  • Hi Humphrey

    I today received a five page letter from Jeremy Hunt dealing with the eight points based on your template letter. Unfortunately, I don't have a scanner but to give you an idea of the utter frustration and rage I am feeling at the moment, here is his reply to point 5 -Investigation into why NHS is paying exorbitant prices for T3 when the rest of Europe is not:

    " The UK already has amongst the lowest prices for branded medicines in Europe and it's prices are referenced in many countries across Europe and beyond. This is shown in the most recent pharmaceutical price regulation scheme (PPRS) report to Parliament.

    Under PPRS,, pharmaceutical companies may not increase the NHS list price of branded products before obtaining approval from the Department, other than an NHS list price change subsequent to the requirements on flexible pricing. Approval is based on a set of criteria under the terms of the scheme.

    Within the flexible pricing provisions, companies may propose an initial price for a medicine that reflects it's value at the launch of the medicine, while retaining the freedom to increase or decrease this original price list as further evidence or new indications for the medicine emerge and change the effective value that the medicine offers to NHS patients."

    The rest is in the same vein - all talk and no action !

  • So many words to say so little. A load of waffle really.

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