Let's take some action!

Another thread suggested we should march on Downing Street with placards. 10/10 for enthusiasm! And for the idea. Sadly, I don't think we're allowed to do that anymore. However, surely it is time that we did SOMETHING, rather than just constantly trying to outwit health professionals?

So here's a suggested start. I shall send something to Mrs Spelman, I think, whether there's a deafening silence in response to what follows or not.

You will, perhaps, recall Mrs Spelman from this Parliamentary debate : publications.parliament.uk/...

I have located Mrs Spelman via google. Below is a draft of an email I can send her. If she is taking up cudgels on our behalf it is only sensible for us to try and shape the campaign she mounts and be a BIG part of it - as big as our individual states of health will permit. If any of you would like to add anything to the email, let me know soonest.

Would the the inspired soul who first approached Mrs Spelman like to PM me? I'm slightly concerned that she might not answer me as she's not my MP (and my MP is a waste of space).

Once we see what, if anything, Mrs Spelman sends in reply we might look to put together an action group from with HU:Thyroid?

How does this sound for a first salvo? :0)

-------------------------------------------------

email:

"Dear Mrs Spelman,

on 17 December last year you raised the above in Parliament at the behest, I believe, of one of your constituents. I have lost track of who that was, but she is a member of the online forum Health Unlocked: Thyroidism, to which I also belong.

We who suffer with thyroidism seem always to be at a remove from the ears of those who might be able to help us. And it is, unfortunately true (and documented) that the health service is antithetical to much of what many patients crave in order to feel well again. It was so good to see your debate on the issue of thyroidism. We are keen to make sure that the impetus it has generated is continued and, indeed, increased.

I wonder if any of the follow up work promised in the debate has been forthcoming? There are thyroid sufferers like myself who would be keen to, inter alia, provide a note of things that the NHS could do to do to enhance the well-being of existing thyroid patients, a note of how doctors could help themselves and their patients in diagnosing thyroid malfunction, even a petition to deliver to Downing Street if that would be helpful.

Please let me know if there is anything we can do to make that happen,

with all good wishes,"

24 Replies

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  • I think maybe we should send the petition anyway .(they may just think that if they help us they may get our vote in the next election)

  • is this an existing petition, Lizzy? I'm aware that this sort of thing has been tried, from this forum, before.

  • Coincidentally, today, I've found a bunch of - sensibly worded - petitions from a link provided on another thread. Signed the lot :0) So there are petitions around: these were somewhere in HU/Thyroid, I think. Shall I send Mrs Spelman a link to them?

  • The constituent was one of our Trustees.

    Marches, petitions and letters are fine, but everyone needs to have a clear idea of what it is they would like the government to do exactly.

    There are only so many things that fall under the remit of the Department of Health and unless you can hit on just the right thing, I'm afraid you will just be met with them quoting the RCP/Society for Endocrinology/BTA/BTF.

    If you look through the transcript, the Minister responding said that they would be contacting RCP for their response. We know what their response will be, it will the same thing that they sent to Scottish Parliament...

    scottish.parliament.uk/S4_P...

    Thyroid UK will continue to support the Scottish Parliament Petition in the hopes that something will be achieved there that will filter down (as it were!) ;)

    Louise

  • Off the top of my head, what would we like the government to do? :

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

    Better training for endos and GPs.

    Investigation into why the NHS is paying exorbitant prices for T3 when the rest of Europe is not.

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

  • Yes everything you say is what is needed

  • Nice list! :)

    Now you need to target the departments that handle the policies that can make these changes.

    And, I would still suggest starting with one problem at a time.

    L

    x

  • Yes: absolutely.

  • Ooer. That response from the Minister is a real slap in the face, isn't it? Is this the same Minister that appeared to be prepared to work with Caroline Spelman for improvement to thyroid malfunctions' diagnosis and care?

    What is needed first off, surely, is an acknowledgement that current diagnosis and care is inadequate in many cases? One could easily cite the paucity of tests done, the lack of interest in patient well-being; the only criterion is does the patient fit the computer profile, the one-size-fits-all treatment.

  • yep! :(

  • For me , I believe we need to get the symptoms of Thyroid issues on the agenda to safeguard individuals and/ or employees, ensuring that the symptoms and impairments experienced are acknowledged by Nhs and Employers , and failure to do so are ethically wrong and discriminatory .

  • Excellent point.

    I will add a paragraph to my email to Mrs Spelman containing this wish list (being the posts from Tiger and Polaris). Then I guess we wait and see what happens.

    I don't think we will make significant progress unless and until we find politicians, doctors, celebrities willing to stand with us. By the by - does anyone know of a celebrity with thyroid malfunction? The late great Richard Griffiths was a life long sufferer, of course. A martyr to his (thyroid-related) weight, which killed him far too young, in the end.

  • Theresa May MP ... I am keenly interested in this as I am currently claiming , unfair dismissal ( breach of trust and disability discrimination agains

    former employer ... The symptoms were debilitating in line with the equality act ... They are disputing disability , and even after supplying a statement of disability , medical records , letter from GP and sick notes ... They still will not concede disability ... So humiliation of being sent for Medical Examination . Took a short contract in August as was at risk of loosing my home due to benefit changes , this contracted has now ended . During this. Period was taken to a and e ... Choking and swallowing , 2 periods of work , first a couple of days throat problems , then another 2 week period with tearfulness , low mood , cognitive slowness and mental fog .

    The prelim hearing took place last Friday , the stress of the day has left me in bed since returning home ... Trembling .... Take Ndt . Worried about medical exam , anyone here been through anything similar ?

  • Joanna Page from Gavin and Stacey as hypothyroidism

  • Who is in my list:

    dl.dropboxusercontent.com/u...

    Rod

  • that's an interesting list, Rod. All their thyroid problems seems to be on the spectacular side - no 'simple' hyper- or hypothyroidism in evidence? Plenty of Graves' sufferers. That's a particular type of goitre, isn't it? As you say, it is interesting that so many powerful men (and Ms Kirchner) had/have it. Is it more stress-related than we believe? That would help explain why incidences of thyroidism seem to be increasing so fast. Not only dietary additives and chemicals in our lives, but also the increasing stress we put ourselves under daily. I stopped working for other people - for good I hope and trust - at the end of last August, and I do feel better (not so prone to growliness either). Although, coincidentally, that was pretty much when I took to NDT as a permanent choice.

  • I don't know that character In G & S? Expand, please Lizzy?

  • She plays stacey .How i know she as a thyroid problem is that there was a piece about it in the news paper a few years ago,can not recall which paper though.

    But i agree we should do something ,or before you know another year gone by and all still in the same boat.

  • A version of Richard Griffiths' story is available here:

    Overeating? It's just pie in the sky; Fed-up Richard slams doctors.

    thefreelibrary.com/Overeati...

    "Engorged" thyroid as a child, radio-active iodine treatment, problems forever.

    Rod

  • This is what I've sent:

    Dear Mrs Spelman,

    on 17 December last year you raised the above in Parliament at the behest, I believe, of one of your constituents. I have lost track of who that was, but she is a member of the online forum Health Unlocked: Thyroidism, as am I.

    We who suffer with thyroidism seem always to be at a remove from the ears of those who might be able to help us. And it is, unfortunately true (and documented) that the health service is antithetical to much of what many patients crave in order to feel well again. It was so good to see your debate on the issue of thyroidism. We are keen to make sure that the impetus it has generated is continued and, indeed, increased. Thus this weekend I asked on the forum to see who was interested in taking some action, and what we might usefully do. It is your interest in thyroidism that has been the catalyst for this, and we would like to help you take the fight forward in any way we can.

    First of all, I wonder if the follow up work promised in the debate has been forthcoming? There are thyroid sufferers like myself who would be keen to, inter alia, provide a list of things that the NHS could do to do to enhance the wellbeing of existing thyroid patients, a note of how doctors could help themselves and their patients in diagnosing thyroid malfunction, even a petition to deliver to Downing Street if that would be helpful.

    Here is a note of the basic improvements members of HealthUnlocked-Thyroid are very keen to see:

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

    Better training for endos and GPs.

    Investigation into why the NHS is paying exorbitant prices for T3 when the rest of Europe is not.

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

    We feel we need to get the symptoms of Thyroid issues on the 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 in many cases.

    Please let me know if there is anything we can do to make the above happen.

    With all good wishes,

  • The e-address I copied from the website to use for this doesn't work. Words fail me.

  • I fiddled with it:it's worked. I think. Fancy having an error in your own email address!

  • And now I have this automated reply:

    "Caroline Spelman MP

    Member of Parliament for Meriden

    Please note this is an automated reply.

    Thank you for your recent e-mail which will receive attention as soon as possible. I appreciate that your request may be urgent so please may I assure you that this email address is checked regularly.

    Due to a strict Parliamentary protocol I am only able to act on behalf of and assist my own constituents. ..."

    So that, I suspect, is the end of that. :0(

  • I am delighted to be eating those words above. This is the rather nice reply I've had from Caroline Spelman's office:

    "Dear Ms. Moore,

    I was very grateful to receive your email and learn of your experience with thyroid problems. I am certainly keen to press for changes, and push thyroid health up the agenda, as it clearly is having a huge impact on a large number of people without proper or full diagnosis and treatment.

    The Public Health Minister, Jane Ellison MP, wrote back to me after the debate and mentioned that her department were going to look into the problems raised, and see what could be done. I was encouraged by the Minister’s response, however, please do take the opportunity to write to the Minister, via your MP, so that she is aware of your experiences and knows of your support for the outcome of the debate.

    I will also keep pushing on this.

    I was also grateful to you for raising the point about my website, which I hope has now been fixed.

    Every Best Wish

    Caroline

    Email sent on behalf of The Rt Hon Caroline Spelman MP"

    I shall certainly write to my MP for onward transmission to the Minister, Jane Ellison.

    Please, everyone, do likewise. In case you're not a regular MP botherer (I am, sadly) let me assure you that it is easy to find your MP and their address online. I think ' find my MP' will do it. In case you want to refer to this first letter, as well as being Humphrey I am a k a Judi Moore. When I've written mine I'll post it here, in case anyone wants a crib to get them started.

    Should I do anything more to get this more widely seen on HU/thyroid?

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