Viewing 40 posts - 1 through 40 (of 66 total)
  • Polite request to put pen to paper …
  • cinnamon_girl
    Full Member

    First time I’ve ever requested signatures on an HM Government petition but this affects me personally as well as thousands of others.

    I’ve suffered from a less common thyroid condition for at least 7 years and it’s considerably affected my life as well as ability to ride a bike. In addition I’ve had to fund my own blood tests as well as medication that’s for life. The NHS treatment of people like myself is a disgrace.

    Happy to answer any questions and if anyone would like info on thyroid matters/support forums/links then e-mail in profile.

    Thank you. 🙂

    http://epetitions.direct.gov.uk/petitions/64191

    slowoldgit
    Free Member

    click

    cinnamon_girl
    Full Member

    Thank you very much. 🙂

    allthepies
    Free Member

    Having to self fund bloods and medication seems a bit rum, how come that’s the case ? Don’t they believe you ? 🙂

    cinnamon_girl
    Full Member

    I’m afraid that I can’t go into detail due to a formal complaint lodged with the Parliamentary and Health Service Ombudsman. However, my NHS consultant has confirmed that I need the meds that I self-medicate with but will not prescribe them.

    CCG’s have been telling GPs that they can’t prescribe a particular medication even if the patient has been taking it and has regained their health.

    It’s madness.

    backofthepack
    Free Member

    Signed

    allthepies
    Free Member

    You deserve better than that.

    Signed.

    Philby
    Full Member

    Signed – hope you get positive outcome!

    cinnamon_girl
    Full Member

    Thanks chaps. 8)

    unovolo
    Free Member

    Signed 😀

    iolo
    Free Member

    Signed, I know what it’s like to struggle to get the healthcare you deserve.
    Good luck.

    Bunnyhop
    Full Member

    I pretty sure I signed it, although it told me I had to click a link. Which when I went back to the form I couldn’t see.
    Hopefully it’s all gone through now.

    allthepies
    Free Member

    You sign it and the system sends you a confirmation Email which has a link embedded. Click on that EMail link to confirm your signature.

    Bunnyhop
    Full Member

    allthepies – Thanks. I now have cofirmation 🙂

    RaveyDavey
    Free Member

    Signed. Good luck with it and for the future.

    oldnick
    Full Member

    Signed, gotta love it when effective medicines* can’t be prescribed because of industry led red tape.

    *

    my NHS consultant has confirmed that I need the meds that I self-medicate with but will not prescribe them.

    cinnamon_girl
    Full Member

    Thank you. 🙂

    In Scotland there is a Petition that’s been rumbling along for several years. The MP Elaine Smith has been involved, herself a sufferer.

    http://www.scottish.parliament.uk/GettingInvolved/Petitions/PE01463

    Keando
    Full Member

    Signed

    oldfart
    Full Member

    Signed Elaine , that sucks , do you want me to share it on FB and get some of the old gang on board ?

    jambalaya
    Free Member

    Done. Good luck with it

    cinnamon_girl
    Full Member

    Thanks all, much appreciated 🙂

    Signed Elaine , that sucks , do you want me to share it on FB and get some of the old gang on board ?

    If you wouldn’t mind oldfart, thank you. 8)

    Just to say that I don’t have a problem with funding my own meds, after all I can buy them from abroad considerably cheaper than it costs the NHS. Cost of blood tests is horrendous though, am currently needing to spend a couple of hundred on two tests.

    It isn’t only women that are affected by this condition, this poor chap is clearly suffering:

    nbt
    Full Member

    As others, I’ve signed

    blastit
    Free Member

    Signed All the very best of luck to you.

    CountZero
    Full Member

    Signed. 🙂

    monksie
    Free Member

    Can’t you use the results from your bi-annual thyroid blood test that you’ll get from your GP as part of your standard or usual treatment offered? Making the huge assumption that you have bi-annual blood tests etc.

    cinnamon_girl
    Full Member

    Can’t you use the results from your bi-annual thyroid blood test that you’ll get from your GP as part of your standard or usual treatment offered? Making the huge assumption that you have bi-annual blood tests etc.

    I ‘manage’ my condition but my Consultant ‘monitors’ me. No GP involvement. Blood tests don’t tell the whole picture, depending on what’s done. It is not straight-forward!

    monksie
    Free Member

    I thought it might help with “I’ve had to fund my own blood tests”. I ask for and get the full breakdown of my blood tests at GP’s and hospital. I have no idea how to interpret the data but my wife does.
    I’m intrigued though. I would be really interested (genuinely) to know how you ‘manage’ and your consultant ‘monitors’ your thyroid condition without any involvement with your GP. Not even letting your GP know what’s going on with treatment? I’d love to be able to cut my GP out of my treatment plan (I also have a thyroid dysfunction along with ‘the other thing which is related’).

    roper
    Free Member

    signed. I understand some of the difficulties and hope you get all of the support and help you need.

    rickmeister
    Full Member

    signed, hope you get the best outcome

    However, my NHS consultant has confirmed that I need the meds that I self-medicate with but will not prescribe them.

    This is a little hard to understand.. Post code lottery on prescriptions maybe ?

    thegreatpotato
    Free Member

    As a “normal” hypothyroidismist, signed. Good luck.

    cloudnine
    Free Member

    Signed..
    How can you tell Mick Hucknall is a sufferer?? Is one symptom an ability to create crap music?

    stevied
    Free Member

    Signed 🙂

    mucker
    Full Member

    Signed, hope you get a result.

    willard
    Full Member

    Signed.

    Good luck.

    CountZero
    Full Member

    I thought Mick Hucknall’s main problem, apart from tedious white soul and an ego big enough to have its own postcode was being a priapic shortass.

    cinnamon_girl
    Full Member

    @ monksie – with apologies but unable to answer that. What has helped me is obtaining copies of blood test results complete with reference ranges, you’re entitled to ask for this but there may be a small charge for printing. I’ve also read extensively and educated myself on my condition, knowledge is power.

    The UK thyroid forum that I support has 20,000 members, 5,000 have joined in the last 3 months.

    Everyone – thank you so much for sparing your time to sign. It is appreciated. 8)

    spacemonkey
    Full Member

    My missus suffered with thyroid problems for a long time. Thankfully she ended up going private and getting better help. What she endured at times was properly horrendous (I’m talking about the condition she was in, not the treatment/advice she was given).

    Signed.

    Good luck CG. If you think it might help you to have a chat with her then let me know.

    trambler
    Full Member

    Signed, best of luck.

    cinnamon_girl
    Full Member

    Mick Hucknall is hypothyroid and has recently gone on tour. I will be interested to see how much he can do as he is determined to treat his condition through diet alone. He is refusing to take drugs (lolz) but fails to realise that he needs hormone replacement meds which isn’t actually drugs.

    jamj1974
    Full Member

    Done.

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