As a registered stakeholder of the NICE consultation on Thyroid disease: assessment and management, ITT are looking to ensure a patient voice is reflected within their formal response to the NICE DRAFT Guidelines.
Their survey is now ready and available for you to complete - just click the link below to fill it in!
Please note the survey will close on 30th June 2019 at 11:55pm.
Done 21.06.19
Done 21/06/19 @ 23:55
Just completed. I get the distinct impression by their terminology that the 'lack of data to support this and that' is a veiled attempt to conceal the primary objective of cost cutting.
Be interested to see what amendments, if any are made because atm, some of the guidlines allow healthcare professionals far too much 'open to interpretation' giving them a free pass to skimp on testing and treatment. Some of the more robotic GP's etc, literally need a definitive list to follow in order to provide correct diagnosis and ongoing treatment.
I have filled it in too. Thank you for posting.
You’re welcome x
Just a small point and I'm not complaining as I know you all work hard on our behalf, the questions on hypER were mostly concerning Graves Disease which does not apply to lots of those of us with Hyperthyroid, including me, (ex - now hypo post RAI) so I was unable to give the answers to those questions as I would have liked. I hope this doesn't skew the survey 😊
Pamela0106 fyi.
Thank you for the feedback. I will ensure it’s passed on to the Hyper reps who helped us pull together the survey. One thing to remember is that the survey covers some key points in the guidelines but not all (we had to limit our questions somehow else the survey would have been huge). However we invite people to provide feedback at the end of the survey too because we were conscious of the fact it doesn’t cover the entire guideline.
Deffo send your thoughts in to ITT using the mail address provided at the end of the survey because they’ll be including a lot of feedback to NICE that isn’t just survey specific xx
Ok Pamela, will do - thanks
Done.
Thank you x
No need to thank me
This situation is ridiculous...
Done. Bit worried about the lack of understanding shown by the draft guidelines.
Thanks for the link. Just done it. I know it might not make a huge difference but they do need to hear that dine of us just don't recover on Levo only.
Couldn’t agree more! Thanks for completing x
Done 22/06/19
I have just completed the survey. I hope that as many of us as possible do. It alarms me that after all the representations made, this awful draft guideline is the best they can come up with. TSH anywhere in the reference range and TSH alone as the measure of success. I could weep, they don’t want to know anything about our thyroid hormones. When you drill down, there is very little evidence for anything they have come up with, they just used their “experience “ Would anyone get away with this in the field of heart disease or cancer?
I live in the U.S. Should I refrain from taking the survey?
Just starting to review the guidelines and was struck by this statement: "When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users."
That's not happening very often, from what I have been reading over the past several months on this forum.
You are more than welcome to complete the survey. The first question allows you to say you’re not a resident or citizen of the UK XX
Thanks. I went ahead and put my 2 cents worth in.
These guidelines will fail patients in so many ways. No plan to include description of symptoms, over reliance on wide TSH ranges, no prescribing of NDT. Levothyroxine is the one drug fits most option, lack of understanding of optimal parameters of TFTs, gross undervalue of Liothyronine as an essential thyroid hormone. The 'possible' risk of NDT and suppressed TSH. Shocking lack of understanding from the supposed specialists updating this guideline.
Thanks for completing the survey x
I really hope people keep sharing and completing this survey as it is so important to collate views for feedback to these guidelines. In my opinion they leave a lot to be desired.
Thank you helen xx
Reminder - survey closes on 30th June. Less than 5 days left to complete it if you’re interested.
ITT are doing well in terms of volume of response but we need MANY more to ensure a reflective proportion of patients are represented.
Please, if you haven’t done so, complete the survey as soon as you can xx
Survey closes in 4 days! Keep the replies coming folks. The more the better xx
Just 20 minutes - that's all it takes - for your chance to have your say on T3 withdrawal
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NICE Guidance Patient response survey.
NICE - your views and experiences
Dr just agreed to Levo dose increase on the basis of the new NICE dosing guidelines 😁
