It appears that NICE are asking people to take part in a survey. I have not (yet) done so - therefore cannot comment on the questions!
In general, it usually seems to be a good idea to take part in surveys like this. If we do not let them know what we think - good and bad - we lose the ability to turn round and explain that we had told them! But taking part does mean they will take notice.
NICE. @NICEComms
📣We want to hear from you as part of an important research project to understand your views and experiences of NICE.
Your feedback will be used to help inform and shape our future development.
Yonder one doesn't work... I've not signed up for twitter which I thought was called X these days? Presumably only half a brain cell is required to sign up so I'll look at it later
Having now completed it - it suffers like so many by being written from the point of view of professional practitioners. Loads of places I simply could not answer, or could not express what I really mean/think.
Thanks for this, I've just completed it. I got through by clicking on the Twitter shortened link which took me directly to the Yonder survey page. Interesting, I wonder how much attention they'll pay to those of us not in the medical professions.
My suspicion is that we need to have a large number of non-medics respond for any significant notice to be taken. Otherwise it will be like so many things - a token measure to appease us.
But questions asking if we use NICE in our daily practice managing patients and systems are impossible for non-medics to answer.
I relied to those sort of questions by saying that I went to the website at least twice a year for information about my own treatment. I commented at some length wherever the question was too difficult, and I also answered bearing in mind innovative treatments, currently used in other countries, because I think those are extremely important. You're right though, this is no doubt a token measure!
Thank you I will share on a couple of groups and encourage patients to respond. Its from.a practitioners view point and long but opportunity to suggest they need to consider patient experience and broader economic analysis which were both missed in the thyroid guidance because it was a committee of clinicians.
Vented much in comments after recent run in with doctors wanting to bu%%er about with my medication. When someone with a doctorate in science (who has been reading in spare time for three years) gets treated like a moo cow visiting a vet - what chance does anyone have. They literally think only they have the ‘special smarts’.
I am beginning to realise there is a real difference between people who train and are taught what to think and those who are taught how to think.
Vets are better qualified 😂👍. But seriously with regards to training - what goes in comes out. It is most definitely a systemic problem- I have more than a degree of pity for GPs in general. They all get taught in an echo chamber- unbelievable that a condition which afflicts about 10% of population is founded on bad science and expert ‘opinion’ based on bad science.
And that Thyroid guidelines weren't published until 2019, and B12 still not yet published (hopefully next few days).
Two issues which affect vast numbers of people.
As they become ill, as they are not diagnosed. As damage (body and mind) accumulate. And, even when finally diagnosed, adequate and appropriate treatment simply does not get made available. Whether proper levothyroxine dose, T3, B12 injections, or whatever else.
Yet the direct cost of failure to diagnose - including massive numbers of investigations which do not, indeed could not ever, diagnose thyroid or B12 problems. And their costs.
I bet a moo-cow visiting a vet would get far better treatment than we humans do… I was a vet nurse in my youth after having been a human one and I know whose treatment I’d prefer! But as my boss used to say… there is no NHS for animals.
Well I got halfway through it and gave up as it's clearly aimed at health 'professionals', not the public. BTW, it's not X/Twitter, you don't have to be signed up to it to use the survey.
The link shortener is the one applied by Twitter to links posted there.
Twitter uses the t.co domain as part of a service to protect users from harmful activity, to provide value for the developer ecosystem, and as a quality signal for surfacing relevant, interesting Tweets.
A call out fee for a vet here is £100 if you are within 11 miles of the vets clinic (I am), so unless it is a medical emergency like a caesar, us farmers tend to do it ourselves. Due to start lambing in a week, so if I post here then I may not make much sense!
The guidelines in NICE say that if the TSH is out of range, T4 and T3 should be tested. The trouble is the labs dont go by the guidelines.
I will see if it loads here, as my broadband is currently 0.5, slightly better than dial up...
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What's your experience with hairloss?
NICE Guidance for Thyroid Disease!
I'd be SO grateful for your views on these test results please...
This is why you should ALWAYS view your own blood results.
Surveys looking for participants
