NICE - your views and experiences

[helvella]

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.

📅Contribute by completing our survey by 7 April⬇️

Try this Twitter shortened link:

t.co/p1whnNylxC

Or this link directly to the Yonder survey platform:

yonder.online-host.solution...

The original post on Twitter is here:

twitter.com/NICEComms/statu...

[ Edited to remove the link which failed to work. Added Yonder link. ]

[TiggerMe Ambassador]

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

Thanks 🍄

[RedApple in reply to TiggerMe]

The second link (Twitter shortened link) works for me, so no need to sign up for TwitX

[TiggerMe Ambassador in reply to RedApple]

Perfect, thank you 🤗

[helvella in reply to TiggerMe]

I don't feel the need to change my brain because Elon Musk wants me to call it something other than Twitter!

And - as you very well demonstrated - we all know the old name!

[TiggerMe Ambassador in reply to helvella]

I know it's just like the time Prince (pop star) became some symbol 🙄

These people are just attention seekers 😂

[Staffsgirl in reply to TiggerMe]

Same here…yonder wouldn’t work.

[joydot]

done. they arent going to like it but its a warm up for what is to come.

[helvella]

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.

But I did make many comments.

[Zephyrbear in reply to helvella]

Ditto… it seems to be a survey all about NICE which it isn’t and I’ve let them know so!

[Framboise]

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.

[helvella in reply to Framboise]

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.

[Framboise in reply to helvella]

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!

[ThyroidieGriaffe]

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.

[helvella in reply to ThyroidieGriaffe]

Thanks - and do pass it on wherever you can. (Though I suspect it can only work within the UK.)

[Zephyrbear in reply to helvella]

It also seems to be slanted towards NHS England, ignoring all the other devolved NHS administrations…

[helvella in reply to Zephyrbear]

NICE has a somewhat odd and poorly defined relationship to the other three nations.

As I see it, it needs to state where something applies on each and every guideline, etc. so that it is explicit.

When they make scientific appraisals it is difficult to see why they wouldn't apply everywhere!

[Sleepybunny]

Hi,

Please can you post this on Pernicious Anaemia Society (PAS) forum if you have time. Thanks.

[helvella in reply to Sleepybunny]

Have done so.

But feel free to copy any such posts yourself - if you wish!

[Charlie-Farley]

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.

There really is a stark difference.

[ThyroidieGriaffe in reply to Charlie-Farley]

The moo cow probably gets treated better.

[Charlie-Farley in reply to ThyroidieGriaffe]

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.

[helvella in reply to Charlie-Farley]

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.

[Zephyrbear in reply to Charlie-Farley]

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.

[Mlinde]

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.

[helvella in reply to Mlinde]

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.

t.co/

The survey isn't anything to do with Twitter.

Screenshot of t.co Twitter page

[Charlie-Farley in reply to Mlinde]

I went through it as an advocate - I think that fits us all on here. Pulling each other along like a tag team 🤗

[serenfach]

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...

[Lottyplum]

so, completed the survey! God help them as I have been ruthless! Might poke someone in the eye!

[annnsandell]

This survey appears to be aimed at professionals and not mere patients.

[helvella in reply to annnsandell]

But that is why it is important for mere patients to respond.

They need to understand when they ask for responses from "YOU" that must include US - patients.

It is not acceptable to assume patients won't respond.

If they want to exclude patients - they need to honestly state "patients should get lost because we are not interested in their opinions".

NICE image

[Mlinde in reply to helvella]

Do you really think so? Frankly, I regard it as just more tickbox democracy, some company is being paid to do it. A complete waste of time.

[arTistapple]

Done. I agree it’s not altogether aimed at the general public/patients. However they remember from time to time to include us.

[Confused01]

Why on Twitter 🤷🏻‍♀️. I won’t sign up for. They should be putting is via a NICE link itself tbh.

[helvella in reply to Confused01]

It is not ON Twitter.

It is simply that they posted an open invitation on Twitter and the Twitter system converted the link to a shortened URL (starting t.co).

I have now received an email invite and that contains this link:

yonder.online-host.solution...

If you sign up to NICE alert emails, you too will get a direct email of such things.

[Confused01]

Thanks. Survey done.

[HighlandMo]

Done - will it be listened to?????

[helvella in reply to HighlandMo]

Maybe look at it from the other end? If we don't say anything, then we definitely won't be listened to!