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

The original post on Twitter is here:

twitter.com/NICEComms/statu...

[ Have been asked to re-post here on PAS! ]

[Nackapan]

Thanks

[Tythrop]

Do we have to be invited to take part?

[helvella in reply to Tythrop]

No! Just click away - I think.

I was able to put in my response readily and so have others who saw my original post on Thyroid UK.

[helvella in reply to helvella]

Image

Screenshot of image used by NICE on Twitter

[clivealive Forum Support]

Hi there helvella I had a quick look at the survey but I don't think that I as an 82 year old can have any useful input as none of the criteria applied to me.

Hope that you are keeping well,

[Wheat]

hello helleva, ive filled in form from my perspective, although i feel its for medical personnel, thank you. x

[Narwhal10]

Thank you helvella,

I trust you are well. I entirely agree, telling them is one thing, whether they take it on board is another. At least we have the opportunity.

[Jillymo]

I participated in a Nice Survey a couple of years ago and got a response !

It creates awarness. 👍

[AKatieD]

Please could you post on thyroid uk group Helvella (I know you are on there too)?

I think it would be great for lots of patients to point out that individual needs must be met not just the cheapest treatment and to do that NICE guidance needs to put that up front and in bold (not literally speaking). Currently that does not happen.

Thanks for the link, very useful and important to give them feedback

[helvella in reply to AKatieD]

It is already on the Thyroid UK forum!

[AKatieD]

Ah sorry, only saw it here today

[Blod424]

I have just completed this survey and given very detailed instances with regard NICE regulations with regard to issues concerning administration of B12 injections, their frequency, and the battle that most of us have to try and increase that frequency, even thought NICE have changed the guidelines. My GP practice constantly deny all knowledge of these changes, DESPITE me showing them printouts of NICE guidelines. They say they have not been informed and will not change.

[JanCymru]

Done! Hope it helps. Managed to mention the PAS as many times as I could.