Do you need help filling in the NHS Consultation Survey? This handy document will help you do it in super quick time!

[Pamela0106]

I wrote this document to support followers of the ITT Campaign but I’d like to offer it up as support for the Thyroid UK T3 Campaign too!

All that matters here is that we speak out together and submit more surveys in order to save T3!

The Consultation organisers told us this week that only 1200 patients have completed the survey. This isn’t enough to save T3. More is needed and QUICK!

The below is a copy of the post I did for ITT (hope it’s allowed) but in short - the link at the bottom will open a document that translates the questions into plain English and gives useful hints and tips on how to fill it in (you really only need look at the text in red).

I hope it helps people!

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FINDING IT DIFFICULT TO COMPLETE THE NHS SURVEY?

ITT Campaign has produced a document that is a guideline or an aid to help people when completing the NHS England Consultation Survey:

Items which should not be routinely prescribed in primary care: A Consultation on guidance for CCGs

The survey is due to end on 21st October 2017 so only a few days left to have your say! DON'T MISS OUT!

Here is the link to the survey:

engage.england.nhs.uk/consu...

We hope you find this guide useful.

Have a great weekend everyone! 😊

Disclaimer: ITT Campaign does not wish to influence or instruct any persons survey responses therefore individuals who complete the survey should ensure that responses, comments and opinions submitted are entirely their own.

docs.google.com/document/d/...

[Hidden]

Thank you!! Makes it a lot easier x

[Pamela0106 in reply to Hidden]

You’re welcome hun.

Just desperate to make sure there’s enough responses so we can all be heard and not left without our T3 xxx

[Raventhorpe]

This is brilliant it makes it so much easier to understand the form especially us lot who suffer with brain fog.

[Pamela0106 in reply to Raventhorpe]

Aww I am so glad you find it helpful xx

Just hope more people do the survey as time is running out arghh! X

[Kitti1]

What a fantastic idea Pamela ! Thank you

[Pamela0106 in reply to Kitti1]

Fingers crossed it helps people! I know when I did that survey it was more complicated than it needed to be and daunting for some people I think xx

[UrsaP in reply to Pamela0106]

I know people who have been put off -too easily! Good Idea Pamela.

Great thinking.

Still can't believe that NHS think 2500 responses is good! I did say I thought it was appalling that they were happy with that figure and did say that it proved that this (and no doubt other) consultations were obviously NOT reaching the people it should. A huge flaw in the system.

[lidoplace]

That was much easier to do,thankyou.

[Quokka]

Great idea! I wonder where they got the figure 2500 from? Do they know how many UK patients are on (or have been on) T3 I wonder? I thought 1200 responses sounded like a lot. How can they be sure they've reached a large number of those patients? I wouldn't have know about the Consultation at all without this brilliant forum. Maybe they could have paid GPs an extra 10p to tell patients about the Consultaion document while 'deprescribing' their T3.

[Pamela0106 in reply to Quokka]

2500 is the number of total survey responses they’ve received so far. 1200 of those are from those who selected themselves in the survey to be patients.

When you think of the population size, 2500 is pitiful really. And only 1200 patients is really low considering there’s 18 items on the list.

Our petition has 25 thousand signatures just for Liothyronine - so overall only 1200 who did the survey is poor so far.

That’s why I made this document to try and encourage more people to do it. I think people are putting it off because the survey isn’t exactly quick or easy. It’s quite a daunting survey for people and I think they are hesitant so hopefully this guide/aid will help.

X

[mrsm49 in reply to Pamela0106]

Can the press get involved? I am totally shocked that only 2500 have responded given the population of the uk.

For something so important that affects us all the lack of promotion by the nhs of this consultation can only be deliberate 😔

My hubby and I hve signed it although I'm going to try to update/renew mine as I've recently bn told by my consultant that I now hve to try to buy my t3 myself as ccgs will no longer allow supply . Another crazy thing as consultation not even finished!

[ljk1]

Well done Pamela! I think they should be censured for their wording of the document and for the lack of publicity of the document, we have met hospital Consultants who prescribe T3 and didn't know about it!

[Pamela0106 in reply to ljk1]

I’m quite in agreement! It’s had no publicity at all from the organisers. If it wasn’t for forums like this one and campaigns such as TUK and ITT I don’t think many patients would ever have known. It’s a real shame if this is what is gonna decide the fate of T3.

I fear that many in the medical profession will side with t4 being just fine so we need to outweigh that response by getting more patients to complete.

Feel free to share the document guide with anyone and everyone x

[Pamela0106]

Such awesome comments on this so far. I’m reallt glad you guys found it useful xx Please feel free to share the links to both the survey and the completion guide to anyone and everyone you know. Xx

[Hyposucks in reply to Pamela0106]

Thank you Pamela0106, I was really struggling with the survey and then found your link. I have just submitted it and it's such a weight off my mind. I too think it's disgraceful the way in which the survey is worded and no publicity anywhere to be seen. xx

[Pamela0106 in reply to Hyposucks]

Aw that’s great you managed to get it done though! I was the same when I first did it - I kept putting it off lol. Glad you found the document useful xx ❤️❤️❤️

[Camdentown]

Very helpful; thank you. No excuse not to submit the form, and the deadline is imminent (20th, I think).

[amala57 in reply to Camdentown]

21st. 😊

[Hidden]

Can men fill the survey in too? Or is it just for women with thyroid disease?

[amala57 in reply to Hidden]

It's open to everyone!

[Pamela0106 in reply to Hidden]

Everyone and anyone should do it x

[Pamela0106]

I’ve had lots of people say this really helped (not just on this forum). Hoping it’s at least helped get a few more survey responses done!

The more the better!

We have to be heard on this. See it like “voting” .... have your say and don’t wake up on the 22nd October to learn that T3 is gone and wish you’d only just filled in the survey!! 😂 Fill it in nowww xxxx

[Pamela0106]

Anyone else used this and have any feedback for me? Did it help?

[Pamela0106]

ONLY 5 DAYS LEFT TO FILL IN THE SURVEY AND SAVE T3!!!!!!!

[Hillwoman]

Thank you for providing the template. I'm using it at the moment, but I haven't finished. My brain fog and general fatigue have been so bad this year that I'm still struggling with it. Just a year ago I was so much better at understanding and organising the sort of evidence that I need to provide answers to section 4. As it is, I don't think I can provide what is needed. Sorry.

[amala57 in reply to Hillwoman]

Just do your best. Doesn't have to be perfect. Mine wasn't! The important thing is that you submit it. 😊

[Hillwoman in reply to amala57]

I have now submitted my form. Big relief! I'm not happy with the standard of my answers, but at least it will add to the numbers.

[amala57 in reply to Hillwoman]

Well done! 😊

[Topkitkat]

Thank you for taking the time to prepare the document. Huge help and my response is now submitted albeit at the eleventh hour.

[Pamela0106 in reply to Topkitkat]

Least you got it in on time xx that’s all that matters xx and you are very welcome x