NICE Guidance Patient response survey.

[UrsaP]

I know this has been posted before and I have already asked you all to respond individually to the NICE draft, but also consider doing the patient survey that ITT are putting together. It is not long or complicated but will help to show the feelings of patients in this matter.

This NICE guidance is going to be in play for a long time before any review will be considered.

ITT Improve Thyroid Treatment survey to reflect the patients' voice on the the NICE draft guideline on thyroid disease and management. Ends on 30th June.

Please complete it!

forms.gle/E3kC53BdqNtJnpao8

If you have any further comments, please email them to [e-mail]

We need as many responses as we can get to truly reflect patients' views!

[UrsaP]

linda96

[knitwitty]

I completed this the other day and was really pleased that you could write an extensive reply but something has been bothering me somewhat.

Why have GP's not been asked to give this to all their thyroid patients, if you are not part of this forum or unable to use the internet you won't even know about this survey and subsequently your experience of living with a thyroid problem is probably going to be overlooked completely.

Will these NICE guidelines only reflect what they want them to reflect because of a lack of input from actual patients.

The older I get the more cynical I become, I hope I'm wrong.

[UrsaP in reply to knitwitty]

Appreciate you doing the survey. Not quite sure what you mean by lack of input from 'actual patients'. We are all patients? That is what the survey is about getting patient response. That is why we are trying to get this survey to as many as possible.

It is also possible for you to complete an individual response which you might consider?

The NICE draft was only issued on the 5th June. Even if there had been enough time to try to engage GP surgeries it is highly unlikely they would have agreed to help. They have not been responsive in the past. Because we are a 'patient'. group not medics. There is little time to organise a survey to be distributed, completed, returned, collated and analysed and incorporated into the response, before the cut off date. There is a lot of work involved and it is a group of patient volunteers who are doing this. I assure you the team involved are doing their upmost to get as many patients responding as they can.

Perhaps the suggestion that NICE could have done a patient survey, prior to starting on the writing of the Draft, could be put to NICE? But this is not is their usual procedure.

Patient groups did input to the scope of this draft, personally I see little of the weeks of extreme research and hard work, carried out by just a few volunteers in the group I am personally involved with. ITT. We were literally working around the clock. The document we submitted is in our files on our FB page - ITT Improve Thyroid Treatment. It would be interesting to see what others think about how much NICE have considered, from our document and from from others.

I understand the increasing cynicism. I think we all do. It is hard to keep focused and to keep fighting when the brick walls just get thicker and higher. But what is the alternative. Give in? That is not an option. We have to keep up the fight for all our sakes.

The more responses we can collate from patients the better.

You may recall the Consultation process to stop medicines being routinely prescribed. ITT worked hard to push this into the wider public domain, and at one of the Face to Face meeting that NHS held, I was told they had more than 2500 responses to this consultation. The bearer of this information was so impressed because it was much more than they normally get. I told him it was appalling. What effort did they make to contact patients?

There are something like 1.5 mil Hypothyroid patients in the UK. c300 000 of those are thought to be unable to convert T4 properly. How many of those 1.5 mil or even those on T3 were directly contacted? I certainly wasn't. My husband was on a med on that list. He had a letter telling him his med was going to change but not to worry they had a combination option they could offer him, so when he finished one of his individual mediations, he could discard the rest of the second one and they would issue the new combination. Not sure if he got the letter before or after the consultation closed. I did not get any letter!

It is only going to be through patients standing up and being counted, and not accepting the rubbish we are given, and fighting this that we will get this publicised and maybe get somewhere. There are dr's out there who are doing their best to change the views, we have to help them.

[knitwitty in reply to UrsaP]

Apologies if I offended you, I was not aware that you had initiated the survey.

I was expressing incredulity that patients who suffer from hypo/hyperthyroidism do not seem to be consulted by the medical community prior to any changes in guidelines before those guidelines are changed or modified.

I am just a little bit fed up at the moment because following two consultations with endocrinologists, who both agree I would probably benefit from taking T3 alongside my levothyroxine, I am being denied it because not enough studies into its benefits have been done ( lets face it if you don't do many studies you will never find out if there is a benefit from taking T3, it's a bit like saying you don't have a conversion problem if you never measure T4 and T3 at the same time you'll never know!), and the improvement in quality of life does not justify the cost.

I was advised to buy it on the internet and the endo would monitor me,

I was advised to see someone privately as 'everything is available or up for discussion' if you are a private patient.

I think it is long overdue that patients were asked for their experiences when taking different types of hormone replacement, and at no time was I insinuating that anybody who suffers from thyroid issues is not a patient.

Apologies again I was not trying to upset anyone.

[silverfox7]

I appreciated doing the ITT Survey. I started off reading the question and thought 'here we go again' but then I was asked why did I give that answer so it gave me the opportunity to expand my thoughts, point out any negativity etc which usually is t possible. and. comment on things that are important to me.

[UrsaP in reply to silverfox7]

Thanks silverfox7

[TaraJR]

Thanks UrsaP for posting the reminder. Only 2 days left to complete this important survey