NICE equality email

[helvella]

NICE wound me up the wrong way today.

I received an email

mailchi.mp/f88453618e93/gil...

I read the email and wrote (and sent) as below:

Good morning Gillian Leng,

I have just received an email from you at NICE and wish to make a comment.

NICE guidance and equality - can we do more?

14 August 2020

It is a testament to the success of the NHS that it has managed to adapt and develop to make freely available a wide range of new drugs and technologies.

The achievements in making new medicines available is, undoubtedly, important.

However, there are OLD medicines which continue to be refused by most of the NHS (in all the constituent countries).

Liothyronine was first available around 1956 so is by no means a new drug. So far as I can tell, it was never patented in the UK, nor in the USA. There is nothing new which can be used in its place. Being a hormone, it is what it is. Analogues might be achieved but at present, if it is needed, there is no option.

Over the past five or more years, prescribing of Liothyronine within the UK has been severely restricted. Various bodies have changed it from something a GP could choose to prescribe to a consultant-only product. Even then, many consultants feel unable to prescribe. And even if they prescribe, continuation of that prescription by GPs has all too often been refused.

NICE has produced guidelines which seem to clamp down even further. Why, even testing Free T3 is relegated to an also-ran test which is almost never needed. Which flies in the face of a considerable body of accumulating evidence.

nice.org.uk/guidance/NG145

I am well aware that NICE is required to consider costs – cost-benefit, etc. But this Liothyronine issue, along with lack of Free T3 testing, has occurred in parallel with grotesque price inflation of Liothyronine products in the UK which are at variance with the stable pricing regimes in force in the rest of the world.

Costs need to be seen to include the costs of inadequate treatment and inadequate testing. These failures mean that all too many patients are investigated, even treated, for numerous suspected issues which are all too likely actually be due to inadequate treatment.

If the cost of Liothyronine Impacts on its appropriate use, that needs to be stated in clear language. NICE needs to advise the politicians, the NHS purchasing executives, everyone involved. You cannot consider costs and yet do nothing about them when there is extremely good evidence of disparate pricing between the UK and, for example, Germany and France.

It is the exact opposite of a testament to success.

I am afraid that claiming the glory of making “freely available a wide range of new drugs and technologies” appears disingenuous when viewed alongside the failure of NICE, and indeed, the majority of the UK medical establishment in managing thyroid disease, especially when Liothyronine might be appropriate. I do understand that there is little glory in adequate treatment of thyroid patients.

I know that the email is about equality. We need equality for thyroid issues. There is next to no understanding of race and thyroid disorder. For example, non-goitrous autoimmune hypothyroidism was once called Ord’s while the goitrous form is sometimes called Hashimoto’s. Yet there is almost no mention of the fact the some genetic groupings are more prone to one, some to the other. Doctors fail to appreciate that northern European people are more likely to have the non-goitrous Ord’s form than are others despite us being located in northern Europe. The corollary being that they will also fail to understand that the goitrous form is both more prevalent in others and can have a more significant impact on breathing and swallowing.

Yes to equality in who manages NICE. But also yes to equality across all disorders and not just those which have a new treatment or technique.

Regards

<helvella>

[nightingale-56]

Well answered helvella . Also, where is the equality when we only have poor quality Levothyroxine, and often not enough of it, when this causes adrenal disfunction.

[JGBH]

Many thanks for writing this email to NICE. Am looking forward to their reply to you. It will be interesting to say the least. I cannot imagine they will change their minds but one never knows. Thanks again for trying to make NICE see sense!

[TSH110 in reply to JGBH]

Do they have a mind?

[JGBH in reply to TSH110]

Probably not.... but one can hope for a change.

[jgelliss]

Great Job Helvella and Great come back reply. Helvella Thank You for being speaking up for the silent voices.

I'm just wondering what does/will it take for medical academia to come around to finally say that *T3* is very vital for many patients well-being.

[TSH110 in reply to jgelliss]

A few centuries?

[RedApple Administrator]

Excellent job helvella ! Will definately be waiting (but not holding breath) to read their response to this.

On the subject of new versus old medicines though , we also need desiccated thyroid to be an option for those that find this to be the only thyroid medicine that works for them. Years ago, my GP was happy to prescribe this for me, but the local CCG said they would not fund it. So refusal on grounds of cost was certainly relevant then. Of course, there's also the other grossly outdated issue that's frequently asserted - the unstable nature of this 'old fashioned' (hence totally unnecessary) medicine.

[TSH110 in reply to RedApple]

Excellent point, plus it’s very easy to optimise...or it was for me.

[MichelleHarris]

Thank you helvella for fighting our corner and saying so eloquently what I could not say so eloquently x

[helvella Administrator Thyroid UK in reply to MichelleHarris]

Thank you. I felt angry rather than eloquent. 😀😀😀

[TSH110 in reply to helvella]

Good to channel the anger into eloquence tho - it was a jolly good reply! We should all copy it to our MP’s

[JGBH in reply to helvella]

Anger can be helpful at times, as you did, in taking action! I feel SO angry with so many issues = when one can't get the help required ....Why has everything to be an on-going battle? Arrgh!

[TSH110]

👏🏽👏🏽👏🏽 Good for you! What rubbish will they put in a reply I wonder when their position is indefensible. Thank you for sending that reply, it is spot on.

[Tythrop]

This needs to be shouted from the rooftops.. or msybe a big demmo.. but we're all too poorley and knackered to do it.

[LindaC]

Thank you helvella - much appreciated - We shall see, eh?

[Shusky]

Thank you helvella ❤️

[Marymary7]

Brilliant email, thank you Rod. 😎

[Jacs]

Thank you Helvella for such a thorough response. It will be interesting to read what, (if indeed they bother ) they reply

[DoeStewart]

Thanks for sticking up for us all, a voice of calm reasoning and facts. I await their reply ( if any) with baited breath

[crimple]

Thanks Helvella for getting angry on our behalf. I just will never understand how supposedly intelligent people do not know the simple facts that T4 needs to be converted toT3. A poor converter will only feel well with some T3 and that TSH is irrelevant on its own.

I am so relieved I no longer have to "head bang". I get T3 on NHS.

Thanks for all that you do on our behalf.

[Golli]

Thank you helvella, for voicing all the concerns and highlighting all the issues we thyroid sufferers have to live with due to mismanagement.

Praying that things will change.......I live in hope,...🤞

[Fatiguedtoodeath]

Thanks for speaking up Helvella we need more people like yourself in this world. It’s horrible that we aren’t listen too. Must be too much money in keeping us all unwell it’s the only conclusion I have at this point

[silverfox7]

Brilliant letter! So hope they have the decency to reply without waffle. Think of all the lives that have been saved since 1892! I was only thinking may be a month or so ago now how cost effective was back then on NDT. I was never tested! I was diagnosed and given 1 grain NDT. Such a long time ago now but think I was fine till 2-3 years down the line. Symptoms started to reappear so I was given another grain them and continued to be symptom free and very well till my doctor left but I suspect may have been helped along the way. But two huge pluses lost-a treatment that worked and not ever needing to be tested as our body takes up the T3 first.

[Steamruss]

Did you ever receive a response?

[helvella Administrator Thyroid UK in reply to Steamruss]

Yes - and entirely not worth passing on. Thanks for your email. Goodbye.