BTA FINALLY PROVIDED A FORMAL RESPONSE TO NHS ENGLAND CONSULATION

[Pamela0106]

The attached picture is a copy of the BTA’s formal response to the NHS England Consultation “Items which should not routinely be prescribed in primary care: Consultation on guidance for CCGs”. It was sent to the ITT CAMPAIGN in response to their FOI request for a copy of the official response.

The highlight is they say patients on Liothyronine should not have it removed abruptly and it should be provided on basis of Clinical need. It also mentions the NHS reasons for switching due to cost is not acceptable and they should ultimately get their act together and find cheaper alternative sources.

A huge step forward I hope everyone agrees!

Personally think it’s following the onslaught of comments the BTF got in the last week on their Facebook page (thanks again to those who commented after I was blocked incidentally).

Hopefully something the NHS will now take very seriously!

🦋❤️

[ Edited by admin to add these links:

The BTA document itself:

british-thyroid-association...

See also their document for endos:

british-thyroid-association... ]

[Kitti1]

Just fantastic ! Pamela0106

Great that they are basically saying NHS get your house in order, stop wasting taxpayers money and buy from abroad ! And stop putting patients health at the bottom of the list !

[JGBH in reply to Kitti1]

Agree, but a small step in the right direction. Now am wondering whether the powers that be will think we, the T3 revolutionaries, have been placated for a while and just sit on their laurels.... for a very long time without acting on what they have suggested

Must add congratulations to the ITT campain ... good work!

[UrsaP in reply to JGBH]

Im sure if they do all the campaigners on all groups will not let them rest!

[JGBH in reply to UrsaP]

Let’s hope so but won’t believe it until it happens! Fingers crossed 🤞

[Pamela0106]

lorrainecleaver ❤️👌🏼

[lorrainecleaver in reply to Pamela0106]

Fabulous work Pamela and all at ITT! I do love an FOI. Amazing what you can find out that for some reason isn't willingly shared. Definitely something to do with the BTF shame of last week I feel because the BTA chappy at the NICE stakeholder meeting was not the most vociferous defender of Liothyronine in my view.

[Rapunzel]

Well done to all at the ITT campaign 💖

[Nanaedake]

They need to define 'clinical need'.

[Pamela0106 in reply to Nanaedake]

I don’t disagree but ultimately the response they wrote implies it simply means anyone on LT4 still experiencing symptoms should get a T3 trial with endo approval and still be prescribed in primary care thereafter x

[JGBH in reply to Pamela0106]

My GP told me months ago and again recently she could not prescribe T3 and that an NHS endo would not prescribe it either as there’s no evidence that T3 is really working! So to be fair I was not prepared to see an NHS endo, waiting for ages to be told I couldn’t be prescribed T3 and to top it up the endo would probably mess up with my levo dosage and consequently feel even worse! So seeing private endo next week. Have never had a T3 T4 combo treatment and feeling pretty rough! Have been on Levo mono therapy since 1980...

[Pamela0106 in reply to JGBH]

Make sure you show the GP and the NHS Endo the BTA statement next time you see them. They can eat humble pie!

[JGBH in reply to Pamela0106]

I think eating humble pie is beyond them!

[Pamela0106 in reply to JGBH]

I think THEY think eating humble pie is beyond them lol

[UrsaP in reply to Nanaedake]

Nanaedake I think we patients maybe need to define clinical need! They don't seem to be able to get it right! And lets face it we know how we feel.

[Nanaedake in reply to UrsaP]

Well, I hope they give patients a voice in defining clinical need.

Perhaps even if CCG's don't add T3 to their prescribed medicines list, if it's an agreed treatment, doctors will feel less worried about providing care to patients who buy T3 from overseas to treat their thyroid condition.

[marigold22]

Ok, the hypo patients who have proved they need T3 shouldn't have it withdrawn. But I worry about all the newbies coming along. Will GPs be able to prescribe T3?

[Pamela0106 in reply to marigold22]

The BTA response covers new patients too and that they should be granted a trial with Endocrinologist endorsement but to continue to receive in primary care. X

[Rapunzel in reply to marigold22]

the hypo patients who have proved they need T3 shouldn't have it withdrawn.

Aw marigold why should we have to prove that we need T3? Why why why if we feel better isn't that enough?

Don't answer that.

[Shelley1954]

A step in the right direction, well done all.

[Hillwoman]

I'm really impressed by the effective hard work of all those involved with ITT, as well as the efforts of TUK, the Patients Association and other patient groups. The message is getting through to the thyroid establishment, but it remains to be seen whether the old guard will change their ways permanently. Hopefully this statement will at least make NHS England think again.

[Pamela0106 in reply to Hillwoman]

Totally agree. I think without the TUK campaign, ITT one and PA we’d have felt very lonely indeed!

Big thank you to all of them from the bottom of my heart. It’s great they all have our health in mind.

Clutter lynmynott - thank you for all you guys are doing. ❤️❤️❤️ Out of interest is there a link to the TUK formal response too that’s available? I think the combination of it alongside the others will make for a pretty hard argument for NHS to ignore. Xx

[UrsaP in reply to Pamela0106]

Well done to all Campaigner and all supporters!

[UrsaP in reply to Hillwoman]

Hillwoman I'd say from being at both the Face 2 face meetings that the number of people attending at both, being largely 'thyroidies' and probably on the 'Webinars' too, that NHS got the message loud and clear. They did also say that most of the response from the consultation was about liothyronine.

It is not NHS we need to worry about, it is whether the CCG's take note of the recommendations if NHS decide to leave t3 on prescription, because they don't have to abide by it.

[Rapunzel in reply to UrsaP]

It is not NHS we need to worry about, it is whether the CCG's take note of the recommendations if NHS decide to leave t3 on prescription, because they don't have to abide by it.

MHRA have a hand in this surely. If they stopped their nonsense with their requirements for a T3 drug to be approved, some very cheap imports could come in and bust the market, no?

[UrsaP in reply to Rapunzel]

At the NHS Leeds F 2 F I think they said that the reason JH can't buy from abroad is because there are now two other UK licenses. All too contrived methinks.

[Hillwoman in reply to UrsaP]

UrsaP I agree with your point about CCGs, given their budgetary and strategic role. Before this structure was set up, there were grave warnings about giving so much power to a group of fallible generalists. Even so, this is NHS England's consultation.

[UrsaP in reply to Hillwoman]

Yes, but it was NHS Eng who said that no matter what the outcome of the consultation, the CCG's could still do what they wanted. i.e. continue to ban it.

[Hillwoman in reply to UrsaP]

That's really disappointing and seems to be an abdication of responsibility by NHSE to ensure there is uniform prescribing nationally.

[UrsaP in reply to Hillwoman]

Absolutely, Hillwoman very disappointing. They did say this just after saying they were looking to ensure uniform national prescribing. When people started questioning point of the consultation they closed the meeting.

No-one seems to have 'overall authority'. I'd say it is a ploy, along with 'guidelines' so can all blame each other and ignore the bits they want to! But worrying to see -

gponline.com/ccgs-full-cont...

'CCGs could take full control of GP contracts from April'

Does that mean each CCG will be doing what they like, making health even more of a postcode lottery than it is.

[Hillwoman in reply to UrsaP]

God, it just gets worse...

[MikeM46 in reply to UrsaP]

Afraid so! CCEngland have this on their website ... very clearly the direction of travel policy-wise!

Also, they have been trialling CCGs setting up screening panels who will receive GP requests for referral to 2ndary care (Hospitals & Specialists) and will judge whether the referral is justified. Now while GPs can insist on the referral, that would inevitably be a very brave & personally risky move!

[UrsaP in reply to MikeM46]

Basically GP's are turning into robots. Box tickers, not going to need much training, and certainly no need for a brain to analyse anything for themselves (and their patients) No autonomy, no authority, cannot even be allowed to make judgements. That delay whilst a referral is being decided at the CCG, could mean life or death to someone? It is like a competition to see how many different levels can be put in place to stop the patient getting the treatment for as long as possible if not definitively. Maybe scrap the GP's and just have patients go straight to GP panel! Crazy...like another line of hierarchy is needed!!! X by Wales/Scotland and NI! £££ for the boys!

[Hyburn in reply to Hillwoman]

Fallible generalists indeed who don't recognise, far less acknowledge their limitations.

[Raventhorpe]

Just want to say well done! To all the hard working people that have got us this far. The fight will go on till we win you can be sure of that 💪.so keep signing itt petition and let's get this debated in parliament.

[Chippysue]

Excellent! Well done to all, think this is worth laminating! We shall certainly be giving the CCG members of staff we met a copy. I just hope they sack the people in Procurement as they would be in any other industry!

[UrsaP in reply to Chippysue]

Yes Chippysue , it is the CCG's that will now be the stumbling blocks, got to get them to back down, not sure they are going to want too, certainly not before the price comes down and that is looking like it won't be anytime soon!

[Quokka]

Massive thanks to everyone for campaigning!

The Times this week had a comment on Concordia, and the scandal of raising the prices of generic drugs:

‘The investigation by the Times prompted the government to draft legislation aimed at closing the pricing loophole. The law, passed in April, gives the health secretary the power to impose lower prices if it believes taxpayers are being ripped off. The government has not yet used the powers.’

I feel another letter to my MP coming on.

[UrsaP in reply to Quokka]

The bill was enabled in Aug. But DofH is now 'consulting' on the regulations for this bill which are due in Spring 2018, and THEN they will decide if the price hiking was 'warranted'!! If they need regulations to make that decision they are not fit for the job!

Concordia say that the price hiking was due to them being approached by NHS, in 2012, re the manufacture of T4 and T3. This led to them building new plant and something to do with two lots of changes in UK regulations. They had a 5 yr plan (plan for what?) and insist that T3 will come off this new plant.

MY thinking is that new plant for a drug that is being priced out of the market makes no sense.

I suspect that there is other motives at play. I was wondering about the synthetic combination that was in development a few years ago, that got rejected. I wondered if that was still in play and then I saw that the BTF are involved in reviewing a combination pill, so answer would seem to be yes. So is this what the new plant is for?? Were they trying to push T3 off the market in favour of a new med?

Smacks of what happened back in the 1950/60's when T4 was introduced just as T3 was discovered. No doubt investors did not want to lose money on the physiologically inaccurate T4 mono-pill. So diss NDT to deter prescribing and when T3 introduced, portray it as unstable...no wonder GP's prefer T4...brainwashed!

[Quokka in reply to UrsaP]

I think the NHS is more worried about upsetting the drug companies than the patients.

[UrsaP in reply to Quokka]

Without a doubt!

[Hillwoman in reply to UrsaP]

Is this the combo pill the awful Weetman and his pals were thought to be developing at Sheffield Uni? Or have I got that confused with something else?

[Hillwoman in reply to Hillwoman]

Sorry, that's a Q for UrsaP

[UrsaP in reply to Hillwoman]

That is my theory Hillwoman , it is Ross, I think, Ross being Weetman's sidekick. Sheffield Uni anyway. I saw on a thread, can't remember if it was on here or other pages, only saw it yesterday, or Sunday, that BTF are on review panel. I wonder just who is behind this development? What other 'cronies' are involved? All those that have been dissing T3 for the last few decades, denying patients and keeping them ill, whilst trying to get rid of T3? In readiness for them to make huge profit on a combination med, maybe? My cynical mind!

[Hillwoman in reply to UrsaP]

Not cynical, just realistic. As always, follow the money.

[Hillwoman in reply to Hillwoman]

Just remembered - I listened to a R4 programme years ago (Analysis, or File On 4) about a scandal at Sheff Uni over bogus research into a harmful arthritis drug. Weetman's name was mentioned as a co-author (I think) of the subsequent paper, and also as the instigator of the sacking of a whistle-blowing doctor. I can't find the prog on the BBC site - must have been archived - but there might be something online somewhere.

[lorrainecleaver in reply to Hillwoman]

This one Hillwoman? theguardian.com/uk/2005/dec...

[Hillwoman in reply to lorrainecleaver]

This seems familiar - I used to take the Observer - but I think the story I remember had different actors and concerned a different arthritis drug. The programme I listened to must have been broadcast around the turn of the century. Alarming to think that Weetman may have been involved in more than one of these cases.

Thanks for looking this up Lorraine. I'll search through my clogged computer and come back if I find the right details

[lorrainecleaver in reply to Hillwoman]

Ah yes, it led to this story when I was researching Sheffield "In December 2005, Procter & Gamble’s pharmaceutical division was involved in a research dispute for Actonel. British medical doctor Richard Eastell of the University of Sheffield claimed to have full access of Actonel trial data. The Times Higher Education published a public report disproving these allegations and confirming that Procter & Gamble carried out the trial. In 2009, the General Medical Council held a “fitness to practice” hearing. During the hearing, it was established that Eastell was negligent in making misleading claims. However, he was not determined to have made claims that were deliberately dishonest or misleading." drugdangers.com/manufacture... Procter & Gamble sold out to Warner Chilcott who also sponsor Bone Metabolism at Sheffield Uni. What a tangled web...

[Hillwoman in reply to lorrainecleaver]

A tangled web indeed. The link re Actonel is horrific. This really is organised crime, isn't it?

I haven't yet found the info I was looking for, which was mainly in blog form, probably taken down by now. I seem to remember that the first name or surname of a doctor who blew the whistle at Sheff Uni was 'Raj' or 'Ravi'. He ended up working in Australia, the refuge of many honest UK doctors.

[lorrainecleaver in reply to Hillwoman]

I wonder who that is. I keep researching Blumsohn because I am sure he is key to Weetman. bmj.com/content/339/bmj.b5293

[helvella in reply to lorrainecleaver]

Have you noticed:

medschools.ac.uk/our-work/a...

beta.companieshouse.gov.uk/...

?

[Hillwoman in reply to helvella]

My goodness helvella , the man has a finger in every pie.

[lorrainecleaver in reply to helvella]

Oh god we're doomed!

[Hillwoman in reply to lorrainecleaver]

Very interesting link, Lorraine. Thanks!

[UrsaP in reply to Hillwoman]

V interesting!

[Hyburn in reply to UrsaP]

Something doesn't add up. Why build a new plant to produce a drug that no one will be prescribed because you have priced yourself out of the market? That does not make any sense at all.

[helvella in reply to Hyburn]

Why build a new plant when you (i.e. Concordia) don't even manufacture the product? It is manufactured by Custom Pharmaceuticals Ltd. according to current Patient Information Leaflet.

And they are owned (> 75%) by:

Cheremy Capital Llc

2175 N. California Blvd, Suite 400, Walnut Creek, California, Usa, 94596

[UrsaP in reply to Hyburn]

Exactly my point Hyburn and why I think they will be producing a new drug, combination perhaps? hence trying to push T3 off market so there will be more demand for combination pill. (no good if can't convert though!)

[Quokka in reply to UrsaP]

I've just tried to buy T3 over the counter in Austria with a UK private prescription. The pharmacist told me you can't get T3 in Austria any more-just a T3 /T4 combination tablet. It reminded me of your theory!

[UrsaP in reply to Quokka]

This could well be the problem, going so far by introducing the combi pill but still no good if you can't convert!

[MikeM46 in reply to Quokka]

Was that T3 unavailability in Vienna?

[SlowDragon Administrator]

Where is this. Can you post a link

I want to print copies to send to MP, CCG, health watch etc etc

[Pamela0106 in reply to SlowDragon]

There is no link. It’s a document attachment we were sent. Unless of course BTA have since published it online. I can send you the picture images of the document though.

[Pamela0106 in reply to Pamela0106]

Infact I can’t because you can’t sent pics in PM on this forum.

Would need to be sent as original document attachment to an e-mail address or else you can follow me on Twitter and get the pics of the doc from there. My Twitter is Pamela0106

[helvella in reply to SlowDragon]

It is on the BTA website!

british-thyroid-association...

See also their document for endos:

british-thyroid-association...

[janey1234]

Well done everyone who helped in the campaign!!

[AnneEvo]

I'm new to all this. What is/are CCGs and what does ITT stand for? ☺

[Hillwoman in reply to AnneEvo]

CCG = Clinical Commission Group, a sort-of successor to the local Primary Care Trust.

ITT = Improve Thyroid Treatment, a Facebook campaign group trying to stop the proposal to remove prescription of T3 at primary care level from going through.

[AnneEvo in reply to Hillwoman]

Thank you ☺

[Kipsy]

Huge thanks and massive respect to everyone involved in this important fight. It remains to be seen whether I personally will need T3 or not as I’m in the early days of taking T4 but I am so appreciative of all you have done for those who do so desperately need it. Thank you so very much.

[cazza1001]

is there any way of getting a clearer copy of that statement or where to get it ?

thanks - want to print it out for my GP

[helvella in reply to cazza1001]

british-thyroid-association...

[MikeM46 in reply to helvella]

I wish!

[helvella in reply to MikeM46]

It did work when I posted it!

[MikeM46 in reply to helvella]

Lol ... I’m sure it did!

I must stop speculating as to what’s happened with the BTA website!

[Pamela0106]

I’ve added the link to the full document in the original post everyone xx

[Pamela0106 in reply to Pamela0106]

Or not ... admin beat me to it!

[Summer64]

I can't get the link to the site to work. It just says "page cannot be displayed". I've tried the BTA site but didn't find it.

[Hidden in reply to Summer64]

Summer64 the BTA website appears to be down, I was trying earlier.

[Summer64 in reply to Hidden]

I could get on the site but couldn't find this response to the consultation and I can't read the one posted here, it's not big enough.

[Pamela0106 in reply to Summer64]

The BTA have removed the link for some reason. Hasn’t been working for about 2 weeks now. Not sure why. Very suspicious! Glad I have the screenshots and pdf doc saved!

[Summer64 in reply to Pamela0106]

It is odd. Would you be able to pm me those. I don't have a clue how you attach documents on here but there must be a way

[Pamela0106 in reply to Summer64]

I can’t send files or attachments on here unfortunately. pM me your e-mail address if you are comfortable to do that and I can send it to you via e-mail x

[MikeM46 in reply to Pamela0106]

Ooohh ... have you got the clinical version of their Dec 2016 statement advising against T3 de-prescription?

[MikeM46]

So very frustrating (& not a little concerning) that the BTA website has disappeared for over 2 weeks or so now. It would be so helpful if someone has kept copies that could be posted here, esp. their response to the NHS consultation & the Dec 2016 statement (clinical version) that effectively strongly advises against de-prescription of T3 from those patients faring well with its use & the possibility of unintended and costly consequences.