T3 - The fight goes on!!

[UrsaP]

This is a response to a a post in another group - with permission to share -

"I left a mesage with my GP this afternoon to call me regarding the letter of clinical need. He said he wasn't sure he would be able to provide it now as he had had a meeting with someone from the CCG this afternoon. They advised that new guidance was being issued next week to confirm the black listing of T3 as there was insufficient evidence that T3 treatment was more effective than T4 only (that's a new one huh?). They also said from that point going forward it can only be prescribed in secondary care under the continued guidance of an NHS consultant."

I wonder is the new guidance going to be Nationwide??

I shared this on the ITT page and this post links to it.

"I strongly suspect that the news that’s filtering in about T3 being blacklisted is a result of the PAC document we received this week. PAC is part of prescQIPP who initiated the deprescribing of T3 back in 2015 and is the reason it is now ‘blacklisted’ ‘double red tagged’ ‘restricted’ or whatever you want to call it.

Their remit for the past three years has been to get this drug off the the formulary and away from patients for no other reason that the cost of it. If Concordia hadn’t have abused their position in the market I doubt we’d be having this issue.

Our FOI for the audit trial shows clearly the original prescQUIPP document landed on the desk of our CCG and was rubber stamped without discussion. It was simply a ‘oh look, a document from prescQIPP that shows we can a save a ton of money, along with evidence it doesn’t work (!) lets say yes’ and here we all are three years later still fighting this horrible document, and they’ve now seen fit to issue another one.

Hypothyroidism is only one of ten conditions that are eligible for lifelong free prescriptions. Only ten, let that sink in for a moment. That’s why we’re such a problem to them, that and the fact their lack of understanding, education, general stupidity prevents them from from actually being able to diagnose and treat Thyroid patients.

In the PAC doc it states:

“Needs of the community,

Current high cost of treatment with liothyronine associated with a small number of patients represents a financial risk to the whole healthcare economy and will result in cost pressure to other treatment areas.”

So they’re willing to sacrifice us, thyroid patients, for the sake of the healthcare economy?!

Our targets for the campaign should be to challenge PAC and prescQIPP on this document (I’ll post it in the files section, with our rebuttal for information) the trouble here is if I remember correctly prescQIPP refused to answer FOI requests, came up with some excuse why they don’t have to respond to FOI’s. How can that be right?

Our CCG are meeting this afternoon to discuss the PAC document, I suspect other CCGs will be doing the same. I’ll try and find out the outcome and post it as soon as I find out.

[amasufindme]

Thank you Ursula , this is truly disturbing - gross negligence in duty of care - we need just one test case to set the precedence to stop this medical arrogance ... please keep us informed!

[UrsaP in reply to amasufindme]

Extremely disturbing as we are now worse off than this time last year. We now have the Consultation report pushing all issue into secondary care - which is not sustainable and, as many know, will not be entertained in secondary care.

In my view, a deliberate act to deflect any negative reactive grief away from the GP - who is 'just not allowed' to issue - to a 'department', in a hospital, where it is unlikely anyone will see the same Dr twice - so no-one can be held responsible and accountable.

We all need to start insisting on them putting their justifications for refusal to treat, into writing. We need to be well informed enough to fight for what we need to start with. If they continue to be refused...surely someone somewhere will listen and help us take legal action.

It seems the lack of evidence of benefit is still a main reason for denying T3. Yet, where is the unequivocal evidence that L-T4 is beneficial to all. We know that does not exist. So ask them to produce it. Where is the evidence that the 'vast majority' or 'overwhelming majority' do well on L-T4. Records not kept so how do they know? Sweeping statements made by people who have put themselves in positions beyond question? Science is always questionable.

When they quote 'studies' have a few of your own to quote back. Ask which of the studies they are relying on have taken into consideration the inability of some to convert adequately. Who was the cohort, what was used to establish levels of hypothyroidism or Euthyroid? The THS? ....What were doses used in the studies, were they initiating dose or optimal? Was the trials of long enough duration to reach euthyroid state on any medication? - 16:1 or 3-4:1? When was the study done, does it take into consideration the studies showing need of T3. There are so many questions that can be asked. And whilst it may not be easy - it is our own lives we are dealing with the effort has to be worth it?

We are now being treated on the back of questionable and inadequate 'trials' and 'articles' as well ineffective blood testing.

I would suggest we always try to have a 'witness' preferable someone the Dr does not know.

Wouldn't it be wonderful if we all had friends who were solicitors who could attend appointments with us! Then things would change!

[amasufindme in reply to UrsaP]

Well said Ursula! Advocacy has certainly helped me to be taken seriously as well as becoming informed of my rights and keeping the HPs in check.

I do often wonder whether it is useful to record HP appointments.

As a patient it seems we need to project manage not only our own pursuit of health and quality of life, but the actions/inactions of the HPs and also all the creatures that feed into the NHS!

[humanbean]

“Needs of the community,

Current high cost of treatment with liothyronine associated with a small number of patients represents a financial risk to the whole healthcare economy and will result in cost pressure to other treatment areas.”

It's easier and cheaper to blame and punish patients than blame and punish Concordia.

[UrsaP]

Horrendous isn't it! I think it is the NHS who are to blame they have allowed these agreements to facilitate the current situation. Dreadfully poor management.