Latest reply from CMO office to clarify public involvement in T3 consultations.

[UrsaP]

Hi Ursula,

I have asked NHS England to clarify their position and received the following reply:-

“Thank you for your email regarding NHS England’s plans to review the provision of prescription based medicines that are considered to be of low clinical value or that are widely available over the counter.

In 2015, the cost for all prescriptions dispensed in primary care, not including any dispensing costs or fees, was £9.27 billion, a 4.7% increase on the previous year. Due to the increasing cost, from April 2017, NHS England will lead a review of medicines which can be considered as being of low clinical value and develop new guidance for Clinical Commissioning Groups (CCGs)

The purpose of this review is to develop guidance at a national level that will support CCGs locally to manage their resources and reduce the differing approaches and regional variation in prescribing across England. It will be based on the latest clinical evidence, including that from the National Institute of Health and Care Excellence (NICE).

The national guidance will be developed in partnership with CCGs and clinicians, and will seek to put in place practices that are clinically appropriate and that secure best value from NHS resources.

Please be assured that careful consideration will be given to ensure that particular groups of people are not disproportionately affected, and that principles of best practice on clinical prescribing are followed.

NHS England will publish a consultation on the draft guidance on low value prescription items in the next few months. We welcome the views of the public, patients, clinicians, commissioners and providers through this consultation process to inform the final guidance. For more information, you can check the NHS England’s website at:

england.nhs.uk/2017/03/guid...

I would urge you not to listen to unsubstantiated speculation regarding this consultation, regardless of the source, and instead wait until official updates are published by NHS England.

Kind regards,

Lee

DH.JPG

Lee Williams

MPD Parliamentary & Public Accountability

Room G104 Wellington House

133 – 155 Waterloo Road

London SE1 8UG

E-mail:[e-mail] T: 020 7210 5264

I have responded regarding the comment 'will be based on the latest clinical evidence,' Explaining that 'Evidence' is not logged/recorded. That GP's have no interest in what good T3 has nor do the acknowledge the adverse affects of T4. And how CCG's are going against the guidelines and withdrawing T3 from those using and benefiting, suggesting this be to allow then to then say that they have no-one being issued T3 and benefiting as they won't will they, if they have had it taken away - against the guidelines. And who is responsible for 'guidelines? No doubt the very 'word' means none of the CCG need to comply! And basically can do what they want.... NO ONE is accountable. I have asked if they will be accountable for people's developing illness and reliance on benefits etc... Not quite in those words but... Have CC'd MP and CMO herself, asking for their personal responses. As if.... Keep the dialogue open.

Oh and did say something along the lines that as I had little faith in the systems and departments concerned, considering they are quite happy to spout 'non-truths' about 'no evidence' that I will keep checking any comments I hear, speculative or otherwise.

[ajs100uk]

Well done for writing and showing the reply here.

I keep hearing that planned responses to the T3 issue are in the pipeline, and people want to do something about it etc. What worries me is that, as far as I know, I have not had an opportunity to put my name to a response or heard of any firm response to the plans that have been given, and yet the draft guidelines will be out in a couple of months!? Is this when opposing action will be taken?

I cannot believe draft guidance goes out before a consultation, it is like their mind has already been made up, and the 'consultation' is just for a good show.

I want to DO something!

I am not on T3 yet but may well be, as could many thyroid patients. I just want to help keep this available for all that need it and get the cost brought down by the greedy manufacturers. The whole situation is unacceptable!

[UrsaP in reply to ajs100uk]

The problem ajs100uk is that if they 'ban' it, and you subsequently need it, you are not going to get it.

I worry too, that the Consultation's will be geared to go against us - all this talk of 'evidence' and 'low level' smack of a foregone conclusion. I hope I'm wrong. As I said one worry I have, is that these CCG's already withdrawing T3, against the current 'guidelines' will be in a position to say they have no evidence of benefit, having supposedly got all patients off it...without any care for the outcome for the patient. Of course the patient may present all right, but that is likely to be because they are then self sourcing and medicating, and the GP's will either not know this, convenient for them, or they will ignore that knowledge and choose, as they probably already do, in most case, to not bother noting it.

The odds are stacked against us, we know that. But we know that their 'evidence' is based on hidden and ignored facts, lies and non-truths. We, those of us on, and benefiting from T3, whether prescribed or self medicating, are living proof of it's benefit. (Hence they want us off it)

We have to stand up and fight for our right to the medication we need. And better health.

[ajs100uk in reply to UrsaP]

I agree with everything you say and I say again there should have been much more shouting out about this issue (and the reliance on TSH for diagnosis) already! I would get behind anything/anyone that took this on.

For example, if there was a call to specifically donate to a cause to fight these issues, I would donate. The thing is I have seen NOTHING from anyone asking for this.

I fear it is going to be too little too late.

Maybe there are plans regarding this in the pipeline somewhere but why keep them 'secret' if that is the case? Anyone fighting this needs a whole bunch of people supporting them, I would be happy to, but as far as I can see, sadly, there is nothing to support and people will end up suffering.

[Parbrook]

The UK guidelines are understood to be based on 'expert opinion'.

They do not seem to be supported by 'clinical evidence', but seem to be entirely based on the false belief that TSH is the best indicator for diagnosis and treatment.

[Zephyrbear in reply to Parbrook]

The ONLY 'expert' opinion they should be listening to is that from those of us at the sharp end actually taking it and having the benefit (or not, as the case may be...) of T3! What they should also be doing is sourcing it from far cheaper suppliers as we are doing! That way everybody who needs it could benefit as well as the NHS itself by being able to wipe the £millions they are currently paying out to just ONE utterly unscrupulous supplier who is taking the p*ss! 😡

[UrsaP in reply to Zephyrbear]

IN total agreement Zephyrbear We need to find statistics of who is benefiting. Whether prescribed or self sourcing. As you say WE are the evidence.