Meeting with NHS England and NHS Clinical Commissioning

[lynmynott]

Thyroid UK and ITT travelled to London yesterday to meet with NHS England and NHS Clinical Commissioning to voice our concerns about T3.

The meeting was attended by Julie Woods, CEO of Clinical Commissioning and Alex Williams, Deputy Director, Medicines Policy at NHS England.

We put forward concerns including the fact that the NHS England decision was not clear and that many CCGs are not following the NHS England consultation decision which has caused many patients to have their T3 withdrawn.

Alex Williams stated that this was not the intention of NHS England and that they thought the wording was clear but now realise that it needs clarification.

The clinical working group is holding a meeting on 6 June and it was agreed that Thyroid UK and ITT would provide some input to this meeting with the intention of giving clearer guidelines to CCGs.

We will keep you informed as to progress.

[loueldhen]

I could say which clinical working group! We still haven't heard the outcome of the Regional Medicines Optimisation Committee South meetings in January and May which had liothyronine on the agenda. I waited patiently for them to publish the minutes of the January meeting in May but only agendas have appeared.

[Musicmonkey in reply to loueldhen]

Yes, you do begin to wonder what's going on...

[Hennerton]

Thank you, Lyn for all that you are doing and this sounds fairly hopeful, do you think, especially if you will be able to have some input into the wording of the revised document?

[Marz]

Any mention of the pricing of T3 then ? You would be justified in mentioning it surely ? As that is the reason given to so many reporting in on this Forum - that it is all down to cost !

Do you really trust these people and why haven't they done something before ?

[lynmynott Partner Thyroid UK in reply to Marz]

Oh yes! They are going to look into that too!

They were very concerned about what is happening and my view is that they will really try to help us.

[Marz in reply to lynmynott]

Great news - thank you

[blogsy2 in reply to lynmynott]

Thank you so much Lynn

[UrsaP in reply to lynmynott]

I hope you are right Lyn, ITT attendees seem to think so too. I personally have a few reservations, having had conversations, with Julie Wood, at both the London and Leeds F2F last year. I'd be more than happy to be proved wrong. Time will tell.

Hopefully they have realised the mess this consultation has created. I believe that the recommendations, following the enablement of the Cost bill in Aug last year, are due to be implemented in the Summer now. The DoH did say the recommendations would be due in Spring, what they are who knows! This all smacks of stalling to me, I wonder why? Me being cynical.

[Njm17]

Thank you Lynn for everything you are doing.

[crimple]

Lyn, I do sincerely hope your optimism is justified. I posted on here earlier about Vince Cables "debate" in the house of Commons last night. No one there to debate with him. He was very good but it was the response from the health Minister I wasn't happy about.

[lynmynott Partner Thyroid UK in reply to crimple]

I agree, I wasn't happy about the second half of the Minister's response either.

[TaraJR in reply to crimple]

I agree it was very disappointing that there were SO few MPs in there. But hopefully the ones we contacted will read it on Hansard. Apparently in an adjournment debate, there is no right of reply for the MP asking the question. Odd but that's the rule.

[crimple in reply to TaraJR]

Another new piece of info for me, thanks. I will now contact my MP to make sure he watches/ reads all about it!

[Musicmonkey]

Well done to Thyroid UK and ITT Campaign for all your efforts.