I had been doing a bit of research just before UrsaP posted this and intended to reply shortly after. But due to my recent bad insomnia Ive been struggling. Anyhows after going to bed at half 5 last night I emailed Ursap what I was going to put as my reply to this
This is hopefully some of my reply
I do feel a little like Rapunzel that the letter writing is not enough. Its so easy for them to ignore. So is little bits in the media, whether it be on the one show, this morning or even an hour special done by Michael Mossely.
Part of me feels that the health service is rapidly moving away from what it was initially set up to be, ie: free health care for all.
I know you know this, but because of the massive advancements in medicine and the growing and aging population I think it is unreal to expect the health service to continue under the same brief .Particularly if the conservatives get in again. I do think this is part why they are so reluctant to include t3 in treatment going forward, particularly at the price it is.
After saying that I think the best way to concentrate our efforts is trying to change their policy regarding the exclusion of t3 from treatment. There really is good enough evidence out there. But it would probably need more to convince them. I do think it is worth continuing with sending out Lucys letter to MPs etc. But to be honest I think we are pissing in the wind a bit going in that direction.
I just feel it needs to be bigger. Perhaps a petition would be a good place to start. I think it needs to be 100,000 signitures or more to get any recognition from the government. I was hoping to do a fundraising / awareness raising stand on World Thyroid Day this Thursday, but with the way Ive been health wise Ive felt I just couldn't commit to it.
But as you know I do feel there are thousands upon thousands out there believing their docs that its not their thyroid that they have a whole range of other medical problems that the doc can through endless medications at. Making the drug companies a whole lot more money than to just treating us properly.
The other day when I said Id be back soon Id been looking into NICE and RCOP. As these are the people we need to convince. I didn't get far with the RCOP website. But did find some interesting stuff on NICEs website that may be helpful.
As you probably know NICE was created in 1999. Since then various agencies and bodies have been amalgamated into NICE; ( Cant believe I just spelt amalgamated right with out looking it up ! Wowzers ! )
Key point no1 - all NICE guidelines regarding the treatment of hypothyroidism, from what I have read are 'inherited'. I cant find what agency they effectively replaced, but it looks like they have never actually done a formal study / review into the treatment of hypo. An achillies heal perhaps ? ?
The next paragraph is virtually word for word from their website
Key point 2 - in 2002 they created the Patient Involvement Unit, which later became the Public Involvement Programme PIP. It says - get involved as a national organisation. National patient or voluntary organisations can register as stakeholders for individual topics. this means we can help set the questions we are looking at and comment on the research evidence and draft recommendations.
They may also be invited to nominate experts to attend meetings or identify people to join working groups.
How to get involved - PIN - Patients Involved with NICE - is an independent group of patient organisations aiming to ensure that NICE decision making is centred around the patient, their family and carers.
Email - PIP@nice.org.uk
PIN - Laura Weir - firstname.lastname@example.org
Phone 0845 003 7788 to ask about PIP
Is this our window perhaps ?
I'll double check the contact details, Ive not been 100% lately, but that's what Ive got in my notes.
After saying all that one of the agencies first mission statements in 1999 was to - create consistant guidelines and end rationing of treatment by postcodes across the UK. They've had 18 years to do that and how far have they got ? ? ?
What are these people paid for ?
Although I do think this is worth a shot. Get it at the core.
I do realise yous - Shaws Helvella Lyn Louise and all the rest of yous have been there done that. Its just ground hog day, but ground hog day ends ! So perhaps there is hope ?