Following mandyjane wonderful post a couple of days ago Link here -
Ive decided to post this. Many great & good people said many great & good things on that thread, as we have before. But I'd really like this thread to be about what action we are going to take. Who can do what and further ideas of the way WE ARE GOING TO MOVE THIS FORWARD
This is the post I put in response to Mandyjane's thread.
Hi mandyjane Thank you for starting this thread. We definitely need to take action.
If feel we need a multi pronged attack.
From below - as you say educating doctors & endos, even practise nurses. All of us need to be giving our doctors concise well documented and referenced evidence of what we already know. Ive just posted a bit earlier in this thread of my experience this morning at my new GP's. juniperex did a wonderful post a couple of months ago - Grassroots Campaign Anyone. We need to get this going. Doctors & specialist obviously have a major input into CCG
From Above - A letter to all MPS, I agree politicians don't have as much power as they'd like to think, but the greater the awareness, the more groups we can get on side the better.
From Above - set up a group for NICE. From what Ive read NICE along with RCP are a major influencing factor for the care us thyriodies receive. they have a thing called the Public Involvement Programme - PIP I quote - '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'
From Above - pester the living daylights out of the RCP. Not sure how we are going to infiltrate them yet ? ?
From Above - I have the email address of the afore mentioned Dr Anthony Toft. Dr Toft as in the Pulse article we are recommended to take to our GPS. Dr Toft was President of the British Thyroid Association from 1996 to 2009. And president of the Royal College of Physicians Edinburgh. Unfortunately it is more recently that he U-turned on his opinion of T3. He now is very in favour of the use of it.
Ive not been great health-wise recently, but am starting to get better. I got his email address and have been meaning to email him for a while. To ask his advice on what he thinks we should do, how we can change things. I'll get on with that this weekend.
From the Side - Public Opinion : getting in touch with Prince Harry & William ( their recent mental health campaign, thyroid can cause a mental health issue ) Celebrities, featuring it on TV ect ect
From the Side - a possible march on Westminster / Royal College of Physicians / Downing St.
From the side - Petitions we need a major petition to be signed by hundreds of thousands of people on somewhere like Change.com. We need a co-ordinated social media campaign across twitter & Facebook ect to promote the signing of this petition. Then for it to be handed to Downing St AND the Royal College of Physicians
I believe we need to do this in a concurrent manner. Pushing hard from all sides all angles all at the same time if we have a chance of changing anything
UP THE REVOLUTION !.
I hope I'm not speaking out of turn with this bit - But we did make a small but significant step forward after the last 'ground swell' ( loving that Mandyjane ) of support for a campaign. The wonderful Kitten1978 wrote a brilliant letter directed at MPs. I actually gave a copy to my new GP this morning. So we have a fantastic starting point. We have the letter ready to go to all MPs. We just need to co-ordinate sending it out. ie hopefully enough members in enough districts can print off a copy and send it to their MP, perhaps with a little personal back ground. EVERY MP must receive one.
We must also co-ordinate our efforts with the T3 facebook group and TPAUK and any other groups any one knows of. We must join forces to be heard as loud as possible and from as many angles as possible - MPs, letter writing, celebrity support, TV features, petitions, marches and every GP in the flippin land to get a copy of our soon to be collated hand book on thyroid treatment.
This has to change, for our own health, for the health of 1000's of hypos unaware of their poor treatment and for all future thyroid patients. Big Pharma are not going to keep us ill any longer !