Wednesday, 22 November 2017

The Thyroid Trust

Hmmm tis time for another from me. Apologies for somewhat neglecting this little blog recently but I have been busy busy as will become apparent.   I thought it was important to update you my dear blog readers so here goes:

Our group of thyroid patients in London has been offered funding to set up a new charity for thyroid patients. We are delighted and very grateful to our benefactor for the support since our meetings  are so important to us and we can see additional opportunities to do things for people affected by thyroid disorders which we are keen to be able to pursue.

Setting up a new charity is quite a lot of work however. We probably under estimated just how much when we started. But we're getting there!  The last few months have been intense.

We now have a name - The Thyroid Trust - a logo which we all really like - and a new website 

And we are on Facebook and Twitter @thyroidtrust

We have been putting together our constitution, board of trustees, policies and registries etc. Mountains of paperwork but very exciting. Good governance is vital. 

We have registered to be stakeholders in the development of new NICE guidelines for managing thyroid disease and have been participating in that process.  Attending the initial scoping meeting and responding to the draft scope document, so far.

I also sent a personal response, about liothyronine, to the NHS consultation on items which should not be routinely prescribed in primary care and I know several of our other members did too, though we didn't manage to compile an organisational response as we  had too many other things going on and it didn't feel necessary as we are at such an early stage in our development. I was thrilled to see how many others connected with this process and particularly delighted with the Patients Association response which you can read here.

Our number one priority is keeping the London meetings going and getting good speakers, since so many people rely on being able to come to these sessions and we feel they are so important.

Our next meeting is this Saturday, details all on the website. If you're in the area, please feel free to come along. If you can't attend perhaps you'd like to spread the word. That would be amazing.

Yesterday the news broke about Concordia and liothyronine and was on all the main media outlets. Read here on the BBC. I am so grateful to all who campaigned determinedly to get this story in to the public domain.  I wasn't able to do much at all except send my own response in to the NHS consultation and speak to a few people about it. But here's the proof that patients have a voice and will not be ignored.  Over 24,000 people signed a petition on this issue and that is incredible. a testament to how the internet empowers us by providing information, connections and a platform to shout loudly about things that matter. I feel optimistic about the future.

Please keep in touch via Thyroid Trust, I'm not sure when I'll next blog on here but I will keep this blog going with posts from time to time of course.

Hope and love to all.

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