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.

Thursday, 7 September 2017

Future meetings

You can find out about our upcoming meetings on the group's website here.

All welcome.

Wednesday, 26 April 2017

ch ch ch change change

Ah dear friends, today there is some news to impart.

We have a new website for our thyroid patients' peer support group in London - please share far and wide with anyone you know who may wish to come to one of our upcoming meetings - or indeed may like to join us on a lovely seaside walk we are planning in East Kent in the summer. Full details are on the site. The next meeting is 13th May 2017.

Here's the link:

With thanks to the lovely folk at I Heart Guts for allowing me to share the above illustration of one of their cuddly plush thyroid toys - you can buy one of these cute little thyroids directly from their website - they make a great gift for anyone with thyroid issues. 

Our group was established in 2010 and we know it is a lifeline for our members, certainly it is for me. We are excited about our next meeting which will take place on May 13 at Crown Court Church in Covent Garden. We really value the chance to come together and support each other and hear each other's stories. 13 May will also be a chance to plan ahead as we will be discussing how we work together as a Team, what topics to cover in future meetings and what speakers we would like to book for our sessions from July onwards.

There is also another thyroid related event taking place in London on the same day. The British Thyroid Foundation are holding a Children's Conference at the Abbey Centre in Westminster. Anyone who has a child with a thyroid condition may find this event extremely helpful. Find out more on the BTF site - I believe it is free but places must be booked in advance with a refundable deposit payable.  While I'm mentioning that - my friend's daughter, Danielle, was born with congenital hypothyroidism and shared her story on my blog some time back, you may like to read it here, it's very reassuring for anyone concerned about childhood thyroid issues, she is now a healthy young mother herself.

Our group is currently independent, since BTF have brought out some new guidelines for group coordinators which we haven't wanted to sign up to - they required one of us to agree to have our phone number published on their website and in their newsletter and since regular blog readers may recall this was something I agreed to doing some time back and ended up quite overwhelmed with callers from all over London and indeed further afield, none of us was up for doing that.  We are hoping that the charity may reconsider their position in time but for now we will just continue meeting regularly, doing our best to support each other and sharing reliable information (which we will continue to source from BTF) under the new group name, Thyroid Friends.

We are super grateful to all the lovely folks who have encouraged and supported us thus far, including: Thyroid MK,  Voluntary Action Camden, I Heart Guts and World Health Innovation Summit.

Thank you for sharing this news with any friends, family or professionals who may be interested. We look forward to welcoming regular members and newcomers to the May meeting.

And now I'm going to skip off to my jazz singing group followed by a blissful grounding meditation in a wonderful community garden just up the road from me before I do some work this afternoon. Counting all my blessings! Sayonara for now.

With HOPE and LOVE.