I thought I would let you know what has been happening at Thyroid UK and where we are in the projects in our Strategic Plan (a plan of work that charities have to adhere to).
This has taken longer than we expected partly because I have had to take a lot of time off recently due to having two operations and recuperation from them. I still worked throughout most of my recuperation although not full time. However, I am now back at work full time and getting on with the job!
New Website
I have been working hard on writing new articles for our website and reviewing our current articles. This takes time because once they are written (by myself or our copywriter) they need to be proofread, edited, proofread again and then formatted to our brand.
T3 Campaign
I have been collating people’s stories, responses from MP’s, CCG protocols, NHS hospital trust protocols etc. and once I have analysed all of these I will be writing a report and contacting Jeremy Hunt and NHS England with a view to trying to get a meeting.
Other work
Thyroid UK works a lot behind the scenes to help thyroid patients. We are a small team and are here for people who have all kinds of issues i.e. newly diagnosed patients; patients who need a special order levothyroxine due to intolerances, people with subclinical hypothyroidism, people who need T3 or NDT, people with hyperthyroidism and people with related conditions such as B12 deficiency, Vitamin D deficiency etc. etc.
My mornings are taken up with helping people who send me queries via email, private messages on HU, Facebook and Twitter. This leaves me only a few hours per day for other activities such as discussions with trustees, the work a charity has to do to adhere to the rules and regulations of a charity, discussions with our advisers, fundraising so we can keep going, our member magazine, our e-news, keeping up with current research and articles etc. etc.
I hope that you can see that we are not lacking in our work to help thyroid patients and that you will support us so that we can change things.
Written by
lynmynott
Partner
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Glad to hear you are on the mend. And thank you for all the hard work and effort you put in here.
Lyn great to see an update and hear you are well. Wondering what TUKs involvement in the NICE review is? It’s one of the biggest opportunities to shape thyroid patient treatment, probably for a decade. I hope TUK has made the committee to represent patient views. If not what is your engagement approach on the scope and guidelines? Thank you!
Thyroid UK is a stakeholder and we were involved in the draft scope of the guidelines and will be involved in the draft guideline itself. I applied to become lay member of the committee but wasn't chosen, I'm afraid.
NICE have a very strict protocol of engagement but I notice that one of the committee members is a doctor that I know is very much for the use of T3 and so I'm hoping this doctor will have some good input.
Take care of yourself first and foremost. Thanks for the update. 💐
Thanks for everything you do Lyn, and to all the mods on here. Without this forum, I'd be dead as a dodo. Speaking of death, I have an inkling one of the Lay persons on the NICE guideilines is a doula for the dying! How encouraging. The other is a BTF Trustee. We've been stitched up good an proper by NICE, the pharma funded mouthpiece.
Thank you Lyn. I am amazed you manage to fit so much in! I agree with everyone else who says how much Thyroid UK has helped them and would encourage everyone to become a member - it really is something worth supporting.
Thanks for all that you do Lyn and wishing you a speedy and full recovery. This forum and TUK has helped me understand my illness and how I can best look after myself.
The only medic who helped me during my thyroid journey was the GP who diagnosed me when TSH was 5.8. Unfortunately he retired and since then my experiences have not been good with 3 different practices!
Thank you for all you do hope you have a speedy recovery don't know what i would have done with out this forum and all the lovely people take care of yourself xx
Hi Lyn. Wishing you a speedy recovery. The guidelines need changing. They do not serve us with thyroid disease well. Can we have a campaign? I am a new member and still very sick with hypothyroidism following total thyroidectomy because of the guidelines and doctor ignoring the new research showing a low tsh equals optimal treatment and euthyroidism. Can we do a crowd fundraising to challenge the guidelines properly so that we can all get the medication we need to make us well. Thank ou
We agree the guidelines need changing and we are working on trying to do this - the Thyroid UK #T3 Campaign - as are other thyroid groups. I'm not sure a crowdfunding campaign will help. Do you mean to pay for a Judicial Review?
Our trustees have discussed doing this in the past but it will all come down to the actual research that is available. They feel we would lose the case because there's not enough research to show how giving patients T3 will help them.
Our advisers have been doing some excellent research on why it would help them but this needs to be replicated in good quality studies on patients going through the process now. If we go for Judicial Review now, we fear we would lose and then a precedent will be set that would be almost impossible to change.
We do need money for research and this is something we are looking into.
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