l-r Chery and Juila from British Thyroid Foundation, Professor Chatterjee from British Thyroid Association, Tracey from ITT and Norfolk Support Group, Jim from Midlands Thyroid Support Group, Judith from The Thyroid Trust and Thyroid Cancer Alliance, Tara from ITT and Norfolk Support Group, Lorraine from The Thyroid Trust, Amanda from TPA, Lyn from Thyroid UK and Kath from Midlands Thyroid Support Group
Exciting news about a new innovative partnership we are helping develop that we believe may be game changing for thyroid patients in the UK.
We are now embarking on a project working with other thyroid organisations including the specialists’ professional body, BTA, following our multi stakeholder follow up meeting to the recent HoL debate, yesterday, kindly organised by Lord Hunt of Kings Heath.
Yesterday's big outcome (and for us it is momentous): we will be working with partner stakeholders to co-produce an evidence document we believe will robustly challenge non guidelines-compliant care for hypothyroidism in the UK
What does that mean? Hopefully that government will take decisive action to address local CCG guidelines and policies which we have found are counter to NHS principles and national guidance (national guidance has been misinterpreted and patients are suffering as a result).
By working in partnership we recognise we can all learn from each other and increase our capacity to make an impact.
We have already started the process of informal partnership working with 4 other organisations. 3 significant new partners agreed to work with that group today, including the BTA and we have clear short term goal and longer term ambitions.
Short term goal – to jointly produce a report that will evidence how locally produced prescribing guidelines, for the thyroid drug liothyronine, are counter to NHS principles and national guidance and causing harm to thyroid patients (and several of us would also like us to make the point this will be costing the NHS money since it is making people with chronic conditions more unwell … we need to discuss this further though, as it may be too complex a point to try and get over in a hard hitting report).
Ambitions: to end #andmeT3 patients' current difficulties. (#andmet3 is a hashtag coined by our friends at Improving Thyroid Treatment campaign and has been taking off on social media as patients affected by the current access issues to this medicine have been using it to highlight their stories and the bigger picture - we really like it and have also been using it to help amplify this story)
Longer term to improve GP and public understanding of thyroid disorders and generally improve health and wellbeing outcomes for thyroid patients.
We are looking forward to following up with our new project partners and formalising scope, plans, etc.
Watch this space. Our partners for this project, so far are: British Thyroid Association, British Thyroid Foundation, Improving Thyroid Treatment, Midlands Thyroid Group, Norfolk Thyroid Group, Thyroid Patient Advocacy and Thyroid UK. We are enjoying the process of getting to know everyone and are grateful for everyone's collaboration and input so far.
We are also grateful for the incredible support of everyone who has advised and supported us to get this far. Particularly: Lord Borwick, Lord Hunt, Vince Cable and all the peers and MPs who spoke up for thyroid patients in the debates, Dr Anthony Toft and our friends at: The Patients Association, National Voices, World Health Innovation Summit, NHS England, AMRC, Camden Volunteer Action, Cancer Research UK, our incredible Trustees, Judith Taylor, Mr Fausto Palazzo, Karen George, Theresa Baker and Douglas Pescott Frost, our amazing volunteer Team, every one of our supporters and everyone who has kindly shared information with us to help us develop our understanding and put together a powerful evidence base for this project.
Read more about the liothyronine story here.
If you'd like to tell us your thyroid story you can submit your story here.
Our May Patients Voices event is now just over two weeks away and we are very excited about it! This meeting is for anyone affected by a thyroid disorder. Friends, family and interested professionals are welcome too.
Do you keep notes about your thyroid condition and share them with your doctor? Do you keep a note of your blood test results if you are given them? Do you track specific symptoms? Do you note how much you exercise, your stress levels or what you eat? Do you make a note when you take your medication? Do you have a system for keeping track of how things may change over time?
How useful have you found any notes or data you keep in helping you to manage your condition with your doctor's support? What things are important to YOU to keep a note of and what has proven to be most helpful for you and / or your doctor. What tips would you share with other thyroid patients and what questions do you have that you would like to ask your peers.
This has been a subject we have touched on in previous meetings and often comes up so we are delighted to devote our May event to this conversation.
We will be joined for this meeting by guest, Mike Linskey, who is working to develop a new app for thyroid patients which he hopes will help with just this challenge! Mike is a software engineer who specialises in user experience and who's wife has a thyroid condition. His project is at an early stage and he is keen to hear from real patients to find out what we would like from such an app to help him make it as useful as possible - if indeed it is something we would be interested in using.
The Thyroid Trust does not endorse Mike's app, which is still at an early stage of development and which we are assured will not capture any patient data, but we are excited to be part of the conversation helping him work out what features thyroid patients would find most useful and also sharing amongst ourselves what systems individuals may already use and find helpful.
Mike's presentation will last around ten minutes and the rest of the time will be an opportunity for peer support, group discussion and networking.
Refreshments will be provided: tea, coffee, herbal tea, biscuits and fruit.
There are limited places for this event so do book in advance if you are planning to attend.
Please get in touch if you would like to help spread the word by putting up some posters in your local area for this event. Thank you!
You can download a poster here if you like - please let us know if you do - and where you put it up - it's always great to hear that a supermarket, health centre, community centre or local library noticeboard has let someone new know about our meetings and caused them to come along! Not everyone is online and those who aren't will be particularly grateful for any offline promotion that helps them find out about the peer support available to them, if they are struggling with a thyroid condition.
We are also researching alternative venues for our events from September onwards as the church in Covent Garden unfortunately is not fully accessible for those with mobility issues. If you have any suggestions of somewhere that could be good, please let us know.
Our biggest best and smiles to you all.
Dear friends. This is our first blog post! Thanks for reading.....
We hope you're well and wanted to remind you of our March event details so you can book if you are intending to come, if you haven't already - AND - to share details of two very exciting speakers we have now confirmed for later in the year.
24 March - Sanjana Balu from Sense About Science will give a talk about Research Conversations
22 September - Mr Fausto Palazzo will give a talk on The Evolution of Thyroid Surgery
24 November - Dr Anthony Toft will give a talk about The Management of Hypothyroidism.
All of the above (and our May event, programme tbc) will take place at our usual venue, Crown Court Church, Russell Street, Covent Garden, London WC2B 5EZ.
Time: 11am - 2pm
We have noted feedback that unfortunately this venue is not very easily accessible for those with mobility issues, as the hall is down some stairs and the toilets are below, down further stairs. We apologise for this and are now looking for a new venue for 2019. We would welcome any suggestions you may have. Unfortunately because we have put up posters around London advertising the Covent Garden venue for all events for this year, we don't think it's an option to move these events. However we welcome further feedback on this and may reconsider. It's a tricky one. What do you think?
Please book now for March - if you're planning to come along.
The link and calendar on our events page also have further information and you can purchase Dr Toft's excellent book "Understanding Thyroid Disorders" directly from Amazon using this link which will give a small % back to The Thyroid Trust.
We are looking forward to seeing everyone!
Please also feel free to share the March event details via Facebook to help spread the word if you would like to. Or you can download a poster to display here.
sending our best and brightest smiles
from all of us at The Thyroid Trust
We sent the above message to our contacts a week or so ago and thought it would be good to also share online. What do you think of our first blog post? Comments and ideas for future posts are welcome!