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.
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