The Thyroid Trust is a member of Thyroid Cancer Alliance which gives us access to WECAN, the Workgroup of European Cancer Patient Advocacy Networks. Earlier this year we were fortunate to be able to send a representative to the WECAN Academy in Frankfurt. You can read our report of the course, on an earlier blog post, here.
WECAN is now planning its first WECAN Science Academy in early 2020 with three aims:
- science education for cancer patient advocates
- identification of scientific 'edge' areas that will drive much-needed progress for cancer patients
- develop concepts on how patients can effectively engage in research projects.
If this is of interest to you, you can help shape these discussions.
Please follow the link below and answer three questions about science research trends and needs in thyroid cancer. WECAN need your insights to make sure that the scientific programme covers the needs for as many thyroid cancer patients as possible - as well as the wider cancer patient community - so thank you for taking the time to think and fill this in!
WECAN will collect email addresses to be able to get back to you for clarification, should that be required, The data will otherwise only be held for the purpose of WECAN Science.
WECAN need as many answers as possible from patients and patient advocates in different countries so it would be appreciated if you would circulate the link to anyone else you know who fits that criteria and may like to participate. Please note, at the moment WECAN is only interested in views of patients/patient advocates. There will be a separate initiative to get input from clinicians.
If you have any questions – please get in touch, or comment below.
With Thanks to Thyroid Cancer Alliance and our Chairperson, Judith Taylor, for sharing this opportunity.
Have you thought of asking your employer, or other companies you may have connections with, if they might be able to support The Thyroid Trust?
Lots of companies are keen to support charities and they are often all the more keen if a staff member or customer suggests it to them.
We have been incredibly fortunate to be offered use of meeting room space by Transport for London, thanks so our supporter Mike Reid who is a train driver and very kindly asked his boss and the other decision makers there on our behalf. Our September 2019 meeting will be the first one at TfL's Palestra building and the staff there have been wonderfully welcoming. Huge thanks to Mike and his colleagues.
We have also been offered and are looking forward to receiving a free roll up banner from another company who contacted us just after our charity registration was confirmed, Expocart.
Marketing materials can be expensive but are incredibly valuable to help us create a good impression and raise awareness at events we attend. Having a professional looking banner at conferences and the like has been a wonderful way for us to attract attention and now we will have two. Yay! Thanks to Ray and his colleagues at Expocart, we'll share a photo when we have it. Hopefully we might get it in time to display it at our September event. Very happy to share details of this offer which is available to all registered charities via the banner below.
Supermarkets often support local causes. Could you nominate The Thyroid Trust?
If your company has a chosen charity, could you suggest they consider supporting us?
if you need a charity speaker for a company gala dinner, how about us?
Thinking about a charity cake sale with your colleagues, or some kind of coffee morning? We'd be honoured to be beneficiaries.
If your company has a charitable arm that supports good causes - please suggest us.
And if there are people in your company with skills that could help us, who may like to volunteer, yes please!!
Just planting some seeds of ideas with you dear thyroid friends. Thanks for reading and for all your good wishes.
The Thyroid Trust is for people affected by all thyroid disorders, which includes thyroid cancers.
Our Director, Lorraine Williams, attended the first WECAN Academy, 6th-9th July 2019 in Frankfurt, along with our Chair of Trustees, Judith Taylor, who is also Secretary and Director to Thyroid Cancer Alliance and a member of the WECAN organising committee. Lorraine was sponsored by the umbrella organisation, Thyroid Cancer Alliance, which we are members of.
There were 103 delegates of varying levels of experience. It was a fantastic opportunity for us, as such a new organisation and huge thanks go to Judith and TCA for arranging for TTT to attend, meet peers from all over Europe and learn a huge amount, about: effective advocacy, using research and data, understanding healthcare systems, developing key skills and good governance.
The event was exceptionally well organised and took place in a very good venue, close to the airport, in the forest. It was so nice to be able to step outside for a few moments for breath of fresh air, or a quick walk, between sessions, and to be able to eat our meals outside amongst the trees. On the second night we walked, en masse, for 20 minutes, through the forest, to a restaurant. It was truly magical and a nice way to get to know each other a little and share our impressions of the course. This opportunity to move and be in nature as part of the whole experience was very welcome - we needed it, to be able to stay fresh and focused!
Judith delivered an excellent presentation on how to develop good content and patient materials, which was very well received. Lorraine was particularly interested to learn about the potential to have our materials accredited and plan to investigate this further.
The other sessions Lorraine found most useful were those on understanding the healthcare system framework and using evidence and quality of life measurements to improve access to treatments. The talks all had a very practical slant with lots of specific tips and signposting to further resources.
Lorraine is looking forward to following up with some of the people she met who were kind enough to offer to talk further after the course, such as UK speakers: Daniel Ratchford of Quality Health, on research and Zack Pemberton Whitely of Leukemia Care and Acute Leukemia Advocates Network (ALAN), on advocacy.
It was great to have the chance to spend time with some of our fellow Thyroid Cancer Alliance members who we had met previously at the British Thyroid Association Conference in Newcastle last year too. We are so glad to be part of a supportive and growing network of powerful voices for patients.
World Thyroid Day is May 25th, and International Thyroid Awareness Week is
May 25th to 31st, 2019.
We are pleased to share a note from Ashok Bhaseen, President of Thyroid Federation International:
"There are still many people living with some kind of thyroid disorder without diagnosis. The International Thyroid Awareness Week is now in its 11th year, and I promise we at Thyroid Federation International and its member countries won’t rest until testing and diagnosis rates improve globally. This year we’re helping people to recognize the many faces of thyroid disorders so they can visit a healthcare professional and get tested as soon as possible."
Look for patient programs on education and awareness in your country or visit the Thyroid Federation website in your country. [See below for information from The Thyroid Trust in the UK].
How to get involved in this year’s campaign
If you’re on social media, keep up with the campaign via the TFI and TTT channels on Twitter and Facebook, and play your part in the global movement by using the hashtag #ITAW19. This will help us raise awareness of thyroid disorders, which affect more than 200 million people worldwide according to the ATA (American Thyroid Association).
Visit Thyroid Federation International on www.thyroidweek.org and www.thyroid-fed.org
Why are we doing this?
ITAW, now in its 11th year, was created to highlight the detrimental impact that thyroid disorders have on people’s quality of life when left undiagnosed. Around 1.6 billion people worldwide are thought to be at risk, with hundreds of millions living with a thyroid condition right now.i Up to 60% of those living with a thyroid disorder are undiagnosed, and people may be needlessly struggling through their everyday lives without knowing the root cause of their symptoms (ii). However, once diagnosed, thyroid disorders are treatable, and the ITAW campaign is pushing hard to improve testing and diagnoses globally.
(i) Khan A, Khan MM, Akhtar S. Thyroid disorders, etiology and prevalence. J Med Sci 2002; 2: 89–94. Available at:
http://www.scialert.net/fulltext/?doi=jms.2002.89.94&org=11 Last accessed February 2019.
ii American Thyroid Association. General Information/Press Room. Available at: https://www.thyroid.org/mediamain/press-room/ Last accessed February 2019.
The Thyroid Trust and #ITAW19
This year the topic for International Thyroid Awareness Week is "the many faces of thyroid disease". We are encouraging anyone affected by thyroid disease to share social media posts on that theme using the campaign hashtag #ITAW19.
The Thyroid Trust (TTT), registered charity number 1183292, in the UK, are new members of Thyroid Federation International and have been working hard with patient and professional partner organisations to improve access to treatment options for thyroid patients in the National Health Service.
TTT have helped publish a major report, on liothyronine access issues, for the Department of Health and Social Care and are subsequently working closely with NHS England to help clarify guidance for when this specialist treatment should be prescribed. The issue has attracted considerable national and regional media coverage with articles in the Daily Telegraph, Daily Mail and on the BBC.
TTT have produced a short 2 minute Awareness Film, Let’s Talk About Thyroid Health, and two longer Information Videos with expert medical speakers, Mr Fausto Palazzo and Dr Anthony Toft – on the Evolution of Thyroid Surgery and The Management of Hypothyroidism. We are asking our supporters to please share the Awareness Film far and wide and share the Information Videos with anyone looking to learn more.
TTT will be holding an Informal Get Together with a few friends at the Wellcome Trust Café, 215 Euston Road, in London on International Thyroid Day, 25th May 2019, from 11am- 12pm, all welcome but please let us know in advance if you are planning to attend. Trustee, Theresa Baker, who is an ex nurse, will be hosting.
The next London Event is on 8th June and is for anyone interested in helping increase activities to benefit thyroid patients in the UK – The Learning and Growing Event will be at the Crick Institute Café on 8th June 11am – 1pm.
Information Events will commence in the autumn. Upcoming talks include Thyroid Disorders and Nutrition with Professor Margaret Rayman and Dr Sarah Bath on 23rd November 2019 and the New Nice Guidelines on Managing Thyroid Disease with Dr Kristien Boelaert on 25th January 2020. There will also be an event on 21st September 2019, programme tbc. Full details are on The Thyroid Trust website events page. https://www.thyroidtrust.org
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!