The Thyroid Trust Annual Report 30 June 2021 Registered Charity number 1183292 The Thyroid Trust Annual Report 30 June 2021 ## Contents |Administrative details|2| |---|---| |Trustee Report|3| |Independent Examiner’s Report|7| |Statement of Financial Activities|8| |Balance Sheet|9| |Notes to the Financial Statements|10| Page 1 The Thyroid Trust Annual Report 30 June 2021 ## **Administrative details** Name of charity The Thyroid Trust (also known as Thyroid Friends Network and TTT) Organisation type Charitable Incorporated Organisation Governing document Constitution dated 27 April 2018 Registered charity number 1183292 First registered 7 May 2019 Trustees Judith Taylor (Chair) Theresa Baker Deepa Gadhvana (appointed 16 July 2020) Karen George Stephen Hey (Treasurer) Dr Paul Jenkins Professor Fausto Palazzo Director Lorraine Williams Registered office 15 Great College Street London SW1P 3RX Bankers Lloyds Bank plc Website www.thyroidtrust.org The website includes biographies of the Trustees at www.thyroidtrust.org/leadership-team.html Page 2 The Thyroid Trust Annual Report 30 June 2021 ## **Trustee report** The Trustees of The Thyroid Trust (the “Charity”) have pleasure in presenting their Annual Report for the year ended 30 June 2021. ## **Objectives and activities** The Thyroid Trust seeks to make life better for people affected by thyroid disease by: - improving access to quality peer support and reliable information; - raising the profile and understanding of thyroid conditions; - providing a platform for patients to communicate about the issues that matter to them; - advocating for better care and treatment options. The priorities of the Trustees for the current financial year have been to continue to deliver regular support and information events, to expand our awareness raising and advocacy work, to put the organisation on a more sustainable footing for the future and to develop our volunteer team and fundraising efforts, while working with the challenges and constraints of the pandemic. The Trustees have had regard to the Charity Commission’s guidance on public benefit. ## **Achievements and performance** ## _Events_ We have continued our programme of events despite the restrictions necessitated by the COVID-19 pandemic: - - the Special Patients Voice event in August 2020 with Jenny Allen in August 2020. Jenny shared her experience of postpartum thyroiditis and her management of its symptoms; - Lessons Learned from a Patient with Professor Atul Kalhan FRCP MD in September 2020. Professor Kalhan discussed treatment a patient with a polyglandular autoimmune syndrome over ten years; - Thyroid Patients' Quality of Life Measurement with Torquil Watt PhD DMSc in November 2020. Torquil explained his development of the widely-used international scientific instrument for measuring impact of thyroid disorders on quality of life, the ThyPRO; - New Therapeutic Horizons for Graves' Hyperthyroidism with Professor Simon Pearce in December 2020. Simon told us about the latest research into possible new treatments for Graves and explained new therapeutic approaches; - In February 2021, New Research into Thyroid Hormone Function in Covid19 Patients with Dr Bernard Khoo, whose specialist interests are in treatment of neuroendocrine tumours and in genetic endocrine disorders; - Levothyroxine Treatment and Cholesterol in Hypothyroidism with Dr Pete Taylor FRCP MSc PhD in May 2021. Pete answered questions on the new study he had recently completed with AC Bianco. Page 3 The Thyroid Trust Annual Report 30 June 2021 These events have taken place via Zoom. Where possible we have recorded the events and uploaded them to our YouTube channel. The YouTube channel includes a series of films including a talk by Dr Paul Jenkins, a high-profile expert and one of our Trustees, and three talks on aspects of the use of evidence for patient advocacy from our event with Sense About Science and the MS Society. We have also arranged online Thyroid Café events, which are moderated peer support events that allow participants the opportunity to chat informally and share their experiences. ## _Advocacy_ We have followed up our leadership on the delivery of the Liothyronine Dossier, a major report for the Department of Health and Social Care, and have continued the positive working relationships with other patient organisations and with the thyroid specialists' body, The British Thyroid Association. liothyronine (T3) can be life transforming for some patients; however, some who might benefit from this treatment are not able to access it due to some NHS trusts still not following national guidance and citing cost reasons. This issue is a key focus of our work. We are continuing to receive frequent distressing reports of patients being denied NHS treatment, despite expressions of support from clinicians. Finding a way to influence local healthcare providers is proving challenging for us and our partners, all of whom are significantly lacking in resources. In July 2021 the original sole UK licence holder of liothyronine, Advanz Pharma, and their backers have been fined by the Competition and Markets Authority for excessive pricing of the drug to the NHS. We were active stakeholders in the development of the new NICE (National Institute for Health & Care Excellence) guideline, ‘Thyroid disease: assessment and management’, and we are now also stakeholders in the development of the new guideline for thyroid cancer. We are listed on the guideline NG145 as approved public information providers Author and poet Michael Rosen has continued his support with us, helping us to reach a wider audience on social media. Michael has hypothyroidism and has written a book about his experiences, ‘This is Not My Nose’, now featured on our website. We launched #TTT24Q, a series of 24 questions in interviews with supporters and volunteers to share our experiences of thyroid disease. We provided patient advocate speakers and participated in the University of Birmingham Centre for Systems Modelling and Quantitative Biomedicine, Institute of Metabolism & Systems Research’s festival, Power of the Patient Voice, to share experiences in securing public and political support for biomedical research. As part of our participation in International Thyroid Awareness Week, May 2021, Elaine Smith MSP put down a motion in the Scottish Parliament including a call for evidence for the Women’s Health Strategy. We piloted and helped to promote the questionnaire introduced by Thyroid Federation International to understand the needs and experiences of those living with hypothyroidism. Page 4 The Thyroid Trust Annual Report 30 June 2021 Media coverage has included: - - discussions on Channel Four’s Steph’s Packed Lunch with Chris Kamara and Olivia Bowen; - Jeremy Vine talking about Graves’ Disease on BBC Radio 2; - our Director’s appearances on Radio Jackie, BBC Radio Kent and UK Health Radio Magazine; - articles in the Eastern Daily Press and Health Triangle. ## _Volunteer activity_ We are grateful for our Volunteer Team which has continued to work alongside our Director and Trustees, both to participate in our advocacy work and to help in the administration of our charity. We are committed to offering volunteering opportunities to patients, friends, family and interested professionals to empower them to help address the issues of most importance to them and advance our charitable objectives. We have increased our volunteer pool to over 40 people, who have generously supported us in a variety of ways including: - social media posts; - a variety of blog posts on our website; - development of our videos on the website and YouTube channel. - supporting us to deliver our event programme - taking part in interviews with the media - helping produce and disseminate reports - sending out badges and Tshirts to our growing supporter base - fundraising - participating in International Thyroid Awareness Week and World Thyroid Day in May 2020 and Thyroid Cancer Awareness Month in September 2020 - assisting with strategy development and providing expert guidance and advice Since the year-end we have migrated to JustGiving following the closure of Virgin Money Giving as a platform for online donations. We are beneficiaries from two schemes which provide us with a modest commission whenever one of our supporters buys on their platforms; Amazon Smile and EasyFundraising and we receive further donations from Paypal Money Giving from supporters who choose to fundraise for us on Facebook or Ebay. ## **Structure, governance and management** The Thyroid Trust is a Charitable Incorporated Organisation (CIO). It adopted its Constitution on 27 April 2018 and was registered with the Charities Commission on 7 May 2019. Each of the Trustees is a member of the CIO. The members of the CIO have no liability to contribute to its assets and no personal responsibility for settling its debts and liabilities. Page 5 The Thyroid Trust Annual Report 30 June 2021 The Trustee Board has a breadth of professional and medicèl experience and includes members with first-hand experience of thyroid conditions. The Trustees meet at least four times a year. Day-to- day operations of the Chartty are carried out by a freelance Director who reports to the Trustees and has lived experience of thyroid disease. The Director co-ordinates a growing team of volunteers. Deepa Gadhvana, known as Deepa Verma. joined the Trustees in July 2020. In March 2021, the Trust appointed a part-time Development Officer to provide administrative support to the Director and Trustees and help with development activity- In the opinion of the Trustees there is no U￿lmate controlling party of the Charity. Financial review In the year to 30 June 2021 the Charwws income was £32.121 {2020= £38,432). We continued to receive generous support from the Federated Foundation, who grnnted £IO.(KX) in the financial year and have provided further funding since the year*nd. We re￿iVed £15,￿) from National Lotterfs Reaching Communities programme of COVID-19 supw)rt and £l.(MJ) from Albert Hunt Trust. Community fundraising ènd individual donations amounted to £6,121, although the restrictions on meetings and large-scale fundraising events during the pandemic have limited our activities. Expenditure amounted to £34,55712020: £35.1781. being primarily the cost of the Director and other treelance staff. Resenfes At the end of June 2021, the charity held reserves of £1.415 held entirely in an unrestricted reserve. We have no employees or other significant fixed costs and therefore we can operate with limited reserves- however, it is the intention of the Trustees to build our reserves in order to secure an increased level of attNities in future. Preparation of the report The report was approved and authorised for issue by the Trustees on 8 March 2022 and is signed on behalf of the Trustees bv: Trustee Trustee Page 6 Independent examinerfs report to the trustees of The Thyroid Trust I report to the trustees on my examination of the accounts of the above charity I'the charity") for the year ended 3010612021. Re5ponsibilitie5 and basis of report As the charity's trustees, you are responsible for the preparation of the accounts in accordance with the requirement5 of the Charities Act 20111"the ACVI. I report in respett of my examination of the Trusys accounts carried out under section 145 of the 2011 Act and in carrying OLrt my examination, I have followed all the applicable Directions given by the Charity Commission under Section 14515llbl of the Act. Independent examlnerfs statement I have completed my examination. I confimi that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respett: the accounting records were not kept in accordance with section 130 of the Charities Att: or the accounts did not accord with the accounting records; or the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reportsl Regulations 2008 other than any requirem@nt that the accounts give a'true and fairf view which is not a matter considered as part of an independent examination. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Signed: Date: 2910312022 Name: Priscilla Asirifi ACMA Relevant professional qualificationlsl or body.. CIMA Addres5= 8 Sandown Street, Gorton, Manchester. The Thyroid Trust Annual Report 30 June 2021 ## **Statement of Financial Activities** Page 8 The Thyroid Trust Annual Report 30 June 2021 Balance sheet Balan￿ sheet Asat30June 2021 Reglstered charity number 1183292 20 Notes Current assets Debtors Cash at bank and in hand 347 9.164 17.492 9,511 18,058 Uabilitles: Creditor5: amounts falling due within one year 18,C861 114,207) Net assets 1,415 3,851 The funds ofthe charfty Unrestricted income funds Restricted income funds 1,415 524 3,327 Totsl funds carried forward 1,415 3,851 Approved bythe Trusteeson 8March 2022and signed on theirbehalf by:_ Trustee Truste Page 9 The Thyroid Trust Annual Report 30 June 2021 ## **Notes to the Financial Statements** ## 1 **Accounting policies** ## _Basis of preparation_ The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) - (Charities SORP FRS 102) and the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (March 2018). The Charity meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy or note. ## _Income_ Income is recognised when the Charity has entitlement to the funds, any performance conditions attached to the income have been met, it is probable that the income will be received and that the amount can be measured reliably. Volunteer time donated is not recognised as income. ## _Expenditure_ Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably. ## _Funds_ Unrestricted funds are donations and other incoming resources received or generated for the charitable purposes of the Charity without restriction. ## _Debtors_ Trade and other debtors include amounts where a funder has committed to settle obligations to a third party on behalf of the Charity. Page 10 The Thyroid Trust Annual Report 30 June 2021 _Cash at bank and in hand_ Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account. ## _Creditors and provisions_ Creditors and provisions are recognised where the Charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Page 11 The Thyroid Trust Annual Report 30 June 2021 ## **7 Trustees** No Trustee received remuneration during the year (2020: nil). No Trustee was reimbursed for expenses incurred on the Charity’s behalf in the year (2020: none). Page 12