THROMBOSIS UK (A Company Limited by Guarantee} REPORT AND fi INANCIAL STATEMEI NTS FOR THE YEAR ENDED 31 JANUARY 2024 Registered Charity Iyo: 1090540 CompAlly No: 4354472 L3174-24 THROMBOSIS UK Register￿ Charity No: 1090S40 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 REFERENCE AND ADMINISTRATION DETAILS: TRUSTEE AND MANAGEMENT Trustees Andrea ￿Ulse Croft Dr Matthew Robert Fay Professorlan Maxwell Franklin Simon Hart Professor Beverley Jane Hunt OBE Stephan Jaglin Professor Simon Noble Robin Offord Dr Dalia Dawoud- Resigned 1110912023 Janet Morgan- Appointed 0110912023 Nusaiba Masnurah- Appointed 0110912023 CEO Jo Jerrome Secretary Professor Bcverl¢y Jane Hunt OBE REGISTERED OFFICE Couch Bright King & Co 2 Tolherst Court Turkey Mill Business Park Ashford Road, Maidstone KentME14 5SF AUDITORS Couch Bright King & Co Chartered Accountants 2 Tolher5t Court Turk¢y Mill Business Park Ashford lioad. Maidstone KentME14 5SF SOLICITORS Stone King 28 Ely Place London ECIN 6TD BANKERS National Westminster Bank PLC Maida Vale Elgin Avenue 127 Kilburn Road London NW6 6JL THROMBOSIS UK Registered Charity No: 1090540 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 The Trustees present their annual report together with the financial statements of the charity for the year ended 3 1st January 2024. The financial statements have been prepaTrd in accordat)ce with the accounting policies set out on pages 16 to 17 and ci)mply with the Charities Act 2011, The Statement Recommended Practice applicable to charities pr¥p41rin¥ their accounts in accordance with the Memorandum and Articles of Association, Accounting and Reporting: Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland published October 2019 and the Companies Act 2006. The report and stateTnents also comply with the Companies Act 2006 as ThromEK)sis UK was incorporated by guarantee on 16 January 2002. It has no share capital and is a registered charity (registered 12th Febriiary 2002). OBJECTIVES AND STRATEGIES Thrombosis UK was establfftshed to advance medical science in relation to the diagnosis. causes. prevention. alleviation, management, and cure of thrombosis and for the promotion of knowledge and public education of the understsnding and awareness of thrombosis. Using the powers conferred by the Memorandum of Association, Throml)osis UK aims to fund: A range of studi¢s looking at why and how a thrombosis occurs. Research into the manag¢ment and the improvement of current treatments available. An education program that infornis people about the causes, effects. prevention, and recommended management of thrombosis. Provide a network of support for those affected by thrombosis. ORGANISATION AND STRUCTURE The Board of Trustees, who are also Dire¢tors of the company, govern Thrombosis UK. The Trustees have the power to appoint, and remove any member. any member to act as Secretary to the Charity and all vote on the appointment of the Chair, Treasurer. and other Honorary Officers. Th¢ ¢harity seeks to ensure Ttvstees are appointed to fulfil the changing and on-going needs of the charity's activities and out¢om¢[s]. A Trustee job description is agreed when vacancies become available to ensure existing and new Trustees have clarity on their roles and they each bring skills that complement and benefit Thrombosis UK. New Trustees are appointed with the unanimous approval of existing Trustees. All Trustees give freely of their time and expertise at)d receive no remuneration for their work, The day-to4ay administration of the Charity is the responsibility of the Chief Executive Officer employed on a 0.8 pertnanent FTE contract. The Charity also employs a Patient Support and Helpline Lead on a 0.8 pemianent contract and an Admin and Fundraising Administrator on a 0.6 pernlanent contract for the year under review. In 2022 the Charity appointed a Clinical Psychologist on a 0.5 two-year FTE contract Starting I st February 2022. Following review, this was extended in January 2024 for a further two year5 uritil 31 January 2026. AIMS AIYD AL TIVITIES The Charity aims to prnmote greater awareness and understanding of venous thromboembolism (VTE) to improve: Prevention of avoidable blood clots. Timely detection and prompt diagnosi5 of VTE. Appr()priate manag¢ment that improve5 patient outcomes. Timely support and education to enable patients to r¢stor¢ their well-beiiig and hvalth. To support achievement of this, the Charity concentrates on three key areas. Awareness Education Research THROMBOSIS UK Registered Charity No: 111911540 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 Executive Summary Thrombosis UK continues to rise to the challenge of improving awareness, education and research into venous thn)iiiboeiiibolisin. 2023 saw coiituiued higli deatli lates, particularly followiiig hospital stays. which underlllie Ilie urgency of improving care for this much-mlsunderstood condition. The charity has continued to innovate, building on the success of previous year5 to record successes including: Re.8ponding to the lack of quality patient infonnation to de.sign and launch the Let's Talk Clots app to provide free and up to date support. Revealing the failure to meet national VTE prevention standards througb Fols to NHS Trusts. Securing more than a quarter of a million pounds to lead a national prevention initiative in primary care, which ha5 already outstripped iDltiaJ predictions for engagement. Enabling patients to access world-class care through the REGAIN Study. illuminating the under-appreciated impact of thrombosis on mental health post-pandemic. and setting a standard for future interventions. Running an online conference with record attendance from medical professionals. AWARENESS Thrombosis UK has continued to raise awareness of venous throml)oembolism (VTE) across multiple areas in¢liiding: General awareness of risks. signs and symptoms. Impact of a VTE on individuals, and benefit of support, information and good ￿mmunication. Failures in VTE prevention. delayed diagnosis, management and arcess to appropriafr care and expertise. Our annual awareness week, 'Wational Thrombosis Week. (NTW) held in May 2023, secured media coverage in local and national newspapers, including an interview on Sky News. rea¢hin8 approximately eight million viewers. The charity's social media platfornis have also grown An followers and with support from a newly appointed Trustee, a more robust media plan is being developed to improve regular reach and engagement on the many areas of work Thrombosis UK is involvcd with. Continuing our work to raise awareness of con¢ems in VTE prevention. in February 2023, we carried out a Freedom of Information (FOI} request to all NHS Ho.spital TrusL8 seeking inforniation ea¢h Trust's Current policy for VTE risk assessment on all patients admitted to hospital. Due to the COVID pandemic, national re￿rtIng of VTE risk assessment rates w&8 suspended. and despite a return to prewpandemic systems. reporting of VTE risk assessment data has not been reinstated. Thrombosis UK is aware that post pandemic the NHS is operating with increased pressures on staffing, costs. waiting lists and resources. Trusts are working to find a 'n¢w Donnal, while facing extensive challenges in demand, budgets and staffing. We were concerned from discussions with multiple healthcare profcssionals that ratcs of VTE a5sessrnent have slipped without national monitoring systcms in placc. We had previously carried out a Freedom of Infrirniation request to NHS Statistics to obtain NHS Digital data for Patient Outcomes Indicators for deaths due to VTE ￿lated events within 90 days of discharge from hospital, which had not been published since the Covid-19 pandemic. Prior to the pandemic between 2014115 2018119. NHS Digital data showed deaths related to VTE events within 90 days of discharge from hospitsl bad declined. ln the year from April 2018119 there were 11,696 deaths which increased to 16.379 in the year from April 2020 to March 2021, the excess probably attributable to the increased rates of PE described in those hospitalised with Covid-19 during the pandemic. due to immunothrombosis being misinterpreted as small PES. How¢v¢r. wonyingly. in th¢ year from April 2021 to March '22, deaths were still at the increased level of 14,873, revering the previous downward trend in deaths related to VTE evetits sliowti iii NHS Digital data betw¢¢ii 201￿2019. Tlii'otiibosis UK was coiicei'ned that this continuing increased death rate might relate. at least partially, to deteriorating VTE risk assessment. THROMBOSIS UK Registered Charity No: 1090540 Company No: 4354472 TRUStEES' ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 The FOI was sent to 170 NHS Acute Trusts between February and March 2023 asking three questions about VTE prevention: QI. Does tli¢ TI￿st routillely meet the 951/bo VTE Risk Assessmciit (RA} level required by NIIS England? Q2. Please provide VTE RA data for each month between Jan 2022-December 2022 respectively. Q3. Does the Trust have dedicat¢d funding for a team ensuring VTE prevention occurs? Finding.$: oi: 54Trusts responded to this question with, 'yes' or 'mostly' however, Only 45 of dic Trusts rcsponding, 'ycs' or 'mostly.' providcd data ill Q2 that cvidcnccd 950110 VTE RA Icvcl was being routinely achieved. Q2.. Replies were received from 135 of170 NHS England Acute and Foundation Trusts (790/0). Seven (50/0) had suspended data collection. Nine (7/0) were unable to acccss data due to Cost implications or IT issues. Eight {6Q/o) replied but did not provide dat& 111 (820/0) provided VTE RA data. Further information for Q2: 45 of the I 11 {410/o) routinely attained 950/0 VTE RA levels for I l+ months in 2022. Of the remaining 66 (590/0) Trusts during 2022: Nine (80/0) attained 950/0 VTE risk assessment rates for 8-10 months. Four (40/0) for seven months. 53 (480/0) achieved 950/0 VTE risk assessment rates in six months or less, and of these 38 {340/r*) did not achieve 950/0 VTE RA rate An any month during 2022. Q3: 117 responses on dedicated funding for VTE prevention teams, were received, and have been categorised as follows: 66 {56010) replying 'No'. 50 {430/fy) indicating 'Yes'. One (0.9 /0) indicating an unfunded role. Analysis of Q3 responses showed that funding or identifying rol¢s to oversee VTE prevention did not relate to VTE risk assessment rates. Failure to prevent vfE leads to worse heglth outcomes gnd Avoidable costs Over IOO/o of deaths in hospital are related to hospital-acquired VTE (HA-VTE). Autopsy studies have shown that many VTES are missed prior to death, with HA-VTE caiisins signiflcant events up to 90 days post-discharge. In the current funding and staffing climate, healthcare needs to be delivered as effi¢iently and effectively as possible. A major faclor An achieving this is implementstion of a proven and ¢ffe¢tive prevention programme whlch should be adopted by all NHS providers. Progress made in NHS England between 2010-2020 evidenced that a systemati¢ approach to preventing HA-VTE was effective. Together, the VTE Prevention programme and regular publication of data underlined the benefit to patient fety. improvd outcomes and achieved a reduction in burden of preventable VTE in the NHS. Whilst reducing burden of administrational work on alreody over-stretched NHS teams, may be well intended, An an era when the NHS is under perhaps its greatest pressures, suspension of the collection of central VTE risk assessment data appears to be resulting in reduced priority being given to identifying those at risk of VTE and Consequently being able to appropriately reduoe that risk. In short, VTE risk assessment has fallen, and death assoeiated Ivith VTE withln 90 day5 of discharge, has risen. THROMBOSIS UK Registered Charity No: 1090540 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 Impact of Thrombosis UK'S FOI Our work on this FOI is providing greater awareness and infomiation to assist NHS Patient Safety, Providers and policy developers to understand the risks and impact of current practice nationally. Thrombosis UK has used the findings from the Fol to encourage reinstatement of national IrrE risk assessment data collection and publication of VTE data across HES and Outrome5 Indicator Frameworks. Not only has a paper been submitted to the 'Health se￿ICe Journal.. but the charity has also promoted our findings in media coverage. presentations and discussion across the sector. NHS Patient Safety are strongly siipportive and working with us to advocate for the reinstatement of mandated VTE Risk Assessment and reporting. National Thromb05i5 Week t)uring 2013 the Charity continued to focus on increasing awareness through presence and involvement in fundraising events. 'I'he firsL National '1 hrombosis Week fundraiser was launched and invited cveryone, regardless of health, mobility or age. The even¢ '5K your way in May, shared activities from muliiple supporters from across the UK on social media and raised over £2,800. Tlie activity was a catalyst for furtlier support and resulted in the first year in which fundraising topped £1 00,000 in the first Six months of th¢ year. The a¢¢cssible and inclusive natuir of the charity'5 fundraising efforts has paid dividends not only in sums raised, but also in improving sustainable engageinent with supporters thanks to a stronger sense of community. A number of fundraisers utilised the Crowdfunder website to increase their 'in niemory, appeals. Not only was this successful, raising mor¢ than £8.000, but in¢r¢ased awareness of thrombosis ai)d Thronibosis UK amoiigsl the general publi¢ and audiences who would not usually have had contact with the charity. VTE Aw4rds in Parliament Thrombosis UK was delighied to launch the vfE Awards, hosted by Lyn Brown MP and held in Houses of Parliament in November 2023. Communications with MPS and via Local Health Trusts raised awareness and provided news of the short-listed candidates. The Charity also shared insight on effective VTE pathways that were making a difference to patient safety, care and outconies. Awards were made in six categories covering VTE prevention, diagnosis, mat)agement, patient experience, patient resources and Thrombosis UK Life-time Achievement Awards. Dr Adrian Fowles (NHS Patient Safety) attended and shared an update on NHS work prioritising VTE prevention, incliiding the reinstatement of VTE Risk Assessment reporting for all English hospitals. Edueation The 2021 NHS Getting It Right First Time (GIRFD Thrombosis Report highlighted a significant lack of patient infomiation about VTE in hospitals. The report recommended improved provision and access for patients to infomiation about V'l E. THROMBOSIS UK Registered Charity No: 1090540 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 In response to GIRFT recornmendp4tions. and in recognition of the severe financial pressures the NHS 15 ¢XP¥l'l¢ll¥lll8. Tlii'otiibosis UK developed and funded a patient infonnation VTE prcvcntion card and offered thcse free of charge to UK hospitals. Distribution continued during 2023 via staff in hospital and community medical settings. taking the number of patient printed resources belng distributed to over one million in the past 18 months. However, the Charity recognised that.. Sustainability of cost was challenging. Each resource only addressed one element of VTE. Access heavily relied upon distribuliL)n by h¢alihL￿Y pttbfessioiials, resultiiig iii variability across regions and even within hospitals. A new approach was needed th&t Loulij addr#sy the shorlLUllllIl¥S u( ili¢ ¢xibliiLg t¥YVUlLes pi'o81'aiiii)ie. So, in 2023, Thrombosis began work on a patient infomiation app- named Let's Talk Clots. Clinical expertise was built in from the start. thanks to a close collaboration with Sarah Havord, VTE prevention lead at Oxford NHS University Hospitals Trust. The app would: Provide medically approved, patient reviewed informalion. Resources would include inforniation across the VTE pathway, from ' What is a VTE?, to 'Signs andsymptoms. The app would offer a one-stop shop foy support through diagnosis, treatment and recovery. This would be supported by a 'chat' function and resources on specific health related areas of VTE including pregnancy, cancer and being admitted into hospital. Include answers to frequently asked questions throughout each s¢ction. Funding toward5 the app was secured through ihe charity's successful application for an International Society for Thrombosis and Haemostasis (ISTH} Legacy Grant. Thirty health¢ar¢ professionals and 12 patient representatives helped to develop, draft and review content. This amazing team full of passion and enthusiasm for the project, ensured the app coiiipleted wiiliiii five nioiitlis, beiiig officially lauiiched in the Flouses of Parliament on 23rd Nov¢mbcr 2023. By 31" January 2024, just two month5 Post-launch. the app had been downloaded 1,381 times with a 920/0 a¢¢ess and used rate, by individuals from 42 countrie5 LEfs TALK CLOTS D Each area then shares ... UK. LTC App addrdlo i•. It￿llY￿￿Tr)bEt, P+bn al¢kaA*tsbtè¥ Argentina. Australia. Algeria, Ban8ladesh. Bul8aTia, Belgium, Canada. Chilc. Cyprus, tknmark, Egypt, France, (ireecc. Hungary. India, Iraq, Italy. Jersey, Jordan, Kuwait. 151¢ of My￿. Malaysia. Namibia, NoTWdy. Netherland4 New ZealarKI, Pakistan, Palestine, Portugal, Romania. Saudi Arabia, Singapore. Para8uay. Philippines, Somalia, S Africa, Spain, Sudan, Thailand, Switzerland, UEA, USA THROMBOSIS UK Registsred Charity No.. 1090541J Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JAIYUARY 2024 N4tional Thrombosis Week and Let's Talk Clots virtual conferences In 2023, Thrombosis UK hosted two accredited online conferences for healthcare and allied profcssionals as part of the National Thrombosis Week and World Thrombosis Day celebrations. The Thrombosis UK conferences have become synonymous with excellence, and each conference has seen registration numbers increase year on year.. 2.556 NTW'23 and 2,600 for LTC'23. We have been fortunate to welcome an international faculty and in October 2023 provided three very special 'LTC Master Classes, witli sessioiis lead by.. Prof Fionnuala Ni Ainu, with panel members: Dr Marc Blondon, Dr Leslie Skeith, Dr Robert-Ebadi, Dr Ba Kevane & Prof Mark Rogers Dr Jean Connors, and Prof Jeff Wettz. Alongside the Master Classes, sessions welcomed collaboration with professional bodies for primary care (PCCS), VTE nursing (VTE-SN} and pharmacists (UKCPA-HAT). New for both 2023 conferences, wa5: The introduction of an 'Poster Hall, from which four submissions were selected for a dedicated 'Oral Presentation, session within the main agenda. A roundtable group meeting facility providing opportunity for face-tfrface discussion and peer Support. Feedback was overwhelmingly positive, praising: Agenda. Range of topics. Ease of navigation around the plarforni and introduction of an app. 2417 access for an extended period. Advancing understanding Informing practice ThwornboJlxUK Patlent information The patient information app. 'Let's Talk Clots,, has provided a fresh platforni to share information and engage awareness. New r¢sour¢es. largely developed frotn the REGAtN project and app, including a 'Glossary of Temis,. have all have been well received, and work was initiated in January 2024 to update and extend the currettt library of Thrombosis UK patient inforniation resources. All Thrombosis UK resources are available free of charge to individuals online. However emphasis has been placed on dissemination of the app, as this provides free, instant. ease of access to th¢ greatest breadth of infonnation for all users. Furthernlore, it is easily updated and very ¢ost-effe¢tive. Thrombosis UK has advertised across social media platforn]s via HCP providers. Example text and QR ¢odes have been made available to all medical settings who have ordered free posters and postcards about the app. so that they ¢an include information on admission and discharge hospital letters and follow-up communications. THROMBOSIS UK Registered Charity No: 1090540 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 In the first two months of distribution, 40.000 app awareness postcards and posters were distributed to medical settings. DOWNLOAD FREE INFORf¥lAT1014 ALL ABOUT BIODD CLOTJ IEfsTALK IIOTS Pgtient meetings In collabordtion with medical research groups. the Charity hosted three patient and public involvement (PPI} meetings with UK Thrombosis Research Network (UK-TTEN), Ha¢mSTAR, and Oxford University Hospitals NHS Foundation Trust. Interest in becoming involv¢d in this way has been high. and the sessions proved to be a very effective way to share information about proposed research studies as well as seek involvement, ideas and comment from patient representatives. Interest to attend online inforniation and support meeting5 Continues, and a programme of regular sessions was developed to cover popular topics, frequen¢ly ask¢d questions and peer to peer support. These included 'Coping with... webinars for individuals following a diagnosis of VTE. Led by Professor Paul Bennett, Clinical Psychologist with Thrombosis UK, the sessions addressed many of the issues experienced due to the psychological impact of thrombosis. REGAIN proje¢t Thrombosis UK'S REGAIN project, was established to provide free. on-line ac¢e5S to clinical psychological support for individuals diagnosed with Vaccine-iiiduced Immune Tliroiiibjcytopeiiia aiid TliiDiiibosis (virr), but who were unable to access local psychological support. The REGAtN programme sought to raise awareness of the impact of vIrr through research, education, and resources in order to: Improve every patient's recovery. Inforni future planning and development of VTE care pathways. Improve every patient's experience of thrombosis. The programme has been well received by users and has produced valuable support resources for individuals atlected by the impact of vIrr or venoLlS thromboernbolism (VTE). In December 2023, two papers were published in the BMJ, 'Qiialilalive study of the consgqiiences ofvaccine-induced immiine ihYombocytopeKia and ihrombosis.. the e.rperienees offamily membei's,, Living with V¢7¢Gine-induced immtsne ihi'ombocylopenia and ihronibosis.. a qualitalive sludy. In 2023, as virr nunibers naturally d¢rr¢ased, tiie 5¢rvice began to a¥"cept i'eferrals froni individuals wlio liad diagnosis of VTE and had experienced psychological impact from this but were unable to access local psychological clinical support. Professor B¢nnett reached out to UK-wide VTE services and shared infomiation on the r¢sour¢es available and the pathways for r¢f¢tTal into thc scrvicc. THROMBOSIS UK Registered Charity No: 1090S40 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 As a rcsult, during 2023, Profcs8or Bcnnett was able to provide places for 60 individuals to the REGAIN I-l clinical psychology support, 48 of whom had a diagnosis of VTE and 12 with vrrT. Twelve small group information and support meetings were held for individuals experiencing excessive anxiety and worry, following a VTE or VITT diagnosis. In January 2024, the Board of Trustees reviewed a business plan to extend REGAtN through: Inclusion of patients significantly struggling with the psychological impact of a VTE and without access to local clinical support services. tkvelop the provision of online small group meetings and recorded resources to assist those mildly affected. Develop an accredited online training Course for healthcare and allied professionals aimed at 5UPPOrting improved communications between patients and healthcar¢ provid¢rs. Provide local educational support and sessions to UK wide HCP providers. Extend patient infonnation resources for this area. The Board agreed to extend Professor Bennett's contract for a further two years, until 3151 January 2026 for this work to be developed. Missed diagnosis of VTE The issue of missed diagnosis of VTE is a frequent theme from individuals and families contacting Thrombosis UK. and too Ofte￿ highlights the tragic loss of a loved one that could potentially have been prevented. In 2023, NHS Resolution published ' Venous Thromboentbolism, which dooumented 687 closed Claims relating to Venous Throml)oembolism (VTE) injuries. Of these, 411 claims were settled with damages paid, Costing the NHS over £23 million and highlighting VTE as a significant cause of mortality, long-terni disability and long-lasting ill-health problems- many instances of which are avoidable. NHS Resolution provided a digital resource detailing how Clinicians should take preventative action to improve outcomes for patients at risk of VTE. Diiring 2023, Leads from Thrombosis UK siipported educational events in collaboration with NHS Resolution, to promote learning and prdctice from their work Ihttps."Iltesolulion nhs uk/wwon￿￿l1Upl0ads/2023103lDld-Y0ll-know-VTE-rinQl- ametuled.pdl]. Dldy•J know? +++++ +++++ +++++ +++++ 1 kn 2)PMF4• Continuing our work in raising awaffn¢ss of this issue. in September 2023, Throml)osis UK hosted a Parliamentary Round Table Meeting in Port¢ullAs House, initiated by Tim Edwards. whose mother died as a result of a missed diagnosis of pulmonary embolism (PE), and Helen Hayes MP. Th¢ meeting also heard from Debbie Budd¢n. whose parther. Gary, died following a missed diagnosis uf VTE, as well and UK Health Leads, Royal Colleges and representatives from public bodies. A report from this meeting is to be piiblished in 2024, THROMBOSIS UK Registered Charity No: 1090540 Company No: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANIIARY 21)24 Research into improvlng early dlggnosis of VTE Following discussions between Thrombosis UK, VTE Exemplar Network leads, NHS GIRFT and NHS Patient Safety, Thrombosis UK was successful in securing educational research grants totalling £255,020 to initiate a study seeking to improve understanding of the common barriers and causes causing delay in early diagnosis of VTE. Led by Thrombosis UK with endorsement from NHS G￿FT, 'Detect VTE, was launched in December 2023, with the Charity r¢a¢hin¥ out to UK wide priniaiy care practices to secur¢ interest for stsg¢ One- VTE audit. This focused on tracking patient journeys in the eight weeks prior to them receiving a diagnosi5 Of VTE diagnosis within the past 12 months. Interest was much greater than we had anticipated, and within four weeks 54 UK primary care practices had registered an interest. Ea¢h practice was offered an audit for VTE, and receive an individup41 report and, if requested, follow-up education and discussion to support implementation of learning from the practi¢e-specific audit report. Following individual meetings with each practice, audit began in January 2024 and are expected to complefr by June 2024 having reviewed in excess of 370,000 records. Once completed analysis of the national dats will commence. No patient identifiable data was ¢olle¢ted or taken from the practice's databas¢ at any point. It is intended. that this work, in collaboration with NHS GlliFT, NHS Patient Safety and related Royal Colleges, will enable to learning to infonn and benefit: Early medical training. Continued professional training, Awarenes5. A clinical solutions tool to support early clinical recognition of potential indicators of vfE. will be develop¢d and offered free of charge to UK wide medical prdctices. Research Publications As a result of wo1& undertaken in the REGAIN project, Professor Betinctt was successful in securing publication of two papers in the British Medicaj Journal (BMJI). Th¢ first paper looked at patient experi¢nce of Vaccine-indured Immune Throinbosis and Thrombocytopenia (virr). This has reached the 98 percentile of research interest on altimetric digitsl services, showing 4.500 download5 at th¢ time of writing this r¢port. The second paper, looking at family experienre, reached the 95, percentile of digital re5¢ar¢h interest and had over 3,000 downloads as at time of writing ihis report. Professor Bennett's work with the REGAtN project and specifically related to VITT, resulted in him being nominated by multiple VITT support groups to the COVID-19 inquiry to be ralled as an Expert Witness and speak of the psychological cons¢quen¢es of VITT. io THROMBOSIS UK Registered Charity No: 1090540 Company No.: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANIIARY 2024 Fundraiyiiig Fundraising supporters took part in events a¢ross the UK, from private and individual challenges to virtual races. cycle rides, runs, walking challenges and tournaments. We welcomed a return of our repeat fundraisers with Will Jebson continuing his, 'Fishing for Thrombosis, event and extending this to hold two events year. Brenda Christopher led a team of repeat fundraisers in the 'Shoreham IOK,. Our regular eveni fundraiser Peter Tinston completed the Royal Parks Half for a second year in memory of his late wife and long-time Thrombosis UK supporter, Dawne. Thrombosis UK is immensely grateful to all who fundraise and donate to the charity for our work to ¢ontinue. Tragically, support often comes after personal sutlering or loss, and Thrombosis UK would like to thank supporters aiid reiterate ihat their ￿ndraising helps to make a significant difference to understanding, fdising awareness of and supporting individuals affected by venous thromboeml)olism. Due to the efforts of our fundraisers, we can be there for anyone at risk of, or diagnosed with a blood clot, or who has lost a loved one due to VTE. Authors Dawne Archer and Ken Gregory continued to donate funds raised from the sales of each of their books to Thrombosis UK. With their very active social media accounts, again, their help not only raises fijnds but successfully in¢r¢ases awareness of thrombosis and th¢ charity. The charity is also grafrful to supporters who secured mat¢h-funding from employees, along with Corporate fundraisers such as Lincolnshire Housing. When we review support and success in fundraising, we also wish to thank and pay tribute to our longest serving fundraisers.. Minion Green, Rachel Pitson, John Humphreys and Brian Houten, who individually. continue to organise events, fundrai5¢ or make annual donations to Thromb05is UK. Thank you. ACHIEVEMENTS AND PERFORMANCES SignificY4nt activities and achievements The librdry of 249 Thrombosis UK films received over 100,233 views taking total views to over one million! 750.000 free, rnedically approved, printed patient infonnation resources were distributed to UK medical settings. We welcomed over 5,000 attendees to our 2023 healthcare conferences from across the globe. Secured 32 Continued Professional Development (CPD) points for 2023 Thrombosis UK conferences. Launched Let's Talk Clots app providing information about blood clots across the VTE pathway. Wiihin two months following launch, resources on the Let's Talk Clots app received 3,601 views 940 document downloads 215 film views I Iosted three 'Patient and Public Involvement, meetings involvtng 54 patient representatives. REGAIN clinical psychology programme provided 366 one-tfrone clinical psychology sessions for 60 individuals. Collaborated with nine professional bodies and NHS entities to increase VTE awareness, learning and educational opportunities for all h¢alth¢are professionals. THROMBOSIS UK Registered Charity No.. 1090540 Company No.: 4354472 TRIISTF,F.S' ANNIJAI. REPORT FOR THE YEAR ENDED 31ST JANUARY 2024 Launched the national 'VTE Awards., sharing effective practice in VTE prevention and management. Thrombosis UK featured on Sky Morning News, talking about VTE risk assessment and missed diagnosis. A 32 % increase from 2022 in the number of fundraisers supporting Thrombosis UK. In 2023 we saw a J 10/0 increase in trackable fundraising revenue on the previous year. Secured grants totalling just over £255,000 to 5UPPOrt the Detect VTE programme of work. Government & Policy In July 2023, changes in requirements for All Paty Parliamentary Groups (APPG) were published and needed to be implemented by 3 I" March 2024 or the individual's annual general meeting (AGM). whichever was earliest. Thrornbosis UK has been the 5ecretsriat for The All Paty Parliamentary Group for Thrombosis (APPGT) since 2019. and hence. when the APPGT AGM was held in January 2024. the rhanges were discussed. The group agreed, due to significant increase in required supporter numbers and reslri¢tions on the number of APPGS MPS and Peers could be Offi¢er to, it was decided that the APPGT would need to disband, unable to meet the new requirements. The Parliamentary Office for APPGS was notified by Lyn Brown MP, Chair of the APPGT in January 2024, that the group had disbanded. Thrombosis UK maintained regular communication with NHS England during 2023, in particular NHS Patient Safety and NHS GIRFT Leads, to continue to focus on VTE and work towards.. Reinststement of VTE Risk Assessment reporting for all NHS England hospitals. Work on the 'D¢te¢t VTE, initiative. Both NHS GIRFf and NHS Patient Safety endorsed plans for Detect VTE and regiilar iipdate meetingq were planned to review approach, progress and ensure maximum benefit could be gained from this extensive projecL FINANCIAL REVIEW During the year ended 31 January 2024 the charity made a surplus of £255,442 (2023: deficit of £12,264). Total incoming resources saw an increase of 1510/0 and expenditure increased by almost 17ts/0 in the year. The material increase in incoming resources was as a result of successfully recciving restricted grant monies (see Note 3 to the financial statements). The virtual events and activities incurred a generally lower expenditure requirement. However, the majority of the increase in expenditure w&8 as a result of the charity's appointment of a Senior Clinicavcounselling Psychologist to lead the REGAtN psychological support programme. The ewnomic and political uncertainty continues to affect the ability of the charity to meaningfully forecast corporate and individual funding commitments and, as with last year. although the charity budgeted to meet its planned charitable activities through funds raised in the year it was prepared to have to utilise 3 proportion of its general unrestricted reserves if necessary. The net assets of the charity have been retained and have increased from £411,778 in 2023 to £667220 and this fits with the reserve5 policy of the charity. The Statement of Financial Activities is presented on page 19. PLANS FOR FUTURE PERIODS The extended adoption of virtual events, in particular educational webinars. conferences, and meetings, has continued to enable the charity's work to grow and extend across.. Reach. Global collaborations. Eas¢ of a¢cess for patients. the general public and healthcare professionals to a¢¢¢ss infomiation, 5UPPOrt. and training. 12 THROMBOSIS UK Registered Charity No: 1090540 Company No.: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 The online platforni has not only proven to be more cost-effectivc, but also received extremely positive feedback from faculty. attendees, and sponsors. While the recording of sessions ensured a lasting legacy to access high quality education. The inaugural mccting for the newly formed Thromlx)sis UK 'Professional Advisory Committee, (PAC). was held in 2024. Fornied with representatives from acmss the UK from health care and patient supporters, this committee will.. To repres¢nt VTE stakeholder.% acm.88 the ItK. Identify and infomi Thrombosis UK on relevant and key areas of VTE which should be included in the charity's strategy for delivering its 'Aw2rene55, Research and Care, goals. Provide input and guidance on update or development of resources, conference agendas and advocacy activities across the UK NHS systems. Be a tirst line reteree for grant proposals or applications. Repres¢nt Thrombosis UK as an ambassador. In reviewing plans for 2024￿5. while Thrombosis UK is mindful of the benefits of personal Interaction the charity is keen tr) enable increased access and the virtual platforni and recording of webinars is currently enabling both greatsr access and a learnlng legacy. However. we are mindful that continued monitoring is importanl and so the charity. along with review from the PAC, will continue to carefully consider feedback. access and opportunity to ensure we are delivering in the most effective and efficient style suitable and welcomed by UK healthcare practitioners. REFERENCE AND ADMINISTRATION DETAILS A Board of ten Tnjstees, who are also Directors of the company, govern Thrombosis UK. The Trustees have the power to appoint and remove any member to act as Se¢r¢tary to the charity aiid all - vote on the appointment of the Chaiman. Treasurer. and other Honorary Officers. The charity seeks to ensure trustees are appointed to fulfil the changing and on- going needs of the charity's activities and outcomes. New trusfres are appointed with the unanimous approval of existing trustees. All Trustees give freely of their time and expertise and receive no remuneration for their work as trustees. The current list of trustees, who acted throughout the period of review, is given on page one. Trustees unanimously agreed to adopt a rotational model for the role of Medical Director of Thrombosis UK, with each appointee in post for two-three years. In April 2016 Professor Simon Noble accepted an invitation to this role taking up the post in June 2016, with the objective of allowing for fresh ideas to percolate through the organisation. In November 2020 the Trustees agreed to extend retaining current directors for an extended 12 months while Governance work continued with the objective to write Trustee roles and job descriptions and develop a new Constitution. This work continues, and agreement was again in 2023 for this to be extended in order to implement a robust succession plan for Trustees so that skills, knowledge and experience are not lost. but instead, built on to secure the safe governance of Thrornbosis UK. Trustees, meetings are hcld a minimum of twice per year. Email correspoiidence is used to keep Trustees updaled in between meetings and the CEO meets with Thrombosis UK'S Medical Leads and lor Chair of Trustees between four-six times per year to discus5 projects and agreed strategic and directional development. TRUSTEES, RESPONSIBILITIES IN RELATION TO THE FINANCIAL STATEMENTS The trnstees (who are also directors of Thrombosis UK for the purposes of company law) are responsible for preparing the Trustees, Report and the fmancial statcmcnts in accordance with applicable law and Uiiited KingdoiM Accountiiig Standards (United Kingdom Generally Accepted Accounting Practice). Company law requires the truste¢5 to prepare financial statements for each financial year. which giv¢ a true and fair view of the stste of affairs of the charitable company and of the incoming resource5 and application of resources, in¢luding the income and expenditure, of the ¢harAtable wmpany for the year. 13 THROMBOSIS UK Reglslered Cbarity No: 1090540 Company No.: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR ENDED 31 JANUARY 2024 In preparing these financial statements, the trustees are required to.. Select suitable a¢¢ourLting policies and then apply them consistently. Observe the methods and principles in th¢ Charities Stat¢m¢nt of R¢comm¢nded Pra¢tice (SORP). Make judgements and estimates that are reasonable and prudent. State whether applicable UK Accounting Standards have been followed. Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in operation. The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charitable company and enable them to ensure that ihe financial stafrments comply with the Lompanies Act 2UU6. '1'hey are also responsible tor sateguarding the assets ot. the charitable company and hence tor taking reasonable steps f()r the preventinn and detectinn nf fraud and nther irregularities. In accordance with company law. the Trustees certify that: so far as we are aware, there is no relevant audit inforniation of which the company's auditors are unaware; and a5 Trnstees we have taken all the steps that we ought to have taken in order to make ourselves aware of any relevant audit inforn]ation and to establish that the wmpany's auditors are aware of that inforniation. The trustees are responsible for the maintenance and integrity of the corporate and financial inforniation included on the charitable company's website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions. AUDITORS The Auditors, Messrs Couch Bright King & Co., have express¢d their willingness to continue in office and a resolution proposing their re-appointment will be put to the Trustees at the forthcoming Annual General Meeting. SMALL COMPANY EXEMPTION This report has been prepared in accordance with the provisions applicable to companies entitled to the small companies, exemption. STATEMENT AS TO DISCLOSURE OF INFORMATION TO AUDITORS The Tn￿tteS who were in office on the date of approval of the financial statements have confimied, as far as they are aware, that there is no relevant audit inforniation of which the auditors are unaware. Each of the TNstees have confirnied that they have taken all the steps that they ought to have taken as Trustees in Order to make themselves aware of any relevant audit illformation and to establish that it has heen c(Jmmunicated t() the auditnr%. RESERVES POLICY In the course of the development of the Charity we will take account of the need to have reserves, and a policy. to honour future funding commitments that we make. We will also ensure that funds are sufficient to cover one year's charitable activity plus sufficient funds to cover all operating costs of the charity. IUSK ASSESSMENT We consider the systems we have in place for the day-to-day operation of Thrombosis UK to be appropriate to our Current size of operation, but we are aware that as we grow, we will need to develop and implement procedures and reporting regimes to mitigat¢ the risks associated with running a charitable compatly. 14 THROMBOSIS UK Registered Charlty No: 1090540 Company No.: 4354472 TRUSTEES, ANNUAL REPORT FOR THE YEAR EfqDED 31 JAIYUARY 2024 PUBLIC. BENEFrr The Thistees confirm, to the best of their knowlcdge and belief, that they have eomplled wlth Sectlott 4 of The Charitles Act 2011 ill respect of having due regard to Public Benefit Guidance published by the Charity Commission. Approved by the Trustees on: O¢tober2024 Prnf lan M Fran Trustee 15 INDEPENDENT AUDITORS, REPORT TO THE MEMBERS OF THROMBOSIS UK Registered Charity No: 1090540 Opinion We have aiidited the financial statements of Thromhosis ITK for the year ended 318t January 2024 which compri.se the primary statements such as the Statement of Financial Activities includAng Income and Expenditure Account, the Balance SheeL the Statement of Cash flows and the related notes. The financial reporting framework that has been applied in their prepat*ion is applicable law aiid Uiiited Kingdom Generally Accepted Accounting Practice including FRS 102 'The Financial Reporting Standard applicable in the UK and Republlc of Ireland (United Kingdom Generally Accepted Accounting Practice). In our opinion the financial statements- give a true and fair view of the state of the charitable company's affairs as at 3 1st January 2024 and of its incoming resources and application of resources. including its income and expenditure, for the year then ended. have be.en prnpe.rly pre.pare,d in xe.c.ordanc.e. wilh T Inited Kingdnm CTenerAlly Accept£d Accnunting Practice applicahle tn smaller entities- have been prepared in accordance with the requirements of the Companies Act 2006. Basis for opinion We conducted our audit in accordance with International Standards on Auditing (UK) (ISAS (UK)) and applicable law. Our responsibilities under those standards are further described in the Auditor's responsibilities for the audit of th¢ financial statements section of our report. We are independent of the charitable company in a¢¢ordance with the ethical requirements that are relevant to our audit of the financial ststements in the UK, including the FRC'S Ethical Standard, and we have fulfilled our other ethical responsibilities in a¢cordan¢e with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion. Conclusions relating to going concern In auditing the financial statements, we have ¢on¢luded that the trustees, LLse of the going concem basis of a¢¢ounting in the preparation of the financial statements is appropriate. Based on the work we have performed, we have not identified any material uncertainties relating to events or ¢oDditions that. individually or colle¢tively, may cast signiflcant doubt on the charitable company's ability to continue as a going ¢on¢ern for period of at least twelve months from when the finanGial statements are authorised for issue. Our responsibilities and the responsibilities of the trustees with respect to going wncem are described in the relevant sections of this report. Other inforniation The other inforniation comprises the inforniation included in the trustees annual report, other than the financial statements and our auditor's report thereon. The trustees are responsible for the other inforniation contained within the annual retK)rt. Our opinion on the financial statements does not cover the other information and. except to the extent otherwise explicitly stated in our report. we do not express any form of assurance conclusion thereon. Our responsibility is to read the other information and, in doing so, consider whether the other information is materiaIly incon515tent with the financial statements or our knowledge obtained in the course of the audit or othenvise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements. we are required to determine whether tlkis gives rise to a material misstatement ITh the fLnancial slatements themselves. If, based on the work we have performed. we conclude that there is a material misstatement of this other information, we are required to report that fact. W¢ have nothing to report in this regard. Opinions on other matters prescribed by the CoJnpanie5 Act 2006 In our opinion, based on th¢ work und¢rtak¢n in the course of the audit: the infomiation given in the trustees, report {incorporating the directors, report) for the financial year for which th financial statements are prepared is consist¢nt with the financial statements; and the trustees. report has beeii prepared in accordance with applicable legal requirements. 16 INDEPENDENT AUDITORS, REPORT TO THE MEMBERS OF THROMBOSIS UK Registered Charity No." 1090540 Matter8 on which we are requlred to report by exception In the light ot our knowledge and understanding of the charitable company and its environment obtained in the Course of the audit, we have not identified material misstatements in the trustees, report. We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion.. adequate accounting records have not been kept, or retums adequate for our audit have not been received from branches not visited by us- or the financial statements are not in agreement with the accounting records and re￿rns. or certain disclosures of trustees, remuneration specified by law are not made. or wc havc not received llll the infomrAtion L￿d explanations we roquiro for our audit. or the trustees were not entitled to prepare the financial statements in ￿CordanCe with the small companies, regime and tsk¢ advantage of the small companKes' exemptions in pr¢paring the directors, report and from the requirement to prepare a stralegic report. Responsibilities of trustees As explained more fully in the Trustees, Responsibilitie5 Statement set out on page 13, th¢ Trustees (who are also the directors of the charitsble company for the Pu￿OseS of the company law) are responsible for the preparation of the financial ststements and for bcino 5atisfi¢d that they give a true and fair view, and for such intemal conlrol as the trustees deterniine is necessary lo enable the preparation of finaD¢ial statements that are free from material misstatenien¢ whether due to fraud or error. In preparing the financial statements, the trustees are responsible for assessing the charitable Company's ability to continue as a going con¢¢rn, dis¢losing, as applicable, matters related to going concern and using the going concem basis of accounting unless the tmstees either intend to liquidate the charitable company or to cease operations, or have no realistic alternative but to do so. Auditor's responsibilities for the audit of the finaneigl statements Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor's report that includes our opinion. Reasonable assurdnce is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAS (UK) will always detect a malerial misstatement when it exists. Misstatements can arise from fraud or error atLd are considered material if. individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements. Irr¢gularities. including traud, are instances of non-compliance with laws and regulations. We design procedures ITh line with our rcswnsibilities, outlincd above, to detect matcrial misstatcmcnts in respect of irrcgularitics, including fraud. 1hc spccific proccdures for this engagement and the extent to which thcsc arc capable of detecting irrcgularitics, including fraud is dctailcd bcLow: We have. Obtained an understanding of the legal and rcgulatory framework applicable to thc cntity and how the entity is complying with that frdmcwork. Obtained an understanding of the ¢ntity'5 policies and procedures on compliance with laws and regulations, including documentation of any instances of non-¢ompliance' Identified the laws and regulations that hav¢ significance in the context of the entity. Obtained an understanding of the entity's risk assessment process, including the risk of fraud; Assessed and evaluated the susceptibility of the entity's financial sthtements lo material mi3Statement. through error and 17 INDEPENDEiYf AUDITORS, REPORT TO THE MEMBERS OF THROMBOSIS UK Registered Charity No: 1090S40 Itnplemented pro¢¢dures to enable the identification and testing of unusual or unexpected journal entries. Evaluated the assumplions and judgements used by management within signifi¢ant accounting ¢stimates and assessed if these indicate eviden¢¢ of matia2em¢nt bias. Tested significant transactions, in particular the evoluotion of the business rat10t￿le for any which appear unusual or outside the ¢ompany's Thornial course of business. Reviewed the financial statements and iested the dtsclosures against supporting documentation. Comtnunicated relevant matters (including Ihose aix)v¢) to all Membe￿ of the audit team lo ensure they understood the risks sp¢¢ific to the entity and the audit procedures plaDn¢d to mitigate these. Because of the inherent limitations of an audlt, there Is a risk thai we will iitjl J¢l¢LI all ii'i'egulai'ilies, including thoyc Icading to a material misstatement iTh the financial statements or non