Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## **ANNUAL REPORT & ACCOUNTS 2023** Annual Report and Financial Statements For the Year Ended 31 December 2023 SUDC UK – registered charity in England and Wales 1175413 1 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## CONTENTS |Reference and Administrative Details|2| |---|---| |Trustees**’**Report|3| |Independent Examiner**’**s Report|16| |Statement of Financial Activities|17| |Balance Sheet|18| |Notes to the Financial Statements|19| ## SUDC UK Reference and Administrative Details |Charity|name|SUDC UK|Accountant|Carter & Co| |---|---|---|---|---| |Charity|number|1175413||19 Warren Park Way
Enderby| |||||Leicester| |Trustees||Camilla Gooden||LE19 4SA| |||Helen Charalambous||| |||Anne Elizabeth Milliken||| |||(The SUDC Foundation)||| 2 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## SUDC UK TRUSTEES **’** REPORT Organisation of the Charity CIO - ASSOCIATION Registered 27 Oct 2017 as amended on 11 Jul 2023 ## Committee The SUDC UK Board of Trustees at the date of the approval of this Report were: Camilla Gooden Helen Charalambous Anne Elizabeth Milliken 3 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## ABOUT US Founded by bereaved mothers in November 2017, SUDC UK is an independent, national charity registered in England and Wales, dedicated to Sudden Unexplained Death in Childhood. SUDC UK operates consistently with the mission and broad global strategic objectives of our international affiliate, the SUDC Foundation. The SUDC Foundation is represented by a Trustee on the SUDC UK board. Tragically, the incidence of sudden unexplained death in childhood (SUDC) is unchanging. The Office of National Statistics estimates that 40 children are affected every year in England and Wales alone: 1-2 seemingly healthy children are dying suddenly every fortnight without reason. SUDC has had limited attention and investment and there has been minimal research to understand these tragedies. Currently, we cannot predict SUDC or identify which children are at risk and SUDC deaths continue to devastate families year on year. There is such potential to save lives and change these statistics. With collaboration, expertise and bravery we are influencing change to stop children dying without reason. Since our launch in 2017, we have been working to understand the needs of affected families and professionals. We support, advise and advocate for SUDC families nationwide, championing consistent, compassionate medical care with urgency and equality. Our charity is expertly supported by SUDC Foundation resources and services. Our expert advisory board of unrivalled UK professionals and academics has expertise and influence in SUDC and relevant specialist areas in community paediatrics, pathology and child death review. Their expert active participation in SIDS and SUDC research projects and conferences optimises national and global collaboration. Working together, we will improve SUDC medical education, optimise UK data collection, influence policy and promote and fund scientific research to improve care and save lives. In 2021 SUDC UK implemented a 3-year strategy in consultation with a focus group of bereaved SUDC parents and volunteers, keeping the focus on our aim of eliminating sudden, unexplained death in children and young people from 1-18 years while raising awareness and supporting bereaved families in the UK. **----- Start of picture text -----**
OUR STRATEGY OUTLINES 4 KEY OBJECTIVES:
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£ 
Raising the funds necessary Easing the Activism for improved Supporting UK family
to successfully impact experience of awareness of SUDC and professional
the future prediction and SUDC-bereaved and funding for engagement in SUDC
prevention of SUDC by families in this medical research research
granting to medical research country
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4 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## OUR VALUES ## Collaboration with families Founded by bereaved parents, SUDC UK values the opinions and efforts of families affected by SUDC and it collaborates with this community to further its mission ## Collaboration with medical professionals and child death experts SUDC UK believes close collaboration with the SUDC Foundation and other related national organisations will help further SUDC UK’s mission ## Collaboration with the scientific community SUDC UK believes funding, international collaboration, consistent data collection and increased professional engagement in SUDC research is crucial for Sudden Unexplained Death in Childhood to become predictable and preventable ## Information and Empowerment SUDC UK believes accurate and consistent information should be available to all families affected by the sudden unexpected and often unexplained death of a child, so they are informed and empowered, and understand how to access relevant national and international resources 5 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## 2023 IMPACT IN NUMBERS SUDC UK registered family members **254** to date representing 155 families. **72 50%** newly registered members annual increase in this year representing 51 the number of families. families registered with SUDC UK. **62% 24 29** professional SUDC UK increase in conferences, articles, SUDC UK meetings or including 12 in the funds available training. national press, hard to directly support copy and online. scientific research. invested in **£172 196** SUDC research **,** and an additional **£85 000** designated **,** to support UK research approved by our research review process in the next open call. **5** families referred to SUDC research projects for further investigation and to contribute to wider learning to help prevent future deaths. **32** of the 51 families who registered in 2023 were supported with individual case advocacy or 1-1 support. **60** parents/carers and 29 siblings attended SUDC UK in-person family events. 6 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## GRANTS TO MEDICAL RESEARCH We are proud to be the only charity in the UK helping families to find answers when their child has died suddenly and without reason. In 2023, we granted £172,196 to the SUDC Research and Registry Collaborative, a global, ground-breaking project comprising more than 30 multidisciplinary investigators who are working together to understand and prevent sudden unexplained deaths in children. Our member families are so grateful for the learnings that have already impacted medical education and care. _I find myself on a quest to find out why my beautiful, healthy boy fell asleep with my ultimate aim to be for his legacy to live on and help save other children in the future._ _An SUDC mum_ This brings our total grant to date of **£545 196 ,** to the SUDCRRC as a huge achievement. In 2023 , SUDC UK also designated an additional **£85 000 ,** to support UK research approved by our research review process in the next open call. 7 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## SUPPORTING FAMILIES ## Supportive events We connect bereaved families across the UK with others who understand the devastation of SUDC. We had the privilege of hosting two family days this year - at London Whipsnade Zoo, and a new additional location, Yorkshire Wildlife Park - as well as our annual virtual event in June, “Stars for Our Children” as a positive act of remembrance and community. In October, we also hosted an ‘Reflect, Restore, Renew’ Retreat, in memory of Autumn Garwood. This supportive event provided time and space for 12 recently bereaved parents to meet, listen and share with others who have suddenly lost a child, guided by caring and supportive experts. September marked our first SUDC Dad’s meal, where 7 fathers met in a relaxed and safe place, for dinner and drinks. _The grief of losing a child can sometimes be the loneliest place and due to SUDC being so uncommon there are very few people that can understand. Meeting others further into this journey helps so much and shows no matter how heart-breaking life is at the moment, there is still a future_ _An SUDC Dad_ **----- Start of picture text -----**
Stars
For Our
Children
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## Advocacy Every year, more families are accessing support and connecting with SUDC UK earlier in their journey. The sudden, unexplained death of a child over the age of one who otherwise appears healthy has profound, enduring effects on the health and wellbeing of affected families. The direct support SUDC UK provides is vital, as the sudden and unexplained nature of SUDC exacerbates feelings of confusion, anger, guilt and isolation. We help bereaved families - and professionals responsible for their care - navigate the complex child death investigation, genetic analysis and sibling screening and signpost to expert counselling. We directly support and advocate for UK families as they navigate the child death process and grieve the loss of their child. This year alone, 32 of the 51 families who registered in 2023 requested and were supported with individual case advocacy or 1-1 support. Further training and increased awareness activities are sure to continue this hopeful trend, so that no family grieves alone. In 2023 SUDC UK began acting as the official key worker in Oxfordshire, consistent with the role described in English statutory guidance for the child death process. We supported two families in this way and attended our first child death review meeting, acting as a voice for the family with essential feedback to help local learning and accurate data collection for the regional Child Death Overview Panel (CDOP) and National Child Mortality Database (NCMD). 8 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## RAISING AWARENESS ## Public Awareness 2023 has seen more SUDC coverage for SUDC than ever before. Public awareness is crucial. It makes a difference to those affected and brings hope and visibility to the cause. January launched with a momentous milestone for the charity, an historic, inaugural Westminster Hall parliamentary debate on SUDC, led by the Rt Hon Kwasi Kwarteng, MP on behalf of his constituents Julia and Christian Rogers. The first debate on this topic, SUDC UK were invited to brief the parliamentary research unit and we helped our community engage MPs with consistent key messages. All MPs in attendance supported the key issues, shared the devastating stories of their constituents and reiterated the need for SUDC research, medical education and public information. This was a top story on BBC online news. In March, for our SUDC Awareness Campaign, SUDC families and friends arranged for their local landmarks to light up in SUDC colours, including Barrow in Furness Town Hall in memory of a little girl and Blackpool Tower in memory of a little boy, and all other precious SUDC children. This year, our many courageous families have shared their own stories and SUDC coverage has been widespread, including radio, tv and press features, including: BBC news and online, Times Radio, RTÉ Radio 1 (Ireland), BBC Radio 4’s World at One Show, ITV New Granada, Daily Mirror, Sunday World (Ireland), Woman’s Own and Fabulous magazine. _The words_ _**‘** Sudden Unexplained Death in Childhood_ _**’** have never been spoken before in Parliament and SUDC is now on the government agenda. We hope meaningful actions and more debates will follow. This was an important day in history for children. SUDC UK CEO, Nikki Speed_ 9 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## Professional awareness SUDC UK eases the experience of SUDC-bereaved families in this country. We ensure that all UK SUDCbereaved families are aware of SUDC UK prior to, or immediately following their loss via professional referral, our website or SUDC UK charity public awareness campaigns. expert organisations to discuss SUDC. Advocated for by SUDC UK and hosted by NHS England and the DHSC, the aim of the Round Table was to agree on actions, both collective and within organisations, to improve training and awareness of SUDC. SUDC UK presented at the event it was attended in-person by representatives of over 20 different professional organisations including Clinical Royal Colleges, Police and NCMD. To improve awareness of SUDC facts and resources and enhance professional engagement with SUDC UK, we have developed an education programme for UK professionals. We are really excited about the outcomes from this national professional meeting, where we were able to act as a voice for SUDC families. We highlighted the need for coordinated thoughtful, timely processes and care in the aftermath of a SUDC tragedy. We are proud to be impacting national guidelines on child death, with progress towards national training, improved Joint Agency Response (JAR) guidelines and an appropriate and consistent care pathway. This year SUDC UK recruited three registered parents, who are also police professionals, to support the College of Policing to update their SUDIC investigator training. This training now includes SUDC UK resources and impactful videos of SUDC parents sharing their experience. In May, SUDC UK scientific advisor, eminent paediatrician and SIDS/SUDC expert Peter Fleming CBE presented a keynote talk entitled “Understanding Sudden Unexpected Death in Children over 1 Year of Age” at the Royal College of Paediatrics and Child Health (RCPCH) 2023 conference. SUDC UK was honoured to co-author this national NCMD report which reviews national population data on unexpected child death for the first time. In September, our CEO Nikki Speed and Jo Garstang co-authored a paper featuring in Paediatric Child Health, aimed at paediatric trainees. This provides a valuable new SUDC UK resource and is essential reading for child death review professionals and paediatricians. Throughout the year SUDC UK were invited to consult on the Royal College of Pathology SUIDC guidelines which were published in November 2023. These now include links to charity resources and videos and up-to date investigation and care recommendations. In July, we celebrated the inaugural government-led Round Table meeting on Sudden Explained Death in Childhood. The meeting was convened following the Westminster Hall debate led by the Rt Hon Kwasi Kwarteng MP to bring together 10 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## ENGAGEMENT IN SUDC RESEARCH There is under investment and a lack of dedication to SUDC scientific research globally, but we exist to change this and passionately support UK family and professional engagement in SUDC research. We share information on all known and relevant current research projects with families and strengthen the professional relationship with other charities and organisations who fund and support SUDC-related research and/or support SUDC families. In December 2022, a ground-breaking report from the National Child Mortality Database recommended research into SUDC should be prioritised. Realising that this report is important for families, and everyone deeply affected by SUDC, we supported a webinar in January, where families heard directly from the report authors about the findings and had an opportunity to ask questions or just listened anonymously. During this webinar, hosted by The Lullaby Trust, our SUDC expert advisor, Professor Peter Fleming CBE unpacked the key findings of the report, before being joined by a panel of the report’s authors including SUDC UK, to answer questions. We are proud to be the ONLY organisation in the UK helping to refer families to the SUDC Registry and Research Collaborative (SUDCRRC) project for enrolment, with 5 families enrolled in research in 2023. Our member families are so grateful for the learnings that have already impacted medical education and care, including raising an association with febrile seizures. Professor Peter Fleming CBE, Expert SUDC advisor 11 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 In March, a call to action regarding information and care following febrile seizures generated more valuable SUDC press coverage. A Prevention of Future Deaths Report concerning the sudden, unexpected death of Louis Rogers’ highlighted that in a third of SUDC cases there is a medical history of febrile seizures. The association between febrile seizures and SUDC needs further investigation and, in our training, SUDC UK will continue to highlight the importance of collecting child death review data on febrile seizures and the following the NICE guidance for febrile seizure management. We will also continue to encourage scientific research to understand the link between febrile seizures and unexplained deaths in the hope of identifying which children are at risk. SUDC UK is immensely proud to have supported a scientific review of the evidence on febrile seizures and their association with mortality, neurodevelopment, and neuropathology. This new publication, written by Laura Gould, SUDCRRC, was supported by the SUDCRRC team led by neurologist, Professor Orrin Devinsky at NYU Langone Health, NY U.S.A. Importantly, the paper reviews the current evidence, suggests next steps for academic work and suggests how professionals should balance reassurance and education for families. https://onlinelibrary.wiley.com/doi/10.1111/epi.17720 SUDC UK supported NCMD to update their data collection forms, create and launch a bespoke supplementary data collection form for sudden unexpected deaths over the age of 1 year. Only with rich and accurate data will we learn from deaths in the hope of preventing them in the future. This is an important milestone for SUDC. In November, SUDC UK championed, helped launch and implement an initiative for whole genome sequencing and analysis for all unexplained infant and child deaths in England. This means that post-mortem tissues can now be retained for the ‘R441 Test’, where the tissues are analysed for a range of cardiac, neurological, and metabolic genes known to be associated with sudden death. Nationally, we can now do our absolute best scientifically to help families search for answers. _..He updated me about A having R441 genetic testing and that her tissue sample was available and that they would oversee that. I’m sure you have been an integral part in this so thank you so much._ _An SUDC mum_ 12 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 **----- Start of picture text -----**
THE IMPACT OF SUDC
ON BEREAVED SIBLINGS
This poster shares quotes from families who wanted to share their experience to raise awareness
of the impact on siblings and their children’s emotional and medical journeys following loss. Nikki Speed PhD SUDC UK and Emily Cooper PhD University of Lancashire
12asked retrospectively if these could be shared for learning, or evidence was collated through a series of family interviews with Dr Emily Cooper. Quotes from families are grouped into 4 themes and some may be upsetting. If you would like to discuss any of the information in this poster, please contact nikki@sudc.org.uk. llllll with that the whole way along… She’s 16… Yeah and losing asibling in such traumatic circumstances and she saw and wasthere for the whole thing, it’s been really hard. Unless I wantto pay private, obviously.therapy, he had to be 5 and even now his 5th birthdayisn’t until September, so if we had to wait it would havebeen detrimental. His separation anxiety is awful, likeeven getting up to go the toilet he’s like “what you doing, where are you going, can I come with you, when are youcoming back?” But my daughter I’ve had to ring the doctors, they couldn’t do anything, we were referred on to a different place who thenreferred us to another, who then referred us to Barnardo’s who said wehave a huge waiting list.Then in year 5 (aged 10) he just could not attend school for a wholeterm. He suffered with PTSD symptoms, depression and reactiveanxiety and we felt so much better when he started seeing aclinical psychologist. With her help he had the conversationsnecessary for him to reprocess his grief and the trauma ofbeing there when we found her. I don’t know what wouldhave happened if we hadn’t found and paid for that support ourselves. James struggled again when he was 12 - there were triggers at home and school. For example, in English they read‘My Sister Lives on the Mantlepiece’ and he was having to read this aloud in class. At this time his new, younger sister was the same ageas the sister who died and this was difficult too.to talk to someone. If it hadn’t been for Mr*** and *the psychologist* it would have taken so much longer to stop grieving like that’.I didn’t want my children to see someone who wasn’t qualified in the right area of what they needed, bereavement and trauma. Eventually socially services paid for someone togo on to get the right training before my children saw her about a year after Sarah’s deathand she was very good.no one locally on the NHS that I felt was experienced enough so we paid for him tohave weekly counselling for 2 years. He is now 17. Sadly, as this came to an end hisdon’t have counselling or anything like that. I did makethe school aware, but they don’t offer anything…METHODS: For her mental health, for the trauma, no, we’ve absolutely struggled At the time they said Taylor was too young for the play Adam had waves of grief and sadness but we felt able to support him. Adam (age 14) said ‘Schools handled it badly and it was really necessary He was 7… I researched extensively for support and child counselling in our area……there’s kind of no real support in the school as they Fast forward to when Charlie is about 15 and he develops PTSD, again there was PARENTS STRUGGLE TO ACCESS HELPFUL BEREAVEMENT SUPPORT FOR SIBLINGSSUDC CAN HAVE LONG TERM IMPACT ON SCHOOL ATTENDANCE AND THE MENTAL HEALTH OF SIBLINGS Parents either shared quotes directly with SUDC UK and were l like we’re here if you need us. There was no like, at that point of being pregnant, there wasn’t really any practical help. It was more like here’s my number if you need me and we were treated in the Rainbow Clinic and again we didn’t really fall into there because we’ve not lost a baby.there’s no need for me to keep reliving the trauma […] It’s been very necessary for us to get that reassurance. That has really contributed to us being able to cope with the anxiety because of course, grief comes with all sorts of things. Two of the other emotions are anxiety and all the stuff wrapped in trauma, you know, panic and sadness and anger and all of that. But the anxiety for the other children is very raw. We didn’t get a bereavement midwife till quite late on and even then, it was very much to be emblazoned somewhere on the computer - comes up as a red flag so thatit will cause her death. She gets really anxious about it. l them, but the anxiety you feel for your living child. And she does, every timeAlana gets ill and she doesn’t understand what something is, she gets worriedread the notes. For me, the fact that we’ve lost a child, and so recently, needs I mean we know his seizures were relevant and Alana doesn’t suffer from l different midwife each time there was an appointment, none of them had[about post mortem results delay] We have three other children like grandfather died. It is thought this new death in the family triggered the just to say they would do the screening anyway, it’s only because we l asked about screening […]. (About illness) you’re on tenterhooks about I had to tell the story about Harry numerous times because we saw a everything.cause anxiety for the health and lives of siblings. 4yourself, you have another child and one on the way and you don’t3 PTSD again but this time also psychosis and nervous ticks. Let me add for Nancy either. I would have liked them to have been proactive at this point my son has never done drugs or drank alcohol, the know if their lives are at risk. And that was the one thing for me else’s available in terms of screening and there’s been nothing psychosis was caused by childhood trauma at the age of 7. as like, I don’t know if Shaun has a heart defect, I don’t know if will probably be on medication for life).that …I’m not sure what else there is, I just don’t know what got really bad and he became suicidal, I had to take mental health support team and he is now well again (although compassionate leave from my work as he had to be monitored way I’d let that happen. Thankfully we have had an amazing 24/7 or committed to a psychiatric hospital and there was no all my other kids are carrying it and we’re kinda just left just We are 2 years on now and there were times when it the SUDIC coordinator did help us sort of, you know, instigate A LACK OF EXPLANATION CAN CAUSE ANXIETY FOR THE HEALTH AND LIVES OF SIBLINGS ringing, ringing, ringing and ringing … it was six months all l together to know if the kids were in any type of danger. THERE IS LIMITED SUPPORT FOR SUDCBEREAVED FAMILIES DURING PREGNANCYwe took up the hospital[…]. l paranoid like with Pippa like she’s had a cough and stuff so The genetics testing was just off our own back um although It just means we’re a bit more I guess cautious slash
CONCLUSION
surviving siblings and pregnancies is rational and siblings may also feel anxious about their own health. They may experience appropriate family screening or additional hospital visits for minor illness to reassure the family. ll l remember the traumatic events at the time of the child’s death. They can have grief complicated by PTSD and struggle to find emotional support. As SUDC effects 1–18-year-olds, siblings are often old enough to If a seemingly healthy child has died unexpectedly, anxiety forProfessionals could make a positive impact on the family experience by proactively assisting them to find the layers of support they need. In SUDC UK’s experience, even if medical screening has been completed and siblings are coping well, families feel reassured by knowing the potential next steps and options should they feel like they need additional help. death in childhood should address the inequality of parents privatelyfunding necessary care, and should be informed by all family members,including siblings. l This evidence supports that any new pathway for sudden unexpected RESOURCES SCAN HERESIBLING
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In 2023, SUDC UK contributed to 24 impactful professional events. For example, training local police, ambulance or paediatric teams, attending meetings as a member of the Northwest London Child Death Overview Panel, leading workshops on SUDC at the national Association of Child Death Review Professionals conference and attending in-person to contribute to the APPG for Bereavement support. SUDC UK presented two posters and supported a workshop at the 4-day International ISPID Conference in Florence which provided an important opportunity for experts to further understanding of others’ work and connect. In addition to our direct work at this meeting, SUDC UK are so grateful to our scientific advisors and academic researchers who presented their data and advocated for SUDC. Contributions to the conference included: l Dr Joanna Garstang presented “Sudden Unexplained Death in Childhood (SUDC) in England and Wales: frequency and classification of deaths”. > l Peter Fleming CBE presented “Understanding Sudden Unexpected Death in Children Over 1 Year of Age”. > l Dr Emily Cooper presented “Identifying Effective MultiAgency Approaches for Bereaved Families”. Dr Emily Cooper, an SUDC parent, academic and SUDC UK ambassador, led the first national project to examine the impact of the multiagency response on SUDC-bereaved families, funded by the University of Lancashire. SUDC UK were members of the small working group for this project, supporting the methodology, family recruitment, interviews and analysis. The results were also presented by Emily at ISPID 2023 (see above), at the ACDRP National Conference in Manchester and were shared in SUDC UK training as unpublished evidence for care recommendations. International engagement and collaboration are essential to make SUDC preventable and during May, our scientific advisory board, our CEO, Nikki Speed, and scientific researcher, Laura Gould and Declan McGuone from the SUDC Registry and Research Collaborative (SUDCRRC) joined other international experts at the Sudden infant death and paediatric forensic medicine conference in Oslo, Norway. International collaboration is integral to progressing understanding of SUDC. The rich 2-day programme provided an important opportunity for different groups to connect and further understand each other’s work. During the year, SUDC UK has strengthened links with national bereavement charities and professional groups related to sudden unexpected death. We have supported and consulted on relevant projects and initiatives associated with child mortality and the child death process including the following two projects: SUDC UK were a stakeholder in a University of Birmingham project ‘ Involving parents and staff in learning from child deaths’ aimed at producing evidence-based resources in 2024 to support consistent key worker activity and child death reviews. _The meeting was a complete success because it brought people together from diverse backgrounds and clinical experiences, to engage in constructive discussion on a very complex set of issues…It helped us to prioritise our research agenda_ _Declan McGuone, Neuropathologist and SUDCRRC researcher_ 13 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## FUNDRAISING In 2023 , we have raised **£299 839 ,** achieving our financial targets through increased community fundraising and awareness campaigns. We have seen extraordinary fundraising achievements this year from families, friends and communities include Oliver’s Wish, Friends of Frankie and UK Games Expo. Challenge events: Paris and London Marathons; the Royal Parks, London Landmarks, Keswick and Warrington half marathons; Sheffield 10k, with 31 runners; Chiltern 50 Ultra; Cotswold Way Ultra Challenge; Remembrance Walk; Stride for SUDC Awareness; Dublin mini marathon; Wicklow gaol break; cycling and The Great Race, a penny farthing endurance competition. Community events have included coffee mornings and afternoon teas, a Brownies sponsored silence and dedicated fundraising from the farming community. We have started to diversify income streams, with Nationwide, our first SUDC UK Advocacy Corporate Champion thanks to a Nationwide Community Grant. December marked our second Big Give Christmas Challenge, raising funds for sibling support and resources in schools. Support from phenomenal community fundraising and generous donations have enabled the charity to employ staff and evolve its services, awareness activities and events for families. This year we have strengthened the SUDC UK team, with three new permanent part-time roles, supporting communications and administration to support growth and sustainability of our charity. Volunteers continue to be vital to the work of SUDC UK working to support all our workstreams: operations, communications, advocacy, support, fundraising and events. We are grateful for the donated skill, knowledge and time from all our volunteers. 14 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## OUR FUTURE In 2024, we hope to benefit from the incredible momentum created this year from heightened public and professional awareness and scientific collaborative progress. We will continue to deliver against our strategic objectives, adhering to our charity values and continually improving our processes and service delivery. To help maintain our performance and support further growth we are recruiting a new staff member to manage SUDC UK fundraising and events. SUDC UK is leading engagement in the infrastructure necessary to help identify the gaps and priorities for SUDC research. Internally, we are preparing to join the Association of Medical Research Charities and evolve the SUDC UK research strategy in preparation for the next strategic cycle (2025-2027) In 2024 we will also be implementing our plan to create a Schools SUDC Toolkit resource to help families and school professionals and building on our work with the Government and national influencers. ## Your support is making a difference SUDC UK is still a very small charity, with only 3 part-time members of staff and 15 volunteers. We punch above our weight because we are passionate, we understand the unmet need, we have a strong belief that we can make a difference and because we have incredible expert advisors, partner charities, professionals, researchers, and supporters - who champion and create change, all on the same journey to raise SUDC awareness, improve care and search for answers. In 2023 the following volunteers and organisations generously gave time, skills and expertise to SUDC UK operations and projects: Vanessa Grzywacz, Julia Rogers, Emily Cooper, Sally Law, Tom Speed, Jo Griffiths, Eleanor Moriarty Wroath, Will Empson, Sarah Laurent, Art Of The Possible Agency (Kat, Tim, Lucy and Caoimhe), Calvermont PR (Laura Gibson). We deeply appreciate their impactful support - thank you! 15 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## INDEPENDENT EXAMINER **’** S REPORT OF THE TRUSTEES OF SUDC UK We report on the accounts of the Trust for the period ended 31 December 2023, which are set out on pages 17 to 22. ## Respective responsibilities of trustees and examiner The trustees are responsible for the preparation of the accounts. The trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) and that an independent examination is needed. It is our responsibility to: l Examine the accounts under section 145 of the 2011 Act; l Follow the procedures laid down in the General Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act; ## Independent examiners statement In connection with my examination, no matter has come to my attention: 1) Which gives us reasonable cause to believe that in any material respect the requirements: l to keep accounting records in accordance with section 130 of the Act; and l to prepare accounts which accord with the accounting records and comply with the accounting requirements of the 2011 Act have not been met; or 2) to which, in our opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached. l State whether particular matters have come to our attention. ## Basis of independent examiner ’ s report Our examination was carried out in accordance with the General Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a ‘true and fair view’ and the report is limited to those matters set out in the statement below. ……………………………….. Carter & Co 19 Warren Park Way Enderby Leicester LE19 4SA 29 October 2024 Date: 16 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## SUDC UK Statement of Financial Activities for the Year Ended 31 December 2023 |**Unrestricted**
**Funds**
**£**
**299,839**
**299,839**
**271,727**
**271,727**
**28,112**
**113,670**
**141,782**
Incoming resources
Incoming resources from generated funds
Note
2
3
Voluntary income
Total incoming resources
Costs of generating voluntary income
Total resources expended
Reconciliation of funds
Total funds brought forward
Total funds carried forward
Resources expended
Costs of generating funds
Net movement in funds|**Unrestricted**
**Funds**
**£**
**299,839**
**299,839**
**271,727**
**271,727**
**28,112**
**113,670**
**141,782**
Incoming resources
Incoming resources from generated funds
Note
2
3
Voluntary income
Total incoming resources
Costs of generating voluntary income
Total resources expended
Reconciliation of funds
Total funds brought forward
Total funds carried forward
Resources expended
Costs of generating funds
Net movement in funds|**Restricted**
**Funds**
**£**|**Total Funds**
**2023**
**£**
**299,839**|**Total Funds**
**2022**
**£**
**278,813**| |---|---|---|---|---| ||**299,839**|**-**|**299,839**|**278,813**| ||**271,727**||**271,727**|**226,013**| ||**271,727**|**-**|**271,727**|**226,013**| ||**28,112**
**113,670**|**-**|**28,112**
**113,670**|**52,800**
**60,870**| ||**141,782**|**-**|**141,782**|**113,670**| All incoming resources and resources expended derive from continuing activities. The charity has no recognised gains or losses for the year other than the results above. The notes on pages 18 to 20 form an integral part of these financial statements. 17 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## SUDC UK Balance Sheet as at 31 December 2023 |Current assets
Cash at bank and in hand
Note
4
Net assets
Restricted funds
Family Retreats
Unrestricted funds
Unrestricted income funds
Total charity funds
Current Liabilities
Other Creditors
The funds of the charity:|2023
£
247,233|2022
£
120,913| |---|---|---| ||105,451
141,782|7,243
113,670| ||141,782|113,670| ||141,782|113,670| Approved by the Board on 28th September 2023 and signed on its behalf by: Helen Charalambous Trustee 29 October 2024 The notes on pages 18 to 20 form an integral part of these financial statements. 18 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## SUDC UK Notes to the Financial Statements for the Year Ended 31 December 2023 ## 1 Accounting policies ## Basis of preparation The financial statements have been prepared under the historical cost convention on a Receipts and Payments basis and in accordance with the Statement of Recommended Practice ‘Accounting and Reporting by Charities (SORP 2019)’, issued in January 2019, applicable accounting standardsand the Charities Act 2011. ## Fund accounting policy Unrestricted income funds are general funds that are available for use at the trustees’ discretion in furtherance of the objectives of the charity. Restricted funds are those donated for use in a particular area or for specific purposes, the use ofwhich is restricted to that area or purpose. Designated funds are unrestricted funds set aside at the discretion of the trustees for specific purposes. Further details of each fund are disclosed in note 7 and 8. ## Incoming resources Donations are recognised when they are received. Incoming resources from tax reclaims are included in the statement of financial activities when received. Investment income is recognised on a receipts basis. ## Resources expended All expenditure is accounted for on a payments basis and has been classified under headings that aggregate all costs related. Costs of generating funds comprise the costs associated with attracting voluntary income and investment management fees. ## Support costs Support costs include central functions. 19 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## ……….. _continued_ ## SUDC UK Notes to the Financial Statements for the Year Ended 31 December 2023 |Donations and legacies
General Giving
Gift Aid tax reclaimed
Bank interest received
3 Total resources expended
Direct costs
SUDCRRC Grant
Cost of sales
Advertising/Promotion
Cost of labour
Contractor costs
Conferences
Events
Offce expenses
Printing, posting and stationery
Professional fees
Travel and subsistence
Accountancy
Bookkeeping
Bank Charges
Just Giving fees
Kindlink fees
Paypal fees
Stripe fees
Gifts
Entertainment
Insurance
Computer costs
2 Voluntary Income|Unrestricted
Funds
£
295,593
3,828|Restricted
Funds
£||Total Funds
2023
£
295,593
3,828|Total Funds
2022
£
277,342
1,254| |---|---|---|---|---|---| ||299,421|||299,421|278,596| ||418|||418|217| ||299,839|||299,839|278,813| |||||2023
£
172,196
3,400
1,587
49,138
4,357
177
14,263
2,518
3,199
3,354
3,904
870
5,113
185
4,176
391
36
14
467
465
283
1634|2022
£
160,000
2,716
2,422
25,674
5,245
-
12,062
3,508
2,698
2,610
674
840
-
184
3,845
344
10
9
308
577
420
1,868| |||||271,727|226,013| 20 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## SUDC UK Notes to the Financial Statements for the Year Ended 31 December 2023 ……….. _continued_ |4 Creditors
Creditors
Accruals
SUDCRRC Approved Grant
PAYE creditor
Pension creditor|2023
£
2,065
870
100,000
2,116
400|2022
£
6,403
840
-
-
-| |---|---|---| ||105,451|7,243| ## 5 Related parties ## Controlling entity The charity is controlled by the trustees |8 Net assets by fund
Current assets
Creditors
Net assets
6 Analysis of funds
General Funds
Donations and Legacies
Restricted Funds|Incoming
Resources
£
299,839|Resources
expended
£
(271,727)|At 31st
December
2023
£
28,112| |---|---|---|---| ||299,839|(271,727)|28,112| ||||| ||299,839|(271,727)|28,112| ||Unrestricted
Funds
£
247,233
(105,451)|Restricted
Funds
£
-
-|Total Funds
2023
£
247,233
(105,451)| ||141,782||141,782| 21 Docusign Envelope ID: 1633E2C6-8CB5-4D90-A27E-326E74E773AE SUDC UK ANNUAL REPORT 2023 ## SUDC UK Statement of financial activities by fund Year Ended 31 December 2023 |Incoming resources
Incoming resources from generated funds
Voluntary income
Bank interest received
Total incoming resources
Resources expended
Costs of generating funds
Costs if generating voluntary income
Total resources expended
Net movement in funds
Reconciliation of funds
Total funds brought forward
Total funds carried forward|Restricted
Income Fund
2023
£|Restricted
Income Fund
2022
£|Unrestricted
Income Fund
2023
Unrestricted
Income Fund
2022
£
£
299,421
278,596
418
217
299,839
278,813
271,727
226,013
271,727
226,013
28,112
52,800
112,108
59,308
140,220
112,108| |---|---|---|---| ||||| ||||| ||||| |||1,562
1,562|| This page does not form part of the statutory financial statements 22 Docusign Envelope ID 1633E2C6-8CB54D90-A27E-326E74E773AE SUDC*UK Sudden Unexplained Death in Childhood an affiliate 0£ the SUDC Foundation