SICKLE SOCTF.TY Information, Counselling and caring for those wth Sickle Cell Disorders and theirfamilies Charity Reg.. 104 0631 The Sickle Cell Society (A company limited by guarantee) Report and Audited Financial Statements Year Ended 31 March 2024 Company Number 2840865 Charity Number 1046631
The Sickle Cell Society Report and fjnancial statements for the year ended 31 March 2024 Contents Page: Company information Trustees, report 21 Independent auditorfs report 24 Statement of financial activities 25 Balance sheet 26 Statement of cashflows 27 Notes forming part of the financial ststements
The Sickle Cell Society Company infonnation for the year ended 31 March 2024 Patrons: Mr Michael Parker CBE. President Professor Dame Elizabeth Anionwu CBE Baroness Dame Floella Benjamin OBE Rt Hon. Lord Paul Boateng of Akyem Mrs Millicent Simpson Mr Derrick Evans MBE Sir Lenny Henry CBE Sir Clive Lloyd OBE Sir Trevor Phillips OBE Mrs Sherlene Rudder MBE Ms Ellen Thomas Ms Kym Mazelle Mr John Regis MBE Ms Dawn Butler MP Mr Rudolph Walker CBE Rev. Rose Hudson-wilkins MBE Trustees - Director8 Ms Michele Salter Ms Julia McLarty Ms Carol Burt Mr Ganesh Sathyamoorthy Mr Shubby Osoba Mr Nathan Fordwor-Hepburn Ms Lisett Brown Ms Zainab Garba-sani R Kilali Ominu- Evbota Ms Claudette Allerdyce Ms Lanre Ogundimu Chair Treasurer- From 01 April 2023 To 30 September 2023 From 01 December 2023 Mr John James OBE Ms lyamide Thomas Ms Miriam Williams Mrs Clare Rudd Chief Executive NHS Engagement Lead Finance & Administrative Manager Interim Communications and Social Media Officer- To October 2023 Give Blood Spread Love Project Manager- To November 2023 Staff Ms Tracy Williams Ms Olivia Anastasiou Digital Marketing Officer- Blood Donation Helpline & Information Officer Helpline & Information Office Ms Michelle McFarlane Miss Keyah Miller Ms Oluwaseyi Afolabi Parliamentary Officer for SCTAPPG Fundraising Manager Sickle Cell C&YP Mentoring Programme Manager- From July 2023 Mentor Administrator- From September 2023 Give Blood Spread Love Manager- From March 2024 Communications Manager- From June 2023 Communication Officer- From October 2023 Ms Sandra Reyes-Hayduk Ms Addassa Follet Ms Emma Piper Ms Sarah Babalola Ms Paula Shutt Ms Rachel Simpson
The Sickle Cell Society Company inforniation for the year ended 31 March 2024 Ms Rashae Peart Sickle Cell & Genomics England Partnership Manager- From November 2023 Volunteer Co-ordinator- From October 23 - January 2024 Ms Lorraine Owusu
The Sickle Cell Society Company infomiation for the year ended 31 March 2024 (continued) Registered address Sickle Cell Society, 54 Station Road. London NW10 4UA Telephone number 020 89617795 Fax number 020 89618346 Website and email address .sicklecellsociety.org, info sicklecellsocie .or Registered charity number 1046631 Company reglstration number 2840865 Auditor PKF Littlejohn LLP, 15 Westferry Circus, Canary Wharf, London E14 4HD Banker National Westminster Bank. Park Royal Branch, Abbey Road, London NW10 7RA Medical Advisors Dr Nellie Adjaye (Retired) Consultant Community Paediatrician Mid Kent Healthcare NHS Trust Professor Dame Sally Davies Rector Cambridge University Cambridge Professor Mark Layton Consultant Haematologist Hammersmith Hospital, London Professor Bernadette Modell Emeritus Professor, UCL, London Professor David Rees Consultant Haematologist Kings College Hospital, London Dr Allison Streetly Consultant in Public Health Public Health England Rachel Kesse-Adu Consultant Haematologist {Adults) Guys and St Thomas Hospitals Professor Eugene Oteng-Ntim Consultant Obstetrician Guy's and St Thomas, Hospital
The Sickle Cell Society Company information for the year ended 31 March 2024 (continued) Scientific advisors Dr Mary Petrou Director, Perinatal Centre University London Hospital, London Dr Kofi Anie MBE Consultant Clinical Psychologist NW London Hospitals NHS Trust Dr Elizabeth Dormandy {Retired) Consultant in Public Health Keisha Osmond-Joseph Barking, Havering and Redbridge University Hospitals NHS Trust Giselle Padmore-Payne Division 3 - Childrens Acute Services The Royal Wolverhampton Hospitals NHS Trust
The Sickle Cell Society Trustees. report for the year ended 31 March 2024 The Board of Trustees of the Sickle Cell Society present their annual report and audited accounts for the financial year ended 31 March 2024 and confirm that they comply with the requirements of the Companies Act 2006, the Charities Act 2011, as well as the Society's Memorandum of Association (Constitution), and the Accounting and Reporting by Charities. Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard 102 applicable in the UK and Republic of Ireland {FRS 102). These statements relate to the funds of the Society, its core activities, stakeholders, engagement and coSlaboration in research and development. THE CONDITION Sickle Cell Disorder {SCD) is an inherited blood condition that affects red blood cells, which are responsible for carrying oxygen from the lungs throughout the body. In individuals with SCD, the normally round and flexible red blood cells take on a crescent or sickle shape. These abnofmally shaped cells are rigid, sticky, and prone to breaking easily, leading to anaemia. They also tend to clump together, blocking blood vessels and causing severe pain known as a "sickle cell crisis., These crises can last from a few hours to several weeks and often require hospitalisation for treatment with potent painkillers, although milder crises can sometimes be managed at home. Over time, people with SCD may suffer from organ damage, affecting the liver, kidneys, lungs, heart, and spleen. These complications often lead to disabilities. While bone marrow transplants have shown promise as a treatment, they come with significant risks and complications and are not a simple cure. Sickle Cell Disorder is one of the most common genetic conditions both in the UK and globally. In England, 1 in 77 babies tested is found to be a carrier of the sickle cell trait. Despite advances in NHS specialised services and clinical care, there remain significant challenges in service support, awareness, and understanding of the condition. This has been highlighted by recent peer reviews of NHS Sickle Cell Services and the Sickle Cell and Thalassaemia All-Party Parliamentary Group's report, "No One's Listening" published in November 2021. England has a national antenatal and newborn screening program for sickle cell disorder. All pregnant women are offered screening to determine if they carry the gene for SCD, with subsequent screening offered to the baby's father if the mother is a carrier. These screenings can present complex and difficult choices for parents, especially when there is a lack of understanding about the condition among both parents and healthcare professionals. Additionally, all newbom babies are tested for the sickle cell gene to ensure early diagnosis and management. OUR CORPORATE STATUS The Sickle Cell Society was founded in 1979 by a group of healthcare professionals, individuals and families affected by sickle cell disorder. The Society was later established under a Memorandum ofAssociation with the objects and powers of2 charitable company and has been governed underthose Articles of Association, since 1993. Under those Articles, the Society is limited by guarantee not having a share capital. Each member of the Society is liable to contribute £1 towards the liabilities of the Society in the event of liquidation. The Society's charity registration number is 1046631 and the company registration number is 2840865. The Head Office is located at 54 Station Road, London. NW10 4UA.
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 OUR MISSION AIMS AND OBJECTIVES CHARITY OBJECTIVES Our charitable purposes as set out in the objects contained in the Charity's Memorandum of Association are.. To provide relief for persons with sickle cell disorders. The relief of poverty among members of the immediate family of persons who are suffering or who, immediately before their death, suffered from sickle cell disorders. The provision of recreational activities for affected individuals and their families. The improvement of public information, assisting in research into the causes, treatment of the condition and dissemination of such information. The aims of the Charity are to assist and enable people with sickle cell disorder to realise their full potential. In order to achieve this, the Society's resources are used to undertake the following activities.. 1. Annual Children's holidaylFamily Retreat and children's activities. 2. Health Education and I nformation services including.. Leaflets, exhibitions, books, audio visual materials. conferences, seminar5, workshops and partnership neOrkIng Website, e-mail newsletters, social media and communication activities Patient and carer education days Telephone helpline and information advice 3. Collaborating on medical and non-medical research on sickle cell with a wide range of stakeholders. 4. Assisting to influence statutory policy and programmes of the government, such as NHS Screening Programmes, National Institute for Health and Care Excellence (NICE) developments and work of the All Party Parliamentary Group (APPG) for Sickle Cell and Thalassaemia. 5. Developing strategic collaborations and partnerships both nationally and internationally. HOW OUR ACTIVITIES DELIVER PUBLIC BENEFIT The Trustees have given due consideration to the Charity Commission's published guidance on the operation of the public benefit requirements. The Trustees are satisfied that the Society's aims outlined above continue to be met and satisfy the public benefit test by virtue of taking action to help people with sickle cell disorder and their families. HOW WE ARE ORGANISED The Memorandum of Association, as amended in 2013. allows a maximum of 10 individuals from the membership and externally, to be selected on to the Board of Trustees each year. to serve for up to 3 years. The Trustees ofthe Society are also the Directors ofthe Charity. In addition, a pool of Advisors and Patrons selected by the Board for their individual professional and community standing, strategically support the Trustees, volunteers and staff. The Board meets monthly and sub-committees and ad-hoc working groups complement meetings. The Chief Executive heads a small team of paid stsff in addition to a pool of volunteers and is responsible with the Trustees for the strategic direction and for the day-to-day operational activities of the organisation. The Chief Executive reports to the Chair of the Board. The policy for setting the pay and remuneration of the Chief Executive and employees is set by the Board and benchmarked to equivalent sized charities. Board development The Board of 10 Trustees has 2 members with sickle cell disorder and 4 Trustees are also carers for family members with sickle cell. The Board undertook board development training during
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 Board development (continued) 202312024. All new trustee appointments are open to members and non- members of the Society. All trustee recruitment is by advertisement and application. An interview panel organised by the Chair interviews all shortlisted applicants. All new trustees undergo an induction programme including meetings with the Chair and Chief Executive. New Trustees are also provided with Charity Commission guidance and information for trustees together with a copy of the Nolan principles and code of conduct. SUMMARY REVIEW OF 2023124 This year has been another positive and transformative one for our charity, as we continue to make significant impacts for the sickle cell community- We're especially proud of this achievement given that the charity sector is still recovering from recent challenges, with fierce competition for attention and funds. We extend our heartfelt thanks to our staff, volunteers, Trustees, Patrons, donors, and supporters for their unwavering support. A major highlight of the year was expanding the Children and Young Person's mentoring scheme across London and in the north of England. This expansion allows us to support more young people with sickle cell disorder (SCDI. The guidance our mentors provide is crucial, helping each young person build a better quality of life for themselves, more equipped to manage their physical and mental health, and to find their place in the world. We faced a setback with the revocation of Crizanlizumab, the first drug approved for sickle cell in 20 years. In January 2024, we learned the marketing authorisation had been revoked by the Medicines and Healthcare products Regulatory Agency IMHRAI. Despite this, we remain hopeful that new treatments being assessed by NICE will offer more options for the sickle cell community in the coming year. Our commitment to ensuring the best possible care and support for everyone with sickle cell disorder from birth onwards continued strong. Our blood donation program significantly contributed to the ethnically matched blood stocks needed for people living with sickle cell disorder. More Black donors are needed because of a rise in demand for some rare blood subtypes that are more common in people of Black heritage. Closely matching the blood for people receiving multiple blood transfusions to manage their sickle cell disorder gives these patients the best possible treatment. Our screening program supported families from the preconception stage, and worked with the NHS to ensure sickle cell screening test results are delivered sensitively and effectively. In August 2023 we held our first in- person Family Retreat - for children with SCD and their families. This is an evolution of the Children's Holiday that we held in previous years, and a pilot to see if we could deliver more value to children with sickle cell if they came in their supportive family unit. The retreat was a tremendous success, and delivered a far larger and longer lasting impact than taking just the children away for a break. 29 families joined us from across the UK to a venue in Shropshire. Parents reported that the sense of support and belonging was incredibly positive. It was heartening to hear that the retreat boosted children's self-confidence and provided families with the strength to face the condition's challenges. We remain dedicated to ensuring that people with sickle cell have access to the best care and support, and holding those in decision making positions to account. In November 2023, following on from the care failures highlighted in our 2021 report, 'No One's Listening,, we took a deeper look at sickle cell nursing care in a new report called 'The difference beeen life and death,. Our findings showed the need for vastly more resources, training and support in this critical area of care. and highlighted that not only was no-one
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 SUMMARY REVIEW OF 2023124 (continued) listening, but that lives were still being put at risk. We will continue to campaign for and implement the recommendations from these reports in the coming year. We saw the benefits of the conversations around sickle cell disorder. We have continued to raise discussions with the sickle cell community and other stakeholders primarily to enable more awareness of the condition and funding towards improved services. It is clear that more people are talking about sickle cell, and seeking ways to get involved in action and in finding solutions. We have seen a huge sickle cell transformation programme take place in the NHS as a result, and more opportunities opening up. We are proud of the progress we have made so far, and excited to see the impact of our ongoing efforts. Our dedication to transforming care and outcomes for individuals and families living with sickle cell disorder drives s to continually strive for excellence. We aim to make a lasting, positive difference in their lives. Michele Salter Chair John James OBE Chief Executive KEY HIGHLIGHTS FROM THE YEAR 202312024 STAKEHOLDER RELATIONSHIPS Collaborations are essential for our success, and by working with researchers, clinical experts, people with lived experience, and other key decision-makers, we can make significant impacts. Building strong relationships with stakeholders is crucial for connecting our work with partners globally. Our most important stakeholders are the growing number of patients we represent. Sickle cell disorder is the UK'S fastest-growing genetic condition, yet advancements in care and treatments have been slow. We collaborate with individuals living with the condition, their families, and patient groups to ensure their needs are central to our work. We continued partnerships with organisations like Rare Disease UK, Genetic Alliance, the Anthony Nolan Trust, and the Specialised Healthcare Alliance. Our board members and staff serve on their committees, influencing their strategic directions. Our collaboration with the NHS Sickle Cell and Thalassaemia Screening Programme advanced, as we worked alongside the UK Thalassaemia Society on joint initiatives. We are incredibly proud of the work we have done over the years in this area, and whereas screening for sickle cell is widely available, there is still much work to do. Our work during the year centred around what the results mean to the people who receive them, how they receive results and obtain information and support, and increasing awareness amongst both clinicians, and the people who may carry the gene for sickle cell, and are planning to start a family. We also partnered with numerous organisations. including the National Council for Voluntary Organisations INCVO), UK Forum on Haemoglobinopathies, National Voices, NHS Blood and Transplant, NHS Trusts, NHS England, UK Health Security Agency (UKHSAI, National Institute for Health and Care Excellence INICEI, Medicines and Healthcare Products Regulatory Agency (MHRA), Sickle Cell & Thalassaemia Association of Counsellors (STAC), and other related voluntary and statutory bodies.
The Sickle Cell Society Trustees, report (continued) for the year ended 31 March 2024 STAKEHOLDER RELATIONSHIPS (continued) Additionally, we collaborated with various research and improvement organisations to enhance understanding of sickle cell. These collaborations included the National Haemoglobinopathies Panel {NHPI and their Health Coordinating Centres {HCCs), the National Institute for Health Research (NIHR), NHS Boards, European Medicines Agency {EMAI, NHS Blood and Transplant Clinical Trials Unit, University College London (UCLI, Genomics England, and others. As the secretsriat for the All-Party Parliamentary Group for Sickle Cell and Thalassaemia (SCTAPPG), we continued to highlight key issues and advocate for change. The SCTAPPG works to raise awareness and prioritise sickle cell disorder and other haemoglobin disorders in political discussions. Membership & Support Group Base We have continued our free membership policy, and as of FY 23124, our membership has grown to 3,005 members, from 2,891 in 2022123. We encourage people to join through our website, social media, and events. Members receive newsletters in print or electronic formats, along with regular e-news updates. Due to staff changes in our communications team, the timing of these mailings varied this year, and we aim to get back to a regular routine in the coming year. We serve as the national umbrella organisation for over 40 independent support groups, voluntary organisations, and statutory centres across the UK. Our support base is also active on our social media channels. Medla & Communication Our social media platforms saw continued growth in followers, fostering conversations and engagement around sickle cell news, campaigns and information. To better connect with young people, we launched on TikTok, in addition to our existing presence on Instagram, Faceb¢)ok, X, and Linkedln. Our social media conlent included collaborations with partners and campaigns such as Jeans for Genes, NHSBT for blood genotyping, and the'l Am Number 17" campaign to highlight sickle cell as a rare genetic disorder. We also worked with NHS England on a campaign to raise awareness of pre-payment certificates for prescriptions - to lower the cost of medicalion for people with sickle cell. Our website attracted visitors from 208 countries and territories, all seeking information about sickle cell disorder. This highlights our global reach and solid reputation as a trusted source for sickle cell information. Press and media coverage was strong, with new therapies capturing the attention of major national news outlets. This increased awareness of sickle cell, making it a topic more journalists and the general public are familiar with. We plan to build on this momentum in the coming year to further raise awareness. Helpline and Information Service We offered crucial support and advocacy to people with sickle cell and their families by phone and email. Our team also gave advice to educational and healthcare professionals and other stakeholders. The knowledge, commitment, expertise and lived experience of sickle cell disorder across our full charity staff team supports the delivery of the advice and information we provide. and we obtain specialist advice from our panel of medical advisers, and other partners. This enables us to offer advice to people living with sickle cell on health, schoolleducation, social care, housing, financial assistance, and more. This expertise supports not only
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 Helpline and Information Service (continued) our helpline, but also the website, and our attendance at face-to-face events,. and informs the consultancy services we offer to larger organisations. The advice line team regularly attend and have stalls with literature at community and organisational events, allowing us to engage directly with people living with sickle cell and gather feedback from people in the community, as well as large employers, on how we can best provide support to the community. EDUCATION I INFORMATION AND AWARENESS We observed the United Nations, nominated World Sickle Cell Day on June 19th with the theme "Celebrating Success., We highlighted progress in medical advances for individuals living with sickle cell, the improved standards of care since the "No One's Listening" report, and the event gave us a platform for our ongoing efforts to raise awareness about the condition. On the day, we placed the spotlight on Priapism and launched an animated awareness video we developed in collaboration with experts at Guy's and St Thomas, Hospital, with the support of Boston Scientific. The video featured a young boy's story of his experience of priapism, an unwanted and painful penile erection, which is a medical emergency. The video addressed how teenagers might deal with this challenging situation. The campaign achieved widespread coverage. and won 3 Association of Medical Illustrators awards. We also encouraged people to 'Wear Red for Sickle Cell, to get involved in a fun way, and crucially, to start conversations around sickle cell. The day was an opportunity to take part in sickle cell events and reach people face to face. We also achieved widespread media coverage, with our Chief Executive appearing on BBC TV news on the day amongst the highlights. We achieved broadcast coverage across the UK. working with Vertex, who organised a 'Radio Day, as a tool to generate coverage. The aim was to make listeners aware of sickle cell disorder and the findings of the "No One's Listening" Report. We had a phenomenal result, with the many highlights including.. Over 19 hours of airtime across 124 stalions. The content reached 42,550,000 Prime Time listeners. Coverage on the Radio News Hub, who reach 117 member stations, including Jazz FM, Nation Radio Group and News Radio UK. They have a combined reach of 8,086,000 listeners. SKY News, who broadcast to 34.000,000 listeners. Sickle Cell and Thalassaemia Screening Programme In October 2023, we secured ongoing funding for the Screening Programme Project, jointly with the UK Thalassaemia Society (UKTS). We continue to work collaboratively to help ensure the screening service is underpinned by service user needs and addresses any inequalities that arise. Key Project Achievements: A consultation with users of the screening pathway which culminated in the launch of a report 'it's in Our Genes." Service User Experiences and Feedback on the Communication of Screening Results for Sickle Cell and Thalassaemia, at a national conference on 18 April 2023 attended by 168 stakeholders Recording and dissemination of a 6-minute overview video of how the Sickle Cell Society l UKTS work with the Screening Programme to provide the Servi user voice 10
The Sickle Cell Society Trustees, report (continued) for the year ended 31 March 2024 Sickle Cell and Thalassaemia Screening Programme (continues) Successful submission of two abstracts on the 'lt's in Our Genes, report. resulting in workshop and poster presentations respectively at the London Maternity and Midwifery Festival 2024 and Brighton and Sussex Medical School's Anti-racism in Healthcare conference Contributing service user feedback and experiences to the NHS SCT Screening Programme review of their 'Protocol for Reporting newborn screening results for sickle cell disease and thalassaemia major to parents, targeted at health professionals Contribution to the revised Sickle Cell Society leaflet 'Sickle Cell Disorder and Sickle Cell Trait, to now include a separate a page on screening and preconception testing Raised awareness of sickle cell and screening in the media, at public talks and stalls, webinars and conferences. Family Retreat 2023 From Friday 11th August to Sunday 13th August, 29 families from across the UK (everywhere from Newcastle to Bristol) who had one or more children with Sickle Cell, joined us for a family retreat at the Pioneer Centre in Shropshire for a busy weekend of sickle cell education, adventure activities, networking and fun. We welcomed.. 37 young people with Sickle Cell 19 siblings of young people with Sickle Cell 48 parents This retreat was a pilot, and a departure from the previous 'children's holiday, format of taking only the children with sickle cell away for a break and some respite. This new format of taking the whole family unit away was a resounding success, which delivered a greater impact on the participants. The families had a wonderful time and in feedback.. Families told us that the best part was the children all meeting each other and playing together, and not feeling like their family was the odd one out. Some of them told us that this is the first time they'd felt like they had a true support neOrk that they were able to call on. Some commented that this marked a real turning point for their child. Most importantly perhaps, many of the families reported that they no longer felt alone. During the retreat, the families took part in the following activities- Activity Blitz.. Inflatable Challenge, Abseiling, Zip Trek, Archery. Challenge Course Campfire Yoga Mindful Doodling Fencing Caving Hand Massage and Relaxation Sickle Cell Education Mindfulness Sickle Cell Q&A Arts and Crafts Team Challenge Drama Healthy Living Sibling Mental Health and Wellbeing 11
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 The Family Retreat 2023 (continued) Disco Family Mental Wellbeing Parent Session with a Nurse Counsellor Under 8's Play Sessions Board Games The highlight of the Retreat was the positive community that we created and the families knowing that they are not alone. We received some lovely feedback, some ofwhich is shared below.. 'My daughter .... really came out of her shell, she was a totally different child. She had such a lovely time and made some wonderful new friends who she has kept in contact with. She doesn't like talking about her condition but she was happy to talk to her new friends. For once she wasn't being pulled away from her friends to take medication as they all had to take their medication, so for the first time in 11 years she didn't feel like t17e odd one out." "l am 8 single parent and dont have much of a support nelwork, so it was so nice to be around other parents who I could get advice from and understand what it's like to have a child with sickle Gell, I have met new friends and feel like l also now have a support nelwork." "The best bit was meeting other families just like us. It can often feel isolating as a parent but th8 refre8t showed us we are not alone. "We have learnt a lot and met some wonderful people. We leave with more knowledge about sickle cell and also how to access support we didn't know was available." "She doesn't like lalking about sickle cell and finds it difficult to tell anyone she's in pain, she never says the words 'sickle cell, and doesn't even like me talking about it, but when we came home we had a very long talk and she really opened up about having sickle cell. She was so much more confident ... that's such a positive thing because I have been trying to get her to talk about sickle cell for years and she would just say she doesn't want lo talk about it, but since the retTrat and meeting so many other p80ple who also have sickle cell she has opened up so much more." PARLIAMENTARY & POLICY WORK The Sickle Cell & Thalassemia APPG We are incredibly proud of the progress in improving care for people living with sickle cell disorder, since we released the 'No One's Listening, APPG report in November 2021. The Sickle Cell & Thalassemia All- Paty Parliamentary Group {SCTAPPG) aims to raise awareness and promote sickle cell disorder and other haemoglobin disorders on the political agenda. Accountsbility is achieved through the Group's Chair, Janet Daby MP. We work closely with the SCTAPPG through our work as secretariat, and with our Parliamentary & Policy Officer. The Group's AGM was held on 121h June 2023 and attendees heard from Dr Dianne Addei, Senior Public Health Advisor for the National Healthcare Inequalities Improvement Programme. Dr Addei's presentation provided a summary of the National Sickle Cell Healthcare Pathway Review, highlights include The quality improvement programme created a timely opportunity to review the entire sickle cell pathway after the publishing of the 'No One's Listening, report. 12
The Sickle Cell Society Trustees. report {continued) for the year ended 31 March 2024 PARLIAMENTARY & POLICY WORK (continued) Sickle cell care extends beyond when patients present in A&E with a crisis- and includes multiple specialisms including screening, pregnancy, delivery, primary care, community services and end of life care. Conducting the pathway review included the involvement of lead clinicians, head of departments and the establishment of a Patient Advisory Group for co-production. The pathway review was finalised with 77 recommendations, grouped into 10 themes, and presented to the Executive of the NHS. Rapid attention was given to urgent care when patients present with a crisis. The focus recommendation was the ability of patients to access specialist care at these moments. This included., Not only being seen by a haematologist but those who have knowledge of sickle cell. Efficiency of pain relief. Patient follow up after discharge. The pathway review data also highlighted that a large percentage of patients presented in hospital outside of standard working hours. The review would therefore look into providing 2417 services. Nottingham University Hospitals Trust was presented as a case study for excellent care provision. The Trust utilised 'A&E Bypass, SO that sickle cell patients went straight to specialist care when attending hospital. The pathway review would be running model pilots in London Metropolitan areas from September 2023. The vision for sickle cell hyper acute units would include one 2417 unit per geographical area. The pathway review also analysed care plans and creating wider access to the documents. The proposal is to make patients, care plans digital, with a roll out scheduled over a few years. In the interim, the London area trials hope to fast-track sickle cell patients, care plans for digital transformation. An interim physical wallet card had been developed to flag sickle cell patients as a medical emergency with the NICE guidelines on the back. These cards would be sent to the Haemoglobinopathy Co-ordinating Centres. A long-term piece of work would be undertaken to review medication and prescription charges. This would include,. Pfe-payment prescription certificate campaign. NHS low income scheme. There would be efforts to flag genetic counselling for sickle cell patients and to educate healthcare practitioners. The team were working with NICE to review the sickle cell guidelines. There would be a stream of work to create care auditing processes to ensure accountability. London and Birmingham had prioritised the sickle cell pathway, so fijnding would be provided for the improvement of community services. This was also being rolled out in other regions. There were also efforts to prioritise sickle 11 research. Going forward, the SCT APPG is focused on ensuring the 'No One's Listening, report recommendations are progressed. Alongside this, the APPG will address longstanding policy issues beyond healthcare, such as housing, prescription charges, benefits, and employment. We're pleased with the progress in various Trusts across the UK, particularly the National Sickle Cell Healthcare Pathway Review, which aims to reduce healthcare inequalities for sickle cell patients. As the report reaches more Trusts. we are receiving increasing requests to discuss its recommendations with hospital teams. 13
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 GIVE BLOOD, SPREAD LOVE. ENGLAND Give Blood, Spread Love (GBSL} works with Black African and Caribbean communities to raise awareness about sickle cell disorder. We explain why people with sickle cell need blood from donors of similar ethnic backgrounds and encourage people from these communities to become regular blood donors. We do this by hosting events with corporate organisations. community groups, sports and leisure agencies, and faith groups, where we share our key messages and calls to action. Social media and online engagement are crucial for GBSL, helping us reach younger audiences and connect with thousands of people through accessible information on sickle cell, blood donation, and related topics. Our volunteer team, the 'Give Blood Squad., includes blood donors, recipients, and those with personal connections to sickle cell. Their lived experiences bring authenticity to our campaigns. Our social media presence continues to grow, with 1,699 followers on our Instagram account, @givebloodspreadlove. The account features educational content on sickle cell and blood donation, personal stories from our volunteers, and various messages and videos featuring influential community figures. In October we were hosted by Amazon's Black Employee NeOrk for their Black History Month event, where we shared our expertise and experiences of sickle cell and blood donation. We also regislered new blood donors alongside NHS8T's Know Your Type Team. In November, we launched a partnership with Saracens Rugby Club and Stone X Stadium. We were delighted to have their support, and for their commitment to raising awareness of sickle cell and the need for more black and mixed race donors. 10,000 fans got to see films about our work, read about us in the match day programme, and heard from our team who were interviewed at halftime on the pitch. They also pledged to donate £2k for every try scored at their match with Leicester Tigers.. 4 tries were scored thanks to Maro Itoje and teammates. Children and Young People Peer Mentoring Our peer mentoring programme supports youths aged beeen 10 and 24. It enables them to meet with a 'peer' or other young person who like them live with sickle cell. and are also trained in mentoring. The programme aims to support young people to improve their understanding of their condition, and improve their emotional and social wellbeing. It provides support for young people going through the process of transition from paediatric to adult services, as well as support with navigating education and employment. In previous years, the programme was only available in the City and Hackney areas of London. In March 2023, we received confirmation from North East London (NEL ICBI that they would fund the programme for another 12 months. A month later we also learned that we would receive two years of funding from all other London ICBS. So far, we have begun recruitment of Lead Mentors, Clinical Leads, and new mentors, as well as a Clinical Director for the programme. 14
The Sickle Cell Society Trustees, report (continued) for the year ended 31 March 2024 Children and Young People Peer Mentoring (continued) In January 2024 we received the official news that we are one of only winners forthe Health Inequalities Targeted Call, a competitive process by NHS England, NHS Race and Health Observatory, supported by NHS Innovation Accelerator. We won for our role as catalysts for transformative change in healthcare, and our innovative work in tackling health inequalities, and the Children and Young People's Peer Mentoring Programme was cited as an example of our work in this area. The accolade allowed us some funding to roll the peer mentoring programme out into the North West and Sheffield. We are excited by the promise this holds for young people living with sickle cell. This is what some of our mentees said about the programme '. 'Emotionally it has helped me gain confidence in myself-which in tum has helped me put myself out there.. °The programme has inspired me to leam more about SCD to create awareness in my university and hopefully the world soon." °My mentor has been so helpful to me, through w01ng together and talking regularly with my mentor I have gained a better understanding of my condition. Working with my mentor has enabled me to ask questions about my condition and question how to deal with the impact on my life." Volunteer Coordlnator- Sickle Cell Society During the last financial year, good progress was made in relation to our volunteer programme following the recruitment of the volunteer coordination role which took place in June 2023. Headway was made in key areas such as helpline and information support, volunteer engagement. recruitment strategies, social media initiatives and collaborations with educational establishments and other charities. There were some challenges but overall, the direction of travel is positive. We received 30 new applicants and just under half of these were successfully onboarded and inducted as SCS volunteers. Although the volunteer coordinator was in post for only seven months, there were significant achievements in volunteer coordination, successful recruitment, engagement, and collaborations. The ongoing commitment to improvement, collaboration, and community outreach remains unchanged and a new coordinator is being actively recruited. 15
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 GRANTS AND DONATIONS During the year the Society made funding applications towards core and restricted projects and initiated or nurtured relationships to help to continue to deliver services. The Society received income of £127,262 from corporate supporters. See full list of unrestricted donations of £500 and over listed in note 15. Black Histo Month Black History Month is one of the most active and important months for the Sickle Cell Society. This is the time we see increased engagement across all areas of business. During Black History Month {BHM) 2023, a remarkable £51,997 was raised in support the work of the SCS. This is an incredible achievement and a substantial increase from the £20,000 we received during BHM 2022 and the over £5,000 in BHM 2021. Again, corporate donations have proved vital in ensuring that BHM is a success for the Sickle Cell Society, and continues to show great evidence that income during this special month can keep on increasing. Contributing an amazing £19,708 was C. Hoare & Co. the UK'S oldest privately-owned bank and once again Metro Bank employee raffle raised £5,500, a tremendous increase from the £2,976 they supported us wilh during BHM 2022. It is worth noting that the key message delivered by the SCS to these donors was that of addressing inequilies. In addition to this, most of the corporate donors that approached us in the first place, did so on the basis of being part of their Corporate Social Responsibility (CSRI and Diversity and Inclusion {D&l) initiatives. CONTRACTS During the year the Society received a total of £180,858 for contractual services= The Sickle Cell & Thalassaemia Outreach & Engagement Project is an NHS England formerly known as Public Health England IPHE) funded project in which the Sickle Cell Society works in partnership with the NHS Sickle Cell and Thalassaemia Screening Programme and United Kingdom Thalassaemia Society. Total income for this financial year is £137.858. Vertex Pharmaceuticals (Europe) Ltd, Sponsorship of Patient Education Gene Therapy and Transplantation of Sickle Cell. Total income of £15,000. All You Need to know about The Sickle Cell Society is collaborating with the London Ambulance Service NHS Trust to undertake a research project to find out more about sickle cell patients, experiences of using the ambulance services. including ambulance care, 999 and 111 calls. Total income received £10,000. £10,000 from NHS England to support Sickle Cell Patient Advisory Group. Terumo BCT contributed £8,000 during the year to support the Sickle Cell Society's Podast. 16
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 PLANS FOR THE FUTURE The trustees and staff will continue to work together. We have successfully delivered our charity strategy for the three years up to 31 March 2024. Our five strategic commitments for the next year 202412025 are., 1. Enabling Support Networks 2. Building effective partnerships 3. Achieving impact and sustainability with limited resources 4. Managing our stakeholders 5. Enabling resilient patients and communities During 202412025 we will embark on an inclusive approach to revisit and refresh a new 3 year strategy, building on the good progress we have made as an organisation, remaining focussed on making a positive difference to the lives of those who live with sickle cell disorder and their families. TREASURER'S REPORT l am pleased to present the 202312024 Annual Report and Accounts, my first report since taking up my trustee Treasurer role in April 2023. It has been great to witness at first hand, the excellent work of the charity. l am delighted that the Society has continued to make positive progress for the sickle cell community throughout 2023124. This has been underpinned by sound financial management and governance. It is a significant achievement that the financial year 202312024 is now the fourth consecutive year the Society has achieved a surplus. We started the financial year with a deficit budget of £59,665, however, the Society ends the financial year with a surplus of £265,354 which is £325,019 better than planned. This was achievecl through receipt of restricted funds of£301,527 and unrestricted income of £690,972. Our total income for 2023124 is £992,499 with total expenditure of £727,145.1 congratulate the Society's leadership team and our dedicated staff for this consistent and strong performance. I would also like to take this opportunity to thank our many generous donors, supporters and volunteers for their tremendous support throughout the year. Our good performance financially has been matched by the progressive development of services. Many examples of service delivery for people and families are set out in this Annual report. We look foNard to 2024125 with new aspirations to support the Sickle Cell Community. We hope we can count on you for your continued support. Julia McLarty Treasurer 17
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 STATEMENT OF FINANCIAL POLICIES Investment Policy The Trustees have the power to invest in such assets as they see fit, except for trading purposes. The Society sometimes needs to react very quickly to particular emergencies and has a policy of keeping any surplus funds in short-term deposits, which can be accessed readily. To ensure financial security, the Society needs to secure additional unrestricted funds. Resenles Policy The Trustees of the Sickle Cell Society have set a free reserves policy (which represents total unrestricted funds less tangible fixed assets} of maintaining a minimum ofthree months ofthe Society's total unrestricted expenditure which was £113,722 on 31 March 2024. This policy was met during the financial year to 31 March 2024, with year-end free reserves of£633,421 {2023- £471,852), despite the difficulties encountered with securing grants. The Board updated the reserves policy during 202312024 to ensure that it is appropriate and aligned to the Society's financial performance, assessment of risk and future strategy. Risk Management The Trustees actively review the major risks, which the Society faces on a regular basis and aim to maintain our free reserves at the levels stated in the above reserves policy. Combined with our annual review of the controls over key financial systems, they aim to provide sufficient resources in the event of adverse conditions. The Trustees have also examined other operational risks that we face and confirm that they have established systems to mitigate the significant risks. The main risk is the volatile (short term funding) fi'nancial environment in which the Society operates. This volatility is compounded by the current political and economic climate, notably the economic circumstances resulting from the impacts of Brexit and COVID-19. This uncertainty is likely to continue.. our focussed approach on strong financial management, good governance and review of our reserves policy will help us to mitigate this risk. A fundraising strategy is in place to increase the levels of unrestricted income. The aim is to reverse the current unacceptably high grant-dependent'gearing" and increase the level of unrestricted income reserve, and continued improvement in financial performance. Flnancial review Income this year stands at £992.499 which is £218,902 better than the previous yearfs results. This has been achieved from restricted grant payments of £301,527 and £690,972 from unrestricted donations and contracts. The unrestricted donations consist of legacies, general frjndraising, payroll giving, corporate, individuals, churches, schools, training and consultancy, gift aid and communities, bank interest and contract services. During the year the unrestricted funds incurred a net income of £236,084 (2022123: net income of £156,042). The majority of grants coming into the Society remain under restricted funds to deliver the objectives of the Society. During the year the restricted funds experienced a surplus before transfers of £29,270 {2022123: deficit of £26,633). The total restricted reserves at the end of the year were £346,480 (2022123.. £216,791). 18
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 FUNDRAISING STATEMENT We would like to thank you, our dedicated supporters. for your commitment to our work. Your fundraising endeavours have provided the Sickle Cell Society with invaluable resources that enabled us to reach out to more and more people living with sickle cell. Without your help, we could nol carry out with the crucial work we do. Thanks to you, we have been able to roll out new initiatives and expand existing ones that meet the daily changes and challenges experienced by people living with sickle cell. The Sickle Cell Society is bound by the Code of Practice dictated by the Fundraising Regulator and abides by the ethical standards set by the Regulator. We pride ourselves, through our fundraising endeavours, of maintaining the highest standards possible in order to meet the regulations. Our approach has always been to safeguard those who are most vulnerable from inappropriate frjndraising practices and conduct ourselves with the utmost professionalism. We are acutely aware that fundraising is one of the key ways in which we interact with our supporters. donors and the general public. Therefore, our approach ensures that our fundraising practices and reputation are maintained at the highest level. We strive to be an approachable and professional organisation and thus, free membership to the Society includes opt-ins for contact with us and withdrawal from such consent can be easily requested by contacting us at info sicklecellsocie .or We have a Fundraising Working Group that includes Trustee representation and reports on fundraising performance, policy and practice matters to the Board of Trustees. We believe this level of governance allows us to oversee compliance with the regulatory standards. We monitor our fundraising practices closely and can report that we have not received complaints in this regard during the last financial year. As a charity, we are committed to outstanding fundraising conduct and, we have amply achieved this aim. Thank you from the bottom of our hearts for your committed support. Charity Governance Code Sickle Cell Society recognises that good governance in a charity is fundamental to its success. The Sickle Cell Society and its Trustees are continually working towards the highest standard of governance, by reference to the principles and recommended practice of the Charity Governance Code and the Nolan Principles of Public Service. 19
The Sickle Cell Society Trustees. report (continued) for the year ended 31 March 2024 Trustees, responsibilities The Trustees are responsible for preparing the Trustees, report and the financial statements in accordance with applicable law and regulations. Company law requires the Trustees to prepare financial statements for each financial year in accordance with United Kingdom Generally Accepted Accounting Practice (United Kingdom Accounting Standards and applicable law). Under company12w the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources, including its income and expenditure, of the charity for the year. In preparing these financial statements, the Trustees are required to.. Select suitable accounting policies and then apply them consistently., Make judgements and accounting estimates that are reasonable and prudent., State whether applicable UK Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements. Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business. The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the charity's transactions and disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. Financial statements are published on the charity's website in accordance with legislation in the United Kingdom governing the preparation and dissemination of financial statements, which may vary from legislation in other jurisdictions. The maintenance and integrity of the charity's website is the responsibility of the trustees. The trustees, responsibility also extends to the ongoing integrity of the financial statements contained therein. Provision of information to auditors So far as each of the Trustees is aware at the time the report is approved- There is no relevant audit information of which the Society's auditors are unaware. and The Trustees have taken all steps that they ought to have taken to make Ihemselves aware of any relevant audit information and to establish that the auditors are aware of that information. In preparing this report the Trustees have taken advantage of the small company exemptions provided by section 415A of the Companies Act 2006. By order of th Trustees Michele Salter Chair .Icrf l £Lk 20
The Sickle Cell Society Independent auditor's report for the year ended 31 March 2024 INDEPENDENT AUDITOR'S REPORT TO THE MEMBERS OF THE SICKLE CELL SOCIETY Opinion We have audited the financial statements of The Sickle Cell Society (the 'charitable company'} for the year ended 31 March 2024 which comprise the Statement of Financial Activities, the Balance Sheet, the Statement of Cash Flows and notes to the financial statements, including significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including FRS 102 The Financial Reporting Standard applicable in the UK and Republic 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 31 March 2024 and of its incoming resources and application of resources, including its income and expenditure, for the year then ended., have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice., and 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 siandards are further described in the Auditor's responsibilities for the audit of the financial statements section of our report. We are independent of the charitable company in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC'S Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance 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 fi'nancial statements, we have concluded that the trustees, use of the going concern basis of accounting 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 conditions that, individually or collectively, may cast significant doubt on the charitable company's ability to continLte as a going concern for a period of at least e1ve months from when the financial statements are authorised for issue. Our responsibilities and the responsibilities of the trustees with respect to going concern are described in the relevant sections of this report. Other information The other information comprises the information included in the trustees, report, other than the financial statements and our auditorfs report thereon. The trustees are responsible for the other information ontained within the trustees, report. Our opinion on the financial statements does not cover the other information and, except to the extent otheiSe 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 materially inconsistent with the financial statements or our knowledge obtained in the course of the audit, or otherwise appears to be materially misstated. Ifwe identify such material inconsistencies or apparent material misstatements. we are required to determine whether this gives rise to a material misstatement in the financial statements 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. We have nothing to report in this regard. 21
The Sickle Cell Society Independent auditor's report (continued) for the year ended 31 March 2024 Opinions on other matters prescribed by the Companies Act 2006 In our opinion, based on the work undertaken in the course of the audit.. the information given in the trustees, report, which includes the strategic report and the directors, report prepared for the purposes of company law, for the financial year for which the financial statements are prepared is consistent with the financial statements. and the directors, report included within the trustees, report has been prepared in accordance with applicable legal requirements. Matters on which we are required to report by exception In the light of the knowledge and understsnding of the charitable company and its environment obtained in the course ofthe audit, we have not identified material misstatements in the strategic report or the directors, report included within 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 returns 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 returns., or certain disclosures of trustees, remuneration specifsed by law are not made., or we have not received all the information and explanations we require for our audit., or the trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies, exemptions in preparing the trustees, report and from the requirement to prepare a strategic report. Responslbilities of trustees As explained more fully in the trustees, responsibilities statement, the trustees (who are also the directors of the charilable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, 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 concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the trustees either intend to liquidate the charitable company or to cease operalions, or have no realistic alternative but to do so. Audltor's responsibilities for the audit of the financlal 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 assurance is a high level of assurance but is not a guarantee that an audit conducted in accordance with ISAS (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and 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. Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below.. 22
The Sickle Cell Society Independent auditorfs report (continued) for the year ended 31 March 2024 We obtained an understanding of the charitable company and the sector in which it operates to identify laws and regulations that could reasonably be expected to have a direct effect on the financial statements. We obtained our understanding in this regard through discussions with management, industry research, application of cumulative audit knowledge and experience of the sector. We determined the principal laws and regulations relevant to the charitable company in this regard to be those arising from Companies Act 2006, the Charities Act 2011 and relevant employee and tax legislation. We designed our audit procedures to ensure the audit team considered whether there were any indications of non-compliance by the charitable company with those laws and regulations. These procedures included, but were not limited to enquiries of management and review of minutes. We also identified the risks of material misstatement of the financial statements due to fraud. We onsidered, in addition to the non-rebuttable presumption of a risk of fraud arising from management override of controls, that there is judgement and estimation involved in the recognition of grant income. We have, for a sample ofgrant income, reviewed agreements to ensure that income, including accrued and deferred income, have been accounted for in accordance with the financial reporting framework. As in all of our audits, we addressed the risk of fraud arising from management override of controls by performing audit procedures which included, but were not limited to-. the testing of journals., reviewing accounting estimates for evidence of bias., and evaluating the business rationale of any significant transactions that are unusual or outside the normal course of business. Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. This risk increases the more that compliance with a law or regulation is removed from the events and transactions reflected in the financial statements, as we will be less likely to become aware of instances of non-compliance. The risk is also greater regarding irregularities occurring due to fraud rather than error, as fraud involves intentional concealment, forgery. collusion, omission or misrepresentation. A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at.. www.frc.org.uklauditorsresponsibilities. This description forms part of our auditor's report. Use of our report This report is made solely to the charitable company's members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the charitable company's members those matters we are required to state to them in an auditor's report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone, other than the charitable company and the charitable company's members as a body, for our audit work, for this report, or for the opinions we have fomed. Alastair Duke (Senior Statutory Auditor) For and on behalf of PKF Littlejohn LLP statutory Auditor 15 Westferry Circus Canary Wharf London E14 4HD /7 OJL 704 23
The Sickle Cell Society Statement of financial activities for the year ended 31 March 2024 (Incorporating the Income and Expenditure Account Total funds 2024 Total Funds 2023 Unrestricted funds Restricted funds Note Income: Voluntary Income 674,626 301,527 976,153 768,635 Investment income 16,346 16,346 4,962 Total income 690,972 301,527 992,499 773,597 Expenditure Costs of raising funds Fundraising costs 145,562 11,485 157,047 202,782 Charitable activities Campaign 138,101 102,380 240,481 201,403 Direct services group Provision of information and advice 114,295 71,940 186,235 114,128 43,639 63,398 107,037 81,314 Children's Activities & Holiday 13,291 23,054 36,345 44,561 Total expenditure 454,888 272,257 727,145 644,188 Net Income for the year before transfers 236,084 29,270 265,354 129,409 Transfer between funds {100,419) 100,419 Net movement of funds in year Reconciliation of funds Total funds brought forward 135,665 129,689 265,354 129,409 14 661,683 216,791 878,474 749,065 Total funds carried forward 14 797,348 346,480 1,143,828 878,474 The Society had no recognised gains or losses during the year other than those shown above. All the above results are derived from continuing activities. The notes on pages 27 to 40 form part of these financial statements. 24
The Sickle Cell Society Balance sheet at 31 March 2024 Company number 2840865 Note 2024 2024 2023 2023 Tangible fixed assets Tangible assets 154.894 180,800 Current assets Debtors and prepayments Cash and cash equivalents 10 12 176,913 1,028,962 158,406 706,464 1,205,875 864,870 Creditors - amounts falling due within one year Creditors 13 216,941 167,196 Net current assets 988,934 697,674 Total assets less current 1,143,828 878,474 Represented by.. Unrestricted funds 14 788.315 652,650 Designated Funds 9,033 9,033 Restricted funds 14 346,480 216,791 1.143,828 878,474 These accounts have been prepared in accordance with the special provisions relating to companies subject to the small companies regime within Part 15 of the Companies Act 2006 and constitute the annual accounts required by the Companies Act 2006 and are for circulation to members of the company. The accounts were approved and authorised for issue by the Board on s¥L) ij ZLF and signed on its behalf by: Trustee Trustee Michele Salter Julia McLarty The notes on pages 27 to 40 form part of these financial statements. 25
The Sickle Cell Society Statement of cash flows for the year ended 31 March 2024 Note 2024 2024 2023 2023 Cash generated in operating activities 19 315,508 11,545 Cash flows from investing activities Interest income Payments to acquire tangible fixed asset5 16.346 4,962 (9,356) 1740) Net cash from Investing activities 6,990 4,222 Increase in cash and cash equivalents in the year 322,498 15,767 Cash and cash equivalents at the beginning of the year 12 706,464 690,697 Cash and cash equivalents at the end of the year 12 1,028,962 706,464 The notes on pages 27 to 40 form part of these financial statements. 26
The Sickle Cell Society Notes fomiing part of the financial statements for the year ended 31 March 2024 Accounting policies Basis of preparation The financial statements have been prepared in accordance with Accounting and Reporting by Charities.. Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102} - (Charities SORP (FRS 10211, the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006. The Sickle Cell Society meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s). There are no areas of critical estimate or significantjudgement that affects the preparation of these financial statements. Going Concern The Board of Trustees have produced a forecast for the next 12 months from Ihe date of the financial statement was authorised. The Society is actively applying for new grants and exploring new fundraising opportunities for the financial year 202312024. In parallel, we are also developing a new 3 year fundraising strategy for the organisation. The forward look forecast for the next 12 months shows that the Charity has sufficient funds and reserves to enable us to meet our obligations as they fall due for a period of at least 12 months from the date when the financial statement is authorised for issue. As such, the board is satisfied that the organisation has adequate resources to continue to operate for at least the next te1ve months. For this reason, we continue to adopt the going concern basis for preparing these financial statements. Stock Stocks of publications and other material are shown at the lower of cost and net realisable value. Income Income is recognised when the charity has entitlement to the funds, any performance conditions attached to the item{sl of income have been met, it is probable that the income will be received and the amount can be measured reliably. Income from government and other grants, whether 'capital' grants or'revenue, grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably and is not deferred. For legacies, entitlement is taken as the earlier of the date on which either-. the charity is aware that probate has been granted, the estate has been finalised and nolification has been made by the executor(sl to the Trust that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executorfs intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is treated as a contingent asset and disclosed if material. Donations in kind are included in the accounts at market value. 27
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) Accounting policies (continued) Deferred income Income is only deferred when either the donor specifies that the grant or donation must only be used in future accounting periods, or the donor has imposed conditions which must be met before the Society has unconditional entitlement. Tangible fixed assets and depreciation Tangible fixed assets are stated at cost less depreciation. Depreciation is provided at rates calculated to write off the cost less estimated residential value of each asset over its expected useful life, as follows.. Fixtures, fittings and equipment Leasehold Improvements 250/D Straight line Shorter of ten years or lease term Expenditure Expenditure is recognised on an accruals basis as a liability is incurred and includes attributsble VAT which cannot be recovered. Costs of raising funds comprise the costs associated with the Society's fund raising activities. Expenditure on charitable activities comprises those costs incurred by the Society in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them. Allocation of Support and Governance costs All costs are allocated beteen the expenditure categories ofthe Society on a basis designed to reflect the use of the resource. Costs relating to a particular activity are allocated directly., others are apportioned on an appropriate basis as set out in Note 5. Governance costs include those costs associated with meeting the constitutional and statutory requirements of the Society and include the audit fees and costs linked to the strategic management of the Society. Operatlng leases Assets held under lease arrangements where the title to the equipment remains with the lessor are classified as operating leases by the charity. Rental charges are charged on a straight line basis over the term of the lease. Pension costs The Society operates a defined contribution pension scheme. The pension costs charge represents contributions paid during the year. The pension scheme's assets are held separately from those ofthe society and are managed by independent fund managers, who alone are responsible for matters of investment policy and the actual payment of the pensions to the persons so entitled to it. Restricted funds Restricted fijnds are to be used for specific purposes as laid down by the donor. Expenditure which meets these criteria is identified to the fund. Unrestricted funds Unrestricted funds are donations and other income receivable or generated for the objects of the Society without further specified purpose and are available for use at the discretion of the Trustees in furtherance of the general objectives of the Society. 28
The Sickle Cell Society Notes fomiing part of the financial statements for the year ended 31 March 2024 (continued) Accounting policies (continued) Designated Funds Designated Funds are funds earmarked by Trustees for a particular purpose. Accounting Estimates and Key Judgements In the process of applying the charity's accounting policies described in this note, judgements and estimates are made that have an effect on the reported amounts of assets, liabilities, revenue and expenses during the reporting period. Significant estimates made in the course of preparing the financial statements include the recognition of grant income and cost allocation for which the accounting policies have been noted above. Legal status of the Society The Society is a company limited by guarantee and has not share capital, domiciled in England and Wales, company registration number 2840865. In the event of the charity being wound up, the liability in respect of the guarantee is limited to £1 per member of the Society. Voluntary Income Total 2024 Total 2023 Unrestricted Restricted Unrestricted Restrlcted Donations and legacies Grants Capital Income NCIL- Brent Contract Income 493,768 493.768 301.527 482,791 482,791 136,963 301,527 136,963 23,965 23,965 124,916 180,858 180.858 124,916 674,626 301,527 976.153 607,707 160,928 768,635 Investment income Unrestricted Unrestricted 2024 2023 Bank and COIF deposit interest 16,346 4,962 29
The Sickle Cell Society Notes forniing part of the financial statements for the year ended 31 March 2024 (continued) Expenditure Direct costs Staff costs Support costs Total 2024 Total 2023 Costs of raising funds Fundraising costs 57,786 41,829 57,432 157,047 202,782 Charitable activities Campaign Direct services group Provision of information and advice Children's Activities & Family Retreat 32,840 78.833 119,698 39,297 87,943 68,105 240,481 186,235 201,403 114,128 14,011 53,883 39,143 107,037 81,314 23.054 13,291 36,345 44,561 Total expenditure 206.524 254,707 265,914 727,145 644,188 Analysis of support costs Other Support Costs Offlce and IT costs Staff related costs Governance costs Total 2024 Total 2023 Charitable activities Fundraising costs Campaign Direct services group Provision of information and advice Children's Activities & Holiday 14,092 21.578 16,711 17,961 27,503 21,299 22,008 33,700 26,098 3,371 5,162 3,997 57,432 87,943 68,105 80,947 80,397 45,558 9,604 12,242 15.000 2,297 39,143 32,459 3,261 4,157 5.093 780 13,291 17,788 Total support costs 65,246 83,162 101,899 15,607 265,914 257,150 Total expenditure in the year to 31 March 2024 was £727,145 (2023.. £644,188) of which £454,888 12023.. £456,627) was unrestricted and £272,257 (2023.. £187,561 } was restricted. 30
The Sickle Cell Society Notes forniing part of the financial statements for the year ended 31 March 2024 (continued) Staff cost and numbers 2024 2023 Wages and salaries Social security Pension 311,664 27,103 17,839 260,334 24,022 16,765 356,606 301,121 The average number of employees during the year was 13 {2023.'11). No employee earned more than £60,000 per annum (2023.. None). No remuneration has been paid to the Trustees other than reimbursement for travel and accommodation to 3 trustees1£1,099), membership cost to Association of Chairs membership {£60), and DBS check and Refreshment for meetings {£167} totalling £1,32612023: £1,853). The key management personnel of the Society comprise of the Chief Executive Officer. The total employee benefits of the key management personnel of the Society are £55,283 salary and £5,799 Nl, total - £61,082 (2023-. £50,592). Net Income for the year 2024 2023 Is stated after charging.. Depreciation on owned assets Auditors, remuneration (including VAT): Audit fees Equipment rental Property LeaselRent- 56 Station Road 35,262 35,054 11,970 11,231 5,637 9,600 9,600 Taxation The Society is a charity within the meaning of Para 1 Schedule 6 Finance Act 2010. Accordingly, the company is potentially exempt from taxation in respect of income or capital gains with categories covered by chapter 3 of Part 11 of the Corporation Tax Act 2010 or section 256 of the Taxation of Chargeable Gains Act 1992, to the extent that such income or gains are applied exclusively to charitable purposes. No tax charge arose in the period. 31
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) Tangible Fixed Assets Leasehold Improvements Furniture & Equipment Total Cost At beginning of year Additions Disposals 200.772 68,991 9,356 (19,880) 269,763 9,356 (19,8801 At end of the year 200,772 58,467 259,239 At beginning of year 36,372 27,279 52,591 7,983 (19,880) 88,963 35,262 (19,8801 Charge for the year Disposal 63,651 40,694 104,345 At end of the year Net Book Value As at 31 March 2024 137,121 17,773 154,894 As at 31 March 2023 164,400 16,400 180,800 All of the above assets were used for direct charitable purposes during the year. 10 Debtors 2024 2023 Grants and Legacies receivable {note 11) Prepayments 164,689 12,224 144,819 13,587 176,913 158,406 11 Grants & Legacies receivable 2024 2023 Mentoring Project 56,949 Public Health England (PHE) Genomics England Legacies 20,819 74,000 50,000 107,740 164,689 144,819 32
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) 12 Cash and cash equivalents 2024 2023 Cash in hand Natwest Reserve Account Natwest Current Account COIF Charities Deposit Fund Paypal 15 867,363 100 160,650 834 338 548,922 100 153,202 3,902 1,028,962 706,464 13a Creditors - amounts falling due within one year 2024 2023 Trade creditors Accruals and deferred income 74,074 142,867 70,262 96,934 216,941 167,196 13b Deferred Income Reconciliation 2024 2023 Balance as at 1 April Amount Released to Income Amount Deferred in the year 27,995 {27,995} 92,249 53,952 153,952) 27,995 Balance as at 31 March 92,249 27,995 33
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) 14 Analysis of charitable funds Balance 1 April Movement in funds Balance 31 March 2024 2023 Income Expenditure Transfers Restricted funds Family Retreat I Children Holiday scheme Jeans for Genes Research Helpline Worker CLAHRC APPG for Sickle Cell & Thalassaemia Refurbishment Income NHS England Mentoring Programme Give Blood Spread Love Nursing Workforce Public Awareness Campaign - Priapism Genomics England Northwest England Children & Young People Peer Mentoring Project 23,941 3,000 1,000 23,054 15,287 887 12,287 45,227 46,227 48,111 48,111 2,995 2,995 14,000 27,224 4,348 13,224 4,348 23,365 2,500 23.365 2,500 65,469 137,697 21,849 20,000 72,228 44,298 20,000 22,449 68.704 74,000 300 17,407 68,404 56,593 80,040 80,040 Restricted funds 216,791 301,527 272,257 100,419 346,480 Unrestricted funds General fund Designated Funds 652,650 690,972 454,888 (100,419) 788,315 9,033 9,033 Total funds 878,474 992,499 727,145 1,143,828 Designated funds currently stand at £9,033 no fund was released in 2023-24 financial year.
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) 14 Analysis of charitable funds (continued) Analysis of charitable funds- previous year Balance 1 April 2022 Movement in funds Balance 31 March 2023 Income Expenditure Transfers Restricted funds Children Holiday scheme Jeans for Genes Research Helpline Worker CLAHRC London borough of Hackney GMSN - Children's Activity APPG for Sickle Cell & Thalassaemia Refurbishment Income Heritage Lottery fund NHS England Digital Marketing - Blood Donation Mentoring Programme Give Blood Spread Love Public Awareness Campaign - Priapism Genomics England 9,630 14,299 11,580 4,669 11,580 45,227 45,227 35,948 35,948 2,995 2,995 412 412 5,937 10,346 16,283 18,000 23,965 27,013 600 9.013 23,365 2,500 2,500 7,060 1,727 18,027 60,876 10,967 34,162 24,987 71,227 2,523 68,704 74,000 74,000 Restricted funds 148,253 160,928 187,561 95,171 216,791 Unrestrlcted funds General fund Designated Funds 560,812 612,669 456.627 (64,204) 652,650 40,000 (30,967} 9,033 Total funds 749,065 773,597 644,188 878,474 35
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) 14 Analysis of charitable funds (Gontinued) Restricted Funds The purpose of each of the restricted funds is as follows: Annual Children's Holiday schemelFamlly Retreat On a yearly basis The Sickle Cell Society carried out a Children's holiday for young people with Sickle Cell, for the three years over the pandemic the holiday was held virtually. During the virtual holiday there was immense value in including parents and siblings in the experience. In 2023 the Sickle Cell Family Retreat was born. The Society carried out the first Family Retreat with a group of families with at least 1 child with Sickle Cell at the Pioneer Centre. £23,941 was received in 2023124 towards this project. Jeans for Genes Campaign £3,000 received during 2023-24 financial to support the Volunteering Programme. Research and Development The Society is increasingly aclively involved with research and development initiatives at different levels with the NHS, Academic Institutions and Industry. These funds will be used as a contribution to support our funding applications to fund Research and Development bursaries. Helpline Worker To provide dedicated telephone advice, information and support for people living with Sickle Cell Disorder, Carers and families. A transfer of£48,111 was made from the unrestricted funds in 20231234 to carry out this service. CLAHRC, LSHTM and Sickle Cell Society Collaborative Project Following the work of the BUPA-funded 'Self Over Sickle, project which provides advice, support and testimonials for young adults around transition, this work will drive visibility of the person behind the sickle cell via an ad campaign in London and aim to build confidence of young adults with the condition via an online resource pack signposting services and techniques to enhance one's quality of life living with sickle Cell. Sickle Cell and Thalassaemia All-Party Parliamentary Group (SCTAPPG The SCTAPPG Project has continued to provide the secretariat of the SCTAPPG. Two restricted grants of £14,000 were awarded by Novartis - £8,000 and Vertex - £6.000 respectively. £13,224 was transferred from the unrestricted to help carry out this service. Office Refurbishment Phase 1 of the Sickle Cell Society Headquarters refurbishment has now been completed. We are currently seeking funding towards Phase 2 work. Mentorlng Project Young Person's Mentoring Scheme aims to improve the health and wellbeing of young people living With sickle disorder which started with North East London ICB (NEL). The Society is pleased that we now have all the other 4 regions on board North West London (NWL), North Central London (NCLI, South West London (SVVLI and South East London a total of £137,697 was received during 2023124 to carry out this service. Give Blood Spread Love and Digital Marketing - Blood Donation Digital Marketing - Blood Donation complement the Give Blood Spread Love programme which aims to increase the number of black people donating blood in areas beyond South London. Give Blood, Spread Love uses new media to build awareness, share fact5, breakdown myths and direct people to sign up to the blood donation register online, and go a step further by asking peers to do the same.
The Sickle Cell Society Notes fomiing part of the financial statements for the year ended 31 March 2024 (continued) 14 Analysis of charitable funds (continued) Public Awareness Campaign - Priapism Public Healthcare Awareness Campaign (specifically of priapism targeting Healthcare professionals, young boys, men and parents). Funding was provided by Boston Scientific International to help to support this project. London Borough of Hackney The Society has been commissioned by the London Borough of Hackney to deliver a programme of community activities and engagement sessions for people living with SCD and their families, in the borough. Genomics England We have secured funding from Genomics England to appoint a new SCSIGenomics England Partnership role for 18 months, six months of which has already been completed. We plan to deliver a priority setting exercise for future genomics research into Sickle Cell Disorder. Nursing Workforce Sickle cell services have faced decades of underfunding and under-prioritisation, as outlined in the No One's Listening report published by the Sickle Cell Society and the All-Paty Parliamentary Group on Sickle Cell and Thalassaemia in 2021. This is reflected in the challenges facing the specialist sickle cell nursing workforce. This research project set out to capture the wide ranging role specialist sickle cell nurses perform, gain a more detailed understanding of the current level of specialist sickle cell nurse staffing, the impact this has on patients and clinicians, the reasons behind the workforce shortage, and what needs to happen to ensure there are sufficient numbers of specialist nurses to deliver a good standard of care to people with sickle cell disorder. Children and Young Person Peer Mentoring Team Children and Young People Peer Mentoring Scheme is a pilot scheme aim to improve health and wellbeing of children and young people in Northwest England Manchester, Liverpool and Sheffield. £80,040 was received during 2023124, however, we eslimate the start date of this new project in the first quarter of next financial year. 37
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) 15 Unrestricted donations, legacies and fundraising - £500 & Over Community & Challenge Event Fundraising (Just Giving) Community & Challenge Event Fundraising (Blackbaudl Imst.Cem.Crem.MGNT Hoare & Co Bank Leicester City Council - Lord Mayor Bloomberg LP Vitol Foundation Capital Group Comp Community Event Fundraising (CAF - ONLINE) Enthuse.com Cooley UK LLP C.E.X Limited Charitable Giving (inc Amazon Grant) Facebook Paypal Metro Bank PLC EMIL KUMAR EMIL KUMAR Trees Cazenove Charitable Trust Legacy of Ms Mavis Mills UK Online Giving The Oyster PTSHPL West Cliff High School HMP Frankland and Prison Services Charity Fund Charities Trust Citi Bank RE FIN UK Online Giving F Amazon Core Saracers's event - Tracy Collection Lodge (The Grand Charity) Mrs F B Laurence Charitable Trust Event in memory of MC Skibadee Beths Grammar School E Cornelius EMC - Fundraising Event HUr00d House School Memorial Tribute Fundraising (Much Loved) Siemens Finance Ltd Windrush Foundation - Aurthur Torrington (Colin Graham) Toronto Dominion Reynolds Porter Tinu Williamson-Taylor The Dewan Foundation Limited First Give the Quest Academy New Church of God Veolia ES Southw ARK Terumo BCT 55,827 37,245 26,000 19,708 12,124 12,008 11,815 9,500 8,945 8,391 7,828 7,598 7,461 6,161 5,595 5,500 5,202 5,000 5,000 4,178 3,354 3,221 2,000 1,728 1,722 1,595 1,538 1,500 1,500 1,500 1,411 1,240 1,200 1,198 1,064 1,000 1,000 1,000 1,000 1,000 1,000 1,000 812 667 38
The Sickle Cell Society Notes forming part of the financial statements for the year ended 31 March 2024 (continued) Unrestricted donations, legacies and fundraising - £500 & Over (Gontinued) Valero Energy Ltd B A Leslie In Memory of Lucreta La Pierre The GDST-Bromley High School Norbury School & Nursery HMP Whitemoor Elthorne Park High School Winchmore School Hartley Taylor- Dr R Kesse-Adu Elite Golden Ladies Women UK All Saints Catholic School The Nile Valley Lodge NO 6306 Najeebullah Habibi 600 600 550 539 538 525 514 509 500 500 500 500 500 16 Analysis of net assets between funds 2024 Total Funds Unrestricted Restricted Tangible assets Current assets Current liabilities 154,894 859.395 (216,941) 154,894 346,480 1,205,875 (216,941) Net assets 797,348 346,480 1,143,828 Analysis of net assets between funds- previous year 2023 Total Funds Unrestricted Restricted Tangible assets Current assets Current liabilities 180,800 648,079 (167,196) 180,800 864,870 (167,196) 216,791 Net assets 661,683 216,791 878,474 39
The Sickle Cell Society Notes fomiing part of the financial statements for the year ended 31 March 2024 (Continued) 17 Transfer between funds During the year the Trustees agreed transfers of £100,419 (2023.. £95,171) from unrestricted funds to make good the deficits on the restricted funds and as a requirement of part funding. Transfers were Jeans for Genes- Volunteer Project, Helpline Services, APPG for Sickle Cell & Thalassaemia Project, Refurbishment Project and Give Blood Spread Love & Digital Marketing Projects. See note 14 for further breakdown. 18 Leaslng commitments The Society is committed to make the following minimum lease payments under operating leases for equipment.. 2024 2023 Commitments expiring-. Within 1 year Within 2 to 5 years 15,152 16,096 14,268 42,583 31,248 57,051 19 Reconcillatlon of operating result to net cash inflow from operating activities 2024 2023 Net Movements in Funds Depreciation Interest income (Increase)IDecrease in debtors (Increase)IDecrease in creditors 265,354 35,262 (16,3461 (18,5071 49.745 129,409 35,054 {4,9621 (113,5001 (34,456) Net cash generated from operating activities 315,508 11,545 20 Related party transactions There are no related party transactions requiring disclosure in this financial year. 40