CHILDREN'S HEARTBEAT REPORT OF THE DIRECTORS FOR THE YEAR ENDED 31 MARCH 2024 Report of the Trustees (incoryorating the dire¢tors' report) ror the year ended 31st Marcb 2024 The trnstees are pleased to PTesent theiT annual directors. Teport together with the financial statements of the charity for the year ending 31 March 2024 which are also prepared to meet the requiTements for a directors, report and accounts for Companies Act purposes. The financia] statements comply with the Charities Act (NT) 2008, the Companies Act 2006, the MemoranduTn and Articles of Association, and Accounting and Reporting by Charities.. Statement of Recommended Practice applicable to cbarities preparing their accounts in accordance witb the Financial Reporting Standard applicable in the UK and Republic of ITeland (FRS 102) (effective l January 2019). REFERENCE AND ADMIMSTRATTVE DETAILS The required reference and adrninistrative detai15 are laid out on page I Cornpany Infonnation. The directors of the charitsble cnrnpany (the charity) are its trnstees for the purposes of charity law. The Directors serving during the year and since the year end are also included on page l. OBJECTIVES AND ACTivrriES The purp08es of the charity are for the public benefit of children, young people, and their families affected by heart thseas¢ in Northern Ereland. This is achieved through the provision of emotional and ptic support. tbe advalleement and prornotion of awareness and the supporting medical resources and research in thig area. In shaping our objectives for the year and planning OUT activities, the tnjstees have considered the Charity Commission's guidance on public benefit. The strategies employed to achieve the charity's aims and objectivcs are.. Financial support for Clark Clinic at the Royal Belfast Hospital for Sick Children.. Clark Clinic is Northern Ireland's only regional unit for children that need specialist treatment for heart conditions. We are proud to have the unique OpponIty to work so closely with the Clark Clinic team to help fi]nd top quality methcal equipment. sensory equipment and specialist support to ensure that children and young people with heart disease in Northern Ireland receive the best care and treatment possible in an age-appTopriate environment. Provision of accommodation at the Royal Belfast Hospit41 for Sick Children.. Children's Heartbeat Trnst maintains accommodation directly above Clark Clinic for parenLq to stay in when their child is being treated. This allows parents to stay at the hospltal in comfortable surroundings. at what is often a traumatic time and especially beneficial for those families travelling long distances to Belfast for theiT child's treatment. Farnily Support Groups and Services.. We run ten family support groups throughout the province to provide local support to families when they need it. Our groups are parent led and meet on a regular basis so families have the opportunity to meet otheT farnilies who are experien¢ing similar issues and problems in a local, friendly environment. Youth Support: We opcrate a dedicatcd youth support PTogramme to young people diagnosed with CHD. Helping them develop peer support networks and providing social activities. a summer residelltial and educational sessions, such as transitiollillg from paediatric to adult caTe services. We also delivgr a Tange of 5UPPOrt s¢rviG¢s from bgTeav¢rn¢nt 5UPPOrt. farnily h¢art books, courAselling, baby massage. and music th¢Tapy. to peeT Support and family fun days. These serviG¢s also inGlude tailored and fmancial support for families travelling away for their child's surgery. As a clwity, we are also delighted to provide respite caravans foT our heart families. Quality family time can be limited if & lot of time is spent in hospital for trealrnent of a child's heart defect. We see how in]portant it is to have time together as a family for parents, heart children and siblings, and the caravans are a key resource in helping families affected by CHD have a holiday and quality time together. Page 2
ClllLDREN'S HEARTBEAT REPORT OF THE DIRECTORS FOR THE YEAR ENDED 31 MARCH 2024 OBJECTIVES AND ACTIVITIES (CONTINUED) Research into heart disease In children: We aim to fLmd and 8UPPOrt research into the causes and treatment of heart diseale in ebildren. This research will imPTove health and lifestyle outcomes for cbildren and young people living with heart disease. CAmpAigning: The charity campaigns on policy issues that will improve Outcomes and lifestyle for chil(tren and young people with beart disease. As a member of tbe All Island CHD Network Board and co-chair of the Family Engagement Group, the cbarity ensures parents and families are at the centre of all decisions Tegarding service provision. ACHIEVEMENTS AND PERJORMANCE M's ChildTen's Ambulance In 2023, we launched Northern Ireland's first bespoke Children's Ambulance. The purpose was clear, to piovide children and their families with a welcoming and cornforting space in which to travel at a time when anxiety is often at an all-time high. Since then, over 200 trips have been made by the arnbulance. providing families and children with a less stressful journey to lifesaving surgery. According to statistics from the Northern Ireland Specialist Transport aDd Retrieval Service (NISTARI, 95 trips were made in the Children's Ambulance, to or from Dublin for children Tjeeding ¢arth"a¢ treatment or surgery in the last 12 months. Overall, the ambulance made 221 trips for children and young adults needing treatment or surgery. Youth Support Research This year wt began developing research into OUT services to measuTe their itnpaet on our families and young people. Including our residential for young people - Summer Blt. We used a validated psychometric scale called the Depression, Anxiety and Stress Scale, Youth version (DASS-Y) was used to measure any gains attained over the course of the residential. Findings included.. a IOOO/ts improvement in mental health SCOTes taken at the beginning of camp to those taken at th¢ camp, end. 33 % scored moderate to Seve stress at the start of the camp. cornpad to 00/0 with rnoderate to severe stress at the end 33 /0 scored moderate to extremely severe anxiety at the start of the camp. OQ/o fell in the modelate to extremely severe category at the end. Depression scores improved from 25 /0 reporting mild depression at the start of the carnp to 17010 at the end. These find]"ngs were presented at the AEPC Congenital Conference in Milan. Family Support 216 famibes received fmattcial support when travelling for Surgery. or for long-tern bospitsl stays, totalling £110,400. 83 families benefitted from a Short break at one of our caravans 502 people atteDded our family fr]n days across Nl 24 bereaved families 5UPPOrted through our STARS programme 29 parents trained in infant massage 58 parents supported throughout pregnancy in our antenatal programme 319 faTnilies received bedside emotional support whilst their child was in hospital 119 families utibsed our accommodatiotL seTvice in ttLe Royal Belfast Hospital for Sick Children 162 fan]ilies 5UPPOrted by our local Support GTOUPS Page 3
CHILDREN'S HEARTBEAT REPORT OF THE DIRECTORS FOR THE YEAR ENDED 31 MARCH 2024 ACHIEvEmNTs AND PERFORMANCE (CONTINUED) Youth Support 16 young people took part in our SummeT Blast Tesidelltial. I l young people availed of Transition Support from paediatrics to adult services. I I Student BursaTies granted to young people with CHD Tnoving on to rther or bigher education. £4.950 granted in total. Research CHIP InitiaE findings being Teported frorn the third wave of this research indicate that the childTeTh of the families who received the intervention have improved neuropsychological outcomes. AJN Presented the impact of our youth work at the AtN annual ¢onference in January 2023. Supporting four QUBIUU PhD projects. Support includes assistance with planning, recrnitment and funding applications. Hope get5 ready for adventure at our Summer Blast Service Development Research All of our projects have involved families in their design and delivery. This year we have focused on research into a siblings support seTvi¢e. We held two focus groups to inforn] development of new sibling service. The three maiti themes identified with 10-13 years siblings were.. l. Wory about their sibling's health and future 2. Impact sibling's illness has on daily life 3. Loneliness Thes¢ insights were corroborated by the older 17-21 focus group along with a new theme of lack of knowledge about what was wrong with their sibling and bow scary it IS. Advocacy Member of CHD All Island Network Board- representing voice of families to the AIN Board. Co-chair of Family Engagement Group - high]ighting key i8sues for furtherirlg family and patient support and engagement. Promoting the importance of Organ Donation through social media and a member of the PHA Organ Donation Sub GTOUP. both supporting The Organ and Tissue Donation (Deerned Consent) Bill. Co-chair of Northern Ir¢land Children's Health Coalition to advocate for families accessing paediatric acute service5 in Northern Ireland. Cardiac Service5 Continued support for paediatric cardiac services in Nt through the Purchase of med?cal equipment. sen.gory equipment and play resources, 9 portable SATS monitors allowing families to moDitOT theiT child's QXYEen satUTation at home and for the liaison cardiac tean] to access accurate infornjation without the farnily having to travel to 3 hospital appointment l O Coaguchek macl]mes to empower young people over 16, by training them to safely self-manage warfarin levels, reducing the incidences of complications and bospital visits. The redevelopment of th¢ RBHSC courtyard gardens from an HSBC grant. Page 4
CHILDREN'S HEARTBEAT REPORT OF THE DIRECTORS FOR THE YEAR ENDED 31 MARCH 2024 ACHIEVEMENTS AND PERFORMANCE (CONTINUED) CHT Events Mile A Day 2023 - £52,558 Belfast MaTathon 2023 - £34,833 More Than A Gift 2023 - £24.668 Rock Red 2024 _ £22,769 Community Devina Holmes Fundraising in memory of Jordan - £13,011.93 Sweetheart BoutiqudHolywood Golf Day - £9.964 Oisin's I" Birthday Fundraiser - £10,300.84 Berties, Heartbeat- £8,735 GibsDn Primary School - £7,500 Devina Holmes presents £13,011.93 raised in memory of her son Jordan on what would th have been his 30 birthday. Coryorate Donatlons Cavanagh Kelly - £16,372 NFU MuWal - £6,761 Instt"tute of Civil Engineers £7,355 Nt Football Association - £6,000 Hannon Transport - £7.873 Grants Department of Communities CareT'S Fund - £9,950 Dormont Accounts - £32,237 Community Foundation Mental Health Fund - £5,592.20 Ulster Garden Villages - £20,000 Benefact Group - £5.000 Staff frorn Cavanagh Kelly embarked on a Heartbeat Hike up the Stairway to Heaven in Co. Ferrnanagh. Governance Four TTUStees undertook specialised training sessions from C03 on governatLce topics. Under the guidance of our Chairperson, the Risk & Governance subgroup began developing new risk reporting. A wealth management company was appointed to maximis¢ income frorn our reserves. in line with CSR. FINANCIAL REVIEW The Gharity's income for the 12 month period ending 31st March 2024 was £546,152 increasing from the Previous financial year (£439,679 in 2023). This Ye CHT also adopted an investment strategy to maximise income from our reserves, from an initial investment of £400,000, a fiuther value of £27,834 was gained. In ac¢oTdance with Sectton 15 of the Trustee Act N.1. 2001, the Board (the Trustees) of Children'5 Heartbeat Tnt as a limited Company and a registered charity prepared and agreed an Investh]eTht Policy StaternenL The investment objective of the TTUStees is that the real value of the Charity assets be maintained and enhanced over the long terni by investment in portfolios comprised of equities. fixed income, alternatives and cash. beillg in mind propeT attention to investment risks and taking into consideration the needs of the Charity. FurthertDore, as a cbildren's Chlty, the Trustees do Dot wisb to invest directly in any Publicly Listed Companies (PLC) who are directly involved in the PTomotiotL of gambling. the production of tobacco OT aTrnallLents. ill an OTganisation or area or county with poor human rigbts rccord5 (particulaTly against women and childrcn) or working conditions. or connected to poor health outcomes or cruelty to childr¢n. Total resOUeS expended of £531,072 decreased when compared to the previous finarLcial year, mainly due to the purchase of the ambulance, with net income for the period amounting to £42.914. Total net assets amounted to £822.591 as at 31st March 2024 (2023.. £779,677). The majority of ndIng comes fron] voluntary donations. Page 5
ClllLDREN'S HEARTBEAT REPORT OF THE DIRECTORS FOR THE YEAR ENDED 31 MARCH 2024 FtNANCIAL REVIEW (CONTINUED) Reserves policy and going concern Children's Heartbeat Trusts. policy is to provide the charity with adequate financial stsbility and the means for it to meet its charitable objectives for the foreseeable futhTe. The charity aims to maintain reserves at levels equivalent to six months operational expenditure having regaTds to its manner of operation of likely funding streams. Cuent levels of resee8 are higher than this and until the Teserves are utilised, funds will be invested in a nurnber of sbort to medium tenn deposits and invested in line with the cbarity's IPS. to obtain a rekn in the current economic climate. On making these investments, the ability lo withdraw fijnds if requiTed has been considered. PLANS FOR FUTURE PERIODS With OUT new agreed 2023-2027 strateEY, ChildTen's Heartbeat TTUSt has ¢x¢iting new plans and vision for our sUPPOrt service5, research and incorne generation. In the next twelve months, we plan to.. FAmlly & Youth Servlces: Seek and secure fimding to deliver the newly co-designed Youth Programme model. DevelDP an active Youth Council Seek and Secure fimding to deliver a co-designed siblings support progran)me Continued exploration of a 'Home from Home. Ifamily support hub Expand on our bereavement support programme Continue to develop our podcast serie5 Review our pathway to support and points of intervention Rese2reh & Policy: Disseminate CHIP findings Develop a Public Policy Carnpaign Play an active role in supporting the A TN research programme Build on our academic parknerships with a¢tive support of relevant UU and QUB reseaT¢h projects Paediatri¢ C2rdia¢ Servi¢es Support: Continue to provide support on the ward to families Seek longer tenn funding for additional therapies on the ward e.g. music Purchase required equipment to support our heart children Advocacy and Awareness: Review the Con]munications strategy for the organisation Develop new projects for the All Island Network Family Engagement Group Engage with the new Health Minister on our work Continue our lobbying with the Nl Cbildren's Health Coa]ition to launch the 'Hidden Costs of Having a Cbild in Hospital, research, with a ca]1 for financial support for families. Campaign for a pulse oximety test to be standard for all new-borns. Continue to develop a catalogue of digital resources for heart families New website developed and integrated with CRM Income Generation: Implement the Dew income generation strategy Provide robust training / mentor opportLmities to cuttent staff Generate new and divcrse income streams Continued development of robust governance processes: Develop and implement a new risk audit Hold Board reviews Futtre proof by ensuring BoaTd skill needs are filled EtLgure cotnpliatLce with ChaTity CommissiotL Nl requiTetnents Maintain registration with Fundraising Regulator following the Regulator's Code of PTactice Provide training for volunteeTS and Board Members Page 6
CHILDREN'S HEARTBEAT REPORT OF THE DIRECTORS FOR THE YEAR ENDED 31 MARCH 2024 STRUCTURE, GOVERNANCE AND MANAGEMENT Governing Document Children's Heartbeat is a company limited by guarantee governed by its MeTnorandurn and Articles of Association dated 12 October 2013. Children's Heartbeat is a registered charity with the Charity Cornmission for Northem Ireland. Children's Heartbeat is a membership Drganisation with currently 10 members. each of whom agTees to contribute £1 in the event of the charity winding up. Appointment of trustees The Chairn)an and the Trustee8 recruit and select Thew Twstees as needed. New Trustees are recruited on the relevance of their professional skills, and their potential to be able to make a help1 contributions to the govenjance of the Chlty. As part of the recruitment process they are made aware of a Trustees, legal obligations under charity and company law. the content of the Memorandurn and Article5 of Associatio the committee and decision mab'ng processes. the business plan and Tecent financial perfonnance of the Chlty. Once the potential new TNstee has agreed to be considered for appointrnent to the role, the Trustees meet to review and to vote on the candidates, suitability for appointment. If there is unanimous agreement, their names are then proposed for appointment, to the voting Members of the Company. STATEMENT OF DIRECTORS, RESPONSJBTLTTIES The directOTS are responsible for preparing the Report of the Directors and the financial statements in accordance with applicable law and United Kingdorn Accounting Standards (United Kingdom Generally Acceptable Accounting PTacti¢e). Company law requires the directors to prepare financial statements for each financial year. Under company law the directors musl not approve the financial statements unless they are satisfied that they give a te and fair view of the state of affalrs of the charity and of the incorning resources and application of resource5, include the income and expenditUTe, of the charitable company for that period. In preparing these financial statements, the directors arc required to.. select 5Ultable accounting policies and then apply them consistently. - make judgement5 and accounting estimates that are reasonable and PTudent' - state whether applicable UK Accounting Standard8 have been followed,. and - prepare the financial statetnents on th¢ goirLg Goncern basis unl¢s5 It is inappropriate to Presume that the charity will continue in business. The directors are responsible for keeping adequate accounting records that are sufficient to show and explain the ompany's transactions and disclose with reasonable accuracy at any time the flljancial position of the rharity and enable them to ensure that the firjancial staternents comply with the Companies Act 2006. They are also Tesponsible for safeguarding the a55ets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities. STATELIqENT AS TO DISCLOSURE OF INFORMATION TO AUDITORS So far as the directors are aware, there is no Televant audit inforniatiorl of which the company's auditors are unaware, and eacb director has taken all the steps that they ougbt to have taken as a director ID order to Make themselves aware of any relevant audit information and to establish that the auditQTS are aware of that infonnation. Tbis report has been Prepared in accordance with the special Provisions of Part 15 of the Companies Act 2006 relating to small companies. ON BEHALF OF THE BOARD.. ichola.Roon£xltrJoMJ3.2ala Prof N Rooney - Chairperson Date: .1..31..1..1.120.24....... Page 7