## **EVELINA CHILDREN’S HEART ORGANISATION LIMITED** **(A Company Limited by Guarantee)** **Registered Charity Number 1146494** **Company Number 7867592** **REPORT OF THE BOARD OF TRUSTEE DIRECTORS** **FOR THE PERIOD 1 JANUARY 2021 TO 31 DECEMBER 2021** ## **Evelina Children’s Heart Organisation Limited** ## **(A company limited by guarantee)** ## **Report of the Board of Trustee Directors for the Period 1 January 2021 to 31 December 2021** **Charity Name** Evelina Children’s Heart Organisation Limited **Working name** ECHO **Charity registration number** 1146494 **Company number** 7867592 **Registered Office** Canterbury House, 1 Royal Street, London SE1 7LL ## **Board of Trustee Directors** **Chair** Jane Ward ## **Trustees** - James Pincus - Patricia Jane Ward - Alex Bicknell - Joanna Eyeson - Stephen Wood - Marc Harry ## **Staff** - Chief Executive Samantha Johnson - Community & Administration Manager Emma Orpin - Head of Operations Siobhan Morton - Communications & Volunteering Coordinator Sinéad Houlihan - Fundraising & Development Lead Kate Smith - Vashti MacDonald-Clink, Community Coordinator **(started July 2021)** ## **Independent Accountant** Drive Business Services 52 Crown Drive, Inverness, IV2 3QG ## **Bank** CAF Bank 25 Kings Hill Avenue, Kings Hill, West Malling, Kent, ME19 4JQ ## **Letter from Chief Executive** As a charity, COVID-19 continued to impact how, where and when we could deliver our services and volunteering opportunities in 2021. During the past year, we have seen families struggle with their child’s medical care; the impact of the pandemic; their mental health and feelings of isolation. We continued providing online and telephone support to ECHO families, while welcoming new members digitally into our online community group and where possible, supporting families in-person. We were pleased to continue supporting important research including our partnership with the Heart Siblings Impact Study School of Health and Social Care at London South Bank University, and research into 3D heart models and how art connects with science at Kings College London – both will have a direct impact on the ECHO community in the future. We introduced new characters to the ECHO charity brand, a ring-tailed lemur, a fox and a sibling join Eddie ECHO bear across our children’s resources. These characters will help us to share the stories of the ECHO heart community and reflect the significance of siblings throughout the heart journey, as well as those with chest scars from heart surgery. We have represented families across our community to improve safety, quality of care, and patient experience across various boards and committees and thank those parents who have given us feedback to take forward. All our services are free for families to access, including membership to ECHO, this allows us to work with families from diverse communities and ensures that our services are openly available to all families affected by children’s heart disease when every they need us. ECHO want to pass on our thanks to everyone who has helped our charity support families affected by children’s heart conditions throughout 2021. The pandemic demonstrated the strength of our community - we needed to work together to raise the funds, awareness needed to support those who needed us and together we have done just that. Whatever you did for our charity in 2021, we appreciate you and know that without your support we could not be there when families need us. Thank you. - _**Samantha Johnson, ECHO Chief Executive**_ ## **Our mission, vision and values:** - Mission: to support children affected by heart disease & treated by the Evelina London Children’s Hospital networks, and their families. - Vision: a world where the emotional, social, financial and medical needs of heart families are met. - Values: Resilient, Empowering, Supportive, Open & Honest, Resourceful, Impactfu **l** ## **About ECHO:** ECHO supports families affected by children’s heart conditions, at every stage of their heart journey, helping from diagnosis (often during pregnancy) through to a child’s teenage years and beyond as they transition to adult cardiology services. ECHO connects the children’s heart community by bringing together children and young people with heart conditions, their families and medical professionals. ECHO is regarded by many as a second family and a strong network to be part of at all life stages of the CHD journey. Often people access support in a crisis and again years later at different milestones. ## **Who we support:** - Children and young people with heart conditions from birth to 19 - Parents/Carers diagnosed either prenatally or during childhood throughout their child’s life, at times when they need us - Siblings of those with heart conditions, from birth to 19 living with a heart child - Wider family who support ECHO members - Professionals surrounding families at the Evelina London, Royal Brompton and networks ## **How ECHO supports families affected by children’s heart conditions:** - Information & Guidance: ECHO provides information and advice via our website, leaflets, social media, newsletters and books for children. - Antenatal classes: ECHO funds bespoke cardiac antenatal classes for parents whose unborn child has been diagnosed with a heart condition. - Parent/Patient advocacy: ECHO represents patients and parents locally and nationally to improve patient/carer experience, campaign for improvements to government benefits as well as act as an objective partner for families with queries regarding their child’s care. - Hospital Resources: New spaces in hospital: redesigning & revitalising spaces within Evelina London including the parent’s room and new psychology space - Discharge & Pregnancy packs: specialist information packs. - Comfort packs: Packs for parents whose children have arrived at hospital in an emergency, containing practical help at a time when nothing else is available. - Gift packages on Mother’s and Father’s Day - Events: Events for heart children, their parents and siblings, helping to reduce isolation, promote wellbeing, improve local support networks and enable families to meet others who are experiencing a similar situation. - Parent-to-Parent Support: ECHO organises & trains volunteers who provide emotional support at hospital, on the telephone, via email or through organising & participating in local events. - Online forum: ECHO manages a closed Facebook group enabling heart parents to meet online and share stories. - Support for Dads: Documentary film offering advice and reassurance to fathers and male carers of a child with a heart condition. - Support for Siblings: Annual ECHO Sibling Day gathering, plus information and guidance designed specifically for siblings. - ECHO Teens: information & guidance, fun activities and helping young people transition to adult hospital services. - Bereavement Support: Remembrance gatherings and small bereavement grants. - Toys & Crafts: Toys and crafts for children at Evelina London Children’s Hospital. - Equipment which cannot be provided by the NHS Small, practical equipment that cannot be funded by the NHS. ## **Financial Review** ## Community and individuals **205** Facebook Fundraisers were created, with **1,213** donations. In total, £22,876 was raised (£22,803.65 in 2020) Through JustGiving we raised **£47,854.59** (£22,799.91 was raised in 2020, but in 2020 we also raised £91,437.46 in 2020 from Virgin Money Giving, which closed its doors in early 2022). In total through digital fundraising (Facebook and JustGiving) we raised: **£70,730.59** (£137,041.02 in 2020) ## Heart Month Our Heart Month fundraising was greatly impacted by national lockdowns due to the COVID-19 pandemic. In total we raised **£1,100.** ## Secret Santa In total we raised **£2,067.18** (£2,727.50 in 2020) in our annual festive fundraiser, funding the provision of games, books and festive treats for children and young people in hospital over the festive period. £800.18 was donated via ECHO’s website fundraiser. £1,267 donated via ECHO’s Facebook Fundraiser. ## Events: In 2021, due to high cases of COVID-19 and national lockdowns ECHO’s in-person events remained paused. ECHO’s own Up & Over event was cancelled, for the second year. We had individuals registered to compete in several fundraising events, which were cancelled: 5 runners in Brighton, 2 at London Marathon, 5 at Royal Parks Half Marathon. The Virtual London Marathon took place, where 7 individuals took part for ECHO. We also had 2 individuals who took part in the Ride Across Britain challenge event. ## Grants and Trusts We are grateful to the trusts and foundations who generously supported our work including: - CAF Resiliance Fund - Card Factory - Partners for Health Programme - Children in Need - True Colours Trust - Shanly Foundation - Charles S French Charitable Trust - Garfield Weston - The Mabel Harper Charitable Trust - DCMS Pear - The Hamilton Wallace Trust - The Thales Charitable Trust - The Thomas Sivewright Catto Charitable Settlement - Children in Need 3rd instalment - The Sir Jules Thorn Charitable Trust / Ann Rylands - Souter Charitable Trust - National Lottery Community Fund - Chapman Charitable Trust - Colyer-Fergusson Charitable Trust - Albert Hunt ## **Organisations and individuals we wish to thank:** ## **Ronald McDonald House Evelina** Through our partnership with Ronald McDonald House Evelina we have been able to source space for ECHO to provide wellbeing clinics to NHS nursing teams from the cardiology teams. **Box4Kids** , run by Barrie Wells Trust, who who help us to provide special days out and experiences to children and young people affected by heart conditions by providing executive box tickets. **Chris Harris** , ECHO volunteer for kindly donating some beautiful books to ECHO to distribute to children visiting Evelina London for cardiac related appointments and treatments ## **We are little wild co’** 10% of profits of their festive range have been donated to ECHO, raising £84. ## **Congenital and Children’s Heart Forum** ECHO sits on the Congenital and Children’s Heart Forum. A National and local congenital and children’s heart Charites working together speaking collectively to forward the needs of patents and families living with heart disease, including: Little Hearts Matter, Tiny Tickers, Heartline, Children’s Heart Federations, Max Appeal, Sommerville Foundation, Downs Heart Group. ## **KCL – Public Engagement Advisory Board** The Wellcome/EPSRC Centre for Medical Engineering PE Engagement Advisory Board at King’s College London offers opportunities for ECHO’s Chief Executive and team to input into the activites and opportunities within King’s Wellcome/EPSRC Centre for Medical Engineering departments, grant panel experience for our fundraiser, introductions to community groups across Lambeth and Southwark & Partnership projects connecting researchers, scientist and the ECHO community. ## **Byron Gold** Thanks to Byron Gold & Choir for providing musical entertainment at a special event for cardiology staff, sponsored by ECHO. ## **Nikki Talbot – Studio HOIME** Thanks to Nikki for working with us to provide wreath-making kits to ECHO families at home, as part of our online Opening Doors event. ## **ECHO as Charity of the Year** ## **ICCM (Institute of Cemetery and Crematorium Management)** Thank you to Kevin and Eddie from the ICCM (Institute of Cemetery and Crematorium Management) for choosing ECHO as their selected charity and raising £10,000. Assistant Chief Executives Directorate Eddie, his granddaughter Eliana and their family are ECHO members, and decided they wanted to give back to the ECHO heart community which has supported them. ## **Vengan Legal Services** This year ECHO has been selected as Charity of the Year by Vengan Legal Services who are donating 10% of any will writing fees to ECHO. Thank you. ## **Impact of our services: (2021)** During 2021, ECHO welcomed **127** new families to the ECHO heart community ( **175 in 2020)** Each family represents parents, carers, children with heart conditions, siblings and other family members so the number of individuals ECHO supports is much higher. ## **Connecting our community** ## **Opening Doors** In November 2021, in response to COVID-19 restrictions, ECHO held the virtual event 'Opening Doors' on YouTube Live. The purpose of Opening Doors was to connect members with one another and with academic, medical and ECHO staff during a time of isolation. 11 medical and academic staff were interviewed as part of the event. In addition, an interactive wreath-making workshop was streamed which families took part in, 50 wreath-making kits were posted out on a first-come, firstserved basis. **63 ECHO families** watched live and ECHO’s YouTube channel had **264 views** on the day of the event. ## **ECHO Happiness Hub** At ECHO we collaborated with scientists from the School of Biomedical Engineering & Imaging Sciences at King’s College London to run 12 weeks of creative online ECHO Happiness Hub workshops. The livestreamed workshops were hosted by creative professionals, with several sessions featuring heart and brain researchers. The workshops aimed to provide families watching at home and in hospital a relaxing, distracting space to take part in a live creative workshop and connect with scientific researchers in a new way. _Huge thank you to everyone who helped put this event together. It has been extremely informative (even though we are nearly 13 years in to our journey) - it is great to hear about everything that goes on in the background that we are not aware of_ **- ECHO member** ## **Our offer to young people** To tackle the impact of COVID-19 on ECHO’s ability to host in-person events for young people, we created an online film club for young people affected by heart conditions, aged 11-24 years. **40** young people signed up and we held online sessions every month led by a professional filmmaker together with the ECHO Youth Team. Each young person received a Film Club pack to their home which included items to aid them in creating films from their smartphone, a clapperboard, ECHO Teens t-shirt, tote bag and notepad. The result we hope in 2022 is to release a short film made by young people. ## **Supporting NHS staff** While cardiac staff continued their excellent work supporting families of children and young people affected by heart conditions, ECHO wanted to continue our support of the cardiac team. We aided nursing teams to run 3 nurse wellbeing days, providing relaxation and catering as well as supporting team activities on the day. We supported a team cardiology event, providing wellbeing terrariums for every member of team cardiology, we also provided live music with an emotional tribute to the work team cardiology has done over the pandemic. Across 2021 we continued to award nominated recipients with ECHO Excellence Awards, these are unique to the cardiology department across the Evelina London, Royal Brompton Hospital and their networks and nominations arrived from parents/carers/patient & NUS colleagues to celebrate the difference that they make to cardiac families. _“It’s such a honour to get this award, thank you very much.”_ - ECHO Excellence awardee _“Thanks very much – you have made my day.”_ - Dr Aaron Bell, Head of Paediatric Cardiology, Evelina London. ## **Diversity and representation** Our first project carried out with the newly joint Evelina London and Royal Brompton & Harefield – ECHO led on an inclusivity project, starting off at a photo shoot event held at Chislehurst Golf Club where families affected by children's heart conditions came forward to represent their community and lives. We were delighted to meet with more people than we expected, and had the support from the Evelina London CHD Network Manager, the adult nursing team and ECHO volunteers. The result was a new catalogue of images which will be used by ECHO and Evelina London across communications. **80 ECHO members attended the photoshoot** , including 26 groups/families and 4 volunteers. ## **Support in hospital** ECHO continued our in-hospital support and reviewed ways we could expand our services while inhospital volunteering remained paused within Guy’s and St Thomas’ Trust. We sent our annual Mother’s Day and Father’s Day packs to parents in hospital – **50** of each of these packs were delivered to Evelina London’s Sky ward and PICU. We launched our new ECHO Cares pack – a welcome bag with information for parents arriving in hospital about how ECHO can help, key hospital contacts, an eye mask, notepad & pen and Eddie ECHO teddy. We sent **100** ECHO Cares packs to hospital every 3 months. In Summer 2021 we began work on a new resource, aimed at children with heart conditions and their siblings in hospital. The resource seeks to provide distraction and fun to children while undergoing treatment and recovery or spending time in hospital while a sibling undergoes treatment. The resource will launch in 2022. In addition to the above, ECHO sent arts and crafts into hospital for families during the festive period and at request of the Paediatric Cardiology Play Team. ## **Listening to our members** In 2021 we carried out a member-wide survey, with the aid of King’s College London Msc Health Psychology Placement Programme student. The questionnaire focused on finding out about our community’s experience of engaging with ECHO and how …................ **What are the most beneficial ways ECHO supports heart families?** The top three answers were: - Providing useful information to families when needed (eg website) - Providing answers to the questions from families, or helping them get questions answered by someone else - Connecting heart families with others in a similar situation **Where would you look if you are searching for information about your child’s treatment or care?** The top three answers were: - Evelina London website - ECHO website - ECHO Facebook group ## **Volunteer contribution** Volunteers continued to make an impact to ECHO in 2021, despite our in-person volunteering opportunities needing to remain paused due to the impact of COVID-19. Our group of dedicated antenatal volunteers have continued to support families whose unborn baby has been diagnosed with a heart condition, by joining the online version of ECHO’s cardiac antenatal class. We would like to thank our volunteers Amanda, Ben, Chloe, Claire, Elissa and Marion for giving their time and for their ongoing support. **2** volunteers supported ECHO remotely with communications projects, such as adding content to the ECHO website, reviewing and sharing ECHO parent and carer stories and creating content for ECHO’s social media channels. **2** volunteers gave their time to take part in the CHD Network’s Hospital Scoping Project, whereby ECHO connected with hospitals across the Evelina Guy’s & St Thomas’ Network to gather information about their patient and user involvement, specific cardiac volunteering opportunities and parent involvement. ECHO sits on the CHD Network Board and this project has greatly assisted the CHD Network team in their development of the network. **1** ECHO volunteer kindly took on the role of managing the online ECHO shop from their home, packaging and posting items purchased on the ECHO website including Eddie ECHO teddies, pens and t-shirts. We’d like to thank everyone who gave their time and skills during the year to help us to continue to deliver our services. We look forward to resuming in-person opportunities and seeing you soon. ## **Plans for future** ## **Looking ahead for 2022 we plan to:** - Develop our services - including a new online ECHO Forum - Extend our young people’s service to support from 0-18 to 0-25 years of age - Develop and expand our staff team - Review our website, language and communications to be more inclusive of congenital and acquired conditions - Prepare to reinstate our volunteer service - Plan to celebrate and increase fundraising activity over our 40[th] birthday in 2023 ## **Structure, Governance and Management** The charity is a private company limited by guarantee (company number 7867592). The company was incorporated on 1 December 2011 (as amended by special resolution registered at Companies House on 6 March 2012) and registered as a charity on 21 March 2012. The company was established under a Memorandum of Association which established the objects and powers of the charitable company and is governed under its Articles of Association. ## **Recruitment and appointment of trustee directors** The directors of the company are also charity trustees for the purposes of charity law. Under the requirements of the Memorandum and Articles of Association the trustee directors must retire at the first Annual General Meeting (AGM) and subsequently each trustee director may be elected to serve for a period of three years after which they must be re-elected at the next AGM. The minimum number of trustee directors is 5 and there is no maximum. The trustee directors can be appointed in general meeting or by the other directors. Questions arising at a meeting shall be decided by majority votes. The trustee directors are responsible for the general control and management of the charity. They give their time freely and receive no remuneration or other benefits. Any expenses reclaimed from the charity are set out in the accounts. The trustees meet approximately every 12 weeks and are responsible for decisions made in relation to the running of the charity. Members of the committee may join alternate meetings. Any trustee director may call a meeting of the trustee directors provided reasonable notice is given. ## **Risk management** The trustee directors have assessed the risks the charity faces and has put in place policies to manage the risks. For example, the charity has plans in place to protect against a downturn in the level of our income, finances are kept under review, Disclosure and Barring Service (DBS) checks are made, all members of staff have a contract of employment and comprehensive staff handbook which outlines all terms and conditions of employment and staff and volunteers working directly with children, young people or vulnerable adults are DBS checked. In 2019, we worked with Tom Searle of Britrisk Safety Limited to run risk assessment training to ECHO staff and reviewed our Health and Safety & organisation's Risk Policy. ## **Declaration** **The trustee directors declare that they have approved the trustee directors’ report above. Signed on behalf of the charity’s trustee directors:** ## **Jane Ward** |CharityName|EvelinaChildren'sHeartOrganisationLimited| |---|---| |WorkingName|ECHO| |CharityNumber|1146494| |CompanyNumber|7867592| |RegisteredOffice|CanterburyHouse,1RoyalStreet,London.SE17LL| |BoardofTrusteeDirectors|| ||JamesPincus| ||PatriciaJaneWard| ||JoannaEyeson| ||AlexBicknell| ||StephenWood| ||MarcHarry| |IndependentAccountant|DanestoneBusinessServicesLtd| ||52CrownDrive,Inverness.IV23QG| |Bank|CAFBank| ||25KingsHillAvenue,KingsHill,WestMailing,Kent,ME194JQ| ## ## ## ## ## ## |||Unrestricted|Restricted|TOTAL|TOTAL| |---|---|---|---|---|---| |||Funds|Funds|FUNDS|FUNDS| |||PeriodEnded|PeriodEnded|PeriodEnded|PeriodEnded| |||31December2021|31December2021|31December2021|31December2020| |||£|£|£|£| |IncomingResources|(Note3)||||| |Donations||164,268|125,847|290,115|378,878| |InvestmentIncome||42|0|42|138| |JobRetentionGrant&SSP||58|0|58|3,347| |Totalincomingresources||164M|125.847|290.215|382.363| |CostsofProvidingCharitable|(Note4)||||| |Activities|||||| |Costoffundraising||44,021|0|44,021|40,864| |CharitableActivites||51,960|121,679|173,639|135,276| |Governance||763|0|763|750| |TotalResourcesexpended||26.744|121.679|218.423|176.890| |Netmovementinfunds||67.624|4.168|71,792|205.473| |Reconciliationoffunds|||||| |TotalFundsbroughtforward||233.299||240,131|34.658| |TotalFundscarriedforward||300.923|11000|311.923|240.131| |||31December2021|31December2020| |---|---|---|---| |||£|£| |FixedAssets|(Note5)|785|0| |CurrentAssets|||| |Debtors/Prepayments|(Note6)|13|6,978| |Cashatbankandinhand||319,218|238,757| |`TotalCurrentassets`||`320.016`|`245.735`| |Creditorsfallingduewithinoneyear|(Note7)|(8,093)|(5,604)| |NetAssets||311,923|240.133| |FundsoftheCharity|||| |UnrestrictedFunds||300,923|233,299| |RestrictedFunds|(Note8)|11,000|6,832| |TotalFunds||311.923|240.131| ## ## ## |Note5:FixedAssets|| |---|---| ||Computer| ||Equipment| ||£| |`Cost`|| |At1Jan2021|2,838| |additions|1,179| |At31Dec2021|4.017| |Depreciation|| |At1Jan2021|2,838| |additions|394| |At31Dec2021|22| |NetBookValue|| |At1Jan2021|0| |At31Dec2021|~S| ## ## |Accruals|£| |---|---| |Tradecreditors|4,753| |PAYE,NIC,Pension|3,340| ||`8`.093| ## |BalanceB/F|6,832| |---|---| |RingfencedDonations|125,847| |`Expenditure`|`(121,679)`| |BalanceC/F|11.000| CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Independent Examiner's Report Report to the tru$tse mombors of EVELINA CHILDREN'S HEART ORGANISATION LIMITED On accounts for the year endèd 31 DECEMBER 2021 Charity no (Wany) 1145494 Set out on pays I rep)rt to the trustees on my examinatTron of the aCc￿nts of the above charity ('the Trusf) for the year ended 3111212021. Responsibilities and basls of report As the ¢harity's tnjstees. you are responsible for die preparati¢X of the accounts in accordan￿ with the requirements of the Charities Act 2011 (Ihe Act-). l ￿pOrt in respect of my examinats'on of the Trust's accounts carried out under section 145 of the 2011 Act and in carrying out my examination. I have followed all the applicable Directions given by the Charity Commi$$ion under section 14q51(b) of the Act. Independent The charity's gr05s income exceeded £2XJ,000 and l am qualified to •xaminerf8 8latem•nt undertake the examination by being a qualtfied member of Thè Institute of Chartered Accountants wi England and Wales. I have completed my examination. I confimi that no material matters have come to my attention in connection with the examination which gives me cause to believe that in. any material resped.. the accountng record5 were not kept in a¢¢ordance wrlh section 130 of the Charities Act: or the accounts did not ac¢ord wrth accounting records; or the accounts did not comply with the apFlicab￿ requirements conceming the fonn and content of accounts set out in the CharTties (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a Irue and fairf view which is not a matter considered as part of an indeperKlent examination. I have no GOn￿mS and have come across no other matters in connection with the examination to which attention should be drawn in this report in LKder to enable a V¢)per uThJerstaThling of the a¢￿unt5 to be reached. Slgned: Date: 28 AUGUST 2022 Name: MELZ4 HELEN LINFIE Relevant professional qualification{$) or body lif any)". ICAEW IER Oct 2018 Address: DANESTONE BUSINESS SERVICES LIMITED 52 CROWN DRIVE INVERNESS. Pf2 3QG Section B Disclosure Only complete rf the examiner needs to highlight material matters of con¢em (see CC32, Independent examinatson of charity accounts: dIrect￿nS aTr guidance for examiners). Glve hero brfèf detslls of any Items that the examlnerwlshes to disclose. IER Oct 2018