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Annual-Report-And-Accounts Annual-1Report April 2014 to -31and March- Accounts2015 Chair’s foreword “Collectively our Roald Dahl Nurses have provided almost 600 years of care for children and their families” Contents “Roald Dahl’s Marvellous Children’s Charity helps Inspired by the inventive spirit of Willy Wonka, this was Chair’s foreword 3 children with rare and serious long term conditions also a year of new activities as part of the transition into What we do 4 to be not just healthier but happier.” our new strategic direction. We launched The Marvellous Nurse Inventing Room with the Burdett Trust for Nursing, What we did in 2014-15 In many cases we do this is in partnership with others. and we ran a pilot of our updated Marvellous Family My personal highlights were our partnerships with Grants. Meanwhile, we continued supporting thirteen Overview 5 Great Ormond Street Hospital and Birmingham Children’s other charities to find new ways to help seriously ill Marvellous Family Grants 6 Hospital which led to the creation of two new Roald children as part of the Family Resilience Programme, which Dahl Nurse posts, with a second post at Birmingham was funded last year with proceeds from the Readathon Roald Dahl Children’s Nurses 8 Children’s Hospital on the way. We are working with campaign by our partners at Read for Good. both hospitals, as well as children and their families, to Research and Invention 12 ensure that our nurses deliver the best possible support I would like to express our thanks for the support that Influencing and Sharing 16 and services. we receive from the Dahl family through their donation of a generous share of royalties. Their philanthropy, What we will do next It was a busy and productive year for our staff and including the gift-in-kind support of rent and utilities volunteers, including our valued advisors and my fellow from the Roald Dahl Literary Estate, is invaluable for a Our future plans 17 trustees, not least because we welcomed our 50th small charity. Roald Dahl Nurse. To date all (except one) of our Roald How we are funded Dahl Nurses continue in post since we created them, I would also like to say a warm marvellous thank you to Our finances 18 including our first Roald Dahl Nurse in 1992: collectively all our partners and supporters. I hope, like me, you are providing almost 600 years of care for children and looking forward to what else the future will bring! How we are organised 19 their families. To celebrate, we gathered our Roald Dahl Nurses together from across the UK for a conference to Why we are presenting the financial information below 21 help them to continue improving the lives of seriously Martin Goodwin, Chair. Auditor’s report 22 ill children. 24 November 2015 SOFA 23 We welcomed our 50th Roald Dahl Nurse Liz Odeh (pictured below) Balance Sheet 24 Notes to the Accounts 25-31 2 3 What we do What we did in 2014 -15 We help seriously ill children brave the unknown The state currently focuses its support to meet the There are thousands of seriously ill children in the UK material (i.e. wealth) and physical (i.e. health) needs of with a rare or undiagnosed medical condition. Coping seriously ill children. We primarily aim to address their Overview not just with the illness but also the unknown puts an unmet emotional and social needs. Overview of Activity and Grants Made, 2014-15 immense strain on these children and their families. 1. Happier Lives Seriously ill children will have more 2014-15 2013-14 positive self-esteem and higher hopes for their life We are there to help them and their families brave the Programme however long or short it may be unknown, so they can all enjoy a more marvellous life Headline Spending* Headline Spending* together. 2. Stronger Families Families with a seriously ill child will receive the emotional support they need Marvellous Family The need 1 54 families helped £21,723 258 families helped £85,419 Grants Being seriously ill can be frightening, particularly for a 3. Better Healthcare Seriously ill children will receive child. This is especially true for rare and undiagnosed more integrated child-centered NHS care that helps 23 diverse projects illnesses when no-one understands what’s happening to them to be happier as well as healthier 2 you. It is lonely too, in hospital or at home while other Project Grants - - over 14 conditions £235,376 children are having fun. 4. Greater Understanding Seriously ill children and across UK their families will feel more understood and included Families do an amazing job on their own, but don’t 2 new nurse posts, in society 3 Roald Dahl Children’s 2 new nurse posts, 6 always get the support they need. Without the help and 12 nurse training £225,907 £149,325 Nurses nurse training grants reassurance of an expert, family members are more How we achieve our aims grants likely to experience feelings of anger, guilt and depression. We support children and their families, find ways to improve the care they receive, and work to improve 4 Roald Dahl Research The NHS does not always have the resources or expertise society’s perception of disability. Research and 12 nurse-led Award towards to know what to do. There are so many rare conditions, £167,929 £19,334 and so few children affected by each one, that historically Our Marvellous Family Grants2 (page 6) are individually Invention research projects second year of the the NHS has not prioritised care, research or treatment. tailored to support children and families and can include Disease Registry fun days out or respite care. Our Roald Dahl Children’s Children with rare illnesses can also be particularly Nurses (page 8) can provide care, information and support, Remained active Remained active overlooked by society, and this can mean they miss out in hospital and at home. members of CDC members of APPG on opportunities that other children enjoy. and NCCHW, and Our Research and Invention (page 12) champions seriously SCT and joined CDC joined SHA, RDUK 4 The difference we want to make ill children by combining the experience of children and and the NCCHW , Influencing and and TSL3. We help seriously ill children and young people up to families with the expertise of health and social care 5 - attended 8 meetings. - Sharing their 21st birthday throughout the UK, and focus upon professionals. First phase of new Ran workshop supporting those with rare, undiagnosed or low profile Precious Moments session on conditions.1 Our Influencing and Sharing (page 16) uses our knowledge How we are funded to help influence key government policies and practises. programme collaboration across completed. the sickle cell sector 1 Excluding cancer and mental health. 2 Stronger Families Programme was the working name for the 2014 pilot. 2 projects awarded in 2012-13 for which Less cancelled or 1 Marvellous Family payments have been £(400) £(21,119) 6 refunded grants Grant refunded refunded or commitments cancelled Total grants £415,159 £468,335 7 expenditure Non-grant £137,557 £105,764 8 expenditure Total charitable £552,717 £574,099 9 expenditure *The spending in rows 1 to 4 is grant expenditure only. Non-grant expenditure incurred by programmes including Programme 5, is not apportioned against individual programmes, and is shown on row 8 in the table above. See Note 7 to the accounts. 3CDC: Council for Disabled Children; NCCHW: National Council for Child Health and Wellbeing; SHA: Specialised Healthcare Alliance; RDUK: Rare Diseases UK; TSL: Together for Short Lives. 4APPG SCT: All-Party Parliamentary Group on Sickle Cell and Thalassaemia; CDC: Council for Disabled Children; NCCHW: National 4 Council for Child Health and Wellbeing. 5 What we did in 2014 -15 Marvellous-Family-Grants Type-of-Family-Grants-2014-15 Percentage What we provided Grant Type of Grants Swimming, horse riding, football, Sea Cadets, local leisure Specialist Lessons/ 18.5% centre, local activity centres Membership Reiki, counselling, play, music, reflexology, parenting advice, Therapy Sessions 18.5% psychotherapy, speech and language, multi play Mia’s-story Driving lessons, conferences, sensory equipment Ad-Hoc 14.8% Thirteen month old Mia has a condition that iPad Mini or Android to assist with education and peer to peer Comms Tablet/iPad 14.8% meant she was born with only half a heart. Mia contact or access groups has defied all the odds and after two major heart Day out for family bonding or to make memories Days Out 13% surgeries, a stoma and a bowel reversal, she is currently stable. Baby monitor/video Physical Equipment 9.3% Overnight stay to attend an activity centre, play centre, themed event Break Away 7.4% Travelling to and from hospital and the lack of an income means luxuries such as family holidays and days out are not an option. Mia’s family support Extra support for parents Respite Care 3.7% worker contacted us and explained their situation. We provided Mia’s family with a grant of £500 so that they could go on a much needed short holiday. How we made a difference 46% of our grants intended to help specific family members, 24% directly supported the seriously ill child, and 30% helped both family and child. The following bar chart shows the intended outcomes of both family and child. Our aim Intended-outcomes Our Marvellous Family Grants help seriously ill children and young people whose families are experiencing Location-of-Family-Grants-2014-15 Provide a life outside of their illness Percentage financial hardship, in order to create Happier Lives and UK Country or Region Stronger Families.
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