Annual Review 2016 - 2017 “We feel that nothing is impossible with our nurse on our side. She gives me strength and has taught me how to manage my boys’ condition at home”

Lisa, Mum to Taye and Tyrell Mission, Vision and Values

Mission For every seriously ill child to have the best possible healthcare.

Vision 1. A specialist nurse for every seriously ill child. Every child with a serious illness in the UK should have access to the knowledge, skills and experience required to meet their healthcare needs, no matter where they live. That’s why we create and fund specialist nursing posts within the NHS, across the UK.

2. Quality care for every seriously ill child. It is essential that children’s nurses across the UK are fully supported to develop the knowledge and skills necessary to deliver the best care possible. That’s why we provide professional support to our Roald Dahl Nurses[1] to enhance their skills and foster innovation to improve services for seriously ill children.

Strategic aims: 2017 - 2020 1. Funding up to 15 new children’s nursing posts across the UK covering areas of need, whilst supporting NHS Trusts to retain existing Roald Dahl posts. 2. Ensuring Roald Dahl Nurses are recognised as delivering a marvellous standard of kind and safe care to children, adolescents and families, whilst demonstrating leadership and innovation within the health and social care sector. 3. Increasing awareness of the work of Roald Dahl Nurses amongst both the general public and across the NHS. 4. Creating an infrastructure to support Roald Dahl Nurses across the the UK. This will include shared learning opportunities, professional training grants and the opportunity to request individual grants for families in their care. 5. Leading partnerships, not just with the NHS, but with funders, other charities and any organisation working to improve the lives of seriously ill children. 6. Demonstrating the power and impact of working as a team across the UK. 7. Promoting quality of care in transition from children’s to adults’ NHS services. 8. Advocating innovation in children’s healthcare.

[1] The term ‘Roald Dahl Nurses’ is inclusive of other healthcare professions funded by the charity, which encompass seriously ill children’s holistic needs, including psychological needs. 3 Chair foreword

2016 - 2017 was a remarkable year for the charity, in large part because 2016 was also the centenary of Roald Dahl’s birth. The centenary celebrations, led by the Roald Dahl Story Company Limited (formerly the Roald Dahl Literary Estate), provided the charity with an unprecedented opportunity to raise its profile across the nation. One of many memorable events was an invitation to the charity from the centenary’s patron, Her Royal Highness the Duchess of Cornwall, to attend the decoration of the Christmas tree at Clarence House. Five Roald Dahl Nurses, five children and five parents, representing diverse regions of the UK, along with a cross-section of serious illnesses, enjoyed an unforgettable morning of royal hospitality.

The charity was primarily focused on the expansion of its specialist paediatric nursing programme. Raising more money than ever before,“ it committed funds for five new nursing posts in 2016 - 2017 and recruited four nurses to posts approved the previous year. These included new specialist nursing posts in epilepsy and non-malignant haematology

and the charity’s first ever play specialist at University College Hospital, London. By the end of March 2017, there were more than 50 Roald Dahl Nurses in post across the country and the charity had developed plans for funding an additional fifteen posts over the next three years. The charity’s family grants programme which supports families with a seriously ill child facing financial hardship has been maintained and provided funding for 178 families in 2016 - 2017. The charity is reliant on voluntary donations for the work that it undertakes, so we remain enormously grateful and “ indebted to all the individuals, companies and organisations who support us. We are particularly grateful to the generosity of our major funder The Roald Dahl Charitable Trust (RDCT), which is itself funded by the Roald Dahl Story Company Limited. Their support covers the charity’s core running costs and means that every penny raised elsewhere can go directly to the charity’s beneficiaries, seriously ill children and their families.

On behalf of the Trustees, I would like to thank all Roald Dahl Nurses and charity staff for their energy, commitment and dedication throughout the year. We are also indebted too to our Presidents and Patrons, who have time and again shown their dedication and commitment to the work of the charity by giving their time so generously.

Donald Sturrock

CEO foreword What an exciting year for the charity and all our nurses! Whilst the charity

remained focused on raising money to fund new Roald Dahl Nurses to make a difference to the lives of seriously ill children, Roald Dahl’s centenary year also provided the charity with an opportunity to involve our nurses in some of the celebrations as a way of thanking them for the marvellous work that they do. “

Our nurses met with HRH the Duchess of Cornwall at the Royal Festival Hall to mark the opening of the Centenary year, met her again to celebrate the centenary of Roald Dahl’s birth in Cardiff and finally by attending the special event at Clarence House. Our nurses helped to raise awareness of the work of the charity by attending the Chelsea Flower Show, the Premiere of“ The BFG film and taking part in various interviews with the media across the UK.

It truly felt that it was a year when charity staff and nurses were working together to ensure that even more seriously ill children could be supported in the future by their own specialist Roald Dahl Nurses and health professionals. My sincere thanks go to everyone who made this possible within the NHS, associate organisations, our partners, new supporters, Patrons, Trustees and staff - all of whom have been simply marvellous.

Jane Miles 4 Celebrating the Centenary – Roald Dahl’s Legacy

Roald Dahl 100 13 September 2016 marked 100 years since the birth of the world’s number one storyteller, Roald Dahl. Celebrations were held worldwide.

The centenary provided an opportunity for Roald Dahl’s Marvellous Children’s Charity to celebrate Roald’s charitable legacy. His family was affected on several occasions by serious illness, tragedy and loss and he always took practical, positive steps to help those around him who were suffering. He developed pioneering new neurological medical treatments, such as the Wade-Dahl-Till Valve. He fundraised actively for numerous children’s charities and gave generously to seriously ill children and their families. Roald often said that if he hadn’t been a writer, he would have liked to be a doctor.

Roald’s wife Felicity (known as Liccy) shared his passion for improving children’s literacy, so after his death, she endowed the Roald Dahl Museum and Story Centre in . She also felt compelled to carry on his medical legacy, creating the Roald Dahl Foundation in 1991, which changed its name to Roald Dahl’s Marvellous Children’s Charity in 2010. Liccy now says that it is her dream that every child with a complex illness in the UK has access to a Roald Dahl nurse to help them.

Looking Forward During 2016 – 2017, Roald Dahl’s Marvellous Children’s Charity celebrated its 25th anniversary. With 54 Roald Dahl Nurses now in post across the UK, the charity continues its mission of providing the best possible healthcare for seriously ill children. It plans to fund at least fifteen new nurses in the next three years and hopes that successful fundraising initiatives will allow it to fund even more than that. “We are creating and funding more and more Roald Dahl Nurses across the UK. We encourage them to come up with improving the way their healthcare is delivered and looking at problems with fresh eyes. We encourage them to innovate – something Roald would have loved.” Liccy Dahl Photo: Mark Gerson 5 Our Nurses - Highlights and Achievements

Roald Dahl Nurses are specialists in their field. A large number of them focus on epilepsy and other neurological conditions – a speciality in which we have developed significant expertise. 8 nurses specialise in haematological conditions including sickle cell anaemia and thalassaemia, while 2 specialise in rare diseases, 1 in syndromes without a name and 1 in paediatric palliative care.

Our Roald Dahl Nurses Programme funds the first two years of a new specialist paediatric nurse or other healthcare professional, with a particular focus on posts that are seen as innovative as well as conditions which do not receive the attention they deserve, such as rare diseases and sickle cell anaemia.

At 31st March 2017, there were 54 Roald Dahl healthcare professionals in post throughout the UK comprising of specialist nurses and occupational therapists:

• 41 of these are based in England • 8 in Scotland • 5 in Wales

We estimate that at any one time, over 10,000 children and their families are benefitting from the specialist care of a Roald Dahl nurse.

New Roald Dahl Nurses who came into post:

Non-cancerous Blood Conditions In the UK, children living with long-term blood conditions such as blood-clotting disorders like haemophilia and anaemias like sickle cell anaemia and thalassaemia are serious and can be life-threatening. These children, young people and their families need the support of a Roald Dahl specialist nurse to co-ordinate their care as well as giving advice on medical, emotional and social issues.

Giselle - Roald Dahl Haematology Transition Clinical Nurse Specialist at King’s College Hospital NHS Foundation Trust

Roald Dahl Nurse Giselle supports young people aged 16 to 24 with serious, long-term blood conditions, moving from child to adult services. As an expert practitioner, she effectively co-ordinates and delivers a specialist service for patients with a diagnosis of chronic conditions such as sickle cell and thalassaemia, ensuring a seamless transfer to adult services.

Expert transition of care for young people with non-malignant blood conditions is essential because it:

• Reduces the rate of mortality. • Lessens anxieties of young people and carers. • Empowers young people to fulfil their ambitions. 6 Rare Diseases Due to improved care and advances in medicine, children with rare, serious conditions live much longer and many more are reaching adulthood. It can be frightening for the young people and their families when they are transferred from child to adult services, without the necessary transition care plan in place. Adult teams may not be familiar with the management of some rare conditions because they have not had the experience of dealing with them. The care of children with rare conditions involves seeing multiple specialties and very often requires quite complicated coordination between services. Without the help of a specialist transition nurse, some children may get ‘lost in the system’ which could result in serious consequences for the young person and their family. The transition process needs to begin a few years before the young person turns 18 as it requires a lot of coordination, not only between specialties and hospitals but also across education and social care. Each patient has different requirements and thus needs an individual care plan.

Janet - Roald Dahl Transition Rare Diseases Co-Ordinator and Sarah - Rare Diseases Specialist Nurse at Birmingham Women’s and Children’s NHS Foundation Trust

Janet, (the charity’s first Transition Rare Diseases Co-Ordinator) and Sarah care for children with rare diseases in hospital and at home and school. They ensure their care plans are followed, by:

• Supporting the families at appointments to ensure continuity of care. • Providing effective communication between the many different speciality teams. • Organising and supporting Tuberous Sclerosis and Genetics Clinics at the hospital.

Janet, as a Transition nurse specialist, also works closely with University Hospital Birmingham to ensure smooth pathways of transition to adult services for her patients.

Janet says, “I am proud to support families, making their navigation of the health services less stressful and being able to problem-solve for them.”

Janet and Sarah’s plans for the future are to set up nurse-led clinics once they are settled into the new Rare Diseases Centre which opens in 2018.

Stacey whose family has been helped by Roald Dahl Rare Diseases Nurses says, “We were admitted to hospital with my son and told that he might have a life changing or life limiting condition. Hearing those words devastate any parent. But without having the Roald Dahl Nurses steer us in the right direction and show us hope when we so desperately needed it, I honestly don’t think I would’ve coped. Janet and Sarah, you are a true credit to the charity and the hospital. Thank you so much for providing such an amazing service!”

7 Supporting Our Nurses As well as creating much needed new nursing posts across the UK, Roald Dahl’s Marvellous Children’s Charity also supports the training and development of Roald Dahl Nurses and healthcare professionals. The charity makes grants available to the nurses during the two-year period of funding and beyond, if the post keeps the Roald Dahl name and link with the charity.

The training and development support enhances the service that the nurse specialist/healthcare professional can provide to patients. By attending courses and conferences, the nurse’s specialist skills are kept up-to-date for the benefit of the seriously ill children and the nurse’s own continuing professional development.

Below are a few examples of training courses and conferences that Roald Dahl Nurses took part in during 2016 - 2017.

Purpose of Training & Nurse Specialism Nurse Location Development Grant

Attended the ESNA (Epilepsy Nurses Association) Epilepsy Cardiff Conference in Manchester

Two of our epilepsy nurses undertook the BPNA’s Epilepsy Newport PET 2 (Paediatric Epilepsy Training) course in Bristol

Attended the 3-day ILAE (International League Against Epilepsy Edinburgh Epilepsy) British Annual Scientific meeting in Dublin Attended the UKABIF’s (The United Kingdom Acquired Brain Acquired Brain Injury Southampton Injury Forum) 8th Annual Conference ‘From Surviving to Thriving with Acquired Brain Injury’ in London Attended the 2017 BPNA (British Paediatric Neurology Neuromuscular Cambridge Association) Annual Conference

We provided funding for Roald Dahl Epilepsy Nurse Specialist Michelle in Edinburgh, to attend the 3-day International League Against Epilepsy conference in Dublin in 2016.

Michelle said, “The aim of the meeting was to showcase and discuss a range of innovative and new research topics relating to epilepsy care and management. It was a fantastic opportunity for me to attend high quality teaching sessions provided by many experts from around Europe and America. Its objective was to improve epilepsy management in Britain and Ireland and I was excited to be able to build upon my knowledge.

As a paediatric epilepsy nurse specialist, the conference was very relevant to my day-to-day practice as it has provided me with a fantastic opportunity to build upon and update my epilepsy knowledge. This will help me to continue to deliver high quality care to my patients and families. It will also allow me to pass on and share any new knowledge or ideas that could improve our practice within my hospital team.

The conference allowed me to network with other specialist centres and we could share our ideas with each other. I found the conference very beneficial overall and it highlighted to me just how lucky I am to have a job which I love. Thank you to Roald Dahl’s Marvellous Children’s Charity for allowing me to be part of this unique learning opportunity.” 8 Roald Dahl Nurses work across the UK to support seriously ill children, young people and their families.

Jo, Epilepsy, Aberdeen Helen, Bone Marrow Transplants, Manchester

Janet, Rare Diseases, Birmingham

Louise, Epilepsy, Cardiff

Charlotte and Lilly, Michelle, Giselle, Epilepsy, Acquired Brain Injury, Haematology, Southampton Brighton London 9 Growing Innovation in Epilepsy Care

In November 2016, at our annual nurses’ conference, we paid tribute to Anne Sweeney who was the very first Roald Dahl children’s nurse. In 1993, Anne joined the neurology team at Alder Hey Children’s NHS Foundation Trust, as not only the first Roald Dahl nurse, but also the first paediatric epilepsy nurse specialist in the UK. The charity’s founder and president, Liccy Dahl, made consultant, Dr Richard Appleton’s dream come true after his call to the charity, then known as the Roald Dahl Foundation, asking for support. It was an innovative role and the start of the Roald Dahl Nurses’ Programme. There are now more than 30 Roald Dahl epilepsy nurse specialists across the UK.

During the 23 years of being a Roald Dahl Nurse, Anne has cared for thousands of children and young people with epilepsy, many of whom have had her support from diagnosis in early childhood through teenage years and transition to adult services.

Anne says, “I have nursed for 46 years and for 23 of them have had the privilege of being a Roald Dahl children’s epilepsy nurse at Alder Hey Children’s Hospital. Mine was the first children’s epilepsy specialist nurse post in the UK, it would not have been possible without the support of the charity.

Children and their families who receive a diagnosis of epilepsy now have contact with a specialist nurse. They are provided with information, advice, contact when needed, and also epilepsy training on recognition and management of seizures for all those involved with the child. This gives the family more confidence to allow the child to live as normal a life as possible.”

Anne is passionate about the importance of preparing young people with epilepsy for transition to adult services and believes that the way to improve the process is by listening to the voices of the young people and finding out what their concerns are. Prior to her retirement from her role as a Roald Dahl Nurse, Anne led ‘Get Ready Coz Here We Come’, an innovative project with young people during which they produced a short animation film highlight- ing their worries and needs. The project was part of the Marvellous Nurse Inventing Room in collaboration with The Burdett Trust for Nursing. Get Ready Coz Here We Come • Epilepsy is recognised to be the most common neurological condition in adolescence. • Epilepsy can have a profound impact socially and emotionally on teenagers in particular. • The project was aimed at improving the quality of care for young people affected by the condition. • Concerns about care were expressed through the medium of art, including, storyboards, hand-made character models and a film.

Sophie Dziwinski, Head of Programmes at Roald Dahl’s Marvellous Children’s Charity said: “Transition from child to adult healthcare services is incredibly important for young people in the UK with any condition. Projects such as this really give young people a voice and enable practitioners to develop transition services in relation to epilepsy for future generations.”

10 Growing Innovation – The Marvellous Nurse Inventing Room

The Marvellous Nurse Inventing Room was a three-year programme, in collaboration with The Burdett Trust for Nursing, which funded twelve specialist nurse-led innovation projects that focused on finding new ways of supporting and caring for seriously ill children and young people. The funded projects produced innovative and engaging products and services; most of them were co-created with the involvement of children and young people using participatory methods.

Products developed consisted of: A A A suite of short Facebook An tablet group information apps film app 2 2 animated validated A films questionnaires A A An patient and 1 resource art storybook document wall assessment and doll book tool

The approaches used were new to most nurses leading the projects and were for the purpose of supporting and providing information, improving patient experiences and providing creative therapy. The experiences were both educational and enjoyable for participants and staff.

Listening to Children and Young People Seriously ill children and young people have been given a voice and an opportunity to improve the services that they use. Through taking part and coming together with other families in workshops, focus groups and events, project leaders reported that young people and their families have improved their abilities to cope, found new sources of support and in some cases, improved their family relationships. Nurses Learn New Skills Nurses have learnt new skills in leadership and project management and enhanced their child-centred approach through participatory research methods and approaches. Confidence to lead within a multi-disciplinary team increased and collaboration with external organisations, other nurses, wider medical teams, parents and families significantly improved. Creative and Innovative Products and Services Innovation plays a key role in improving children’s healthcare services and it is one the charity takes very seriously. Technology and artistic activities can also play a vital role in this. Several arts and technology products were created: short films to tell the experiences of life with a long-term or serious condition; resources to increase children and young people’s knowledge and improve their resilience and happiness; and new, validated questionnaires to help services capture patient experiences more accurately. The Value of a Family-Centred and Holistic Approach A family-centred approach to care is vital. It is important to acknowledge the importance of the happiness and wellbeing of the entire family of a seriously ill child or young person. Addressing the holistic needs is also important and considering their social, emotional and clinical needs ensures that children are not defined by their condition.

In using multiple family-centred and holistic approaches to engage with children and young people, nurses learnt about different forms of interaction, including formal and informal and the impact of environment. 11 Family Grants – Supporting Families in Need

Our Marvellous Family Grants provide support to families who have a child or children with a serious long-term condition, and where the family is living in financial hardship. We support children and young people up to their 25th birthday and our family grants are open to families from across the UK who meet our medical and financial criteria. Funding is allocated according to the needs of the child and their family. In 2016 - 2017

The total amount awarded: £70,078 Number of families supported: 178 The types of family grants that we have provided: • Physical equipment, such as specialist car seats, pushchairs, epilepsy monitors, and sensory toys. • Practical household items, such as white goods (mainly fridges to store medication & washing machines/tumble dryers to help parents cope with high volumes of washing), extra bedding, warm clothing (for instance, for children with sickle cell disease who need to maintain their temperature to avoid going into crisis). • Therapies for children and young people, such as art, play and music therapies. We have also funded physiotherapy when the amount the family can access on the NHS is limited and when additional therapy would make a considerable difference. • Access to regular confidence-building activities for the child, such as horse-riding, swimming and dance. • Financial assistance to enable families to attend conferences and support groups relevant to their child’s medical condition. • Financial support with transport costs to hospital appointments (where the family does not qualify for the NHS Healthcare Travel Scheme) or for a parent to visit their child in hospital. Grant Impact Information collected from family feedback forms help to inform us of the impact that the grants are having on the child and family. Each grant can have a number of different impacts on each child and family, as shown below.

NB: These forms are non-mandatory and the response rate was 16%.

Helping you and your child to attend Building family relationships medical appointments 5% 7% Helping families to understand & cope 6% with child’s condition Helping to make life easier 14% for you and your child 6% Giving space and respite for the family

Helping to keep your child safe 10% 16% Relieving your worries and stress Providing support with learning Helping your child to 3% and schoolwork have fun and relax 13% 6% Learning new skills or hobbies Building your child’s independence, 4% Spending more time with friends self-esteem and confidence 9% 1% Helping your child to express feelings and talk with others

“The money we received from the grant was a big help for us. We have such huge expenses in helping our child with all of her challenges so every little helps in easing this pressure. Thank you.” 12 Where The Money Was Spent:

Families from across the UK are eligible to apply for our support, and we do not have a financial cap per region. Application rates differ by region according to the needs of the children, the awareness of the grants programme, and the pro-activeness of applicant officers from within health and social care. The graph below shows the number of applications received and granted by region.

60 50 40 30 20 10 0

London Wales Scotland South East South West North West North East East Midlands West Midlands East of England Northern Ireland Number of applications received

Number of applications granted Yorkshire and the Humber

Here is an example of one family helped by a family grant this year

Jacob was diagnosed at the age of 10 with epilepsy. His parents were worried about him having seizures at night-time when they weren’t with him to ensure his safety. Jacob’s Roald Dahl Nurse Louise applied for a Marvellous Family Grant for an epilepsy bed alarm with a movement sensor.

Roald Dahl nurse Louise said, “Many of the families we support are from socially deprived areas and are on low incomes, so often are unable to fund equipment such as bed monitors for themselves. These monitors provide many families with the confidence to sleep at night. This reassurance alleviates anxieties and changes family dynamics at home. Essentially the aim is to ensure that the children remain safe and can continue to lead a normal life, access school, and activities in the community. Having the ability to make referrals to the charity for family grants is a way for us to provide the much-needed financial support to our families.”

Jacob’s parents are really pleased with the epilepsy mat and monitor. They said, “We can relax at night-time knowing that if our son has an epileptic fit, we will be alerted and can go to him and keep him safe. Thank you very much for the epilepsy mat and alarm, which have given us peace of mind and made our life so much easier.” 13 Believing in Magic

And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it. Roald Dahl,

At the beginning of 2015, The King’s Fund issued a press release with the headline “NHS enters 2015 - 2016 facing biggest challenges in recent history” citing mounting deficits, worsening performance and declining staff morale. Against this backdrop the role of the charity sector in supporting the NHS had never felt clearer. Having the platform of the Roald Dahl Centenary year to raise awareness of the work of the charity and raise more money to fund new nurses was fortuitous.

However, it was clear to us that we also had to spend time focusing on our existing nurses and listening to what they needed. Roald Dahl Nurses from across the UK, along with representatives from NHS England, the Queen’s Nursing Institute, The Burdett Trust for Nursing, the Royal College of Nursing and Liverpool John Moores University, came together at Alder Hey Children’s Hospital for the Annual Nursing Conference on 18 November.

Roald Dahl Nurses and Liccy Dahl at the 2016 nurses’ conference

The objectives of the conference were to inspire Roald Dahl Nurses, inform them about the history of the charity and showcase the impact of their work. Inspiring talks were delivered from several speakers, including a motivational talk on leadership, aimed at supporting nurses’ learning and development. Jane Miles, CEO, opened the conference with a presentation on Believing in Magic, discussing themes such as the value of listening to families, demonstrating impact of what the nurses do, collaboration, innovation and being an ambassador. The day provided an opportunity for Roald Dahl Nurses to network with other healthcare professionals and share best practice, in turn contributing towards their professional development.

The conference included specialism hubs, enabling the nurses to participate in discussions about the clinical conditions they manage and challenges they face, further enabling the charity to identify what support they need. What’s more, some of the Marvellous Nurse Inventing Room projects were showcased to celebrate their impact.

Roald Dahl Nurses said, “Thank you for allowing me to be part of such an amazing day! I feel so proud to be a Roald Dahl Nurse. You make me feel appreciated, supported and valued on many levels. You all work very hard. All of the sessions were outstanding and very inspiring.”

“I have been nursing for 34 years and attended many conferences. This is by far the most inspirational study day I have attended.” 14 Looking Forward – What’s Next?

Our feelings in looking forward to 2017 - 2018 are ones of nervousness coupled with excitement. The Centenary Year gave Roald Dahl’s Marvellous Children’s Charity a fantastic platform to raise more money and gather new supporters, raising increased awareness of the charity and its work. Our fundraising initiatives are already yielding new partners and concrete results, but the journey is only just beginning. The demand within the NHS for specialist nurses is increasing year on year. We will aim to do our best to meet that need. Therefore in 2017 - 2018 we intend to: • Fund a minimum of 5 new posts working in the NHS. • As a UK-wide charity, we intend to visit all our nurses in Scotland to discuss the needs of children’s nursing there and how we can better support them in their work. • Continue to raise the profile of the marvellous work that our nurses and health professionals are doing at every opportunity. • Focus on sickle cell and rare and undiagnosed diseases, raising awareness of these conditions both in the community and amongst other healthcare professionals. Through advocacy, we will aim to improve the inequity of care for children and families affected by these conditions, in turn enabling Roald Dahl Nurses to further develop their specialist skills. • We will also review our Marvellous Family Grants programme to ensure that it is fit-for-purpose and responsive to the needs of our nurses in caring for the families of seriously ill children. • Ensure that the infrastructure of the charity including staffing and processes are fit for the future.

We aim to: Advocate on behalf of children and families affected Continue by serious to support conditions families through the Marvellous Family Grants Help an programme additional 1500 families per year (on average) through 5 new nursing posts

15 Fundraising – Centenary Events

This year has seen many extraordinary events take place to mark the Roald Dahl Centenary and raise funds for Roald Dahl’s Marvellous Children’s Charity.

Dream Jars During the summer, the streets of London were transformed as a marvellous trail of 50 Dream Jars, containing the dreams of celebrities, were dotted around the city. Four of these were particularly special, as they were auctioned in aid of our charity. We also attended a wonderful event where some of the Roald Dahl Nurses and families we support joined our Patron, Sir , and Her Royal Highness, The Duchess of Cornwall to unveil their Dream Jars. Sophie Dahl’s ‘Happy Jumble of Life’, Sir Quentin Blake’s ‘I Dreamt I Could Fly’, Tim Minchin’s ‘Theatre of Dreams’ and Her Royal Highness, The Duchess of Cornwall’s ‘Read’ raised a magical total of £22,446.

The Dahlicious Dress Up Day Every year on 13 September (Roald Dahl’s birthday) and throughout the year, Roald Dahl’s Marvellous Children’s Charity celebrates The Dahlicious Dress Up Day, where schools and community groups across the globe, dress up as their favourite Roald Dahl character and donate £1 each to the charity. In 2016 - 2017, the celebrations were made even more spectacular because of the Roald Dahl Centenary. Partygoers celebrated Roald Dahl with the help of some Dahlicious resources and raised a whopping £105,533.

Premiere In July, Roald Dahl’s Marvellous Children’s Charity was delighted to receive free tickets to The BFG premiere. Several families the charity supports, along with Roald Dahl Nurses attended this spectacular event (via the red carpet!) in London.

Clarence House On 14 December, some of the children and families we support, along with their Roald Dahl Nurses, were invited by Her Royal Highness, The Duchess of Cornwall, to attend Clarence House and decorate the Christmas tree. This festive event included a delicious meal. After, the children put the finishing touches to the marvellous Christmas tree. The day, as well as being a fantastic outing for the families in attendance, provided a wonderful opportunity for HRH The Duchess of Cornwall to learn more about the hard work of Roald Dahl Nurses and the families they care for. Clarence House, along with the following hotels, The Dorchester, The Goring, The Grosvenor House Hotel and The Stafford; went above and beyond the call of duty; showing incredible kindness and generosity towards the families and nurses, making this an extra special event. 16 Fundraising – Our Corporate Partners

Dunelm This year marked the end of our year-long partnership with leading home furnishing retailer Dunelm, whose hard-working staff and customers raised a marvellous £244,698 towards the charity’s work, far surpassing the £120,000 target they had originally set themselves. Marvin the Marvellous Crocodile helped open some new Dunelm stores around the country and supported staff with their varied fundraising activities, which culminated in a magnificent Olympic style relay challenge in the Summer. Teams from each store relayed four batons from all four corners of the UK over a four-week period to Dunelm’s headquarters in Syston, near Leicester, using methods of transport ranging from shopping trollies to a ferry. A huge thank you to all of the staff at Dunelm for your wonderful and enthusiastic support.

David Austin Roses In May, we saw the launch of our very first Cause Related Marketing partnership with renowned rose breeder David Austin Roses at the Chelsea Flower Show. Coinciding with 2016’s Roald Dahl centenary celebrations, the creators of the Roald Dahl Rose pledged to raise £100,000 over the coming years to help seriously ill children in the UK. 10% of each of the peach-coloured shrub rose’s recommended retail price will be donated to Roald Dahl’s Marvellous Children’s Charity.

The Telegraph In November, we were delighted to be chosen as one of the three beneficiary organisations for The Telegraph’s 2016 Christmas Charity Appeal. The annual campaign, featuring inspiring stories about our Roald Dahl Nurses and the families under their care, motivated generous Telegraph readers to donate over £155,000 to our cause during the festive period. Their wonderful support helps us to ensure more seriously ill children have access to essential healthcare in the UK.

Ambassador Theatre Group We were delighted to be chosen by the Ambassador Theatre Group (ATG) as their charity partner for the Christmas pantomine season. Thanks to the efforts of ATG theatre staff armed with charity collection buckets, as well as appearances from our very own Marvin the Marvellous Crocodile at participating theatres, a staggering £81,039 was raised. We are delighted to announce that ATG has generously decided to support our cause for a further two years.

The Roald Dahl Charitable Trust We are immensely grateful to the Roald Dahl Charitable Trust (RDCT) for their continued support. RDCT receives 10% of net author’s royalties from the sale of Roald Dahl’s books, films and merchandise. In 2016 - 2017, the Trustees of RDCT awarded a grant of £371,000 towards the central running costs of the charity. This means that additional donated and fundraised income can go directly towards supporting seriously ill children through our nurses, nurse projects and family grants. 17 Financial summary

Income 2016 - 2017: £1,281,500*

Donations 34% Fundraising 62%

Investments 4%

(Includes money received from all income streams)

Expenditure 2016 - 2017: £1,258,174*

Roald Dahl Nurses Programme 56%

Governance 5%

Marketing 4% Marvellous Family Grants Overheads 8% Programme 9%

Fundraising 18%

*Total income and expenditure as disclosed in the Financial Accounts as filed with Company’s House and the Charity Commission is £1,543,634 and £1,527,321 respectively. The difference relates to a third-party debt that was novated to the charity and was fully provided for. For further financial information, the charity’s full annual report and audited accounts are available from the Charity Commission website. 18 Roald Dahl’s Marvellous Children’s Charity Who’s Who

Trustees and Directors Martin Goodwin – Chair until 1 March 2017 Donald Sturrock – Chair from 1 March 2017 Virginia Myer Graham Faulkner Dr Husain Khaki Michelle Johnson Niels Kirk Georgina Cannon – resigned 15 November 2016 Alex Hyde-Parker – appointed 1 March 2017

Chief Executive Chris Knee - interim until 24 April 2016 Jane Miles - appointed 25 April 2016

“A big thank you to everyone who has helped us provide the best possible healthcare for seriously ill children in the UK” Trustees of RDMCC

19 Roald Dahl Nurses provide the best possible healthcare for seriously ill children in the UK

Children’s Charity Roald Dahl’s Marvellous Children’s Charity, Montague House, 23 Woodside Road, Amersham, , HP6 6AA. Tel: 01494 890465 Email: [email protected]

www.roalddahlcharity.org

Registered Charity No: 1137409. Illustrations © Quentin Blake. Roald Dahl is a registered trademark of Roald Dahl Nominee Ltd. Company Limited by Guarantee in England and Wales No: 7340518