Annual Review 2016 - 2017 “We feel that nothing is impossible with our Roald Dahl 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 Great Missenden. 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.