reassurance and helping him to access the treatment he needs so he doesn’t get lost in the transition process. The film also showed the story of Cameron who is supported by Roald Dahl Nurse Louise. You can find out more about Cameron and the impact his Roald Dahl Nurse has had on his family by turning overleaf and reading the next page.

Viewers were able to donate to our charity and a whopping £20,000 was raised thanks to their generous support. With these fantastic funds, we plan to help more children than ever this year, appointing more specialist nurses to work in underfunded areas and delivering our marvellous family grants programme to those in hardship. We are immensely grateful to all those who donated and everyone who showed their support for this campaign by spreading the word. You can find out more about the BBC Lifeline Appeal by watching the film. Visit the Roald Dahl YouTube channel and select ‘Roald Dahl’s Marvellous Children’s Charity’ from the playlist.

We were delighted to be the chosen charity for the BBC’s festive Lifeline Appeal back in December. The appeal, which has been running for over 25 years, has supported over 300 charities and aims to highlight their work. A short film was created to shine a light on how Roald Dahl Nurses support seriously ill children and their families and was presented by Penelope Wilton. The film was aired on BBC1 and BBC2, sharing the incredible work of our nursing community with the nation.

Three Roald Dahl Nurses and the families they support were featured in the film, including Maddison, aged 4 and her Mum, Kerry. Maddison has chronic epilepsy and partial sight loss. Maddison’s illness has a major impact on the entire family, including her sister Amelia who doesn’t understand her condition. Roald Dahl Epilepsy Nurse Specialist Emily works to support the family by liaising with consultants, providing therapy and support groups and educating other children by delivering training sessions to schools.

David, also featured, is the oldest of three children at18 years-old and is studying for his degree in computer technology. Both he and his younger sister have Sickle Cell Anaemia, a serious blood condition, which can result in frequent trips to hospital to manage painful crises. Their Mum Deborah, a recently widowed

nurse is constantly worried about her children. David has recently made the transition from child to adult healthcare services, which can be a very daunting time for any young person. Roald Dahl Nurse Giselle helps David to navigate his healthcare, providing him with

MarvellousSupporter Newsletter

NewsRoald Dahl Sapphire Epilepsy Nurse Specialist Kirsten Johnson works to support families at Sherwood Forest Hospitals NHS Trust. She took part in the Royal College of Nursing’s Demonstrating the Value of Specialist Nursing course in 2017 and now a special video has been created to highlight her role and the findings.

The course helps nurses like Kirsten to recognise the benefits of the service she provides to the families in her care. It also helped to identify how to improve health outcomes for families. A big part of Kirsten’s role is running a telephone hotline service so parents and carers can talk through any concerns with her and she can provide advice and support, with the aim of keeping children in school, at home and out of hospital.

The telephone hotline, although invaluable to families and an important part of Kirsten’s role, it wasn’t recognised as part of the service she provides as it isn’t charged in an independent way. When Kirsten applied for a new phone and it was deemed as too expensive, she had to prove that the hotline was not only working, but could reduce future costs by keeping children out of hospital.

Kirsten’s involvement in the economic evaluation of her role has reinforced the value of her role to families, but also within her NHS Trust. She has worked with staff from multiple departments, expanding her colleagues’ understanding of the importance of her post and what support she provides. It has also developed her confidence and now she feels more empowered to talk about the ‘Specialist’ element of her role. A film of Kirsten’s evaluation work is now available to view. Watch now, visit the Royal College of Nursing’s YouTube Channel.

Nikki Tuffin has been in post as a Roald Dahl Children’s Non-Malignant Haematology Nurse Specialist at Basildon and Thurrock University Hospitals NHS Foundation Trust since August 2018. Ever since she started in her role, she has been working hard to establish a new nurse-led service to bring care closer to home for children and young people affected by serious blood conditions like Sickle Cell Anaemia.

As Nikki’s role is relatively new, she has wanted to listen to the families in her care, to identify what their specific needs are and improve the level of care they receive. Nikki decided that holding a special Christmas party, was a great way to bring families together in an informal, non-clinical setting. After successfully applying for a Roald Dahl Nurse Training Grant to help fund the event, Nikki hosted the party which was a great success. Not only did it make a huge difference to the communication she has with parents, but it also helped to reduce isolation, by bringing families together.

Nikki said, “It helped me to hear families’ stories first hand and see where I can help improve their lives and their journeys through the service. I am extremely excited for the year ahead and I am so pleased the charity can support more events for young people affected by Sickle Cell Anaemia.”

Don’t forget to follow us on Twitter @RoaldDahlFund and like our Facebook page facebook.com/roalddahlcharity You can also find us on YouTube and LinkedIn.

We will never sell your details to other organisations, or share them with other charities for marketing purposes. We will always communicate with you according to the preferences you have expressed. We are committed to ensuring our fundraising is legal, open, honest and respectful. As a member of the Fundraising Regulator we adhere to the Fundraising Code of Conduct reassuring you that you can give with confidence, knowing that we comply with their principles.

Issue 9 - Spring 2019

www.roalddahlcharity.orgwww.roalddahlcharity.orgwww.roalddahlcharity.org

Roald Dahl’s Marvellous Children’s CharityMontague House 23 Woodside Road Amersham Buckinghamshire HP6 6AA Tel: 01494 890 465 enquiries@roalddahlcharity.org www.roalddahlcharity.orgRegistered Charity No: 1137409 Company Limited by Guarantee in England & Wales No: 7340518Illustrations © Quentin Blake

Roald Dahl is a registered trademark of Roald Dahl Nominee Ltd

HR and Administration Officer Karen WinnKaren joined the charity in December 2018. She ensures the smooth running of the office on a day-to-day basis, Karen has been described by a colleague as the office Fairy Godmother. No day is the same for Karen, she could be answering enquiries from the general public or taking minutes at Trustee Board Meetings.

She is very excited to learn that the charity is launching a new Roald Dahl Nurse post programme to support young people moving from child to adult healthcare services. As a

Mum with a child who has a rare syndrome, Karen knows how valuable these new roles will be to the families who need that support.

Karen is also incredibly honoured to be the Parent Representative at the charity’s annual nursing conference later this year. She’s excited to contribute more to the team using her professional and personal experience.

Karen says, “Although I have only been here a short while, all the staff have made me very welcome and I feel like part of the team already.” Welcome to Team Marvellous Karen!

Demonstrating the Value of Specialist Children’s Nursing

Charity Funding Helps Reduce Isolation at Christmas

BBC Lifeline Appeal Raises £20,000

Get in touch

Meet the TeamRoald Dahl Paediatric Gastroenterology Nurse Specialist Fran SchiavoneFran is the first-ever Roald Dahl Paediatric Gastroenterology Nurse Specialist. She is based at Morriston Hospital near Swansea - part of Abertawe Bro Morgannwg University (ABMU) Health Board and works in the community, supporting children and young people affected by gastro-intestinal conditions, including complex Inflammatory Bowel Disease and intestinal failure which requires Home Parenteral Nutrition (feeding directly into the blood stream at home).

Fran’s position was funded thanks to the Roald Dahl Charitable Trust, which provides grants in line with its charitable objectives and has historically, provided support to our charity. Fran’s role, the first of its kind has been developed where there is no provision of support for families facing gastro-intestinal illnesses, often resulting in unnecessary hospital admissions and reduced quality of life.

Fran says, “I’m so honoured to be in this role and bring my passsion, knowledge and skills to give children, young people and families the best care possible.” Welcome Fran!

Marvellous Privacy Policy

Head of Fundraising

and Communications

Hello and welcome to our Spring newsletter!

All too often, seriously ill children and their families cannot get

the support they need. I’m amazed by how much you are

helping to change this. With your generosity, we can work with

the NHS to help seriously ill children with under-funded and

under-resourced conditions.

In this newsletter, you will read how children like Maddison

have really benefitted from a Roald Dahl Nurse supporting

them, and how crucial David’s Roald Dahl Nurse was in his

journey into becoming an adult. It is down to your kindness that

Roald Dahl Nurses like Louise make a life changing difference

to seriously ill children and their whole family.

You have helped make all of this possible, and we

really are grateful to you. Thank you so much.

Welcome From

Tom Dixon

Roald Dahl Nurse Kirsten talks about the benefit of a telephone hotline with colleagues

Vivian, Mum to a child with Sickle Cell and Roald Dahl Nurse Nikki get ready for the party.

“You can clearly see the wonderful

impact you’re having..”

A Marvellous Golf DayJoin us on Thursday 10 October at Harewood Downs Golf Club for a charity golf day. Perfect your golf swing and be in with a chance of winning prizes for your golfing prowess and from our marvellous raffle. Entry is £400 per team. Donations raised from the day can help us continue to provide support for thousands of seriously ill children, young people and their families. Reserve your team’s place: Email: fundraising@roalddahlcharity.org or call 01494 890 465.

Thomas, a Roald Dahl Epilepsy Nurse Specialist in Newport held a family celebration fundraiser and had plenty of fun in the process – well done to our marvellous nurses.

Corporate PartnersMarvin the Marvellous Crocodile Takes to the StageFor the third year running, our charity has been supported by the Ambassador’s Theatre Group which has venues across the country. Throughout the recent Panto season, bucket collections and generous donations helped to raise lots of marvellous funds. Oh yes they did!

Charlie’s Chocolate TriumphOur friends at Alton Towers Theme Park and Resort held an auction, for Charlie and the Chocolate Factory ride memorabilia, in aid of two charities including us. All the wonderful bidders have helped to raise over £5,000 for our charity. A Splendiferous thanks to all involved.

Fearless Learners – Brilliant FundraisersExplore Learning, Maths and English tuition providers and long-standing supporters, have continued their fearless learning ethos while demonstrating their brilliant fundraising efforts. From

cake sales to World Book Day parties and a double skydive in the pipeline, Explore Learning have shown true dedication to supporting our cause. Keep up the marvellous work!

We met Ricky and Guy who are taking to the sky later in the year.

Fisher German: Celebrating the end of our Charity PartnershipOur nationally renowned property expert friends Fisher German have celebrated the end of a year-long partnership, raising £7,317 in total. They’ve trekked, bungee jumped, baked and held some fantastically festive events at their offices and we’re so very grateful for all their support – you’ve been terrific!

Leeds Half Marathon 12 May Distance: 13.1 Miles Location: Leeds Fundraising Target: £150.00 Registration Fee: £32.00

In December, Her Royal Highness The Duchess of Cornwall, Roald Dahl’s Marvellous Children’s Charity’s Royal Patron invited five seriously ill children, family members and the Roald Dahl Nurses who care for them to Clarence House to decorate the Christmas tree and enjoy a special lunch. The children, along with their Roald Dahl Nurses, helped to decorate the Royal Christmas tree. Her Royal Highness served up a delicious lunch for her guests to enjoy and the children were treated to a surprise visit by some of Santa’s reindeers.

Among the guests were Aidan, aged 9. He was diagnosed with epilepsy when he was just 2 years-old. He is supported by Roald Dahl Nurse Karen who was in post for 20 years and has just retired. Roald Dahl Nurse Katie Spender-Thomas, Jennifer Anderson, our first Roald Dahl Nurse in Northern Ireland who cares for children with neurodisability, and Roald Dahl Nurse Elizabeth who helps families living with serious blood conditions were also in attendance with some of the families they support.

This joyous event was enjoyed by all who attended, and Roald Dahl’s Marvellous Children’s Charity is delighted to have attended for the third-year running. We are thrilled to have the continued support of our Royal Patron. It was a wonderful way for some of our Roald Dahl Nurses to celebrate their work and the contribution they make to the lives of seriously ill children all year round.

Roald Dahl Nurses enjoy the festive event

Roald Dahl Nurse Louise Provides Invaluable Support for Cameron and his FamilyCameron, aged 13 from Wales, has a complex form of benign Rolandic epilepsy, (where seizures begin in the part of the brain called the ‘rolandic’ area), leaving him with a lifelong disability. Educationally, socially and emotionally, Cameron is behind in his development. Frequent seizures have resulted in a permanent weakness on the right side of his body, meaning that his coordination is challenged, and he is prone to falling over easily.

Despite his health issues, Cameron is determined to be just like other children, reaching milestones such as learning how to ride a trike when he was younger and now in his teens, he is determined to play with other children in his neighbourhood. Cameron’s Mum and Dad thought about getting him a large trike – before discovering the cost was beyond their means, especially as Mum had recently been made redundant. That’s when their Roald Dahl Children’s Epilepsy Nurse Specialist, Louise Capeling, who works at the Royal Gwent Hospital, (part of Aneurin Bevan Health Board) stepped in and suggested she could apply for a Marvellous Family Grant on the family’s behalf.

Louise has been a Roald Dahl Nurse for 11 years and works in the heart of the community to deliver specialist support to the families in her care. Louise provides both medical and emotional support and can be seen attending home visits, answering calls from worried parents and carers, educating other healthcare professionals and the wider community, such as schools. Louise also ensures that the children and young people in her care can easily access treatment to help manage their condition more effectively.

After successfully applying for a grant to help fund a suitable trike for Cameron, the social and physical benefits were instantly recognisable. Cameron’s Mum says, “The day it arrived, it was amazing. He was so happy. I was crying. He kept saying “I can ride a bike” It has made a huge different to him – being able to play with other children. It has also made a big difference to our family – if we want to walk the dog, we can just pop the trike in the car and we’re off. Normal family life.”

News from our Marvellous Friends Seriously ill children and families attend Clarence House

Join Team Marvellous and become a fantastic fundraiser by taking part in a challenge event.

Diary DatesMarvellous

Family GrantsStanley is 2 and a half and has an extremely rare genetic syndrome, resulting in numerous medical conditions including epilepsy, developmental delay, visual impairment, hearing loss and feeding difficulties. He also requires regular oxygen as he suffers from frequent chest infections.

He needs essential medical equipment at a moment’s notice, making family outings in their rural surroundings difficult. Stanley’s Occupational Therapist applied for a Marvellous Family Grant on behalf of the family to help them get a specialist buggy that can hold his equipment, while providing support and comfort for him, due to the buggy’s ergonomic design. The family can now enjoy their cherished woodland walks once again with peace of mind. Mum Stef says, “The buggy has made an instant difference. Stan really enjoys his walks which have enhanced his sensory experiences.”

Roald Dahl Nurse Training Grants

Roald Dahl Nurse Anna Jewitt supports children affected by Syndromes Without A Name at Great Ormond Street Hospital for Children. Anna was awarded a training grant to undertake a course that enabled her to expand her knowledge and experience of applying a systemic framework when providing emotional and practical support for the families in her care. Anna undertook this 5-week course at The Tavistock Centre which gave her the tools to apply different approaches to caregiving in her role. Anna says, “The training has helped me to gain a better understanding of a child and family’s worries, fears and hopes around illness.”

Community NewsA Marvellous MarathonEmily and her colleague Mark have raised a terrific total of £3,056 after taking part in the Venice Marathon, running over 26 miles for our charity – how inspiring!

Conquering Mount KilimanjaroLynnsey Fitzgerald, a Nursery Manager was inspired by the work

Roald Dahl Nurses do to help seriously ill children and decided to tackle not one but seven fundraising events, including Kilimanjaro. Her dedication has raised over £4,500, that’s over 180 hours of specialist nursing care. Well done Lynnsey!

Locals DelightLocal Bucks-based eatery, the Metro Lounge held a Quiz Night in aid of us, resulting in a generous £500 donation. Chiltern Fundraisers, a small local group with a BIG heart held a festive carol concert raising £2,377 for our charity. Great Missenden 41 Club have raised £1,050 through a charity quiz and golf day. Big thanks also go to Rochester and Cobham Park Golf Club for holding a fundraiser as part of their charity of the year partnership – watch this space for more news on what they’re up to.

Innovative Fundraising Stories – A Must ReadRoald Dahl was known for his inventions and these fundraisers have raised invaluable funds for the charity using a dab of imagination and a dollop of inspiration. The Rebel Yarnstormers raised over £470 for us by selling their fabulous knitted goods at Victorious Festival. They made their stand even more marvellous by adding some brilliant bunting. Schools have been getting creative with their fundraising and Ark Priory School was no

exception. Not only have they held a Dahlicious Dress Up Day, they invited our charity mascot Marvin the Marvellous Crocodile to their new building launch to raise further awareness and funds.

Roald Dahl Nurses Inspire as FundraisersOur Roald Dahl Nurses have been going above and beyond the call of duty, fundraising for our charity and having lots of fun along the way. Trish Bell is a Roald Dahl Paediatric Haemophilia Nurse Specialist who works in Southampton, made a splash with the Serpentine Swim. Clare Clark, a Roald Dahl Non-Malignant Haematology Nurse Specialist took on a different role - as Santa, participating in a festive run at the end of last year. Katie Spender-

The Little Welly Obstacle Course and Festival 11/12 May – Kent 8/9 June – Henley-on-Thames 29/30 June – Cheshire

What: Helping children to get active, enjoy the great outdoors and have lots of fun. Team Marvellous will be joining in with the family-fun at the Henley-on -Thames event in June. There will be awesome activities at all three festivals that will help to raise funds for our charity.

Visit: www.littlewelly.co.uk

Dahlicious Dress Up Day 13 September or any day you like!

Suggested donation: £2 per person

Where: At home, school or in the local community

What: Dress up as your favourite Roald Dahl character and celebrate the World’s Number One storyteller. Visit www.roalddahl.com for inspirational ideas or why not take a trip to the Roald Dahl Museum and Story Centre to celebrate?

To find out more about any of the events listed above, or any other event, contact the fundraising team. Email: fundraising@roalddahlcharity.org or call 01494 890 465.

London to Brighton Bike Ride 15 September Distance: 54 Miles Location: London and Brighton Fundraising Target: £150.00 Registration Fee: £55.00 until June 30, £60 thereafter

Cameron’s Mum and Roald Dahl Nurse Louise help him get ready to ride his new trike.

Roald Dahl Nurse Trish celebrates finishing her fundraising swim

Staff at Fisher German celebrate their fundraising success!

Interested in fundraising for us? Don’t know where to begin? Our friendly fundraising team are here to help. Get in touch and start your marvellous fundraising journey. Email: fundraising@roalddahlcharity.org or call 01494 890 465.

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