Transition:Marvellous Welcome Note from Our New Chief Executive, Everyone’S Business Louise Griew

Supporter Newsletter Issue 10 - Autumn 2019

News Transition:Marvellous Welcome note from our new Chief Executive, Everyone’s Business Louise Griew

The move from child to adult healthcare services is a significant Hello everyone. It’s a privilege and a joy to have now started leading this change for any young person and can be particularly tough marvellous and innovative organisation. Through the last few months, I have for young people with complex, long-term health conditions. been able to see for myself the wonderful and tireless work of our amazing Throughout their childhood, they may have had intensive nurses with our heroes, the children and young people we support. I am passionate about finding the right interventions to make a difference along support from their family and health services to help with their these young people’s journey and it has been an exciting time of reviewing conditions. When their healthcare is managed by adult services what we do and looking at what more we can do in the future. Our specialist and in the context of NHS funding challenges, the transition nurses and professional healthcare family is fundamental to improving the care our children receive, and we are hoping we will work more closely with process can be extremely daunting. A difficult transition them and our children and their families to understand what we need to can delay treatment, affect their emotional needs, cause achieve so they can live marvellous lives. Without the support of partners disengagement with care and increase hospital admissions. In and supporters, we won’t be able to do this and wouldn’t have achieved what we have to date, so a personal thank you from me and looking forward response to this, we launched our new campaign ‘Everyone’s to getting to know everyone better in the coming weeks and months. I Business’ on Monday 12 August which was also International have a marketing background, so I am always looking for ideas, so if you Youth Day - to raise awareness for quality transition care. or anyone you know have some thoughts that will inform our work, please don’t hesitate to get in touch with myself and the team. I am immensely As part of this campaign, proud of the my new team, our nurses and other professional healthcare specialists, but most importantly the children who overcome the we showcased different challenges they face every day in such a brave way – they are our perspectives on experiences heroes just like the characters in the Roald Dahl’s stories and of transition, including every bit of support will go towards helping them to feel empowered to lead a marvellous life. young people, Roald Dahl Nurses, a parent and charity representatives. Ben is a young Louise.

person with the serious blood “I’ve seen our Roald Dahl condition Sickle Cell Anaemia. Nurses in action and their He says, “The difference between paediatrics and adult services work is truly inspiring” was day and night…if you’re not prepared for it, it can be quite scary. I was very lucky to have the support of a transition nurse celebrated the charity’s continued commitment to improving and they helped not only me, but my Mum as well.” Thankfully, transitional care as we are funding three new Roald Dahl Ben receives quality care from Roald Dahl Nurse Giselle. She Transition Nurse Specialists, thanks to generous donations from works to support young people with serious blood conditions at supporters like you who have helped us raise the £300,000 we King’s College NHS Foundation Trust and she, along with all our needed to do this. The new nursing posts have been awarded Roald Dahl Nurses, uses her expertise to help raise the standard to East London NHS Foundation Trust - for young people living of care provided for children and young people by training other with complex needs, Leeds Teaching Hospitals NHS Trust - for healthcare professionals. young people living with neuromuscular conditions, and Lewisham The short films we created and Greenwich NHS Trust - for young people living with serious highlighted all these blood conditions and neuro-disabilities. experiences of transitional Can you help us make transition of care Everyone’s Business? Vis- care and show our support to it: www.roalddahl.com/charity/transition to watch the films ensure other young people and share your views with us. We would love to hear from you. receive the quality care they Contact us at: [email protected] / 01494 890 465. deserve. The campaign also

www.roalddahlcharity.org A Parent’s Perspective on Transition of care Marvellous Family Families affected by serious illness can be faced with Grants extreme uncertainty and can struggle to deal with Abu is four years old and is affected by the care required to manage children and young challenging medical conditions which people’s complex care needs. As they grow older cause him to have mobility, breathing, and are confronted with moving from child to adult feeding and developmental issues. He services, the challenges are even greater as their has spent much of his life in hospital healthcare provision changes. We spoke to Renata and has struggled with engagement Blower to hear her views on transition care. Renata is and physical tasks. a Co-Director of the Special Needs Jungle – a parent-led information website and Mum to three children When his family learned about the including Dominic, a young boy who has medical Marvellous Family Grants programme, conditions which remain undiagnosed. their nurse applied on their behalf for an iPad and stand to aid Abu’s Q. Why is quality transitional care important? Getting transition right, especially development, encourage independence, medically complex children like my son Dominic, is vital. It is a process that is often spoken education and communication skills. about in the NHS, but sadly, rarely delivered. It will come as little surprise to hear that Having been awarded the grant, he transition to adult services is often referred to as the ‘black hole’ that children fall into. As a can now use apps that allow him to process it is often poorly planned and executed, and consequently delivers poor outcomes paint digitally, learn the alphabet and for the children. listen to nursery rhymes. The iPad Dominic will suddenly be expected to advocate for himself and take responsibility for the also provides a fantastic distraction encyclopaedia’s worth of medical history I have been carrying around in my head for 18 for Abu when attending long hospital years, in order to ensure that he receives appropriate medical treatment. visits. His Mum has seen her son’s confidence grow at nursery and at Q. What is transitional care missing at the moment? Currently, there is no home. She says, specific transition care available for Dominic, despite the fact that he is under multiple “I can’t put into words how teams in both the community and in a specialist children’s hospital. He will be expected to much it has helped him. As a manage his transition on his own, even though he is considered to have complex needs. family, we love seeing him engaged and he is surprising Q. What does Dominic say to you about his experience of transition? us all with his development.” Dominic currently hasn’t experienced any transition planning or preparation, except from myself and his Roald Dahl SWAN Nurse Anna, as we are trying to find ways to help him to Roald Dahl Nurse communicate with his doctors in a meaningful way. Training Grants Q. Why is it important that the charity is funding new Roald Dahl Sasha Peacock is a Transition Specialist Nurses? You need innovators to pave the way, to put in action Roald Dahl Epilepsy the care that these children and families need to show the difference that can be made. Nurse Specialist at NHS Tayside. She The transition nurses’ involvement will enable the young people they are helping to carry recently undertook a Paediatric on with their treatment under adult services and help them to develop skills to self-manage Epilepsy Training (PET) course their condition thus avoiding preventable complications of their health condition. in Nottingham with help from Q. What are your thoughts on the care Roald Dahl Nurses provide to the Roald Dahl Professional families affected by serious illness? It’s ground-breaking. In our case as we have Development Package, where she the world’s first nurse for undiagnosed children looking after Dominic. learned a lot about how to improve epilepsy care provision for families. Q. What would you like to see happen for the future of transitional Sasha identified how to implement care? All children with complex conditions and their families should have the support impactful educational plans, which of a transition nurse, ensuring that they are the norm, not a novelty. ensure individual needs of children and young people with epilepsy are Q. What would you like to say to other parents/carers who have a addressed, helping them achieve child moving from child to adult healthcare services? Your child doesn’t their full potential. The course become an adult the day they blow the candles out on their 18th birthday cake, nor do which was delivered by the British they suddenly acquire the skills they will need to negotiate adult services on their own. Paediatric Neurology Association Begin working with your child from as early as possible to start making them take an (BPNA) was designed to respond to active interest in their care and the discussions that people are having about them. Take issues surrounding standards of care any opportunities to learn about preparing your child for adulthood. and very much aligns with Sasha’s Q. What advice would you give to healthcare professionals about role – to deliver high levels of care providing transitional care? Start asking what transition care is available for your to families on her caseload. patients and keep asking how it could be improved. News from our Marvellous Friends Community News Schools Fundraising The Beacon School have been taking Wimbledon to World Cups part in a variety of fundraising Bedford and County Golf Club chose activities and have raised and us as their charity of the year and incredible £1500.00. Durston School raised £5239.28 through a plethora of have raised £3872.52, choosing us as fundraising events including a World their charity of the year. Both schools were delighted to receive Cup and a Wimbledon themed Golf Day. a special visit from Marvin the Marvellous Crocodile. Top stuff! Wonka World Records Team Taff Raise £10,000 Head of Fundraising and Communications Tom Dixon broke a A few months ago, seventeen friends embarked on a challenge Guinness World Record. He became the fastest person to run a that would see them tackle a near 30 Mile walk of the Taff Trail. Half Marathon dressed as a book character, finishing it in 1 hour They raised a whopping £10,800 and were inspired to fundraise 23 minutes and 4 seconds – Willy Wonka. He took part in the as one of the team members, Dai, receives specialist care from a Milton Keynes Half Marathon and the London Marathon, raising Roald Dahl Epilepsy Nurse for his three-year-old son Elliot. over £1600 for our charity. Corporate Partners

Welcome to Sphere Digital Recruitment We are delighted to announce our new partnership with Sphere Digital Recruitment who are supporting us as their charity of the year. They are aiming to raise £10,000 and will be taking part in the Three Peaks Challenge and are taking their fundraising to new A Tour with a Difference heights with a skydive. Watch this space! Top stuff! Independent travel agents Auntie Anne’s Traveltime recently raised £2,250 World-famous pretzel company Auntie through a car rally across Europe, Anne’s have continued their fundraising with our charity mascot Marvin efforts by holding a raffle that raised over the Marvellous Crocodile in tow! £200 and a special lemonade promotion This fantastic fundraiser, which will see 10p from every sale donated to saw Marvin adventure on his first us. Staff are also taking part in the Royal Parks Half Marathon to international holiday, along with raise even more funds. the team and a little help from Rotary Club of Beaconsfield member Barry who supported the Explore Learning event. Happy holidays! Explore Learning continue to show their Roald Dahl Nurse Leads the Way with support, participating in the Yorkshire Three Peaks challenge, hosting numerous Follow Florence Tour bake sales and parties, raising plenty Lesley McCarthy is a Roald Dahl of pounds for our charity. Many centres Nurse who provides expert support across the UK are taking part in Roald Dahl Day celebrations. to families affected by serious blood conditions in the Oxford area. Earlier David Austin Roses this year, Lesley and her husband David Austin Roses has been supporting Tony took on a terrific tour of the UK us since 2016, with proceeds from in their ‘Marvinised’ 2CV, visiting other Roald Dahl Nurses and the sale of the Roald Dahl Shrub Rose, community groups. They raised a fantastic £1,536 – Well done! generating over £84,000 to date – enough to fund a Roald Dahl Nurse Family Fundraising for over a year. To celebrate the partnership so far, several Roald Roald Dahl Nurse Jennie provides expert Dahl Nurses, along with charity staff were invited to David Austin’s care for children and young people affected gardens in Shropshire for a marvellous day out. With an exclusive by epilepsy at Lancashire Teaching Hospitals tour of the rose gardens, it was a special day out for our nurses NHS Trust. Jennie has supported the charity and the company is continuing its support for our charity by with fantastic fundraising and her Mum Janet donating £5.50 from the sale of every Roald Dahl Standard has completed a cycling challenge from Tree Rose – to help reach the £100,000 fundraising target it has Manchester to Blackpool, raising over £400 pledged. Visit: www.davidaustinroses.co.uk/roald-dahl to for our charity – Well done! order your Roald Dahl rose. Diary Dates Be Brave for Roald Join Team Marvellous and become a fantastic fundraiser by taking part Dahl Day in a challenge event. Help families facing serious illness overcome Roald Dahl Day life’s toughest challenges by celebrating the Celebrations world’s number one storyteller with a Roald Dahl Any day you like! Day party. Everyone’s invited, so find out how you can join in the fun in aid of our charity. Join us for the party of the year – Roald Dahl Day! This annual celebration of the world’s number one storyteller Children can dress up as their favourite Roald sees people young and old taking Dahl character and donate £1 or more to our part in the most Dahlicious of days, cause. Schools, libraries, bookshops and any day you like. Get FREE resources community groups will be hosting events to and inspiration from us or be brave like Matilda and hold a Roald Dahl mark Roald Dahl Day throughout the year. If themed party using your imagination you’re a business or community group, you could to fundraise for our charity. hold a revolting recipe bake sale, a lucky golden ticket raffle or a Roald Dahl themed quiz. ‘Ay Yup’ Yorkshire This year, we’re celebrating one of Roald Dahl’s most popular stories and characters, Matilda, inspired by her strength, rebelliousness and of course bravery and we want Sportive Cycle YOU to get involved and join us for the best party of the year! Children like Zaris who 12 October demonstrates such bravery. Zaris who has Sickle Cell Anaemia and is cared for by Distance: Various Location: North Yorkshire Roald Dahl Nurse Edith doesn’t let her condition stop her from leading a marvellous Fundraising Target: £100 life and is a real-life Matilda, having performed in the West End musical version of Registration Fee: £40 Roald Dahl’s marvellous story. Visit our website to watch the film and learn more What: Starting at the iconic Ripon about what inspired her to follow her dreams and perform on stage and how her race course this three-distance ride is Roald Dahl Nurse supports her. Why not show the film to your fellow fundraisers to a great challenge for all participants. There are food stops and mechanical show that nothing is impossible when you champion bravery? support throughout the race.

Spartan Sprint 23 November Distance: 5 KM Location: Twickenham Stadium Fundraising Target: £150 Registration Fee: £20 What: This 20-obstacle race offers a fresh challenge for new and seasoned racers alike. With a whole raft of exciting obstacles, fundraisers will get the opportunity to experience a Spartan race on the same grounds that legends have tread. New for Roald Dahl Day in 2019 is Roald Dahl’s How to be Brave book. This brand-new publication costs just £1 and celebrates diverse forms of bravery – inspired by the characters of Roald Dahl. It’s packed with quotes, activities and advice from famous Paris Marathon fans and includes character illustrations by our Charity President, Sir Quentin Blake. 10 March Find out more by visiting www.roalddahl.com and see what other ways you can Distance: 26.2 Miles celebrate Roald Dahl and bravery for seriously ill children. Location: Paris Fundraising Target: £1000 We’re here to help you have the most Registration Fee: £50 splendiferous party, get in touch to get What: Join 40,000 others as you take on the challenge of a lifetime by your hands on some FREE resources. running through the streets of Paris Contact us via email at: next Spring. This unmissable race is [email protected] or your chance to make a difference to call: 01494 890 485. Don’t forget to your personal best as well as our charity. share pictures of your Roald Dahl Day party with us on social media and use To find out more about any of the the hashtag #RoaldDahlDay, we’re on events listed above, or any other event, contact the fundraising team. Facebook, Instagram, LinkedIn, Twitter Email: fundraising@roalddahlcharity. and YouTube – we can’t wait to see org or call 01494 890 465. your celebrations in action. Roald Dahl Transition of Care Marvellous Privacy Policy Nursing Conference

On Friday 17 May, Roald Dahl Nurses and healthcare professionals, Young people and parents who are supported by Roald Dahl along with other marvellous delegates, charity staff and trustees Nurses also spoke as part of a Question and Answer session aimed attended a special event: The Roald Dahl ‘Transition of Care’ Nurs- to empower patients and improve services. David is 19 years old ing Conference - to celebrate the work of its Roald Dahl Nurses and and was born with Sickle Cell Anaemia. He and his mum, Dorothy, raise awareness for transition services. The conference was held at shared their experiences of transitional care and why quality care the Royal College of Nursing in London and brought together over matters – they also talked about how their Roald Dahl Nurse has 50 of the 75 Roald Dahl Nurses who we have funded. played a vital role in supporting them throughout the transition pathway. The delegates were joined by many other speakers, as The theme of the conference was on transition from child to adult well as charity founder and President Felicity Dahl, who set up the healthcare services and the day was hosted by Roald Dahl Transition charity over 25 years ago. Nurses Giselle Padmore-Payne who works at King’s College Hospital NHS Foundation Trust and Neil Fletcher, Roald Dahl Clinical Nurse The conference was a wonderful way for Roald Dahl’s Marvellous Specialist for Teenagers and Young Adults at Barts Health NHS Trust. Children’s Charity’s network of specialist nurses to come together. The day forms part of the Roald Dahl Professional Development Speakers for the day included healthcare professionals from NHS Package - enabling this established community of Roald Dahl Trusts from across the UK, including Dr Arvind Nagra, a children’s Nurses to develop their services areas and their careers. consultant who has helped to develop a transition programme called ‘Ready Steady Go’ which demonstrates best practice for Conference delegates thoroughly enjoyed the day. One Roald Dahl healthcare professionals and has been adopted by many NHS Nurse said, “There were very powerful discussions Trusts across the UK. Other speakers included Louise Porter – a around transition which highlights the need for a National Lead Nurse who delivered a talk on ‘The Experience of a transition nurse across all areas of practice.” Transition Quality Improvement Project’ in Leeds. Talks were also Another said the conference “has empowered held by Angela Horsley, Head of Children, Young People and Tran- me to look at transition from many angles”. sition at NHS England and NHS Improvement, representatives from Sheffield Hallam University who are undertaking work on how the We would like to thank our valued supporters for helping to make charity is demonstrating the value of its specialist children’s nurses. this a truly marvellous occasion. If you would like to find out how Representatives from Abertawe Bro Morgannwg University Health you can support our next Roald Dahl Nursing Conference, contact Board, including Eirlys Thomas – Head of Nursing and young a member of the fundraising team today at: people Sophie and Caitlyn who have been part of ‘ABM Youth’ – [email protected] / 01494 890 465. the first youth advisory panel to work with a health board within the Welsh NHS also shared their views. Marvellous Meet the Team Privacy Policy Karen O’Neill and Jennie Read – Roald Dahl Paediatric We will never sell your details to Epilepsy Specialist Nurses at Lancashire Teaching other organisations, or share Hospitals NHS Foundation Trust them with other charities for marketing purposes. We will Karen and Jennie have been in post as Roald Dahl Paediatric always communicate with you Epilepsy Nurses at Lancashire Teaching Hospitals NHS according to the preferences you Foundation Trust as part of a post held jointly by them for have expressed. We are committed the last five years. to ensuring our fundraising is They are passionate to support children, young people legal, open, honest and respectful. and their families affected by epilepsy. A diagnosis of and As a member of the Fundraising living with epilepsy can have massive implications to the Regulator we adhere to the quality of life of a child, young person and their family. Fundraising Code of Conduct They work together to help children and young people reassuring you that you can give reach their potential despite their diagnosis, and educate with confidence, knowing that we and empower their patients, encouraging them to comply with their principles. become independent and manage their own health. They strive to provide high quality care and support the children and young people at home and hospital settings as part of their role and work with other departments to ensure care is coordinated effectively. Karen and Jennie undertake regular outreach work in the community to inform others about epilepsy and the impact it can have. They have trained 200+ schools, including teachers and school nurses on epilepsy and they also provide training to other Get in touch healthcare professionals, including those in adult services. They play a key role for families at the point of diagnosis, offering home-visits or appointments in nurse-led clinics and from then, they begin with education which can include first aid, signposting to other epilepsy support networks and how to contact them. They discuss how the condition can impact the child or young person and what possible side effects they may experience as a result of their medication. Treatment plans are discussed and families are given useful tools to help manage their care – reinforcing their confidence to do this, all while knowing Jennie and Karen are at the end of the phone.

Karen and Jennie advocate on behalf of the families in their care, whether it’s in their own department at team meetings or in a school setting. They feel they can represent and Don’t forget to follow us on understand families as a whole unit to help others understanding the devastating Instagram and Twitter, like our consequences a diagnosis of epilepsy can have on the entire family. Facebook page and find us on YouTube and LinkedIn. They are constantly reviewing the level of care they provide, to ensure they continue to deliver high-quality, cost-effective care. They do this by obtaining feedback via evaluation forms to ensure they are meeting the needs of their patients and can make changes Roald Dahl’s where needed. Children’s CharityMarvellous Montague House As well as their day job – providing expert care to help those in their care lead a marvellous 23 Woodside Road life, they have been taking part in incredible fundraising activities to help raise further Amersham awareness for families affected by serious illness. In 2018, they participated in Blackpool’s Buckinghamshire ‘Ride the Lights’ cycling challenge along with some of the families they support and raised HP6 6AA a phenomenal £1,660. As well as this, they both recently joined the charity to share their Tel: 01494 890 465 views on transitional care as part of our ‘Everyone’s Business’ campaign and talked about [email protected] how they have integrated simple but effective changes such as addressing patient letters www.roalddahlcharity.org to young people – something they have incorporated since attending the Roald Dahl Nursing Registered Charity No: 1137409 Conference a few months ago. Company Limited by Guarantee in England & Wales No: 7340518 Karen and Jennie said, “We are privileged to be associated with Roald Illustrations © Quentin Blake Dahl’s Marvellous Children’s Charity. We love their vision, values and Roald Dahl is a registered trademark of commitment to improving the life of seriously ill children and enjoy Roald Dahl Nominee Ltd continued support from them.”