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.

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