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MarvellousIssue 2 - September 2014

Caroline’s-Story Supporter Newsletter

News

Providing specialist nursing care to children like Kyra

Caroline with her Roald Dahl Nurse Edith

Caroline and her family embrace the support of their Roald Dahl nurse, Edith.

www.roalddahlcharity.orgwww.roalddahlcharity.org

Roald Dahl’s Marvellous Children’s Charity

81a High Street, Great Missenden, Buckinghamshire, HP16 0AL. Tel: 01494 890465 Fax: 01494 890459 enquiries@roalddahlcharity.org www.roalddahlcharity.org

Registered Charity No: 1137409Company Limited by Guarantee No: 7340518Illustrations © Quentin BlakeRoald Dahl is a registered trademark of Roald Dahl Nominee Ltd

Caroline is 13 years old and has sickle cell disease. She is in constant fear of having a stroke and has to have monthly blood transfusions and take medication daily to keep them at bay.

Caroline needed someone to create a care plan for her, inform her school, and ensure she took her medication and wore warm clothes in the winter. She needed someone who was on the end of the phone when she needed advice. That person turned out to be Edith, a Roald Dahl nurse specialist. Now Caroline has a care plan and has regular contact with Edith.

It wasn’t always plain sailing and it took a while for Caroline and Felicity, Caroline’s mum, to accept Edith’s help.

from using traditional communications, i.e. being face to face with a nurse, to using an online communication tool and therefore being one step removed, the teenager would gain confidence during the consultation. This would then have positive effects on the teenagers’ independence by giving them the ability to communicate with health professionals rather than relying on their parents.

We are thrilled to announce that Caroline’s project has been celebrated in her field and she has been shortlisted for a Nursing Times Award.

but great fun and we've loved every step of the way. I am truly grateful for my body and mind allowing me to take on this challenge with confidence. Above all, it’s been a huge satisfaction raising funds for the wonderful Roald Dahl's Marvellous Children's Charity. My boys (aged three and six) love Roald Dahl's magical stories and Roald Dahl's

Marvellous Children's Charity seemed the perfect fit!”

We are thrilled that Sarita has safely completed her extraordinary challenge and we would like to say a huge thank you on behalf of all of the children that her fundraising efforts will help. Well done Sarita!

It was a very stressful time for the family and they didn’t want to engage with Edith. But Edith wasn’t put off and she persevered until the family was able to embrace her support. Now Caroline and Felicity feel lucky to have her help.

“Edith is fantastic. She is very supportive of our family as well as Caroline. She makes things happen and she always goes the extra mile. Caroline loves her Roald Dahl Nurse, and calls her Auntie Edith.” Caroline’s mum, Felicity

Edith is one of the 50 Roald Dahl nurses in the UK caring for children with serious long-term conditions. Roald Dahl’s Marvellous Children’s Charity is working hard to ensure that in the future there are more nurses available to help children like Caroline.

Nursing-Times-Shortlist

Superstar-Sarita-Swims-the-Channel

Back in 2012 Roald Dahl’s Marvellous Children’s Charity enabled Caroline, a continence nurse specialist, to embark on a project to see if she could help teenagers to overcome some of the barriers faced with having continence care needs.

The teenagers involved in this study were all living with Spina Bifida, a neurological condition. One of the most distressing aspects of the condition is incontinence, which can be detrimental to their confidence.

Caroline found that by moving away

From bake sales to marathons, there is no end to what people will generously do to raise money for a good cause. One of our newest fundraisers, Sarita is an amazing example of this, as she recently undertook an enormous challenge to swim the English Channel.

Sarita told us, “It's been such an incredible journey… it's been tough

“It-is-fantastic-that-the-number�of-Roald-Dahl--Nurses-is-growing.-Specialist-children’s-nurses-have-vital-roles-to-play-in-supporting-children-and-their-families.-With-�their-specialist-skills-and-expertise,-�they-can-have-a-significant-impact-�on-the-care-received-by-children-with-very-serious-health-conditions.”

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Roald Dahl nurses play a vital and holistic role in making life better for seriously ill children, and during the past year we have created two new nursing posts.

Our first Neuromuscular Nurse Specialist, Joanna, has recently taken up the position at Addenbrooke’s Hospital and will serve the entire Eastern England region. Joanna will be an essential link between families and the hospital; train other nurses and therapists; and co-ordinate research.

We have also for the first time created a Transition Haematology Nurse Specialist at King’s College Hospital in London. Nurse Liz will work with young people aged between 13 and 24 years with blood disorders, such as bone marrow failure. Transition care during the vulnerable teenage years is vital in order to teach young people how to self-manage their condition and to navigate the often difficult transfer to adult services.

Mark Whiting, Nurse Consultant for Children with Complex Health Needs and WellChild Professor of Community Children’s Nursing commented: “The work of the Roald Dahl nurses has undoubtedly transformed the lives of many, many children and their families. The expertise and commitment provided by this small group of nurses continues to set the very highest of standards in specialist nursing care and support for children.”

We are delighted to welcome Joanna and Liz to the Roald Dahl nurse family, whilst continuing to provide training grants for the ongoing professional development of all 50 Roald Dahl nurses.

Championing-Specialist-NursingAs the 50th Roald Dahl nurse gets ready to take up her post at King's College Hospital in London we look at some of our achievements in nursing and our future plans.

The Royal College of Nursing (RCN) emphasises the importance of specialist children’s nurses for improving health outcomes. Steve Jamieson, Head of Nursing at the RCN, said:

Sarita (left) with fellow swimmers Guy and Troy

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Nurse-projects-show-�impressive-results

Stobart-partnership-drives-forward

Regalead’s-mega-fundraising

Honeymoon-with-a-difference

Climbing-Kilimanjaro

Remember-a-Charity-in-�your-Will

Marvellous Marvin visits Truckfest

Lancashire along the way!) marvellous fundraising has been taking place with drivers, employees and fans.

Members of the company’s “Steady Eddie Kids Club” will know already that a special Stobart lorry named Matilda also hit the road for families to spot this year.

Laura Tinkler, Eddie Stobart retail manager, said: “Spotting Eddie Stobart lorries has brightened up many long car journeys and Steady Eddie Kids Club was created to inspire children and make travelling much more fun. We’re delighted to partner with Roald Dahl’s Marvellous Children’s Charity and support its amazing work.”

We are pleased to report on the results of our four year ‘Different Disciplines, Common Experience’ programme, in partnership with the Burdett Trust for Nursing, which gave 22 specialist children’s nurses the opportunity to create innovative ways to improve care for seriously ill children.

Ranging from training to improve treatment for children with neurological disability to developing an app for children with sickle cell, the projects have attracted national interest. A new online “safe-space” for teenagers with haemophilia to talk about their condition and support each other has also attracted international attention including Australia and Bangladesh.

The programme has been a great success in improving care and increasing the profile of specialist children’s nurses. You can find out more

Calling all crafty parents – here’s your chance to show off your splendiferous costume making skills

We have teamed up with the marvellous Claudia Winkleman to launch our competition which invites parents to submit a short video showing how to make a Roald Dahl costume. It’s all to help families get ready for the Dahlicious Dress Up Day fundraising event taking place in primary schools across the country on 26th September.

Entries can be submitted via our Facebook page – www.facebook.com/roalddahlcharity. Winning videos in the categories ‘Best Costume’, ‘Most Creative Video’ and, in celebration of 50 years of Charlie and the Chocolate Factory, ‘Most Wonkalicious Creation’ will win the Whipple-Scrumptious prize of a family ticket to the brand new musical of Roald Dahl’s Charlie and the Chocolate Factory at London’s Theatre Royal Drury Lane, and a bundle of Roald Dahl goodies.

The videos will be judged by a panel of Roald Dahl experts and the winners will be announced on the Dahlicious Dress Up Day on Friday 26th September.

If your child’s school hasn’t yet signed up for the Dahlicious Dress Up Day, it’s not too late to join in – ask their teacher to sign up at www.dahliciousdressupday.org

Huge thanks to everyone at Regalead for their tireless fundraising efforts. From an extraordinary golf challenge (taking in five courses in five countries in just two days) to cycling from London to Paris, the company’s employees have wholeheartedly embraced us as their Charity of the Year and are doing some marvellous things to raise money. Thank you!

Clare and Paul didn’t want to jet off to somewhere exotic on their honeymoon; instead they decided to start their married life with a fundraising adventure walking coast to coast. “We can’t wait to get married in October and when our thoughts turned to the honeymoon we were certain that we wanted to use the opportunity to raise some money for a wonderful local cause.” On 6th October Clare and Paul will be setting off on an 84 mile journey along Hadrian’s Wall and we wish them all the best for their nuptials and honeymoon trek.

Anita set herself the challenge of a lifetime to climb Mount Kilimanjaro both in memory of her mother and to raise some splendid money. She admits that “I have to transform myself from a couch potato into a mountain lion,” but we’re confident she will do it! We wish her every success in completing the challenge. Good luck with your training Anita! We’d also like to say a huge well done to Olivia who has recently completed this epic climb.

This year we teamed up with the nation’s favourite trucking firm Eddie Stobart to raise £30,000 for seriously ill children. From collecting tins at Southend Airport to raffles at Stobartfest (and skydiving in

about the next phase of this project - our new ‘Marvellous Nurse Inventing Room’ - on our website www.roalddahlcharity.org

• 52%offamilieswithadisabled child are at risk of experiencing poverty

• Itcostsuptothreetimesas much to raise a disabled child than it does to raise a child with no disabilities

• 41%offamilieswithdisabled children aged three and four struggle to access the full 15 hours free entitlement to childcare and early years education

• 30%ofpatientsreceivedthree or more misdiagnoses

• 52%ofpatientsorfamilies thought they weren’t given enough information about their condition on diagnosis

• 52%offamiliesreportedthat patient organisations are their main source of information on their condition

• Only29%ofpatientsfeelthey received adequate support for their psychological needs

Roald Dahl’s Marvellous Children’s Charity is working hard to support families but we need your help to do even more.

We are supporting children and their families across the UK living with rare conditions, through our Family Resilience and Stronger Families programmes.

Did-you-know? Hold-onto-your-hats!-It’s�time-for-our-‘marvellous�costume-make’

Oompa-Loompa Skydive Saturday 13th September

Dahlicious Dress Up Day Friday 26th September

The Toad and the Snail Sunday 26th October, 12pm

Christmas Cards

OurintrepidOompa-Loompa jumpers will take to the skies: follow the day on Twitter @roalddahlfund #oompaloompaskydive

It’snottoolatetojoinin-sign up for your fundraising pack at www.dahliciousdressupday.org Follow on twitter: #dahlicious

LondonPhilharmonicOrchestrapresent a family concert featuring Roald Dahl verse with music at the Royal Festival Hall in London. Book tickets at www.lpo.org.uk

OurdelightfulChristmasCards,illustrated by Marvellous Charity President Sir Quentin Blake, are on sale now. Buy online at www.roalddahl.com/shop or request an order form by emailing fundraising@roalddahlcharity.org

Marvellous�Diary Dates

Monday 8th September marks the beginning of Remember a Charity Week, when charities nationwide will be asking their supporters to consider,

Marvellous�Marvin,�that's-me...

Make a single donation. Set up a regular donation.Receive information about leaving a gift in my Will Receive a Christmas Card order form

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after family and friends have been provided for, whether they will leave a gift to charity in their Will.

It is due to a legacy that Roald Dahl’s Marvellous Children’s Charity was established and created the first ever Paediatric Epilepsy Nurse Specialist post in the UK. Our founder Felicity Dahl wished to remember her husband’s kindness towards children and to make a difference to their lives in his memory.

Leaving a donation in your Will can have a dramatic and long lasting effect on the lives of many seriously ill children. To find out about how to leave a donation, request a copy of our legacy leaflet via the reply form or contact our fundraising team on 01494 890 465 or email us fundraising@roalddahlcharity.org.

Roald Dahl with his grandson Luke. Photograph by Jan Baldwin.

Fantastic-FundraisersA big THANK YOU to all our...

A recent Parliamentary Inquiry into Childcare for Disabled Children found:

A report from Rare Diseases UK, ‘Experiences of Rare Diseases: An Insight From Patients and Families’ found that:

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