from Birmingham, Manchester, London, Southampton and Aberdeen. They were rare disease transition nurse specialist Janet Tuberville-Greenley, non-malignant haematology nurse specialist Giselle Padmore-Payne, children’s epilepsy specialist nurse Jo Campbell, haemostasis specialist nurse Trish Bell, and bone marrow transplant nurse specialist Helen Webster.

Her Royal Highness welcomed the nurses, children and parents into her London home to decorate her Christmas tree. Following this she helped the children and parents to have lunch before giving them all a goody bag full of presents.

Her passion for both literacy and children makes her the perfect ambassador to work with Roald Dahl’s Marvellous Children’s Charity. We think that she’s just marvellous and she will undoubtedly bring a lot of joy to a lot of people.

We were absolutely thrilled to announce in December that the Duchess of Cornwall had agreed to become our Royal Patron. We believe that with her support we can make an enormous difference in raising the awareness of our work and strengthen our efforts to ensure that seriously ill children across the UK live the fullest lives possible.

On the day of the announcement five Roald Dahl specialist nurses accompanied by five children they treat and their parents joined Her Royal Highness to decorate the Christmas tree at Clarence House and have lunch. The five nurses were chosen to represent the work of the charity across the UK

MarvellousSupporter Newsletter

News

Many of our Roald Dahl Children’s Specialist Nurses are based in hospitals however they also work in the community, supporting children and young people through home and school visits. Our nurses are experts in their field and they work together with families and schools to help keep children and young people at home and out of hospital. We have also funded dedicated Community Nurse posts to work together with hospital teams to provide vital support in the community that the children and young people with serious long-term conditions so desperately need.

We are delighted to welcome the following new children’s epilepsy nurses whose roles are purely community focussed:

• Louise Nilsen-Morgan – Alder Hey Children’s NHS Foundation Trust

• Sharon Seton – Solent NHS Trust

Raising Awareness of Sickle Cell AnaemiaWe have brought our Roald Dahl sickle cell nurses together to find out how we can better support them. The nurses raised the issue of lack of awareness of sickle cell anaemia amongst the general public, at schools and with some healthcare professionals. Two marvellous families and Roald Dahl Nurse Edith, from the Whittington Health NHS Trust, helped us make some short films to increase understanding of the condition and the challenges they face. The films also offer practical advice on how everyone involved in the child’s care can be aware of how to help manage the condition, and its seriousness. Our first film, aimed at the general public, was premiered at the Roald Dahl Nursing Conference in December 2017. Our next film, developed for school teachers, will be released soon.

Find out more by visiting the Roald Dahl channel on YouTube and selecting ‘Roald Dahl’s Marvellous Children’s Charity’ from the playlist.

STOP PRESS!

Sickle Cell Anaemia & Thalassaemia Factsheets Now Available‘Your Guide to Sickle Cell Anaemia & Thalassaemia’ - The new factsheet is available to all our Roald Dahl sickle cell nurses and families who may benefit from receiving one. Information and advice about the condition is presented in a fun and engaging way. If you would like more information about the factsheets or have any queries in relation to Sickle Cell Anaemia, then please email us at: sicklecell@roalddahlcharity.org

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 2018Meet the TeamRoald Dahl Neuromuscular Nurse Specialist – Katie Ward

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

The Leeds Neuromuscular Service at Leeds Teaching Hospitals NHS Trust provides support for children and young people with rare and complex conditions which affect their muscle function. The service has been marked as one of only five ‘Centres of Excellence’ in the UK by the Muscular Dystrophy Campaign. The appointment of a Roald Dahl Neuromuscular Nurse Specialist completes the team of Paediatric Neurologists, Physiotherapists, Occupational Therapists and Specialist Care Advisor who provide assessment, treatment, advice and support to children and young people and their families in the community.

Katie Ward is the new Roald Dahl Neuromuscular Nurse Specialist at the service. She started in post in Autumn 2017. Katie says, “We work in outpatient clinics, hospital wards, at home, nursery or school. Our mission is to make a positive difference in children’s lives using specialist, individualised and fun therapy and care. We provide training and education for a variety of care providers in partnership with the multi-disciplinary team, the child and their family. My new role has personally fulfilled a long-term career aspiration but most importantly, I feel fortunate to be inspired every day, working alongside children and their families in the Neuromuscular speciality. I feel very proud to be developing the nurse specialist role with the support of the Neuromuscular Team and the charity. Thank you!’

Roald Dahl Nurse Katie is also making great use of the Marvellous Family Grants Programme for the families in her care. She applied for a Marvellous Family Grant for a 15-year-old boy who has Duchenne Muscular Dystrophy, enabling him to access educational resources at home and to provide social support links for him and his peers.

Roald Dahl’s Marvellous Children’s Charity Project Manager – Dr Candice Pellett OBE, RN, DN, Queen’s Nurse

We’re undertaking a special project to evaluate the impact of Roald Dahl specialist children’s nurses. This work will enable us to demonstrate the outcomes delivered through our Nurses’ work, the impact this has on children, young people and their families, and show the difference we are making in the care of seriously ill children and young people and the savings made to the NHS. Through validating the impact we are confident that we will be able attract wider support to help us fund more nursing posts in areas of greatest need.

To drive this evaluation work, we’re delighted to welcome Dr Candice Pellett OBE, RN, DN, Queen’s Nurse to the team. Candice is an experienced District Nurse and was awarded her OBE for Services to Nursing and Healthcare in 2014 and The Queen Elizabeth the Queen Mother Award for Outstanding Service by the Queen’s Nursing Institute (QNI) in the same year.

Candice adds, “I am looking forward to working with the team and meeting Roald Dahl Nurses to learn more about the fantastic work they do.” Candice is also looking forward to supporting the charity at future events and through fundraising whenever she can. Welcome to the team Candice!

Roald Dahl Nurses in the Community

Her Royal Highness The Duchess of Cornwall Becomes Our Royal Patron

Welcome from

the CEO

Get in touch

Since the last newsletter so many exciting things have happened.

The highlight had to be the announcement that HRH the Duchess

of Cornwall has agreed to become our Royal Patron. More of

that in the newsletter. December was a particularly busy month

as our nurses from across the UK came together for our Annual

nursing conference. We celebrated our successes, welcomed

our new nurses and had the opportunity to hear about the

work our nurses are doing across the country. We also

introduced Marvin’s Marvellous Medals and the Grown-Up

Awards – read on to find out more!

The requests for more nurses from across the NHS are greater

than ever before and you will see some of them highlighted in

our newsletter. If you think that you can do more to support

us then please do get in touch. Whether you hold a coffee

morning, motivate your friends to fundraise, set up

a regular gift to the charity, run a marathon or

volunteer, it would be marvellous to hear

from you.

Photo - Ian Jones Photography

1 Sickle Cell Anaemia and Thalassaemia are genetic blood disorders

caused by errors in the genes for haemoglobin. Both are serious lifelong

conditions which need regular monitoring and specialist support.

4 The disorders are among the most common hereditary

diseases worldwide and Sickle Cell Anaemia is the most

common genetic disorder in England.

3 These conditions affect people from a variety of backgrounds, and are

particularly common in people with an African or Caribbean background.

2 Advances in treatment have moved these

conditions from fatal to chronic conditions.

Anaemia, which typically causes:

Sickle Cell AnaemiaThalassaemia

1 Painful episodes called sickle cell crises,

which can be very severe and can last up to

a week. These are caused by red blood cells

changing shape and becoming rigid then

obstructing narrow blood vessels.

2 An increased risk of serious infections.

3 Anaemia (where red blood cells can’t carry

enough oxygen around the body), which can

cause tiredness and shortness of breath.

4 Some people also experience other problems such

as delayed growth, strokes and lung problems.

1 Tiredness (fatigue) and a general lack of energy.

2 Shortness of breath.

3 Noticeably pounding, fluttering or

irregular heartbeats (palpitations).

4 Pale skin.

5 Yellowing of the skin and eyes (jaundice).

6 Frequent blood transfusions will usually be

needed for life to stop anaemia becoming severe.

7 Iron overload due to frequent transfusion.

8 Endocrine complications.

TheFacts

Sickle Cell

Anaemia &

Thalassaemia

YOUR GUIDE TO

Main Symptoms

Marvellous Privacy Policy

Roald Dahl Nurse Neil Improves Transition Services For Young Adults In His CareFor young people with chronic and complex health needs, the transition from children’s services to adult services can be a challenging and for many, an anxious time. Having dedicated staff with expertise in adolescent care and transition enables the young person to build confidence and feel in control, as they navigate towards caring for themselves and negotiate adult healthcare systems independently of their parents.

We are therefore delighted to welcome Neil Fletcher, our new Roald Dahl Clinical Nurse Specialist for teenagers and young adults at Barts Health NHS Trust. Neil started in post in December 2017 and he is already making a considerable difference to the lives of young people with serious health conditions. One of his objectives is to deliver the Department of Health’s ‘You’re Welcome’ Quality Standard across the Trust for young people friendly health services (which sets out principles to help commissioners and service providers to improve the suitability of NHS and non-NHS health services for young people.)

Neil is currently working across three of the Trust’s five main sites, supporting young people with sickle cell anaemia at Whipps Cross University Hospital, those with diabetes at Newham University Hospital and the young people requiring dialysis at The Royal London Hospital. He is also providing Trust-wide support for teenagers between the ages of 16-18 who are admitted to adult ward areas. As part of Neil’s work, he helps tackle issues that are important to the Barts Health NHS Trust Youth Empowerment Squad (YES), made up of a group of young people who have extensive experience and knowledge of healthcare. The group meets regularly to share their views and improve patient experience.

Roald Dahl Nurse Neil says, “I feel very privileged to be a Clinical Nurse Specialist for teenagers and young adults. I visit clinic areas where teenagers are being prepared to transition from children’s to adult services and I review good practice so we can share this across the Trust. With the support of the Youth Empowerment Squad, we can really begin to improve the experience of teenagers and young adults and their voice can begin to be heard loudly.”

To support Neil’s work, we are raising funds to secure a second Roald Dahl nurse – a Roald Dahl Transition Co-ordinator – to help Neil develop the service and support young people undergoing difficult transition. With a second nurse in post, they will be able to extend the age remit for the young people they work with, increase the number of specialties and be able to offer more one-to-one support to young people with long-term conditions. Get involved and help us fundraise for the new nurse post. Contact us at: fundraising@roalddahlcharity.org

News from our Marvellous Friends The Dahlicious Dress Up Day

Marvin’s Marvellous Medals

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

Charity Walk for Peace: Sunday 29 April Distance: 5 miles Fundraising Target: £100

A spectacular and family-friendly event. Walk through the beautiful and historic Royal Great Windsor Park and take part for FREE.

Windsor Colour Obstacle Run: Sunday 20 May

Distance: 5k Fundraising Target: £50+ Registration Fee: £40

Edinburgh Marathon Festival: Saturday 26 May

Distance: 5k and 10k Fundraising Target: (5k) £75, (10k) £150 Registration Fee: (5k) £35, (10k) £55

Spartan Sprint: Market Harborough, Saturday 14 - Sunday 15 July

Distance: 5 – 16k Fundraising Target: £200+ Registration Fee: £54

Ready to register for an event or want to talk to a friendly human bean? Speak to Nicky. Email: nickywroalddahlcharity.org or call 01494 917 696.

Diary Dates

Success for The Longest Try

Robbie Dolan, an amateur Rugby League player turned Ultra Marathon runner, went above and beyond for us by completing The Longest Try, an incredible endurance event involving 1800km of running in 42 days, carrying a rugby ball across Australia. Robbie ran an average of 50km (that’s more than a marathon) each day! His incredible feat was mirrored by his marvellous fundraising achievement, raising over £6,400 for the charity. A HUGE thanks to Robbie and his partner Miriam for their superb fundraising. Feeling inspired by Robbie? Check out our challenge events on the next page.

Corporate Partners NewsNew partnership with Auntie Anne’s Pretzels

We are delighted to announce that Auntie Anne’s, makers of delicious pretzels with over 30 outlets throughout the UK, have chosen to support us. Their franchises will be participating in some marvellous fundraising activity throughout the year. Mr Twisty, Auntie Anne’s mascot, is also looking forward to meeting Marvin the Marvellous Crocodile very soon!

New partnership with Electromod High-end audio equipment business Electromod has chosen to support the charity with a longstanding partnership, by donating a percentage of their sales to us each month. We are incredibly excited about this partnership, so stay tuned for more information.

Ambassadors Theatre Group (ATG)Over the pantomime season, 12 participating theatres from ATG took part in festive fundraising, raising over £65,000. With more fundraising activities planned, they are aiming to raise more funds for us in the coming year.

Edgewell Edgewell has raised £11,448 to date, and are continuing their support with a range of exciting fundraising plans this year, including surprise auctions, skydives and a big walking challenge!

Explore LearningExplore Learning has raised £17,139 for the charity, and are excited to continue their fundraising through challenge events and lots of marvellous activities. Some of our Roald Dahl Nurses recently visited a number of their tuition centres to talk about the work they do and tell children and families more about the charity.

Chipmunks Look out for Chipmunks footwear launching their bespoke wellies for our charity this Spring, featuring Marvin the Marvellous Crocodile. 10% from the sale of each pair of wellies will be donated to us. Visit: www.ChipmunksKids.com for local stockists.

The marvellous support our charity partners have given in the last year has enabled us to fund 12,750 hours of specialist nursing care across the UK.

Want to become a corporate partner, or organise some fundraising with your work colleagues? Email Sarah at sarahs@roalddahlcharity.org or call 01494 917 687.

A big thank you to all our marvellous fundraisers who include: Louise Stothard who organised a craft day with a fantastic array of crafts and some scrumptious home-made cakes, raising a brilliant £500.

Jack & Jill School raised a stupendous £10,000 for us by hosting cake sales, greeting card sales, end of term films, a charity quiz and a fair.

A team of staff from Explore Learning, providers of maths and English tuition, took part in the Surrey Half Marathon, raising over £1000.

Trusts and Grants NewsWith improvements in medical care, life expectancy for children affected by serious health conditions has been extended, increasing the need for young people to move to adult services. A current lack of resources to facilitate this move has highlighted that transformational changes are required to address the situation. We are currently running a Trust funding campaign to recruit a second Roald Dahl Transition Nurse at Barts Health NHS Trust. Read the article on page 2 for more details.

Celebrate the world’s number one storyteller with a fun-filled Dahlicious Dress Up Day on 13 September (Roald Dahl’s birthday) or on any day you like. Children can get dressed up as their favourite Roald Dahl character and donate £1 each to the charity. Schools and community groups across the country can take part in a marvellous day that’s sure to get children’s imaginations whizzing, while having oodles of fun! We’ve got resources for teachers and parents to ensure you have everything you need to have the most marvellous day. To find out more and join in the celebrations, visit: www.dahliciousdressupday.org

Want more ideas about how to get your party started for The Dahlicious Dress Up Day? Ask Nicky, our Community Fundraising Manager to come and give a talk to your children’s school or nursery about the incredible work of our Roald Dahl Nurses and give you fantastic fundraising tips. Email: nickywroalddahlcharity.org or call 01494 917 696.

We have recently launched something rather marvellous: Marvin’s Marvellous Medals and the Grown-Up Awards. These special awards are for families our nurses care for, who have gone above and beyond to help support other families and raise awareness about serious conditions, even when facing difficult circumstances themselves. Families have taken part in awareness raising films and helped the charity understand where there are areas of need for more Roald Dahl nurses, as part of a co-design process when we develop new nursing posts.

The awards were introduced at our annual Roald Dahl Nurses conference which was held in Birmingham at the end of 2017. The conference was a fantastic opportunity for nurses and other healthcare professionals to come together and celebrate the impact of specialist children’s nurses. We were delighted to welcome all the nursing delegates, and also Liccy Dahl, Roald’s wife and founder of the charity who presented the medals and awards, and Roald’s daughter, Ophelia Dahl as well as our keynote speaker, Professor Dame Elizabeth Anionwu DBE CBE FRCN FQNI PhD, the UK’s first sickle cell and thalassaemia specialist nurse.

Marvin’s Marvellous Medals: Grown-Up Awards:George George’s Mum Taye Taye and Tyrell’s Mum Tyrell

We can’t wait to celebrate the amazing contribution and achievements made by other children and families to the charity and the wider community. More medals and awards are due to be made to children and families across the country very shortly. Sign up to receive our monthly e-newsletter to be kept up to date with our plans, visit: www.roalddahlcharity.org

Community NewsUpdates to the

Marvellous Family Grants Programme

We are making some changes to our Marvellous Family Grants to ensure that the programme is meeting the needs of seriously ill children. These include:

• increasing the maximum amount of our grants from £500 to £1,000

• refocusing the sorts of support we will provide

• changing who is eligible to apply on behalf of the seriously ill child. Applications will only be accepted from health and social care professionals who work for statutory organisations.

Please see our website for more details or contact our Programmes Officer, Liz Webber, on 01494 917 689.

Helping Evie-Jean Take Her First Steps

2 year old Evie-Jean has Noonan Syndrome, a rare disease which means she has physical, learning and communication difficulties. With

funding from the Marvellous Family Grants Programme for therapy, she has been attending a specialist centre and can now do many sorting and rolling tasks, turn a wheel when singing ‘wheels on the bus’ and clap. Having learnt to walk with a walker, she took her first steps with little support. These may sound like small things, but to Evie-Jean and her mum they are a massive achievement.

Evie-Jean’s mum says the grant has been a great support. She says, “From learning these new skills, she is a lot more confident and independent. It also helps us as parents feel like we are helping her in some way by providing the best possible opportunity for her.”

Roald Dahl Nurse Neil (bottom right) with the Barts Health NHS Trust Youth Empowerment Squad