Roald Dahl’s legacy supporting seriously ill children

Sophie Dziwinski, Head of Programmes at Roald Dahl’s Marvellous Children’s Charity, works to fulfill Roald Dahl's legacy

Sophie Dziwinski, Head of Programmes at Roald Dahl’s Marvellous Children’s Charity, works hard to ensure seriously ill children have access to specialist nurses in support of Roald Dahl’s legacy.

When most people think of Roald Dahl they think of his written works, however he was a man of incredible creativity and determination. His legacy is carried on through Roald Dahl’s Marvellous Children’s Charity and its specialist children’s nurses.

What’s the history behind the charity and Roald Dahl’s legacy?

There was so much more to Roald Dahl than his stories. His incredible life was also affected by serious illness, tragedy and loss. It was these personal experiences of illness – of his own and his close family – which spurred Roald Dahl’s legacy to help seriously ill children and their families.

Roald Dahl believed in taking practical steps to improve the lives of those around him. His creativity and determination even helped to develop pioneering medical treatments, such as the Wade-Dahl-Till valve, which has been used to help thousands of children with hydrocephalus. He also generously gave his time and money to help seriously ill children and their families, including many he never met.

Following his death in 1990, his widow, Felicity, set up Roald Dahl’s Marvellous Children’s Charity to continue this part of his legacy. Up until 2013, the Charity focused on supporting children with specific brain and blood conditions, but today it has expanded to focus on all serious chronic illnesses, including rare diseases.

What’s the aim? And how are you progressing to achieving that?

The aim of the charity is to ensure that every seriously ill child has the best possible healthcare. We strive to achieve this by creating and funding specialist children’s nursing posts within the NHS. We focus on placing expert nurses who specialise in conditions that we feel are underfunded and misunderstood, in the areas of greatest need or deprivation across the UK. We believe innovation is essential, so we support our nurses through knowledge-building and encourage them to think imaginatively about how best to perform their roles, providing funding for nurse-led initiatives that we believe will improve the lives of the children in their care.

How many nurses have been placed?

The first Roald Dahl Children’s Nurse Specialist post was funded in 1992 at the Alder Hey Children’s Hospital in Liverpool. This post was the first-ever Epilepsy Nurse Specialist in the UK. In July 2018, we proudly announced that our 70th Roald Dahl children’s nurse started in post during the week of the NHS’s 70th birthday.

What support do they give?

Our Roald Dahl Nurses provide holistic care and support to seriously ill children, young people and their families at home, in school, in the community, and in hospital. They play a critical and complex role, working directly with the patient and family as their key point of contact and link between them, the consultant and the hospital. Our nurses give expert advice and assist with care coordination, advocacy, training and education of parents, teachers, children and young people, and healthcare professionals.

The practical and emotional support our nurses provide, as well as their specialist knowledge, makes a huge difference for families. They know the child and family well, often from birth and certainly from diagnosis, providing personalised support during what can be a challenging time for families. Where possible, we encourage our nurses to make the often-frightening aspects of a child’s healthcare, less alarming. Whether by sympathetic explanation, play therapy, or a dash of humour. Often the trust families have in their Roald Dahl specialist nurses makes all the difference.

How does someone become a Roald Dahl nurse?

Our Roald Dahl nurse posts are predominantly at a Band 7 level, these are nurses who are experienced, senior clinicians with expert knowledge and passion in their specialist area. The new posts are advertised through the NHS Jobs website, individual NHS Trusts, the charity’s social media platforms and website, as well as through our network of Roald Dahl nurses and supporters.

How do you cover the costs of the nurses?

We fundraise for the costs of the nurses through community fundraising, corporate partnerships, Trusts and Foundations. We are particularly indebted to the Roald Dahl Charitable Trust for their financial support. The Trust’s funds come from royalties paid on sales of Roald Dahl’s work, and its support often makes up around half of our fundraised income.

We fund each nursing post for two years, with a three-year commitment from the NHS Trust to continue the post. After five years, our nurses have proved the value and impact of their service as they have become key members of their teams.

What else does the charity do?

The charity also provides Marvellous Family Grants to families in hardship with children with long-term conditions. These grants are often described as a lifeline for families, funding practical items such as specialist equipment, travel costs for family members to visit their child in hospital, and art, music and play therapy which is not available on the NHS. Our nurses can apply on behalf of their families for this extra support.

What are the aims for the future?

The charity is aiming to recruit more specialist paediatric nurses and to strengthen its focus on innovation with the relaunch of the Marvellous Nurse Inventing Room. This scheme supports nurses if they want to test and trial new healthcare initiatives and helps them to disseminate and implement their findings.

Everything we do, now and in the future, is aimed towards supporting our Roald Dahl nurses and listening to the voices of the children and young people we look after, in our mission to improve the healthcare of seriously ill children.   

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