During Roald Dahl’s long and remarkable life as an author he was affected by serious illness, tragedy and loss (*see pull-out box below) and the specialist nursing charity – Roald Dahl’s Marvellous Children’s Charity – was created in his memory by his widow, Dame Felicity Dahl, shortly after his death in 1991.
Today – nearly 35 years later – the charity has over 200 Roald Dahl nurses based in NHS Trusts across the UK, and they support over 40,000 seriously ill children living with complex, lifelong conditions.
Jess Naylor, based at Bradford Royal Infirmary, is one of them. She is a Roald Dahl Haematology Clinical Nurse Specialist and, like the other Roald Dahl nurses, is highly trained and dedicated to her specialism and able to provide a holistic and bespoke kind of care to the families of the children she cares for.
Jess said: “I help care for around 400 children with haemoglobinopathy conditions and haemostasis disorders (bleeding and clotting conditions). If mild, they are seen in the outpatients’ clinic every six to twelve months, or if they have more severe conditions, require treatment in home and/or hospital.
“A typical week sees me support ward 12 patients who come in for regular blood transfusions. I also carry out home visits and administer routine treatments like injections of factor treatment, hold a nurse-led clinic twice a month, as well as join weekly clinics with Dr Sally Pollard at St Luke’s Children’s Outpatients. She is the Trust’s paediatric consultant with an interest in haematology. Dr Helen Barry has also just joined the team.
“I also request bloods and treatments for children and co-ordinate blood tests for our patients who attend the Leeds General Infirmary (LGI) for exchange transfusions. I have monthly multi-disciplinary team meetings (MDTs) with Dr Pollard, and we have monthly MDTs with the LGI which is the regional specialist centre where all paediatric patients, who are under the shared care of both trusts.”
From left, Dr Sally Pollard, Jess Naylor and Dr Helen Berry
Jess and all Roald Dahl nurses are employed by the NHS and their posts are ‘pump primed’ by Roald Dahl’s Marvellous Children’s Charity for the first two years. The charity raises money for the initial two years and after that, the long-term funding is taken up by the hospital trusts, while the nurses maintain the Roald Dahl Nurse title and continue to benefit from the charity’s peer support community, nurse-led innovation projects and the charity’s Marvellous Family Support Services for those children and families in their care. Jess took over from our first Roald Dahl Nurse, Linda Brooks, who retired in 2022 after more than 20 years in nursing.
Jess continued: “I love my job, I love the patients and their families, and I love being able to help provide treatments so they can live as normal a life as possible.
“There’s lots of things the children and young people can’t do, like climb trees or play contact sports as an injury like a bang to the head could lead to serious bleed. By providing treatments at home and in hospital, it enables patients to lead as normal a life as possible.
“I also train families to do treatments themselves so while their kids’ lives aren’t normal as they have conditions they will be living with for the rest of their lives, it gives them the opportunity to have a chance of a ‘new normal’ so they go about their lives as best they can.
“Some blood transfusion children can get overloaded with iron, others can be non-compliant with medication, while some have to attend schools with pumps attached to their bodies – no child wants to be different, so it’s about making things as easy for them as I can.”
Roald Dahl’s Marvellous Children’s Charity
Jess also visits schools throughout the Bradford district to explain a child’s needs and to explain educate teachers and teaching assistants about their condition.
As soon as a child has a diagnosis of haemophilia, it’s about “explaining the importance of their condition alongside reassuring and emphasizing they still need to be children and not be excluded from future opportunities and different sports because of it,” she explains.
This year, the Trust is delighted to have secured a second post with the recent announcement of the creation of a Roald Dahl Children with Medical Complexity Nurse Specialist which Roald Dahl’s Marvellous Children’s Charity will raise the funds for so they can be in place in 2026. Anyone that would like to donate to the charity to support this endeavour and help the seriously ill children in this area should go to https://www.roalddahlcharity.org/
Did you know?
It was Roald Dahl’s personal experiences of illness – of his own and his close family as he tragically lost his father and sister at a very young age and his seven-year-old daughter, Olivia died from encephalitis caused by measles – which spurred Dahl to help seriously ill children and their families.
Dahl believed in taking practical steps to improve the lives of those around him.
His creativity and determination even helped to develop pioneering new medical treatments, and he also generously gave his time and money to help seriously ill children and their families, including many he never met.