Roald Dahl charity funds network of specialist nurses
Roald Dahl’s Marvellous Children’s Charity is the inspiration for a network of specialist nurses to support severely ill children.
As the author of some of the most famous children’s books, Roald Dahl’s impact on the lives of young people is obvious. But less well known is his legacy in terms of helping the sick and injured.
Through Roald Dahl’s Marvellous Children’s Charity, he is the inspiration for a network of specialist nurses who support severely ill children. The charity was set up by his widow, Liccy, after he died in 1990 in recognition of Dahl’s interest in and affection for health professionals.
As a young man, his spine was damaged in a plane crash and he needed careful nursing back to health. Then, when he was older, his children needed help. His son, Theo, was injured when his pram was hit by a taxi. Hydrocephalus was diagnosed and he underwent repeated operations to clear fluid from the brain. Determined to do something to help, Dahl ended up inventing a shunt – a one-way valve to drain the fluid – that was used in the 1960s but has now been superseded by more up-to-date devices.
Funding provided by charity to pay for specialist nurse for two years
Later, his daughter, Olivia, died tragically after contracting measles and encephalitis. It prompted Dahl to campaign for the introduction of a measles vaccine when it became available.
When he died, Liccy, who is still active with the charity, thought something that supported the health service would be a fitting tribute. The first nurse, Anne Sweeney, was appointed 24 years ago in Liverpool and since then the numbers have grown to 54 with another 11 to be trained. The focus is on areas and conditions where there is greatest need.
Ethos of the underdog
Charity chief executive Jane Miles, who is a trained nurse and spent nearly 30 years working for the NHS, says: ‘If you think about Roald Dahl’s books, many of them are about the underdog succeeding in the face of adversity. In Charlie and the Chocolate Factory, Charlie comes from a life of poverty, while Matilda faces up to bullying.
'That ethos is apparent in the work we do as a charity. We put resources in to help the underdog. Conditions like cancer have a lot of attention so we focus on the ones that don’t,' says Ms Miles.
Roald Dahl nurses in place
This has led the charity to invest in nurses who work with children with epilepsy, blood disorders and acquired brain injury. There are also others who specialise in rare diseases and the charity funded the first ever nurse to work with children without a diagnosis at Great Ormond Street Hospital.
There has also been an emphasis in recent years on recruiting nurses to help children transition from child to adult services. London’s King’s College Hospital, Giselle Padmore-Payne is one of them. She helps children from the age of 13 or 14 through to when they are ready to move into adult services.
‘I work with them to build up confidence and their ability to advocate. When you are in the adult system you need to be able to ask for things and communicate with staff in a way you don’t when you are a child. I introduce them to the adult services and explain how it works and differs so when they are ready they can move with confidence.’
Of further funding – the commitment needed from the NHS
The charity has an established arrangement with the NHS over the funding of the posts, which sees it cover the £100,000 costs for two years. The NHS then has to commit to another three years of funding. It has proved successful – only one post has been discontinued in all the time the charity has been in existence.
While most of the nurses are employed by hospitals, the emphasis is on working in the community, carrying out home visits and working with their patients' schools as well as coordinating care.
The charity has also invested in other health professionals, including occupational therapists and a play therapist. ‘One of the strengths of the network is that the nurses are not isolated,’ says Ms Miles.
‘They can share best practice and we support them with training and conferences where they can meet up. We encourage them to let us know what problems they encounter and that is why we invest in other staff too. There is also a fund for families suffering hardship whether it is travel and parking costs or for equipment.’
But the charity, which relies on fundraising as well as grants from the Roald Dahl literary estate, is ambitious to do more. It has a waiting list for 15 new posts. ‘If we can raise more money we can fund more nurses. Like Roald Dahl, we believe in never giving up,’ Ms Miles says.
The inventing room
As well as funding nurses, the charity also runs a project to encourage innovation in the NHS. The scheme – called the Marvellous Nurse Inventing Room – supports 12 projects with the Burdett Trust for Nursing. These include a Facebook campaign to encourage young boys with haemophilia to be proud of and confident about self-injecting.
Digital technologies are also being used to help children with sickle cell disease have consultations with clinical staff at home via a video app. Meanwhile, a superhero-themed project is making life better for children with juvenile arthritis. The patients are given a book, cape and doll representing the main character in the book and are then allowed to wear the cape during injections to make them feel brave.
Ms Miles says: ‘Some of it is really simple, but it makes a difference. However, the NHS does not always have the time for these things. Looking at ways to improve care is something I am passionate about. So, we provide some seed funding – about £15,000 per project – to get it going. We are now looking to spread and disseminate the best bits from the projects.’
Aidan has an undiagnosed neuromuscular condition, has regular tests and makes frequent visits to Addenbrooke’s Hospital in Cambridge. A Roald Dahl specialist nurse provides on-going support for him and his family. This support includes clinical advice and logistics, such as ensuring appointments in different departments are coordinated on the same day so Aidan does not miss too much school.
Aidan’s mum, Nicola, says the help they receive from their nurse makes a world of difference.
‘There may be five different things that need to be done. He doesn’t just go into the child development centre, there are bloods to be taken, he has an MRI scan, cardiology and more – and that’s just the logistics I’m talking about.’
Nick Evans is a health writer