Meet the 1st Roald Dahl Nurse

Back in the early 90s at a children’s hospital in Liverpool, Anne Sweeney – Sister Sweeney to her colleagues and patients – was a passionate nurse and midwife. She had always been mindful that, in her role, nursing children meant, as well, supporting their family. But it was, she says, a study she did on febrile convulsions in children that gave her an insight into just how important that support could be in treatment and recovery. And when it came to epilepsy, how distressing this childhood diagnosis was. How fearful families were and how traumatised they could feel. And how just how little they knew about the condition, or what to do when their child experienced a seizure at home. There was, Anne Sweeney’s team realised, a gaping hole in our service for a specialist epilepsy nurse – and when Anne started to speak to colleagues and consultants, they all became interested in what that role might do, if only there were the funds to do it.

“Then one of the medical secretaries told us she’d seen something on Blue Peter featuring the launch of Roald Dahl’s Marvellous Children’s Charity. So, Anne’s Consultant in charge at the time - phoned them up and Dame Felicity Dahl, Roald Dahl’s widow, answered the phone. Ten days later she came back and said they’d establish a specialist nurse role for a year. And so things began. Anne says: “I was used to nursing children with different conditions and it was clear, when it’s complex or lifelong as epilepsy can be how, how much help and information and support families need.

“These were the days when we had paper diaries, and we organised our own. So I planned my diary to include epilepsy courses and care, and looking into what information and support families received. “I discovered how little information the family had in between clinic visits. How siblings were often frightened by a seizure, and of being left along with their brother or sister. I did outreach in schools and brought families together for coffee mornings. And I put together information leaflets about the different types of epileptic seizures and the medications offered and how they worked or how epilepsy impacted on teenagers. I’d advise parents how to get the most out of a doctor’s appointment (writing questions down). I worked to make every minute of that funded year count. I could see that education is power. Support empowering. I could see that in parents’ eyes… “And all this time I was presenting to colleagues what I was doing and what I was finding.   “Doctors who’d felt, initially, that his specialist role was not necessary - it was really up to them to advise parents on the epilepsy diagnosis - suddenly started to report how it had reduced their workload, save clinic time, reduce dashes into A&E and helped give parents confidence. Once they started to feel the benefit, I asked for more time to explore, researching what was happening on wards.” What was one year turned into 17 for Anne Sweeney, and that funding she received as the very first Roald Dahl Nurse turned into an opportunity, via Roald Dahl’s Marvellous Children’s Charity, the charity Dame Felicity Dahl founded - to establish Roald Dahl Nurses, not only specialising in epilepsy, but conditions like sickle cell and complex, lifelong medical conditions. As well as establishing Road Dahl Nurses, the charity organises training, workshops and conferences to promote best practice in personalised care, and work to find new ways to improve the health of thousands of children. There are now 150 Roald Dahl Nurses working in NHS Trusts across the country, supporting 36,000 children at any one time, including thousands diagnosed with epilepsy. Charity founder Dame Felicity Dahl said: ‘I am immensely proud of the charity’s work and the dedicated care provided by our Roald Dahl Nurses. It’s particularly personal for me, as my mother was a nurse, so I feel very deeply for the marvellous work the specialist nurses do. "Caring for a seriously ill child can be overwhelming and isolating, so it is wonderful to know that families under the care of a Roald Dahl Nurse also now benefit from the charity’s Marvellous Family Support Services, which provide financial and emotional support for them during frightening times." Anne says: “I am retired now, but I retired knowing the important place Roald Dahl Nurses have in children’s care. And feeling so privileged to have been the first…” Roald Dahl’s Marvellous Children’s Charity is working closely with the NHS and is on a mission to make sure every seriously ill child and their family can benefit from the ongoing support of a Roald Dahl Nurse who stays by their side as they navigate that complex and challenging journey. Families can also benefit from the charity’s Marvellous Family Support Services offering emotional and financial support. Our small charity has huge ambitions to raise funds across the year to establish more Roald Dahl Nurses so more seriously ill children can lead a more marvellous life. And this Christmas we feel so privileged to have the chance to feature in the Daily Express Christmas Appeal to help make that happen. Find out more and donate what you can here.