Roald Dahl’s Marvellous Children’s Charity has announced it will be funding its first children’s specialist neuromuscular nurse at Addenbrooke’s Hospital in Cambridge.
The new specialist post will help to improve the lives of children and young people with neuromuscular conditions in the East of England and will be the third Roald Dahl specialist children’s nurse post based at Addenbrooke’s, funded by Roald Dahl’s Marvellous Children’s Charity.
The full-time post has been created and funded for its first two years by the charity. Cambridge University Hospitals NHS Foundation Trust has in turn committed to fund the role for a further three years. Applications for this role are now open.
Richard Piper, CEO of Roald Dahl’s Marvellous Children’s Charity said: “In the UK, services for paediatric neuromuscular disorders are so patchy that most children will not live beyond their mid 20s, whereas in Denmark they will live nearly twice as long.
“Children and their families deserve better than this. Our health service can do better than this.
“We believe that our new Roald Dahl nurse will help this rapidly growing service to be recognized as a centre of excellence in the near future.”
The new Roald Dahl nurse will provide specialist information, emotional support and care, so that families are not left to cope with their child’s condition alone.
“The nurse will become the essential link between families and the hospital, and other services based in the region.
“The Roald Dahl nurse will provide training sessions and study days, and act as a coordinator for research in national and international clinical trials.
Dr Gautam Ambegaonkar, Consultant Paediatric Neurologist and Lead for Paediatric Neuromuscular Services at Addenbrooke’s said: “The new Roald Dahl nurse will play a vital role in developing our service to help more children and young people with complex neuromuscular disorders.
“The nurse will optimize the care that our current 116 children are receiving, and also seek out children and young people from across the region who are not currently receiving any care at all.”
The new Roald Dahl nurse will be helping children such as Alexis, who is five years old and has Duchenne muscular dystrophy. Alexis lives in Southwold in Suffolk with his parents and two younger sisters.
“He was diagnosed with Duchenne muscular dystrophy when he was six months old. Alexis’ family used to travel to Great Ormond Street Hospital in London for an annual health review, and the six hour round trip was difficult and exhausting.
Alexis is now cared for by the Addenbrooke’s neuromuscular service at Cambridge. Since the neuromuscular service is able to offer the same high quality care, the family have not had to return to London and their journey for Alexis’s annual health review is much easier.
Once the new Roald Dahl nurse is in post, Alexis will also benefit from more frequent support when he needs it.
Alexis’ parents were delighted to hear that a paediatric neuromuscular nurse will soon be in post thanks to Roald Dahl’s Marvellous Children’s Charity.
They said: “The Roald Dahl nurse will be an excellent point of contact for us, especially because Alexis has recently started on a new course treatment and he will need close clinical monitoring.”