On Rare Diseases Day, the Charity announces its first Roald Dahl Nurse for children with rare illnesses at a leading UK children’s hospital
Whilst the new post will be the 51st Roald Dahl Nurse post created by Roald Dahl's Marvellous Children's Charity, it is the first Roald Dahl Nurse to focus exclusively on rare diseases in children. It will also be the first Roald Dahl Nurse to be based at Birmingham Children's Hospital. The nurse will help to improve the long-term wellbeing of children and young people living with serious rare illnesses.
The post will itself will be rare in the UK, because the nurse will be helping children affected by a broad range of rare illnesses. It will also be unique because children and young people with rare illnesses, and their families, will be given the opportunity to help design the role.
Richard Piper, CEO of Roald Dahl's Marvellous Children's Charity said: "Children and young people with rare conditions need extra support to help them get the most out of everyday life. Our amazing Roald Dahl Nurses provide special care to help children and their family to cope with the emotional impact, as well as the physical impact, of their condition. They also help ensure children have their voice heard. We're particularly excited to be involving children in designing the very post that will support them."
The full-time post has been created and funded for its first two years by Roald Dahl's Marvellous Children's Charity, and Birmingham Children's Hospital NHS Foundation Trust has in turn committed to fund the role for a further three years.
Birmingham Children's Hospital currently cares for over 9,000 children a year with rare illnesses living across the UK, encompassing more than 500 different rare conditions. As a national leader for paediatric rare diseases, the hospital provides both secondary and tertiary care to the West Midlands region, as well as substantial tertiary and quarternary care nationally.
Matthew Boazman, director of strategy and planning at Birmingham Children's Hospital said: "This commitment from Roald Dahl's Marvellous Children's Charity comes at an exciting time in the development of Birmingham Children's Hospital. We are already a leading centre for rare diseases, caring for thousands of children with rare diseases and conducting research that will improve the lives of thousands more in the future. This new Roald Dahl nurse will help us continue to deliver the very best treatment for our children and their families, providing access to peer support, coordination of care and ongoing family support."
The new Roald Dahl Nurse will helping children and young people such as Fiona and Laura, who have been treated at the hospital for over ten years. Fiona (16 years old) and her sister Laura (14 years old), pictured above, were both diagnosed with homocystinuria when they were two and a half years and 12 months old respectively.
Homocystinuria is a rare genetic disorder that affects one in every 200,000 people. This means that Fiona and Laura have problems with their eye sight and bones, as well as increased risk of blood clots.A life-long diesease, the girls control their condition through weekly blood tests, medication and a strict protein-controlled diet.
Their mum Carol said: "Living with homocystinuria has been extremely challenging, but the care and treat we have received at Birmingham Children's Hospital has been second to none. The introduction of a Roald Dahl Nurse to help with the psychological support for children and families will be a fantastic benefit, as there is often few other families to share experiences with."
We expect that the recruitment for this role will begin in the summer for an autumn start in 2015.