CHILDREN’S health charity, Roald Dahl’s Marvellous Children’s Charity, has highlighted the need to fund more specialist nursing posts in the NHS to support children with epilepsy and other complex lifelong illnesses.
There are an estimated 112,000 children and young people diagnosed with epilepsy in the UK, although almost 25,000 (over one in five) do not have any input from an epilepsy specialist nurse.
Research has shown that specialist nursing can improve patient safety and health outcomes, as well as deliver significant emotional benefits to families. The role includes organising and co-ordinating tests, treatment, and care in a way that has the least negative impact on their patients’ quality of life, plus providing advice and education to affected families.
Louise Griew, CEO at Roald Dahl’s Marvellous Children’s Charity, said:
“Too many seriously ill children and young people – particularly those experiencing epilepsy – do not have access to a specialist nurse in the UK. We want to change this.
“We’re encouraging people to #DoSomethingMarvellous and help us fund a new specialist nursing post in the NHS. This will provide a vital lifeline to hundreds of seriously ill children and families, supporting them both clinically and emotionally.”
Since 1992, the charity has worked in partnership with the NHS to establish a network of over 40 epilepsy specialist nursing posts. The first was held by Anne Sweeny at Alder Hey Children’s Hospital in Liverpool, who was a Roald Dahl specialist nurse for over 23 years.
“I loved being a Roald Dahl nurse because I could be there for families – providing support, giving advice and being a point of contact to explain things. I also provided epilepsy training on the recognition and management of seizures for all those involved with the child, including schools and nurseries. This gives the family more confidence to allow the child to live as normal a life as possible.”
A recent study by Sheffield Hallam University found that Roald Dahl specialist nurses, regardless of their speciality, location, organisation or service focus, have a ‘profoundly positive impact’ on patients, their families and other stakeholders around them.
Do Something Marvellous and help fund a new children’s nurse. Give a vital lifeline to seriously ill children and their families. Please donate by visiting: www.roalddahlcharity.org/marvellous.