A charity that oversees the creation and coordination of specialist children’s nursing posts around the UK has been given more than £100,000 to boost nurse numbers.
The Alexion Charitable Foundation, a non-profit offshoot of AstraZeneca Rare Disease, announced this week that it would be giving the substantial grant to Roald Dahl’s Marvellous Children’s Charity.
“Every family deserves to access the specialist care and support they need”
Louise Griew
The charity, via its Roald Dahl nurse programme, raises money to fund clinical nurse specialist posts to support children with serious illness and rare diseases at hospitals across the UK for the first two years.
The programme mandates that the employers then fund the post for a further three years. The charity has previously told Nursing Times that the posts then typically persist beyond this.
Ultimately, the scheme aims to improve access for seriously ill children and their families to the specialist nurses, who can help them to navigate the complex health system.
Louise Griew, chief executive of the Roald Dahl charity, thanked Alexion for its donation and said it would help to further establish the CMC nurse specialist role.
“Every child deserves the opportunity to experience the best childhood possible, and every family deserves to access the specialist care and support they need to provide that,” said Ms Griew.
“But achieving that is a constant battle for too many seriously ill children with rare and complex health conditions across the UK,” she said.
“We know the impact of living with a serious, rare or complex condition goes far beyond the medical diagnosis,” said Ms Griew.
“It has broad-reaching implications on the child’s life and education and affects the physical and mental health of families and care givers, too.”
Explaining further the value of the posts, which will be funded by the Alexion grant, Ms Griew added: “Our mission goes beyond just expert clinical care.
“We also provide the emotional and practical support that empowers families to navigate their journey more confidently.
“Families tell us every day that the support they receive transforms their life. They know we couldn’t do this without the support of our partners and grant bodies like the Alexion Charitable Foundation.”
