BBC News report on the challenges faced by parents of seriously ill children

The BBC’s timely article on the challenges faced by parents of seriously ill children coincides with our appeal to raise £1million to establish eight new Roald Dahl Nurses to care specifically for children with medical complexity (CMC). As highlighted by the BBC, the gap in care provision for these children, and their families, needs urgent attention and, working with the NHS, our appeal is set to be part of the solution to this very real challenge.    Children with medical complexity have multiple devastating conditions, often rare or even undiagnosed, requiring specialist care from numerous consultants, hospitals and health professionals. This leads to fragmented, inconsistent, and uncoordinated care, putting immense pressure on parents, as one mum explains, “I’m not just a mum looking after a child, I have to be a doctor, a nurse, a physiotherapist, every person.”   Medical advancements mean that these children are living longer, so the need for specialist care is growing. However, recent research* undertaken by Professor Lorna Fraser of Kings College London identified that many tertiary children’s hospitals in the UK do not have specific services for children with medical complexity. The research also found that Paediatric services have the opportunity to redesign training to ensure holistic care and dedicated coordination are part of their practice, with one clinician commenting, "If you wanted a gold standard service… you’d want a specialist nurse."   Roald Dahl’s Marvellous Children’s Charity works in partnership with the NHS to establish specialist nurses to care for seriously ill children across the UK. Roald Dahl Nurses reduce pressure on the NHS by minimising the need for A&E visits, hospital appointments and consultant appointments. One consultant paediatrician said, “Care will be transformed by the presence and expertise of a Roald Dahl Nurse Specialist for CMC. Their dedicated ability to coordinate, liaise, support and educate teams about the unique needs of these children will be life-changing for them and their families.”   To find out more about our appeal or to donate towards funding a Roald Dahl CMC Nurse, please visit our appeal page. *Provision of care for children with medical complexity in tertiary hospitals in England: qualitative interviews with health professionals. Emma Victoria McLorie, Lorna Fraser, Julie Hackett.