Sandwell and West Birmingham NHS Trust has won charity funding to employ its first Roald Dahl specialist nurse who will support youngsters with epilepsy.
The organisation which runs Sandwell, City and Rowley Regis Hospitals, competed against 35 other healthcare organisations to secure the funding.
The role of the transition nurse specialist will help to improve the support young people receive so their move from paediatric to adult services runs smoothly. They will provide dedicated care with a holistic approach.
Working within the Trust’s paediatric epilepsy service, alongside an existing children’s epilepsy community nurse, the transition specialist will also work closely with GP surgeries, social care and schools across the region.
The nurse will continue to bring together health services around the family, delivering crucial personalised care to those most in need.
The Trust estimates that there are approximately 600 families who have children and young people living with epilepsy in Sandwell and West Birmingham who will benefit from the health and social care support the nurse will provide.
Roald Dahl’s Marvellous Children’s Charity and the Trust are partnering for five years to share the cost of the specialist nurse appointment, with recruitment to the new post starting this summer.
Mel Roberts, Chief Nursing Officer, said: “We are delighted to have won funding for this specialist role. The Trust is committed to delivering the best care possible, whether that’s in our community or in our hospitals. This role will ensure that we are able to reach those who need this support as they live with this illness.”
Michelle Kukielka, Head of Programmes at the Charity and herself a former nurse, said: “The opportunity to work with the Trust is extremely exciting but we must continue to drive awareness and fundraising – it’s integral. Roald Dahl Specialist Nurses have a huge impact on patients’ lives so being able to help many more seriously-ill children locally is amazing.”
“There is so much more to do and we need the public’s help to do it. If people would like to donate to the charity, they can be reassured that all donations go directly to funding more specialist nurses – so every penny literally counts for seriously ill children and young people.”
The charity estimates that more than 100,000 children would benefit from having a specialist nurse for a range of rare and under-resourced diseases across the UK. This includes epilepsy. The new post at the Trust will directly impact many of those children and young people.
All Roald Dahl Specialist Nurses are employed by the NHS, providing an essential link between GPs and schools, hospitals, social support and also specialist healthcare settings. This bridge between the sectors is particularly crucial for teenagers with epilepsy who are transitioning from paediatric to adult services as often these do not ‘map on’ to each other around the patient.
Roald Dahl Marvellous Children’s Charity has funded over 80 Roald Dahl Specialist Nurses who treat 24,000 seriously ill children and young people in the UK.