South Warwickshire NHS trust wins children’s nurse funding

South Warwickshire NHS Foundation Trust has been selected out of 35 other NHS organisations for charity funding to employ its first Roald Dahl Specialist Nurse. The post will provide much needed support to children and young people with epilepsy across South Warwickshire.

The Trust estimates that there could be approximately 612 families who have children and young people living with epilepsy in the region who, without specialist support, would struggle to get the health and social care support they need.

Roald Dahl’s Marvellous Children’s Charity and South Warwickshire NHS Foundation Trust are partnering for five years to share the cost of the specialist nurse appointment, with recruitment to the new post starting this summer.

The new nurse will work within the Trust’s epilepsy team, working across its four hospitals. They will work closely with GP surgeries, social care and schools across the region. The nurse will continue to stitch health services around the family, delivering crucial personalised care to those families most in need.

Ellie Ward, the Trust’s Deputy Director of Nursing said: “SWFT is delighted to be able to support this role and enhance the service we deliver to our young population living with epilepsy. This valuable position will support families, providing navigation and person centred support in line with our organisational values and our aspiration to address inequalities through their providing expert liaison between services.”

The management of Children and Young People with epilepsy is complex and requires strong partnerships to deliver the best quality of care to those with this chronic health condition. The evidence from national audits, research and national guidelines suggests that the need for an Epilepsy Specialist Nurse is vital to supporting the optimum delivery of services. SWFT currently offers consultant-led epilepsy service in both Community and Acute settings. However, particularly in light of the pandemic, we see aspects of care particularly psychosocial a liaison that is overlooked and gaps in care provision. This is where the expertise of an Epilepsy Specialist Nurse would bridge, complement, and improve the care provided to patients.

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 Warwickshire 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 supoprt 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.

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