Publish date: 8 June 2022

Tameside and Glossop Integrated Care NHS Foundation Trust has secured funding for a Roald Dahl Specialist Epilepsy transition post, following a competitive application process, out of 35 other NHS organisations.

The post will provide much needed support to children and young people with epilepsy among the populations in Tameside and Glossop.

The Trust estimates that there is around 150 children and young people transitioning to adult services, who currently describe this time as a period of uncertainty.  This post will allow the Trust to support, educate and build confidence in both young people and their families.

The Trust submitted the application to be leaders in this area and also support the Epilepsy Team to be compliant with NICE guidance and give children, young people and families the best start in their journey into adulthood.

Roald Dahl’s Marvellous Children’s Charity and Tameside and Glossop Integrated Care NHS Foundation Trust are partnering for five years to share the cost of the specialist nurse appointment, with recruitment to the new post already underway. 

The new nurse will work within the Trust’s Epilepsy Team, working closely with GP surgeries, social care, schools/colleges and adult neurology services across the locality. The nurse will continue to stitch health services around the family, delivering crucial personalised, integrated care to those families most in need.

Peter Weller, the Trust’s Executive Director of Nursing said: “I’m very proud that we have been successful in securing this funding. Our new Roald Dahl Specialist Nurse will help us to deliver better care to children and young people with epilepsy across Tameside and Glossop.

“Our aim is that a Roald Dahl Specialist Nurse will help us support young people and adults up to the age of 25. They would work closely with the adult neurologists, so there is continuity of health professional care providing developmentally appropriate education and information and support to build young people’s confidence in managing their condition and in preparing them for adulthood.”

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. The position really does exhibit”

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 integrated NHS trust will directly impact many of those children and young people.