Thousands of children are living with epilepsy and many can be seizure-free with the right treatment, removing much of the anxiety and psychological issues associated with the condition, and reducing the risk of further injury, even death in the most extreme cases.
Better support, closer to home
Specialist neurology care is available in hospitals in large urban centres but often at some distance from a child’s home or community. With better services in local hospital and community settings, children and their families can be better supported, saving unnecessary visits to hospital, reducing the length of time spent on hospital wards, and helping to improve their outcomes.
When the Foundation Healthcare Group vanguard was launched by NHS England as part of the New Care Models programme, the Paediatrics clinical faculty at Dartford and Gravesham NHS Trust in Kent, led by Dr Alok Gupta, identified neurology as a key area for improvement.
Many children with epilepsy in Dartford and Gravesham were being referred to the Evelina London Children’s Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust. The Foundation Healthcare Group was a partnership with the two trusts.
I took on a post, funded by the vanguard programme, to establish a neurology/epilepsy service at Darent Valley Hospital.
From the outset, I recognised there was a clear gap between care delivered at Evelina and Dartford and Gravesham, particularly in providing a seamless input between professionals at both setting. In the last year we have worked to develop a team and Paediatric Epilepsy and Neurology Services (PENS) to bridge this gap and enhance patient experience and outcomes.
A decision was taken to recruit an epilepsy specialist nurse. However, Dartford and Gravesham is not alone in finding it difficult to recruit to these posts.
Collaborating with the charity sector
I came up with an innovative solution by reaching out to Roald Dahl’s Marvellous Children’s Charity . The CEO of the charity, Jane Miles, came to visit the team at Darent Valley Hospital.
The charity then agreed to fund an Epilepsy Specialist Nurse for two years, with guaranteed funding for a further three years from the Trust. Emily Bell started in her position as the first Roald Dahl Specialist Nurse in Kent last July.
Roald Dahl Specialist Children’s Nurses are highly trained and support patients and their families on a broad range of medical, emotional and social challenges, while coordinating services in the community and in schools. Emily helps to ensure that the best possible care is being provided, helping other health professionals to understand specialist care needs and how best to support young people.
Emily says: “The feedback from parents and families has been hugely positive. They are particularly pleased that they can access more services closer to home and, if they have to travel into London, they feel reassured that more support is available when they return to the community.”
Local hospital protocols and clinical pathways are now established in Darent Valley Hospital. In the last 12 months, the service has expanded to include clinical psychologist Millie Harkin and support worker Roxanne Holmes. Deborah Whittlesea is the team’s secretary. They are also supported by the hospital dietician Sukhi Kaur and paediatric pharmacist Ellen Kanyanta.
Care built around the individual
They also have the luxury of Joint Neurology Clinics in which Dr Kaminska, Paediatric Neurologist from Guy’s and St Thomas’, holds clinics at Darent Valley Hospital. She provides exceptional support to Chinwe and the team, which is making is possible to deliver a service close to home of patients – while also maximising efficiency by improving the patients’ experience and outcomes.
Patients enjoy a unique ability to access their professionals at these various settings and have been active participants in developing the service. Now the team holds a regular support group session and raises awareness and service profiling on social media.
The vanguard model has had a positive impact on team spirit and raised the profile of epilepsy and neurology within the paediatrics department. It has given us a real platform to redesign our services and demonstrates that closer collaboration can work – without the need for major reconfiguration of services and management change across hospitals and communities.