Sussex children and young people's epilepsy services
Epilepsy is one of the most common significant long-term neurological conditions of childhood and affects around 112,000 children and young people in the UK. Epilepsy can have a significant impact on a child or young person’s life, including socially, educationally and behaviourally.
Good management of epilepsy improves health outcomes, can reduce urgent admissions to hospital, and can also help to minimise the impacts on other areas of a child or young person’s life.
In October 2023, NHS England launched a new ‘bundle of care’ for children and young people’s epilepsy services setting out standards that all young people and their families should expect in their experience of care services.
The new recommendations focus on four key areas of improvement for children and young people’s epilepsy care, including:
• Addressing the regional variation in care between epilepsy services
• Increasing access to mental health checks and support
• Improving transition from paediatric to adult epilepsy services
• Improving referrals for epilepsy surgery and other specialist services
Epilepsy is also one of the five clinical areas of focus in NHS England’s ‘Core20PLUS5’ approach to reducing health inequalities for children and young people.
The two main aims are:
• Increase access to epilepsy specialist nurses for children and young people within the most deprived 20% of the population
• Increase access to epilepsy specialist nurses for children and young people with a learning disability or autism within the first year of care.
The Children and Young People’s Physical Health Team at NHS Sussex Integrated Care Board is reviewing these recommendations and is working with epilepsy service providers to put together a local improvement plan and enhance the epilepsy service offered. NHS Sussex would like to get feedback from local children and young people who use epilepsy services across Sussex and their parent/carers, to help us prioritise what to focus on and then to shape our plan.
