Access to Clinical Services for Children and Young People (CYP) with Epilepsy and Their Families
All services reported access to a Clinical Nurse Specialist (CNS), whose key role is to support families following a new diagnosis and during ongoing management of epilepsy. Survey findings highlighted increasing workloads across clinical services, with growing demand on CNSs and doctors with a special interest in epilepsy. This pressure is intensified by the complexity of need, as many CYP with epilepsy also have significant physical and/or learning disabilities.
Variation in care for newly diagnosed patients led the STPN to prioritise standardisation of First Seizure Clinic pathways. A joint workshop with SETPEG and SIPEG clinical groups in September 2023 supported services to:
Standardising these pathways across the region will help ensure timely, coordinated and equitable care from diagnosis through ongoing management.
A critical step in addressing variations in care is the mapping of patient pathways for those with epilepsy. The STPN has worked to differentiate between ‘simple’ epilepsy (such as well-controlled focal seizures) and complex conditions (including treatment-resistant epilepsy and associated comorbidities, where for example a patient could have over 100 seizures per day). In collaboration with South West London ICB, a detailed pathway was mapped for a patient with complex epilepsy. This demonstrated the need for improved coordination of care across healthcare, education and social care. There is a need for a well co-ordinated MDT approach as the young person was under the care of over 15 different disciplines across multiple hospital sites. The psychological burden on the families was also highlighted. This differentiation allows for the creation of more tailored care plans, ensuring that patients with complex epilepsy are provided a more personalised approach to their care.
The STPN completed an audit of 23 care plans which identified discrepancies in the content, length and structure of the plans across different services, which could lead to inconsistent care. Lack of sharing of the plans between different healthcare professionals leads to out-of-date information on systems, duplication, miscommunication and poorer patient experience. A South West London audit of the information held within 23 local EHCPs also found variability in the content of the care plans. Lack of information in the care plans highlighted that communication between clinical and SEND teams resulted in both services not having the most up to date and comprehensive information to inform decision making regarding health and/or education.
As a result, recommendations have been made for the standardisation of care plan content, ensuring that all care plans meet a set of core requirements that reflect best practice. This will help to ensure that care is consistent, comprehensive, and accessible for all children with epilepsy.
The STPN, together with North Thames Paediatric Network, were members of the London Universal Care Plan Programme Oversight Group (UCP). Epilepsy was chosen as a pilot pathway for children. The networks worked to create standardised system-wide emergency metrics which will be accessible to all healthcare professionals including school nurses, Epilepsy Nurse Specialists, consultants and Emergency Departments across London. The care plans also included details regarding transition into adult services. The launch of the UCP is expected during 2025/26.
The STPN and North Thames Paediatric Network contributed to the London Universal Care Plan (UCP) Programme Oversight Group. Epilepsy was selected as a pilot pathway, with system-wide emergency metrics designed for access by healthcare professionals across settings, including schools and emergency departments. The UCP includes transition planning into adult services, with launch expected in 2025/26.
STPN surveys identified variation in access to key diagnostic investigations, including MRI, EEG and sleep studies. These investigations are essential for accurate diagnosis and effective management of epilepsy. The network is working to standardise access, reducing delays and ensuring a more consistent diagnostic journey for CYP across the region.
Digital solutions play an increasing role in improving access to care. The STPN has supported and linked with a range of initiatives, including:
CYP and families have been actively involved in shaping these developments, reporting positive feedback.
A London Epilepsy Guide for Schools was written by the Healthy London Partnership in 2017 (ADD LINK). The guide was updated by STPN and North Thames Paediatric Network in May 2024 as a general guide for schools as the guidance is universal. This brief and concise document is intended to enable schools to support children and young people with epilepsy effectively in an early years or school setting. Professionals supporting children and young people (CYP) with epilepsy in a variety of settings may find this a useful resource.
STPN | Improving equity, access and outcomes for Children and Young People with Epilepsy