Epilepsy Clinical Lead (DGH)
Dr Chinwe Ude
Dr Ude is a Consultant Paediatrician with a Special Interest in Epilepsy at Darent Valley Hospital, the Clinical Lead for Paediatric Epilepsy for the past six years after building the service, the Trust Lead for the National Epilepsy12 Audit and a member of the South East Thames Paediatric Epilepsy Group (SETPEG)
Epilepsy Clinical Lead (Tertiary)
Dr Elaine Hughes
Dr Hughes is a Consultant Paediatric Neurologist specialising in complex Epilepsy based at Evelina Children’s Hospital & King’s College Hospital, Chair of SETPEG, Lead for Regional Paediatric Epilepsy Services & Surgery and a member of Children Epilepsy Surgery Service National Steering Group.
In early 2022, as part of the National Bundles of Care for Epilepsy programme, the STPN received funding from NHSE London and NHSE South East commissioners to establish a workstream focused on improving the care for Children, Young People and their families. The programme ran until the end of March 2025 when funding was discontinued.
We are grateful for the support from our clinical leads who were appointed to support our work: Dr Elaine Hughes (Clinical Lead for Tertiary Care), Dr Chinwe Ude and Dr Charlie Moss (Clinical Leads for Secondary Care) and Lynn Keen and Florence Kennard (Clinical Nurse Specialists).
We also worked in close collaboration with South East Thames Paediatric Epilepsy Group (SETPEG Home | South East Thames Paediatric Epilepsy Group ) and SIPEG/Southwest Thames Paediatric Epilepsy Network (The Southwest Thames Paediatric Epilepsy Network (SWTPEN) – St George’s University Hospitals NHS Foundation Trust).
The programme focused on the 4 key pillars as shown below.
Bundles of Care Pillars (NHS England » National bundle of care for children and young people with epilepsy)
Continuity of care during the Transition process
Mental Health provision within epilepsy clinics
Pathway to epilepsy surgery & specialty neurological care
Access to Epilepsy Specialist Nurses
The STPN completed two surveys, one in 2023, as a scoping exercise to understand the services that were available and a second survey in late 2024/early 2025 to benchmark change.
The data is available per Trust, per Integrated Care Board (ICB) and across the network on request. We thank all the clinical teams for providing us with the detailed information and for their engagement in the programme. Overall, this focus on Epilepsy enabled the needs of these CYP and their families to be highlighted and recognised as a significant long term condition on par with Diabetes and Asthma. It is disappointing that further funding did not become available to ensure that further work could be completed but we hope that improvements have been implemented over the duration of the workstream.
Key links and documents: Burdett National Transition Nursing Network and the STPN Collaboration QI webinar series and associated supporting documents and transition tools
Useful links:
STPN | Improving equity, access and outcomes for Children and Young People with Epilepsy