The Child Health and Wellbeing Network (CHWN) has a role in the delivery of the Children and Young Person’s Transformation Agenda. Improvement for services for Children and Young People (CYP) with long term conditions, including epilepsy, is a key area of priority and there are a number of associated key deliverables.  Since April 2022, Dr Ramesh Kumar has been appointed the Clinical Lead to the North East and North Cumbria CHWN in relation to the Epilepsy programme of work. Prior to this, in addition to the clinical advice by Dr Kumar, we have benefitted greatly from clinical input from Dr Anita Devlin, who since April 22 has been appointed in the role of NEY Regional Clinical Lead for Epilepsy. 

This piece of work is the first of its kind in England and Wales and as such represents a positive step forward in relation to improvements to paediatric epilepsy care in the North East and North Cumbria (NENC). This improvement programme of work includes two projects that have run simultaneously:

Project 1

This project focusses on the referral pathways and access to tertiary services/surgery, transition, and variation in care based on the analysis of the Epilepsy 12 indicators and soft intelligence gathered from each of the NHS Foundation Trusts in the NENC footprint, led by Dr Ramesh Kumar, Consultant Paediatrician.

Project 2

This project focusses specifically on the availability of mental health and psychology support for CYP with epilepsy which is identified as an area for improvement nationally, led by Dr Anita Devlin, Consultant Paediatric Neurologist.

These projects have only been possible in the first instance due to the resource commitment of the NENC Integrated Care System (ICS) Child Health and Wellbeing Network. They represent an example of close collaboration between primary, secondary and tertiary care and also the inclusion and involvement of wider stakeholders, including education partners. They bring together information from a wide range of stakeholders, collected in a multitude of ways as well as data from various sources, primarily the Epilepsy 12 Round 3 Cohort 2 dataset which forms an integral part of this programme of work.


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