Colin Dunkley an SFH Consultant Paediatrician from Sherwood Forest Hospital (SFH) started using PKB in 2021 as part of his role as implementing ‘best practice epilepsy services’. He's current NHSE digital project developing open-source epilepsy data interoperability solutions.
Patient view
About Epilepsy
1 in 200 children
Seizures 5% of ED and 5% of outpatient attendances
Average child 2.7 visits/year • 2/3 do well and ‘grow out of their epilepsy’ • ~50% have learning difficulties or disability, 30% have mental health difficulties
Priority long term condition within NHS plan
SFH Epilepsy service
Small core team
2 consultant paediatricians, 1 specialist nurse, 1 PPC
2 epilepsy clinics per week
250 children
Choosing to stay 50% ‘virtual’ via Attend Anywhere
Much activity in between ‘care episodes’: WhatsApp,
email, mobile
A service if ‘contactable’, is 20x more likely to be positively experienced (Seizure, 2018)
Epilepsy challenges to solve
Unpredictable and not ‘one size fits all’
Video vital to diagnosis (sensitive, large file size, already on patient’s phones)
Need complex drug changes with consistency between patient, hospital, school, GP
Need dynamic individualised care planning for home and education
Easy to go wrong with unnecessary ED attendances, drug errors, SUDEP, misdiagnosis
Initial plan within the existing ICS contract
Build a 2 team
‘seizure’ and ‘epilepsy’ PKB solution
Initially SFH only
Basic build to get live
Agile improve, bolt-on and scale
Capture benefits
Invite Process
Children with epilepsy now have
Secure 2-way direct messaging with the epilepsy team retained within shared health record
Secure video submission
Repository for individualised patient information and care plans
Service wide customised library of resources
Seizure and symptom diaries
Automated appointment diary with Attend Anywhere links
Digital transition toward independence
Clinical pathway
Share information digitally instantly
In between clinics team receive an email alert
Can look in PKB and see messages and reply
Can manage messages across the team, triage the info and decide who best in the team to help
See their whole record as is useful
Usage Stats
Further information
Epilepsy care plan template examples: three examples of care plans used by epilepsy pediatric teams
Paediatric Epilepsy teams using PKB: the benefits and features they use