Epilepsy Paediatric Teams

‘Patients Know Best’ & ‘NHS App’ enabled SFH Epilepsies Service


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.


The opportunity

2015, Previous Peterborough PKB epilepsy experience 2020, Patients Knows Best (PKB) chosen Patient Held Record Supplier by ‘Connected Nottinghamshire’ to allow enhanced digital capability via the NHSApp 2021, Widespread NHS App usage increased by COVID Pass usage

2021, Luton and Dunstable Epilepsy PKB pilot.

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

Getting ready

  • Connected Notts support

  • PKB support

  • Professional User Team

  • Parent rep

  • IG/Risk assessment

  • Benefits and impact plan


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

Next steps

• Bulk invites?

• Impact and benefits assessment

• Adapting and adopting new features – Consultation forms switched on – Library extended – ‘All about me’ care plan – Digital clinical letters

• National alignment

What do I think so far?

• Changes centre of gravity – brings health information to reside with the person

• Changes the rhythm –real-time, in between appointments, not in health locations

• Changes the ways to connect – direct, automated, retained, shared