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  • Writer's pictureKenneth Gibson MSP

Working towards a Scottish Epilepsy Register

The NHS Greater Glasgow & Clyde: Scottish Epilepsy Register uses routine health data to improve the care of people in Scotland living with epilepsy.

This clinical platform, which is expected to come to NHS Ayrshire & Arran this winter, quickly alerts healthcare professionals to a ‘key event’ experienced by the patient.

The Scottish Epilepsy Register, funded through the SNP Government’s 2020 – 2025 Neurological Support Framework, is focussed on improving data collection and patient safety.

Amongst other initiatives that received SNP Government funding were NHS Ayrshire & Arran’s joint projects working on a Psychogenic Non-Epileptic Seizures SelfManagement App (£42,533); and two projects on Neurology Specific Principles of Good Transition (£19,628 and £6,800).

The Epilepsy Register allows researchers to:

  • Identify women with epilepsy at a time of booking during pregnancy, ensuring timely review and support, as there can be pregnancy-related risks regarding the condition and its treatment. All women are contacted shortly after booking (prior to this, 30% of women were never seen during pregnancy)

  • Evaluate adherence to anti-seizure medication using the novel MAVIS app. Applying this to women with epilepsy during pregnancy identified more than 50% had stopped their medication prior to booking. This allows healthcare professionals to discuss with women the importance of medication during pregnancy and the risk of untreated epilepsy

  • Identify the frequent use of unscheduled care and hospital admissions by people with epilepsy, and target care to those at greatest risk of harm. –

  • Identify serious adverse events, including death, allowing healthcare professionals to support next of kin in a timely manner.

Kenneth Gibson MSP, member and former Convener of the Scottish Parliament’ds Cross-Party Group on Epilepsy, said:

“Epilepsy is one of the most serious neurological conditions in the world and affects around 55,000 people in Scotland.

“An SNP Government’s priority for the next three years is the continued roll out of Scottish Epilepsy Register to improve patient safety and assess the potential use of this approach for other neuro conditions.

“It is anticipated that this healthcare improvement project will be shared with NHS Ayrshire & Arran within the next 6-9 months, and people across North Ayrshire will be able to contribute to data and benefit from better informed treatment.”

The platform is aimed to be a primer to create a comprehensive Scottish Epilepsy Register.

The SNP Government’s 2020 – 2025 Neurological Support Framework mid-term report can be read here.

For more information and support if you have epilepsy, phone Epilepsy Scotland (free) on 0808 800 2200 or visit their website.



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