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Important new paper on care pathways is published

Above: Professor Mike Kerr, SUDEP Action vice-chair 

A new paper, looking at care pathways for those with epilepsy and intellectual disabilities, has been published in leading British medical journals.

‘Epilepsy, intellectual disability and the epilepsy care pathway: improving outcomes’ shows what ‘good’ looks likes from the first epilepsy diagnosis. The paper was written by Professor Mike Kerr, winner of an ILAE lifetime achievement award for epilepsy and SUDEP Action vice-chair, along with specialist nurse Geraldine Goodwin and SUDEP Action CEO Jane Hanna.

The paper focuses on the importance of providing information, empowerment, access to care, assessment of risk and support. The association between epilepsy and intellectual disability means that psychiatric teams, and the services they exist in, also have a need for significant competencies in the field of epilepsy.

Here, the integration of technology is playing an increasingly important role, so that the future psychiatrist will need to be adept in understanding technological options and how they can support their use in this complex patient care.

SUDEP Action is leading the way on the technological front with its EpSMon app, which communicates risk of sudden unexpected death in epilepsy (SUDEP) in a person-centred and holistic way. The EpSMon app is a digital version of the SUDEP and

Seizure Safety Checklist, an evidence-based tool which supports clinicians when discussing epilepsy risk with patients. The Checklist was also developed by SUDEP Action and the Cornwall Partnership NHS Foundation Trust.

EpSMon currently has around 4,500 registered users and encourages self-monitoring of seizure risk over time, helping individuals to identify when to seek medical help. The personalised information they record on the app is a support tool in conversations with professionals and can be used in decision-making and delivery of their care.

Recent research identified that 99.8% of EpSMon users found they had risks present and 21% of users had received no clinical support for their epilepsy in the previous 12 months. Of those receiving regular support, 30% had seen an epilepsy specialist and 56% had seen a general practitioner in the previous 12 months.

Read the paper in full here