Written Question · S4W-02368 · Session 4
What action it will take to implement the recommendations set out in Sheriff Duff’s fatal accident inquiry report on the sudden epilepsy-re…
The question
To ask the Scottish Executive what action it will take to implement the recommendations set out in Sheriff Duff’s fatal accident inquiry report on the sudden epilepsy-related deaths of two teenagers.
The answer
We deeply regret the tragic deaths of Erin Casey and Christina Llia and recognise that measures should be put in place to minimise the risk of Sudden Unexpected Death in Epilepsy (SUDEP). We are currently working with clinicians, pharmacists, Epilepsy Scotland, the Association of Chief Polices Officers in Scotland (ACPOS) and Healthcare Improvement Scotland to take forward the recommendations from the Fatal Accident Inquiry report.
For example, the Scottish Intercollegiate Guidelines Network (SIGN) has produced two guidelines on epilepsy, one for adults and one for children and young people. Both guidelines state that SUDEP should be discussed with patients and if appropriate, their parents or carers as soon as possible after diagnosis. We expect clinicians to follow these guidelines.
SIGN has confirmed that SIGN 70 on the diagnosis and management of epilepsy in adults is due for review next year. As part of that process, SIGN will review the available evidence on information giving on SUDEP.
We have also agreed also to provide Epilepsy Scotland with funding to conduct research into the information needs of people with epilepsy regarding SUDEP. The research aims to identify at what point post-diagnosis, individuals would prefer to receive information on SUDEP, in what form and by whom. The findings of the research will help support healthcare professionals in the vital process of sharing information with people at risk of SUDEP.
In addition, the Association of Chief Police Officers in Scotland (ACPOS) has confirmed that they will make changes to their probationer training in light of the recommendations from the FAI report.
For example, the Scottish Intercollegiate Guidelines Network (SIGN) has produced two guidelines on epilepsy, one for adults and one for children and young people. Both guidelines state that SUDEP should be discussed with patients and if appropriate, their parents or carers as soon as possible after diagnosis. We expect clinicians to follow these guidelines.
SIGN has confirmed that SIGN 70 on the diagnosis and management of epilepsy in adults is due for review next year. As part of that process, SIGN will review the available evidence on information giving on SUDEP.
We have also agreed also to provide Epilepsy Scotland with funding to conduct research into the information needs of people with epilepsy regarding SUDEP. The research aims to identify at what point post-diagnosis, individuals would prefer to receive information on SUDEP, in what form and by whom. The findings of the research will help support healthcare professionals in the vital process of sharing information with people at risk of SUDEP.
In addition, the Association of Chief Police Officers in Scotland (ACPOS) has confirmed that they will make changes to their probationer training in light of the recommendations from the FAI report.
In the Official Report
No contribution in the Official Report cites S4W-02368 by reference.