Epilepsy Scotland is very supportive of this register. We believe it will improve knowledge about epilepsy and drive better standards of care.
Dr Craig Heath and colleagues have already produced some interesting research from the register.
Well known to have poor outcomes are addiction and epilepsy.
An individual with epilepsy who has an addiction is 25 times more likely to die compared to the general population.
Epilepsy and methadone
Dr Heath and colleagues wanted to understand if epilepsy or its care contributes to mortality.
Their research analysed mortality rates in people with epilepsy who are also taking methadone.
The sample for the research was first identified through the register pilot. The clinicians then identified those on methadone by using methadone dispensing data.
The aim of the study was to compare mortality rates in people with epilepsy who are also taking methadone compared to the general epilepsy population.
The study also noted anticonvulsant medication (AED) adherence. As well as engagement with epilepsy services.
The study found that one in twenty people who attend an epilepsy clinic take methadone. Dr Heath said this is an underestimation as the figure is based on those who attend clinic.
The clinicians found that if someone has epilepsy and takes methadone, they are four times more likely to die than those who have epilepsy alone.
This population are much less likely to engage with neurology services. Despite attending a pharmacy every day for their methadone, one third do not take their medication.
Additionally, despite attending a pharmacy every day for their methadone, one third do not take their medication.
What can be done?
One key recommendation from the study is to maximise the contact this population has with community pharmacists.
The clinicians suggest that when a person is receiving their methadone, they should also be dispensed their AEDs.
This should increase adherence and possibly lower the mortality rate in this population.
The research conducted by Dr Heath and colleagues is evidence of why the epilepsy register has to be rolled out across NHS Scotland.
The clinicians have broadened knowledge about people with epilepsy who take methadone, which has helped them to make a simple suggestion in how this population are treated. This might then reduce the significant mortality rate.
Epilepsy Scotland is excited to see further research produced from this register.
Our policy team are continuing to work with the clinicians and MSPs to support national roll out of the epilepsy register.