Our Interim Policy and Communications Manager, Rona Johnson, provides information on our number one election ask for the next Scottish Government and MSPs elected, which is to have an National Epilepsy Database to help improve epilepsy care in Scotland.
Approximately 55,000 people in Scotland are living with epilepsy, making it one of the most common chronic neurological disorders.
More people have epilepsy in Scotland than those with Multiple Sclerosis, Parkinson’s, Cerebral Palsy and HIV combined.
Epilepsy can have a significant impact on a person’s life, reduced independence, issues with memory, isolation, poorer mental health, as well as the physical trauma of seizures.
The risk of death in those with the condition is also significantly greater than the general population.
However, there is very little data collected nationally on epilepsy in Scotland.
The need for a national epilepsy database
This lack of data significantly restricts knowledge about epilepsy in Scotland which hampers improvements to care and medicines.
If there was a national epilepsy database, we could better understand how the condition presents in Scotland.
This would allow for better service planning and ensure equity of access to good standards of care across the country.
The database will also offer the opportunity to better understand epilepsy medicines and encourage more research into finding better treatment options.
We know some epilepsy drugs have significant side effects for some people which can dramatically impact their quality of life.
The database can only prompt more research into treatment options and find therapies which have the least amount of side effects for the individual.
The epilepsy database
There is currently an epilepsy database pilot running in NHS Greater Glasgow and Clyde and NHS Tayside. This has created a validated register of almost 8000 people with epilepsy in these health boards.
This database is linked to other pre-existing routine health datasets. Therefore, the register not only provides important epidemiological information but is also improving the care of people with epilepsy.
The system is not a traditional register which simply lists patients. It is an active platform which alerts clinicians, in real time, of adverse events relating to their patients.
The register is linked to national dispensing data and to Badgernet, the national obstetric dataset. When fully operational, clinicians can be alerted if their patient:
- Has been admitted to hospital, giving clinicians the opportunity to quickly intervene and improve care.
- Is not compliant with their medication, allowing clinicians to support specific patients to better self-manage their condition and reduce outcomes of non-compliance e.g. excess emergency admissions, wasted prescriptions and death.
- Is pregnant, allowing clinicians to ensure women receive appropriate epilepsy care during their pregnancy and mitigate the risks of sodium valproate and other teratogenic medicines.
- This system is key to ensure Cumberlege’s recommendations are properly implemented and no more avoidable harm is felt by women with epilepsy.
- Has died, allowing clinicians to offer better support to families and identify areas to improve clinical care.
Benefits of the epilepsy database
Other health registers have proved to be key in improving knowledge of conditions e.g. the Multiple Sclerosis register showed that people in Orkney were three times as likely to have MS compared to those in the Borders.
The developing epilepsy database has all the benefits of other health registers – improved understanding about epidemiology, building a platform which encourages research.
However, it also creates an active infrastructure to make real time improvements in care for patients. This system is not condition specific and could be used in other health conditions.
Epilepsy Scotland’s 2021 number one election ask
We believe this epilepsy database is the key to improving epilepsy care across Scotland.
That is why we have listed it as our number one ask for the 2021 Scottish Parliament election.
We are asking the next Scottish Government administration to:
- Support the national roll out of this database in all health boards in Scotland.
- Recognise the importance of data to understand epidemiology and improve clinical outcomes.
You can read our full manifesto here which includes information on how you can get involved.