Not knowing how many people who have the condition makes it very difficult to plan services on a population basis. It also limits knowledge and further research into the condition.
Dr Craig Heath and Dr Ian Morrison have developed a database of people with epilepsy. The primary aim of the database is to improve clinical outcomes in people with the condition.
Challenges people face with epilepsy
At a recent Cross-Party Group meeting, the two clinicians presented the register pilot. They outlined many challenges that people with epilepsy face which the register may be able to improve:
- One third of patients will never achieve seizure freedom, despite advances in pharmaceutical medicine.
- The register provides a platform for research to understand why this exists. It may also allow clinicians to take steps to improve people’s seizure control.
- Mortality rate for people with epilepsy is two to five times higher compared to the general population. Life expectancy is ten years shorter.
- The register notifies clinicians of any deaths. This will allow them to review and improve their clinical practice. It will also encourage more research to try and reduce mortality rate.
- 23% of people with epilepsy do not take their medication as prescribed. This group of people are two to three times more likely to die.
- The register notifies clinicians of poor medication adherence. This allows them to take steps to encourage patients to take their medication and hopefully reduce the mortality rate.
- Maternal outcomes are poorer for people with epilepsy.
- The register notifies clinicians of any pregnancies in women with epilepsy. This allows them to provide extra support to help maintain seizure control during pregnancy.
This project is one which could revolutionise the way epilepsy is understood and managed in NHS Scotland.
The MS register
The MS register is an example of how important this work is. Since the register was established nine years ago, people with MS see their specialist nurses quicker after diagnosis. Health boards are also held to higher standards.
Additionally, the register has shown that incidence rates of MS in NHS Orkney are over double to those in NHS Borders. This information has encouraged further research and understanding into the condition.
The Convener for the CPG on Epilepsy, Alasdair Allan MSP, is going to write to the Scottish Government to ask for their support to nationally rollout the epilepsy register.
Epilepsy Scotland is fully supportive of the epilepsy register. The policy team are working hard to see it in place across Scotland. We believe it will drive up standards in epilepsy care and knowledge.
In the next blog post, we will discuss recent research which has come about because of this register.