Epilepsy Action Northern Ireland has launched a campaign for better epilepsy health services for people with epilepsy. We would like to see an increase in the number of epilepsy specialist nurses in Northern Ireland. We would also like to see the creation of an epilepsy database, or register.
We are asking members of the Northern Ireland Assembly to work with us to make these things happen. There was a debate on these issues at Stormont on Monday 3 October.
What's the issue?
There are around 20,000 people in Northern Ireland living with epilepsy. This means that one person in every 90 people is living with the condition.
Epilepsy specialist nurses are at the heart of caring for people living with epilepsy. These vital nurses promote good practice and act as a specialist resource. They help in the diagnosis, treatment and care of people with epilepsy. They also manage clinics and offer people counselling, advice and discussion on their condition. They also work between GP practices and hospitals, developing the knowledge of GPs and practice nurses.
In 2007 the Welsh Neuroscience External Expert Review Group recommended that each specialist nurse should have a caseload of around 300 patients. If we apply this recommendation to Northern Ireland, it means there should be approximately 40 specialist nurses for adults with epilepsy in Northern Ireland. There are still only 5.
What we are doing
Epilepsy Action Northern Ireland is calling for more investment into additional resources. We want the relevant agencies to work together to increase the number of epilepsy specialist nurses in Northern Ireland.
In addition we are asking for the creation of an epilepsy register. The proposed register would contain an electronic record of people's epilepsy. It would be used by clinicians to improve the care people with epilepsy receive.
On Monday 3 October, there was a debate in the Northern Ireland Assembly led by George Robinson, Chair of the All Party Group (APG) on Epilepsy. He will be putting forward a motion "for a patient led approach to epilepsy service provision with particular emphasis on the protection and extension of Epilepsy Nurse Specialists, and the creation of a database…"
Members of the APG on Epilepsy, including Epilepsy Action Northern Ireland, would now like to meet with Michelle O'Neill, the Minister for Health. We hope to share our ideas and plans for the future improvement of epilepsy services in Northern Ireland.
How you can be involved
You can tell us about your experiences. Do you live in Northern Ireland? Would having access to an epilepsy specialist nurse make a difference to your life? Perhaps you have an epilepsy specialist nurse already and want to share your story.
Email us at firstname.lastname@example.org to find out how you can help.