A third of epilepsy sufferers have not had review in 12 months
ONE in three people with epilepsy do not have access to a specialist nurse, according to new research.
Epilepsy Action Northern Ireland's study looked at people’s experiences with healthcare services before the COVID 19 pandemic and found even in groups of patients at higher risk of harm because of their condition there were significant gaps in nursing service.
The research found more than half of those who do have access to the specialist care "do not get to see their nurse often enough".
This includes people who have seizures every single day and those with other conditions like learning disabilities, autism or mental health illness.
The charity said a third of people with epilepsy in Northern Ireland who do have access to an specialist nurse have not seen them since their diagnosis.
Epilepsy specialist nurses offer support with medication, managing the risk of having seizures and coping in day-to-day life, as well as supporting benefits applications and with education or employment.
Debbie McCrudden (34) from west Belfast said when she was first diagnosed with the neurological condition in 2014 she was given a direct number to an
epilepsy nurse and was in regular contact about medication.
However, after the nurse retired "it is very difficult to get regular contact with an epilepsy nurse as here there aren't many of them".
Her seizures increased during her second pregnancy and has now changed her medication.
"It's a huge challenge having a baby and toddler and living with uncontrolled epilepsy. I'm now seven months post-partum and again have no contact with an epilepsy nurse.
"With less contact, I feel in limbo waiting to hear from a consultant. I'm unsure whether it's OK to call for advice. I’m right in the middle of a medication change and only call when it’s absolutely necessary, as I know there are so few nurses and a huge amount of patients and queries for them to work on."
The charity estimates 30 nurses are needed. There are currently only three full time and one part time nurses and none at all in three out of the five
A third of those surveyed have not had an epilepsy review in the past 12 months.
Carla Smyth of Epilepsy Action Northern Ireland, said it "confirmed what we already knew".
"We know that some people are waiting for an extremely long time to see neurologists and epilepsy doctors. And that, in 2020, many of these appointments
have become virtual, or even been cancelled. The lack of access to epilepsy specialist nurses will mean that a lot of people are at risk of falling through the
She said the current review of neurology services "is an important step".
Dr Michael Kinney, consultant neurologist with subspecialist interest in epilepsy said specialist nurses are "vital team members" and "provide essential advice and support during and as importantly in-between appointments".