Speaking at today’s annual ‘Epilepsy Aware’ event in the Assembly, which he sponsored, North Wales AM Mark Isherwood called for improved support for people with epilepsy and a greater awareness of the condition, which affects up to 30,000 people in Wales.
Mr Isherwood, who Chairs the Cross Party Group on Neurological Conditions, noted that epilepsy is the most common serious neurological condition and that epilepsy-related episodes are the commonest reason for emergency health service activity, accounting for the largest number of bed days in our district general hospitals.
He stressed that around 50 people in Wales die each year as a direct result of epilepsy, 50% of which are attributed to Sudden Unexpected Death in Epilepsy, and that over 40% of deaths overall - and 59% of child deaths - could potentially be avoided through better management of the condition.
He said:
“Potentially 70% of people with epilepsy can have their seizures controlled with optimal treatment, advice and support around lifestyle measures. Currently, only 52%, of people have control.
“This 18% gap has costly implications both human and financial, to individuals, family and the wider community. And over 30% of people with epilepsy fail to gain control over their seizures.
“These people are at significantly higher risk of social isolation, exclusion from employment, lower levels of - health and wellbeing and at greater risk of social, emotional and mental health difficulties, epilepsy related accidents and death.
“The impact of epilepsy is far reaching. It has health, safety, social, economic repercussions for individuals, families and communities.”
Mr Isherwood said issues raised by Epilepsy Wales service users include: people living with disabling epilepsy do not have equal opportunities in health, education, leisure and employment, and that some areas of Wales do not have access to epilepsy services such as epilepsy nurses, advocacy and training services, including specialist health or education provision.
He added: “At this event last year, I concluded by quoting my constituent and neighbour, Donna Price, who told me: “Simply my goal is to bring a public awareness campaign, on what to do if someone has a seizure. Every day my life is in other people's hands. My seizures are unpredictable and scary to people around me at that time. We need to educate people on how simple actions can save lives.” My need for this is simple, I want to save lives and improve the quality of lives. I am an experienced epileptic and I know this will work”.
“She subsequently told me that she proposed a “Seizure Savvy” campaign focused on all seizures, not just those caused by epilepsy and she is currently planning a sponsored skydive to raise money for Epilepsy Wales.”