Hosting and speaking at today’s Epilepsy Wales ‘Epilepsy Aware’ Event in the Assembly, ‘Supporting People with Epilepsy in Wales’, North Wales Assembly Member Mark Isherwood said that “the implications of living with epilepsy are far reaching for the individual and for the family” and called for better support and understanding of the condition.
Mr Isherwood also referred to last month’s extensive media coverage of Billy and Charlotte Caldwell, and of Alfie Dingley’s plight, each trying to secure access to medicinal cannabis to treat their epilepsy, and to the debate he led in the Assembly as Chair of the National Assembly for Wales Cross Party Group on Neurological Conditions, which noted the clinical evidence showing that cannabis-based medicines can alleviate the symptoms of conditions including epilepsy and called for the legalisation of cannabis on prescription for medicinal purposes.
Speaking at the event he said:
“Around 1,200 people die as a direct result of Epilepsy each year in the UK, of which about 600 deaths are attributed to Sudden Unexpected Death in Epilepsy. Over 40% of deaths overall - and 59% of child deaths - could potentially be avoided through better management of the condition.
“The implications of living with epilepsy are far reaching for the individual and for the family - and have costly implications for government and service providers”.
Referring to the Billy and Charlotte Caldwell case, he added:
“I hosted Billy and his Mother, Charlotte, when they visited the National Assembly for Wales to inform us about the benefits that Billy’s THC-a medicinal cannabis prescription has given him.
“When Billy’s Doctor was instructed by the Home Office to stop prescribing medicinal cannabis to Billy, I wrote to the Home Secretary in May highlighting the vital role that medicinal cannabis oil plays in managing his Epilepsy.
“Only yesterday, we heard the good news that that the Home Office had granted Billy a life time special exemption licence, ensuring he has access to his vital medication.”
He added: “People living with conditions should be able to make this decision without fear of prosecution and exposure to other drugs.
“In September 2016, the UK All Party Parliamentary Group for Drug Policy Reform emphatically called on the UK Government to legalise medical cannabis, based on the results of their 7 month inquiry into the issue and on the findings of an independent review of global evidence commissioned by them that ran alongside the Inquiry.
“The report heard that people are suffering unnecessarily - and that some in great pain are travelling abroad to find the cannabis they need to ease their symptoms - and concluded that all this could change by moving cannabis from Schedule 1 to Schedule 2, freeing up research and leading to new medicines for chronic pain, and disease.”
Mr Isherwood also referred to the need for Vagus Nerve Stimulation (VNS) therapy, which is proven to reduce seizure severity and intensity, and also has an impact on seizure onset and propagation. Additionally it reduces seizure duration and shortens the post-ictal (seizure) recovery period.
He concluded his speech by referring to his constituent and neighbour, Donna Price:
“When she was a child, her mother was told that her epilepsy would prevent her from having a job, marriage or children. She achieved all three and at this event last year I stated she was planning a sponsored skydive to raise money for Epilepsy Wales.
“She subsequently achieved this, raising over £1000, and tells me that she is now planning her next equally adventurous fund raiser.”