Prynhawn da a chroeso, good afternoon and welcome.
And thank you to Epilepsy Wales for again inviting me to sponsor and welcome you to this Epilepsy Aware Event, “Supporting People With Epilepsy in Wales”.
This event is your opportunity to have your say, raise issue and share your experiences.
We will hear from speakers about their experiences, including “Joshua's story" followed by "my Glut1 child", before finally moving onto questions.
Epilepsy Wales will pass on any questions or issues which are raised but not dealt with today to your relevant Assembly Members.
Epilepsy is the most common serious neurological condition.
There are around 20,000 – 30,000 people with epilepsy in Wales.
It is three times more common than multiple sclerosis and more than three times as common as Parkinson's disease and cerebral palsy.
Approximately 1,500 people develop epilepsy each year.
1 in 10 will be children under 18, 1 in 5 will have learning difficulties.
Epilepsy misdiagnosis rates are between 20 to 31%.
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.
Today’s event is very timely after the last month of 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.
As I am sure you are aware, this resulted in the Home Secretary’s announcement of a review of medicinal cannabis. More about this later.
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.
Billy used to suffer up to 100 seizures a day until he began treatment with cannabis oil. However, since successful treatment with medicinal cannabis in Los Angeles by a children's’ epilepsy specialist, he has been virtually seizure free.
On return from Los Angeles Billy became the first person to be prescribed medicinal cannabis on the NHS in April 2017.
Charlotte has been campaigning for medicinal cannabis from the NHS, recognising the desperation felt by many families fighting to be afforded the same access to medicinal cannabis that she fought so hard for.
However, she is adamant this is a separate issue entirely to debates over recreational cannabis use and that these must not become confused.
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.
Their visit followed a debate in the National Assembly for Wales, which I led as Chair of the National Assembly for Wales Cross Party Group on Neurological Conditions.
This 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.
The motion was passed on a free vote.
The debate centred on the compelling clinical and anecdotal evidence of the effectiveness of cannabis for medicinal use.
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.
Professor Mike Barnes, a UK neurologist and rehabilitation Consultant, has highlighted dozens of peer-reviewed research papers that have proved the efficacy of medical cannabis. He said such drugs have alleviated pain “in all its manifestations”, treated muscle spasms, anxiety, and nausea and vomiting in patients undergoing chemotherapy.
He also said there was evidence that medicinal cannabis was successful in helping people with epilepsy and sleep disorders, and described the side effects associated with using the drug in a medicinal setting as minimal.
He added that “thousands of people with chronic conditions can benefit from this drug that has been around for centuries”.
Last month the Home Secretary Sajid Javid announced a review of medicinal cannabis by the Home Office and Dame Sally Davies the Chief Medical Officer for England and Chief Medical Advisor to the UK government .
The Home Secretary confirmed to the UK Parliament that if the review identifies significant medical and therapeutic benefits, then the intention would be to reschedule cannabis for medicinal use.
Professor Mike Barnes said that “the announcement of this review panel offered hope to thousands of patients and parents across the UK, but said that its approach needs to be looked again with urgency to ensure that all patients can receive the medication they need”.
I hosted and Chaired a round table meeting in the Assembly to discuss the legalisation of cannabis for Medicinal Use with Professor Mike Barnes, Dr Waqar Rashid, Consultant Neurologist and MS Society UK Clinical Advisor, Welsh Government Officials and MS Society representatives.
The Welsh Government officials informed us that they would have a seat on the review and that they would wait for the outcome of the review before moving forward.
We will also hearing at this event from John Forsey and Oliver Williams, who represent medical technology company LivaNova which focuses on “transforming medical innovation into meaningful solutions”.
They will be doing a presentation on Vagus Nerve Stimulation, or VNS.
VNS Therapy was approved in the EU in 1994 for use as an adjunctive therapy in reducing the frequency of seizures in patients whose epileptic disorder is dominated by partial seizures (with or without secondary generalization) or generalized seizures, which are refractory-or resistant to anti-epileptic medications.
The Therapy is delivered through a system (a battery and lead) that sends mild electrical pulses via the vagus nerve to areas of the brain known to be associated with seizures - preventing the electrical storm that is a seizure from taking off.
It is a proven long-term solution already being used by more than 100,000 people around the world.
The latest advancement in VNS Therapy is the Detect & Respond technology, a clever facility that detects a rapid rise in heart rate, which is often associated with a seizure. The technology responds to this rapid increase in heart rate by automatically delivering an extra dose of therapy to disrupt seizure activity.
VNS therapy is proven to reduce seizure severity and intensity, it also has an impact on seizure onset & propagation. Additionally it reduces seizure duration and shortens the post-ictal (seizure) recovery period.
VNS Therapy reduces epilepsy co-morbidities; helping improve mood, alertness, energy and cognition. VNS has fewer side effects than medications and the drug burden can be reduced over time.
VNS Therapy is supported by more than 1200 publications on safety, efficacy and quality of life improvements.
We look forward from hearing more from them.
At this event last year, I concluded by quoting my 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.
So thank you for listening to me and I hope you enjoy the rest of today’s event.