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Epilepsy and Medicinal Cannabis Awareness
Leading up to Purple Day on 26th March we will be sharing patient stories and real life experiences.
Please watch Ben's short film, made by his family.

Ben has suffered daily seizures all his life. He has bilateral cerebral palsy, sensory processing disorder, he is nonverbal, and has treatment resistant epilepsy.

He used to suffer between 80-120 seizures every day. The impact of this on his quality of life was huge, it also impacted on the whole family.

Ben has tried thirteen medications in various combinations, the ketogenic diet, and has been evaluated for surgery twice. He was at greater risk of suffering sudden unexplained death in epilepsy due to the number of uncontrolled seizures he had.

In early 2018 he tried a full extract cannabis oil from Canada which significantly reduced his seizures from around 100 per day to just six a day. His neurologist filled out the government access panel application in July 2018, but it was never sent by the hospital Trust. When Ben ran out of the Canadian cannabis oil in September 2018, Ben's seizures returned and many documented as being over 20 minutes long by hospital staff. Ben was then given Epidiolex. He suffered a reaction to some of the ingredients and in less than two months he was having over 200 seizures per day, ketosis, and extreme weight loss.

We had no choice but to go private. Ben has been on Bedrocan oils since April 2019. He has not had a hospital admission due to his seizures since. Ben has improved hugely over the past four years; he even has some seizure free days now. He has gone from having 8,400 seizures on a bad month to just 64 per month, they have also reduced in severity to no more than 10 seconds long. He is using more communication devices and is living a full life doing the things he couldn't do before he took medicinal cannabis. His improvement has had a positive effect on our family too. We have been able to help set up Intractable Epilepsy charity and help campaign with End Our Pain for the much needed access to medicinal cannabis on an NHS prescription.

Our private neurologist and our GP, put in an Individual Funding Request (IFR) and in July 2021 we went to an appeal, which we won. This was our sixth independent medical opinion, and second panel, to say this medication worked for Ben. This meant it had to go back to the original IFR panel to reconsider, they denied Ben funding again.

Our worry as a family with a child with complex needs, is that when we die, our child will not be able to access this medicine via the NHS. Many families cannot continue to fund the huge costs, which puts children and young adults in danger. Intractable is helping children and young adults in the short term but a long-term solution is vital to keep children like my son safe.

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