Ben's Family Story
Ben in hospital January 2019 V Ben well in January 2021
Paul & Joanne Griffiths
Ben has brain damage which causes him to suffer from cerebral palsy, developmental delay, sensory processing disorder, and intractable epilepsy. He has suffered seizures since he was born and tried over ten epilepsy medications, in multiple combinations, steroids, ketogenic diet, full surgery evaluation twice and nothing worked, in fact he just got worse, and the seizures were about 100 per day. In 2014 we learned of cannabis as a treatment but Doctors told us it was only being trialled on two conditions. When we asked again in 2016 and were told we still couldn't access it, we decided to buy some online cannabis oil. We used quite a few online CBD oils and saw no difference to Ben's seizures, but his cerebral palsy improved immensely.
Then in early 2018 after another drop seizure and head injury, a friend offered us a full extract medical grade cannabis oil, they had received from a Canadian clinic for their own condition. We had nothing to lose after so many medications had failed, so we tried it and Ben's seizures went from 100 per day to just 6. We ran out of the Canadian medication and despite a supportive NHS neurologist filling out the government access application in 2018, the Trust failed to approve, and Ben was given Epidiolex on compassionate grounds, but it quickly failed when he suffered side effects of the drug. Everyday life became difficult, and he was back in hospital now having up to 300 seizures per day. We created the Boisterous Ben social media pages to highlight what we were going through as a family and the real life struggle we faced.
When Ben left the hospital in late January 2019, he was still very poorly. His weight had plummeted from 25.8kg to just 21kg, and he was unable to walk unaided, drink, or eat. Since running out of the full extract oil in 2018, in Just five months, Ben had cost the NHS over £30,000. An urgent referral to Great Ormond Street Hospital could not be expedited so we looked for a private doctor.
On 5th March 2019 we attended the Portland Street Hospital, the neurologist agreed that Ben needed a full extract cannabis oil, and after hospital discussion he was privately prescribed bedrolite and bedica.
Ben has not needed to be admitted to hospital due to seizures since he started taking this medication over three years ago, a 98% reduction in seizures and he has seen his first ever seizure free days, he is learning new skills and learning to communicate, but to keep him so well we had to fundraise, use savings and borrow money.
We have tried every avenue to obtain an NHS prescription but unfortunately, policies are just not in place to allow access via the Hospital’s due to the costs that are placed on individual Hospital Trusts and fears around efficacy and safety until trials have taken place. Leaving private prescriptions, the only option available to desperate families, when all else has failed to help. The demand is so great that the private books for children are full, and the waiting lists are filling up too.
After watching other families struggle and children going into intensive care because their family could no longer afford the medication, I foundered along with a few other parents’ "INTRACTABLE" charity and hope to help struggling families with costs to keep sufferers safe.
Typical picture of Ben's life pre full extract medicinal cannabis.
Ben in hospital October 2018.
This is what a typical day in Ben's life looks like today.
Ben in June 2022