A mother from St Neots is continuing to fight for a change in the law to help her severely epileptic daughter enjoy a “normal life”.
- Credit: Archant
Lucy was having up to one hundred seizues each day until she was give CBD oil
A mother from St Neots is continuing to fight for a change in the law to help her severely epileptic daughter, who for the first time in 15 years was able to enjoy a "normal Christmas" thanks to a controversial drug.
Lucy Conrad, 15, from Little Paxton, previously had up to one hundred seizures a day, some of which could last for up to five hours, but since taking canabid oil (CBD), she hardly has any seizures.
For the first time since Lucy was born, her mum Debbie, has said that Lucy and the family were able to enjoy a "normal" Christmas, which was not disrupted by seizures.
Lucy, who currently attends Samuel Pepys special school in St Neots, has tried a number of different treatments over the years to help reduce the number of seizures that she suffers, without much success.
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However, she started taking legal CBD oil in March 2017 and her mother says that the treatment helps to control her seizures and has changed her life.
Cannabinoid, which is also known as CBD, is legal in the UK as long as its tetrahydrocannabinolic acid (THC) content is less than 0.2 per cent, but it cannot be prescribed by doctors due to the fact that is currently unlicensed.
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For that reason, Lucy currently has to be taken out of school because local authority policy states that she is not allowed to receive the oil treatment on site as it is unlicensed.
For that reason, Lucy currently has to be taken out of school because council rules mean she isn't allowed to receive the oil treatment on site.
Debbie and Lucy's dad Chris currently have to administer the drops every two hours, and are calling for the drug to be given medical licence so that Lucy can be given them at school.
Debbie said: "I have spent the last year having to take Lucy out of school every two hours, so I can give her the medicine that she needs. We have tried so many drugs in the past and none have worked as well as this. But I am worried as it's not fair to Lucy having to come out of school every two hours, and it really doesn't allow me to carry on with my life."
Debbie has also said that she has considered taking Lucy out of school full time due to the disruption that administrating the drug has had on her family's life.
"I have actually had a hard think about whether she would be better at home, but anyone who knows Lucy will know that she is so sociable so it just wouldn't be fair.
"The whole situation isn't fair at all. Lucy loves the school so much and it isn't up to them as their hands are also tied too," Debbie said.
CBD is not classed as a medical grade, meaning it hasn't had the stringent testing that the pharmaceutical CBD has to go through to satisfy medical authorities. As such, it is classed as a food supplement. However, it still is not allowed to be prescribed by a doctor meaning that schools aren't able to administer it.
However since taking the drug, Lucy has been able to start to have a normal life again, which has meant her taking up hobbies such as horse riding and dancing.
"We feel like she has got a life now, and is doing what normal teenagers would do. It's still so frustrating that she can't have the drug at school, and it's getting to the point where we don't know where to turn. I feel like we are being passed from pillar to post,"
Last year, Lucy went 80 days seizure free before suffering a few mini-seizures. Debbie has said that her seizures have become progressively shorter and less frequent, giving Lucy a better quality of life.
"We are desperate for help. We have exhausted every option. It's not the schools fault, but the regulation around it. But I would like authorities to look at our case again, because it is obvious that it is not working.
"All we are asking for is for her to be able to live life. It isn't fair that we have to sit outside in the car with her during school. She even eats her lunch in the car, and Lucy is so friendly, it isn't nice for her."
A spokesman for Cambridgeshire County Council said: "Under current Government guidelines, schools are not able to administer any unlicensed medicines or substances to pupils.
"We are aware that there have been a number of clinical trials which demonstrate that CBD oil can have a therapeutic effect for children with epilepsy.
"The school, the local authority education team and partners from health and social care continue to work closely with the family to explore options and provide support within the current legislation and guidelines."