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NHS to offer licensed cannabis-based medicine to treat rare genetic condition

Updated: Feb 2, 2023


Yesterday the NHS announced they would now be able to offer prescribed cannabidiol to patients with a rare, seizure causing genetic disorder in England from 1st March 2023, once the National Institute for Health and Care Excellence (NICE) issue final guidance recommending it.


Tuberous sclerosis complex (TSC) effects one in every 6,000 people. Seizures severely affect sufferers lives and quality of life from a young age, and their families. Around 1,000 sufferers could benefit from the treatment when used along side antiseizure medications. In the placebo trials the cannabidiol medication Epidyolex, reduced the frequency of seizures by almost 30% compared to the placebo group. By reducing seizures you increase quality of life and reduce the risk of sudden death in epilepsy.


This is welcomed news for sufferers of TSC. The condition becomes the fifth indication to be approved by regulators and offered to NHS patients in England. Other indications include multiple sclerosis, Dravet and Lennox-Gastaut Syndrome, and adults experiencing nausea caused by chemotherapy.


Cannabis is now treating many conditions and many of those treated are children and young adults with rare or hard to treat epilepsies. Most of these are treated by private specialist doctors and medication costs can be up to £2,000 per month.



A recent written answer revealed that there was 11,976 people prescribed NHS licensed cannabis medicine and only 140 private prescriptions. Although there is less than five NHS prescriptions for unlicensed medicinal cannabis and a huge 89,239 people privately prescribed.


A recent study conducted on 36 children who suffered from treatment resistant epilepsy (TRE) saw a 90% reduction in children's seizures with the use of prescribed unlicensed medicinal cannabis containing small amounts of THC.


Charities and patient lobby groups like End Our Pain are calling for further trials to be conducted on the unlicensed cannabis that so many sufferers are now prescribed.


Intractable Epilepsy are the only registered charity able to fund medicinal cannabis prescriptions when prescribed by a doctor on the specialist register to treat children and young adults who suffer from (intractable) drug resistant epilepsy.(TRE) These families have turned to the charity after finding it increasingly difficult to fund the huge monthly prescription costs, due to the cost of living crisis and other personal factors. It is vital that drug-resistant epilepsy sufferers have a continued supply of their medication to maintain their enhanced quality of life and to keep them safe from increased seizures and sudden death in epilepsy. Any donation to help these children and families are greatly appreciated. Donate - Donation amount - JustGiving


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