The parents of a four-year-old girl with epilepsy are pleading for access to medicinal cannabis on the NHS.
Clover, from Frome, in Somerset, has Aicardi syndrome, a rare genetic neurological disorder which causes her to have hundreds of seizures a week.
Her parents say cannabis oil reduces the number of seizures by 90%, but it costs almost £1,000 a month.
The Department for Health & Social Care (DHSC) said it takes an evidence-based approach to unlicensed treatments.
A spokesperson added: “Licensed cannabis-based medicines are routinely funded by the NHS where there is clear evidence of their quality, safety and effectiveness.”
Clover was diagnosed with Aicardi syndrome when she was three-years-old.
Part of the syndrome is a type of epilepsy which is difficult to control, and Clover’s parents, Spencer and Emily, tried using frontline medications without success.
They said the seizures continued to get worse and she was having hundreds every week.
They got in touch with other families who helped secure a private prescription for Clover.
She started taking medicinal cannabis in August 2020 and within three months the number of seizures she had reduced by about 90%.
Emily said: “A seizure could kill her. A seizure could undo everything she’s learned.
“Seizures are extremely powerful, frightening and dangerous, and the risk to her is monumental.
“If we don’t have the medication that keeps those seizures at bay, then goodness knows what would happen.”
Although cannabis oil was legalised for medical use in 2018, very few people are routinely prescribed it by the NHS, and this can only be done by a small group of specialist doctors.
Emily said: “After she started the prescription, we got our lives back, we were able to go out and do things rather than watching, monitoring and waiting for the next seizure.
“It was freedom for our family.”
Each month a private consultant assesses Clover’s health and sends a prescription to a Scottish pharmacy which imports the cannabis flower from Holland and produce the oil.
Emily added: “We are fortunate to live in a tight-knit community, our family and friends pay about 50% of the monthly bill.
“It is enough pressure to have a disabled child, but having to pay for a prescription that keeps them well, it’s just too much.”
A DHSC spokesperson added: “In 2018, we changed the law to allow specialist doctors to prescribe cannabis-based products, where clinically appropriate, and making it easier to conduct research on these products.
“We are taking an evidence-based approach to unlicensed cannabis based treatments to ensure they are proved safe and effective before they can be considered for roll out on the NHS more widely.”
Source: BBC
