Here is a story of how this devoted mother’s tireless battle to save her 11-year-old son from crippling epilepsy led to him becoming the first Briton to be prescribed cannabis.
As a baby, Billy Caldwell was so desperately unwell that doctors declared he wouldn’t see his first birthday. Born with a severe form of epilepsy and learning disabilities, he has cheated death thousands of times.
Billy, now aged 11, suffers from particularly vicious seizures which cannot be controlled by medication. But after years of ineffective treatment and – at its worst – suffering up to 100 fits a day, his condition is finally under control.
Last week, Billy became the first Briton to be prescribed medical marijuana on the NHS. The liquid cannabis oil – a natural plant extract – has led to him not suffering a single seizure in three months. What makes his story even more unusual is that the medication is not licensed for prescription here due to its links with narcotic cannabis.
The landmark case is likely to pave the way for more epilepsy sufferers to demand such treatment. Indeed, Billy’s GP has called for the Government to open the debate and back further research into medical use of cannabis.
Billy, from Castlederg, Co Tyrone, Northern Ireland, was originally prescribed cannabis oil in the US after his desperate mother Charlotte took him to a world-renowned paediatric epilepsy specialist in California. Medical use of marijuana has been legal there since 1996.
Dr Douglas Nordli, co-director of the Neurosciences Institute at Children’s Hospital Los Angeles (CHLA), formulated a comprehensive care plan and spent several weeks perfecting the correct dose for Billy.
The results were remarkable. ‘He went from having 25 seizures a month to about eight – and he’s not had one for three months,’ says Charlotte.
But back home a few weeks later, and with promises of help from local doctors falling flat and Billy’s supply of cannabis oil running out, she was terrified for her son’s health. In desperation, she begged her GP for help.
Realising the ‘unique and unusual’ situation, Dr
Brendan O’Hare agreed to write a repeat prescription – and a pharmaceutical firm in Dublin supplied the medication.
As a result Charlotte, 49, who is Billy’s full-time carer, will be able to collect the drug from her local pharmacist. Billy takes two types of cannabis oil. The first is cannabidiol (CBD), a derivative of cannabis which the UK watchdog, the Medicines and Healthcare Products Regulatory Agency (MHRA), allows doctors to prescribe.
But he also has an oil containing the compound tetrahydrocannabinolic acid (THCA), which, when exposed to heat, forms the psychoactive component of cannabis.
THCA is, strictly speaking, illegal in the UK. It is categorised as a Class B drug alongside amphetamines and barbiturates. However, when given in medicinal form – and not burned – THCA does not have the narcotic effect that smoking cannabis has.
Epilepsy, which affects more than 500,000 Britons, is a fault in the electrical activity of the brain. Experts believe compounds in cannabis help to control seizures, although it is not yet fully understood why this happens. Billy has four 0.6ml doses of both flavourless liquids a day, administered under his tongue with a syringe. Although Charlotte claims that Billy’s British neurologists ‘gave up on him’, she is careful to point out that ‘ his treatment has been medically supervised the whole way along’.